# My "helper" is down...!



## robutacion

Hi peoples,

Recently I have seen some agonizing threads from IAP friends, having their wife's going through some bad times, and today after I read the good news about Curtis' wife, I started feeling really bad about the fact that, my my wife Merissa, is also experiencing some bad times, she can't walk (right left knee and muscle troubles, and her hands are all swollen with lumps and plenty of pain.  

This has been going on for over 2 months, and test so far indicate that most of it is coming from some damage cause in her spine from an bike accident she had when a young girl.  

A few people know about it and I felt that, I was not doing her "justice" by not dedication my own thread about her condition and difficulties, when in reality, she was the only person to be by my side throughout all my attempts to salvage/cut/gather and bring the wood home/storage paddock...!

I have constantly mention her as my "helper" as she is a country girl, a lot younger than me, built strong and used to hard work.  When me met 14 years ago, I was still working hard and very agile but that all changed a few short years later, as I was expecting.

Merissa became my right hand on everything, we are together 24/7 and we share the good and bad moments however, I/we didn't know that she was carrying spine problems and other complications from that accident and other damages caused from the extreme hard work she done for years, before we met, Merissa is now 41 years old...!

Since we moved here, to this beautiful part of South Australia, I explained to her how important would be that we could gather as much wood as we could, not only as firewood but also for woodworking stock, that I starting to use as my woodturning hobby.

I was using a lot of wood then, as I got into making big bowls and other big pieces, was normal to bring 1 tonne (trailer full) of wood home and in a single week I would have it all cut up and turned into green turned pieces and put away for drying, bags and bags of shavings and sawdust come out of that little woodturning room, every week, crazy stuff...!

I could not have done half of all that work without Merissas' help and quite often, I shared this though and pics of her working/helping me out with the woods.

In the workshop, she is always doing something, keeping the floor walkable, bin boxes emptied, do some pen blanks sanding, marking and waxing, amongst other stuff, including doing all the Post Office parcels posting, every morning...!

We both had our both hands operated on (Carpal Tunnel), in recent times and since she experience some major troubles with her right knee that decided to stop working.  Since then she recovered from that but never fully, she would lose her balance and fall without warning.

Merissa is not exactly a "small" girl with a big bone structure so, falling down hard a few far too many times, didn't help her much, in fact, we think that, some of the problems were cause from a fall she had last year where she landed on top of sharp pointed wood, on her hip and back...!

These last two months, Merissa hardly can walk, she can't stand up for more than a couple of minutes and her hands started to hurt, get swollen and lumpy, something that we still not know what is causing it.

Merissa done a lot of test recently but, none has produce new results, apart from those already know, mainly from her spine, she done some more test very recently and will only know the results, next Wednesday when we both see our GP/ doctor, strong pain killers can only do so much so, we hope that her situation will be able to improve as soon as the doctors have something to work with...!

Once again, I feel that Merissa deserves to have a thread dedicated to her, many of you have received the results of her work also so, is only fair that she gets the recognition she deserves...!

We are not religious but we accept other peoples beliefs, we do believe in "Karma" though, we reckon that, what goes around, goes comes around and in certain occasions, in more ways than one...!

I feel a little better now...!

Cheers
George


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## Lucky2

George, prayers are being sent your way for Merissa and you both. Hopefully, you'll get some of the answers to the questions that your looking for on wednesday. While reading this post I got to thinking what would I do if my wife were to ever get desperately ill, I would be lost and afraid especially, if there were no answers to what the problem was. Please take care, and keep us informed of her diagnosis.
Len


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## Cmiles1985

Best wishes to Merissa and you George. I'm hoping for a speedy diagnosis and recovery for her.


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## Curly

Marla and I wish the best outcome for your helper, and you too.


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## TimS124

Wishing you both all the best!


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## Jim Burr

Chin up young man...prayers for both of you!


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## SteveG

I can easily sense the strong bond that exists between you two. It is real tough to see your "other half" having to deal with severely limiting circumstances, and so I wish the best for you both. I hope the awaited medical news is good, that she can look forward to some real improvement. Hang in there, and keep looking for the bright side...it is there somewhere.


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## robutacion

Thanks friends, 

I believe she will feel overwhelmed by your thoughts and words, she is not a computer person, I tried, didn't work, Merissa is happy that I take care of that side of things however, that makes her miss out on this way of communication that can really become like, being in a big room and conversing with everyone however, I don't mind so much when she misses out on some less friendly "conversations that so often, come and rock the boat.

Anyway, Merissa will be reading all and every one of the posts left for her, I'm sure that will put a smile in her face, that good enough for me...!

Cheers
George


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## woodwizzard

Sounds like ruptured disks, not seen on x-rays.  An MRI can show the problem and suggest solutions.


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## Monty

Will keep her and you in my thoughts and prayers that the doctors can find and fix the problem.


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## BRobbins629

Good thoughts for both of you.


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## mark james

My thoughts and prayers are with you and Merissa!  The bond and love between you and her are obviously strong - Please keep us up to date - it helps to know that others care!


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## Jim15

Good thoughts and prayers will be offered for your wife.


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## rholiday

You both are in my thoughts.


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## truckfixr

Wishing the best for you both.


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## Bob Wemm

George and Merissa,
Sorry to hear that Merissa is not flying very high. I knew she was not so good but didn't realise the whole extent of her woes.
I really hope that the news from the latest tests result in some improvement for her.
All the best,
Bob and Betty.


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## southernclay

Prayers sent for both of you from my family. I hope you are restored in no time


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## Krash

George, I am praying for Merissa and for you as you walk through this trial with her as he support and encourager. The most blessed thing a man can have is a wife and companion that complements his life in ways he does not even know. It sounds like God has done that for you in Merissa. 
Life is hard and full of challenging situations and how you walk through them reveals your character. Walk well my friend regardless of the outcome for that is what The Lord calls us to do. 

Praying for you and Merissa


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## plantman

George; May the Gods smile down on you and Merissa !!!  Both of you are hard working top shelf people. Bonnie's and my prayers are with you.   Jim  S


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## gimpy

Best wishes to Merissa and you George, 

God's Peace


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## Argo13

Thoughts and prayers for the both of you.


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## George Watkins

I hope that you are both on the mend soon George.


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## Rockytime

Prayers going up for Merissa and you. I pray for God's healing to touch both of you. My wife is also my right hand and has been for over 50 years. Hopefully I will expire first. I could not do without her.
Blessings, Les


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## Akula

Sent up


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## Rick_G

Praying for Merissa and yourself George.


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## flyitfast

George, what a team you both are. All the prayers and positive thoughts are there for you and Merissa. Pain is always difficult to deal with - may the faith in your lives stregthen the help the doctors as they find a way to ease the pain and suffering.
Always with you both.
Gordon


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## dbledsoe

George:
Best wishes for a speedy recovery for Merissa. I hope everything turns out good.


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## tonychar

*tonychar*

hi George I was down at you place two years ago and seen you and Merissa then I was there for the afternoon you sold me some pen blanks and showed me how to use those discs on the grinder I still use then and show others thanks to you. you wife made us feel very welcome down there. I hope you get some good news soon.
A I see a pain doctor down that way you need your gp to send you there it is moore st clinic willunga dr reece henning.it cost but medicare covers I see him for my back it might help you out in future I hope to come back down soon to get some more blanks till then 
wishing you both all the best and Merissa rest up NO LIFTING till you know more.


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## Edward Cypher

Prayers being sent George for you and yours.


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## robutacion

Hi everyone,

Merissa is just seated next to me reading your messages and I could see a tear in her eyes, she thanks everyone for the thoughts and wishes...!

Merissa is a very special gal, she knows that I speak often of her on IAP and that I wrote many wood stories where I tell everyone, the very important work she does to help me out, some time there are a few pics with Merissa on the background and some on the foreground, Merissa tends to believe that no one gives any attention to her contribution.

This is mainly due to the fact that, (and previously mentioned) she doesn't want to have anything to do with computers, she is happier that way, she prefers her cross words and her film watching, I have no problem with that however, that also contributes for her assumption that no one cares, and while I show her many post where I speak of her, she doesn't follow the follow ups and miss a lot of what other say about her work...!

This was exactly one of the reasons why I decided to dedicate this thread to Merissa, not only because she is not doing too well at the moment, but also to make her realise that infact, a lot of people are aware of how much she helps me with the woodwork and life in general...!

Merissa has been very stressed out about not being able to do the normal things she normally does, she gets frustrated and angry with herself, particularly in the mornings where, getting out of bed is a painful and slow exercise, then her hands are so swallowed and saw that she can do anything, not until she takes the medication and the Oxycontin 15mg starts to numb the pain slightly.

I have been through all that a few times myself, I know out if feels, I wasn't expecting Merissa to develop that sort of problem, not this soon, and I can't stop not feeling guilty to the fact that, was a lot of the heavy lifting and hard work that I requested from Merissa that, make the situation so much worse...!

I have enough spinal problems to know that, I may need all sorts of "help" in the near future, and I have been preparing Merissa for the inevitable, something that she is well aware off since day one, I thought that, she being so much younger than me (41 - 57)  would help her to cope with the physical demands of a wheel-chair bound person however, those prospects are slightly changed, for me due to some "interesting/puzzling" internal changes in my spine, in recent years but that, is an issue for another thread, one day so, with the recents "events" I'm starting to wonder, who will need to look after who...??? I thought that I did know the answer, not anymore and that, scares the living life out of me, how am I going to manage that, with my deterioration predictions..???

Make no mistake, I'm not done yet, nor I think that Merissa won't improve, 
I will continue to help her, in any way I can, regardless if on 2 feet, on my knees or on my hands, she know that too however, the thoughts are quite scary and we can not disregard any and all possibilities, this has got nothing to be with being negative and or pessimist, is simply considering the options and being as prepare as one can be, if ever...!

With this said, anyone that know me will know that, i don't give up that easy if ever, I am the most determined person you will ever met and know about, and I always say, impossibilities don't exist in my books, I consider those as "things with a greater degree of difficulty", stubborn...?? you bettcha...!:wink::biggrin:

Life goes on...!

Cheers
George


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## plantman

robutacion said:


> Hi everyone,
> 
> Merissa is just seated next to me reading your messages and I could see a tear in her eyes, she thanks everyone for the thoughts and wishes...!
> 
> Merissa is a very special gal, she knows that I speak often of her on IAP and that I wrote many wood stories where I tell everyone, the very important work she does to help me out, some time there are a few pics with Merissa on the background and some on the foreground, Merissa tends to believe that no one gives any attention to her contribution.
> 
> This is mainly due to the fact that, (and previously mentioned) she doesn't want to have anything to do with computers, she is happier that way, she prefers her cross words and her film watching, I have no problem with that however, that also contributes for her assumption that no one cares, and while I show her many post where I speak of her, she doesn't follow the follow ups and miss a lot of what other say about her work...!
> 
> This was exactly one of the reasons why I decided to dedicate this thread to Merissa, not only because she is not doing too well at the moment, but also to make her realise that infact, a lot of people are aware of how much she helps me with the woodwork and life in general...!
> 
> Merissa has been very stressed out about not being able to do the normal things she normally does, she gets frustrated and angry with herself, particularly in the mornings where, getting out of bed is a painful and slow exercise, then her hands are so swallowed and saw that she can do anything, not until she takes the medication and the Oxycontin 15mg starts to numb the pain slightly.
> 
> I have been through all that a few times myself, I know out if feels, I wasn't expecting Merissa to develop that sort of problem, not this soon, and I can't stop not feeling guilty to the fact that, was a lot of the heavy lifting and hard work that I requested from Merissa that, make the situation so much worse...!
> 
> I have enough spinal problems to know that, I may need all sorts of "help" in the near future, and I have been preparing Merissa for the inevitable, something that she is well aware off since day one, I thought that, she being so much younger than me (41 - 57)  would help her to cope with the physical demands of a wheel-chair bound person however, those prospects are slightly changed, for me due to some "interesting/puzzling" internal changes in my spine, in recent years but that, is an issue for another thread, one day so, with the recents "events" I'm starting to wonder, who will need to look after who...??? I thought that I did know the answer, not anymore and that, scares the living life out of me, how am I going to manage that, with my deterioration predictions..???
> 
> Make no mistake, I'm not done yet, nor I think that Merissa won't improve,
> I will continue to help her, in any way I can, regardless if on 2 feet, on my knees or on my hands, she know that too however, the thoughts are quite scary and we can not disregard any and all possibilities, this has got nothing to be with being negative and or pessimist, is simply considering the options and being as prepare as one can be, if ever...!
> 
> With this said, anyone that know me will know that, i don't give up that easy if ever, I am the most determined person you will ever met and know about, and I always say, impossibilities don't exist in my books, I consider those as "things with a greater degree of difficulty", stubborn...?? you bettcha...!:wink::biggrin:
> 
> Life goes on...!
> 
> Cheers
> George



George; If you prepair yourself for the worst, you won't be disapointed when things turn better !!    Jim  S


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## thewishman

Prayers sent for you and Merissa. Best wishes to you both.


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## nava1uni

I certainly hope that they can figure out what is wrong with Merissa.  It is difficult to watch those we care about be ill.  Sending healing energy in your direction.


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## plano_harry

George, I am praying for you and Merissa.


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## nativewooder

Jorge & Merissa, God is Great.  Believe it!


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## scotian12

George and Merissa...our good thoughts and prayers are going your way. Our hope is that the doctors will soon find a way to bring you both back to good health.


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## Russknan

George, my good friend whom I have yet to meet, I was so disappointed to hear about Merissa's difficulties as I just came across this thread. It is so hard to see a loved one in pain. With the wonderfully close relationship you two have, I'm sure that you would choose to take it all, if you could. But we have to hope that the doctors will devise a solution to her - and your - neurological issues. With the rapid advances in medicine these days, perhaps there will be a new treatment that will stop any deterioration and even fix what's there. Certainly, that is my hope. Best wishes to you both! Russ


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## robutacion

tonychar said:


> hi George I was down at you place two years ago and seen you and Merissa then I was there for the afternoon you sold me some pen blanks and showed me how to use those discs on the grinder I still use then and show others thanks to you. you wife made us feel very welcome down there. I hope you get some good news soon.
> A I see a pain doctor down that way you need your gp to send you there it is moore st clinic willunga dr reece henning.it cost but medicare covers I see him for my back it might help you out in future I hope to come back down soon to get some more blanks till then
> wishing you both all the best and Merissa rest up NO LIFTING till you know more.



Once again, thank you all for your thoughts and words, Merissa is pretty much the same, maybe a very slight improvement in her leg movements, not much but at least, she is not getting worse and Doctor visit is only a couple of days away so, we wait and see...!

Merissa appreciates to know that, people know of her work involvement with this hobby of mine and that, people is kind to her, just what the doctors prescribed to warm her heart and create a tear in her eye, thanks folks...!

The weather has been wet, cold and humid, three things that don't help much people with bone/joints problems, this is Winter and expected so part of nature, we tend to say that, it all come at the wrong time however, I don't think that would ever be a "good" time for these things, sometimes we just need to be able to blame someone or something, it may not resolve anything but releases some steam, huh...???:biggrin:

*Tony*, sorry for the delay in replying to your post...!
Is great to know that, among so many people that are far too far away for a visit, there is always someone that have been here and me us personally.  If I was the "liar type", the lies wouldn't last long, people that visit get to see what kind of people we are and, will easily verify that Merissa is just a beautiful soul, always willing to do something for you, even if you are a complete stranger. She makes sure, you don't go hungry and thirsty, among other things...!:wink:

She will get better...!

Cheers
George


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## johncrane

Sorry to hear this George! it wouldn't be easy seeing Merissa in pain i wish you both all the best.


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## Band Saw Box

So to hear about Merissa, I know she her in pain and not able to do much is hard on you both. Evelyn and I we'll lift you both up in prayer. We are going to believe in a full recovery for her.


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## sbwertz

Has Merissa been tested for Rheumatoid Arthritis?  There are really no definitive tests for RA, so it often goes undiagnosed.  Usually there is an elevated  sedimentation rate (sed rate) and often an elevated rheumatoid factor on a blood test, but often these two indicators are not present.  If it IS RA, there are wonderful new treatments for it.  When I was first diagnosed, I was like Merissa.  My hands were so swollen that I could not even tie my shoes.  All my joints were sore.  Now, because of the new meds for R A I have been in remission for ten years.  I have almost no symptoms, and those I do have are primarily osteoarthritis, not RA.  

You might take her to a rheumatologist for testing.  They wil do an MRI of her hands to see if there is joint damage.  That is really the only way to be positive it is RA.


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## robutacion

sbwertz said:


> Has Merissa been tested for Rheumatoid Arthritis?  There are really no definitive tests for RA, so it often goes undiagnosed.  Usually there is an elevated  sedimentation rate (sed rate) and often an elevated rheumatoid factor on a blood test, but often these two indicators are not present.  If it IS RA, there are wonderful new treatments for it.  When I was first diagnosed, I was like Merissa.  My hands were so swollen that I could not even tie my shoes.  All my joints were sore.  Now, because of the new meds for R A I have been in remission for ten years.  I have almost no symptoms, and those I do have are primarily osteoarthritis, not RA.
> 
> You might take her to a rheumatologist for testing.  They wil do an MRI of her hands to see if there is joint damage.  That is really the only way to be positive it is RA.



Hi Sharon,

We believe that, the last lot of tests that included an MRI to her hands and a large number of blood tubes removed for a large number of tests the doctor requested, the doctor visit is tomorrow Wednesday the 9/7 so, we hope that the test will gives some answers.

There are 3 distinct areas where Merissa has developed some problem from, one is the spine, which started as scoliosis and in recent years became narrowing of the spinal canal and 2 discs gone with some nerve pinching as a result.

The second area is her hip and her right knee that stops functioning every so often and more recently, the problem with her swollen and lumpy hands, with not strenght and intense pain.  The hands get white and cold and other times get boiling hot...!

There is a good possibility that, she got what you said, and possibly more, lets see what the doctors say tomorrow...!

Thank you for your concern and advice...!

Cheers
George


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## Gofer

George,

Merissa is a strong woman who has a kind and gentle heart.  Give her all the love and support you can. Wih all the prayers and well wishes for you both from around the world you both just have to remain positive and you will get thru this.  A persons true character is revealed in times of adversity and I have no doubt that you will both shine.  Take care of each other and get better.

Bruce


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## BJohn

My helper Brenda and I will keep you and Marissa in our thoughts and prayers.


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## robutacion

Hi people,

Thank you for all the continues well wishes and thoughts, we both are having a thought run at the moment with our health but things will get better or at least a little more bearable...!

We saw our doctor last Wednesday 9/7 and we both had some news/results from tests done recently and as far as Merissa goes, the doctor is convinced that she is suffering from Rheumatoid Arthritis, something that Sharon was correct about and I had my suspicions from day one, and always claimed that, the right left calf muscle, the right knee and more recently her hands condition, had nothing to do with her damaged spine, it had to be something else and so , its proven to be...!

The doctor is trying to make contact with a rheumatologist and attempt to get Merissa in before the 9 months of waiting time on the public service system, I may have to come up with some extra money to get this appointment through the private system, that will cost a bunch, but I don't care, I want Merissa to get this condition well under control before more damage is done...!

Our doctor has already gave her some strong anti-inflammatory, a lot stronger than the Brufen we both have been on for a long time but, any more specialised medication/treatment can only be expected to be subscribed by the rheumatologist.

While I'm happy to see Merissa's situation to take a different and better direction than until now, I'm going on the knife on the last day of this month, this is a test will once and for all, determine which of my Adrenal glands got the tumor that has been causing my blood pressure to become uncontrollable since the beginning of last years 2013.

Lots of all kinds of tests before they worked out that was an Adrenal gland dysfunction, blood pressures of average 210-120 for far too long, the "ticker" is just going too damn fast, with the common side effects of Hypertension condition, have not been easy.

Recent CT scans and more blood tests failed to identify which Adrenal gland is paying up (left or right) and because these glands seat/are attached above each kidney, they have no option that make an incision in my groin into the main blood artery, insert an instrument that will follow the vein right to the Adrenal gland large vein connection and removed some blood directly from each gland, for testing. This is going to be a 1 day thing, I can drive home sometime after 4:00pm.

If the problem is only on one Adrenal gland, I will have to have it completely removed, if it happens that both are affected, they can not remove both, like the kidneys, we can live with only one but not without the 2 so, I may have to be submitted to a extreme treatment with drugs to minimise the affect they are having on my blood pressure and other things.

The 2013 was not a very kind year for us, and 2014 is turning up to be even less kind but, things will get better, particularly in pain levels, so we hope...!

When we don't feel that well, is always that assumption that we are the only ones, huh...??? nothing could be further from the truth, I don't have to look very far to see that, there is a big bunch of people out there, a lot worse than us, it may not be of any consolation but certainly puts things in perspective, if you want to take notice, and I do...!

So, this is all we can say for the moment, tomorrow is another day and we will be here to live it the best way we can, isn't that what everyone else tries to do...???

Cheers
George


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## southernclay

Hate to hear that George...at the same time glad you have a starting point to know which direction to go.

FWIW we have a very close friend with RA, she handles most of her issues with diet as Sharon mentioned. Totally gluten free, fermented fish oil and a few other regimens keeps her good to go mostly.

We'll continue to pray for y'all in the meantime thanks for updating us, if there's anything needed let us know!


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## plano_harry

Thanks for the update George.  Continuing prayers.


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## Jim15

You both will remain in my prayers.


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## Bob Wemm

Hey George,
Thanks for the update, our prayers are with you both, as are many others.
Like you say there are plenty of people out there who are worse off, but that is absolutely no consolation to both of you.
Stay as well as you can and be careful. I pray that you only have one problem and that Merissa gets to see her Dermatologist very soon.
Good luck,
Bob and Betty.


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## tim self

George, I just read this thread completely after reading the Mr. Anonymous thread.  I have experienced many of the same problems your wife has and can feel her pain. Having experienced it and having a wife with RA, she must be in incredible pain even with the Oxy she takes.  I pray for her relief and Doctors who know how to heal her and give her an enjoyable life again.


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## Bob Wemm

Hi George and Merissa,

OOPS!! sorry about the Dermatologist, I don't think that he will be much help. I guess that The Rheumatologist might be more help.
Here's hoping.
Bob.


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## robutacion

HI peoples,

Just a quite update on Merissa...!

Was a week tomorrow (Wednesday 9-7) that the doctor had the first indication that Merissa was suffering of RA, unable to prescribe ant specialised medication, he decided to upgrade for Merissa, the anti-inflammatory Bruffen that we both have been taken for years with a obviously much strong one and while we were a little sceptical with its effectiveness, I can saw that, within 24 hours, Merissa was starting a little less pain from her hands the the swollen got slightly less, a most welcome improvement even if small from the 2 months of agony.

That new medication, until we can find a Rheumatologist in the private system that will be available to see Merissa, is the only thing that is helping her a little but far from being enough or the solution to the problem, unfortunately...!

Since Mr. Anonymous intervention, our doctor was advised by me  on Monday that, I want the best specialist to see Merissa, regardless of how much will cost and his response was pretty much what I was expected and know is a reality and that is, even with money, that doesn't always mean a thing if the best specialists are all booked in, in the short term, which can mean a few days to a couple of weeks, against the 9 months waiting list, in the public sector...!

I know, our GP will look everywhere to find the best specialist to see Merissa ASAP, that will guide her through her treatment and recovery so, we are waiting for that call...!

I/we are just so pleased that, the stronger anti-inflammatory is alleviating the pain, allowing Merissa to also sleep a little better...!

Lets see what happens from here...!:wink::biggrin:

Thank you for the continued well wishes and support...!


PS: Hey Bob, a Dermatologist may be also needed for later but for now, the Rheumatologist, will be of better use to Merissa...! 

Cheers
George & Merissa


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## sbwertz

There are really effective drugs out there now for the treatment of RA.  It may take several months of testing to find the right combination to help her, but RA isn't the crippling disease it was even twenty years ago.  I've been in remission for ten years now (diagnosed in July of 2004 and fully under control by Christmas that year. They have to start the meds with small doses and work it up a little at a time.  That is why it took six months to get my RA fully under control.) 

I have to have an intravenous infusion once every six weeks, and give myself a methotrexate shot every week.  But I am able to do most everything I need to.  My only arthritic pain comes from plain old garden variety wear and tear osteoarthritis...Left knee from fifty years of mounting a horse!

Sharon


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## Dinki Di

*Speedy recovery*

Best wishes for a speedy recovery for Merissa. I hope everything turns out for her ASAP prays and good wishes are with you goth.

Gaetano and Diane


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## robutacion

Well, our doctor wanted to see Merissa one week from when he prescribed the stronger inflammatory to replace the Brufen so, we saw him yesterday (16-7) and he was please to know there has been a slight improvement in the pain and mobility on her hands but little difference on her knee.

The doctor confirmed that he locked in an appointment with the best specialist that visits this area, for 4 weeks from now,  these specialists are full booked well in advance, even in the private system, he told also also that, Merissa is first priority on a cancellation possibility so, we/she can get called at any time...!

Before we left the medical clinic, we got our annual flue vaccines, they are not bullet proof but, we tend to get the mild symptoms but never the full attack, that is good enough for us...!

On my procedure marked for the 31 July,. there were some changes from a phone call In received this afternoon advising that my medical procedure was postponed for another 2 weeks from the advised day so, it is set for the 14 August, lets hope they don't change it again on me...!

We going back to our doctor again next Wednesday so, we hope that he will have some better new for us, will see...!

Cheers
George


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## Gofer

Little bit of good news, now the road to recovery is underway for Merissa.  Hopefully your delay is the last one and you can take care of your problem soon too.

Bruce


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## BJohn

Yes a little good news is better then bad or none. Hope things continue to improve.


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## triw51

Will be praying for you both.


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## sbwertz

A few tips from my rheumatologist while you are waiting for the appointment.  

Avoid products that stimulate the immune system, such as AirBorne, etc.  The immune system is the enemy...don't support it.  

Treat any infections immediately...infections stimulate the immune system, and make your joints flare.

Try to avoid coming in contact with large groups of people where you might be exposed to a virus.  When you get a cold, it stimulates the immune system and makes your joints worse.

Cold weather makes the pain worse.  Try to stay indoors.  (Even getting food out of the freezer made my hands throb.)

Warm baths or showers just before bed helped me get some sleep before I got my RA under control.

Good luck and keep us posted.


----------



## sbwertz

How is Merissa doing, George?  I think of her often.  Hope you have found a rheumatologist.

Sharon


----------



## robutacion

sbwertz said:


> How is Merissa doing, George?  I think of her often.  Hope you have found a rheumatologist.
> 
> Sharon



Not very good Sharon, yesterday she started to get "attacked" on her feet and she hardly can stand up, it just hurts too damn much.

We went to the our doctor again yesterday, and nothing has changed, either for her or me however, I had to put the foot down and request more information about this specialist appointment that our doctor made.  We were never told the name of the specialists, where to go to see him, what day and what time so, I was mad and they felt it.

I manage to get the name, the day (26 August) and a phone number so today, I rung the specialist office, and got the location to go to, and the time (11:00am).  I asked why I was told by the doctor that the appointment was in 4 weeks, this was over 2 weeks ago, and now we have another 3 weeks of waiting and that got me really upset.

I explained the reason of the appointment and the urgency of it, they knew nothing about it so, and after attempting a "bribe" with the receptionist/secretary, that didn't work however, she promised to send a text to the specialist, explaining the situation and see if if can squeeze Merissa in, ASAP.

I was confirmed that, Merissa was in fact put on a cancellation list but, the chances are very minimum, these appointments are hard to get so, people just don't give up their appointments.  As for my bribe, I'm yet to find out if it worked for the specialist, I told the secretary to make him aware that I will pay double ($500 x 2) if he see Merissa within 1 week.  Desperate situations require desperate measures, and that is that, thanks to Mr. Anonymous...!

Cheers
George


----------



## plano_harry

George, continued prayers for improvement for Merissa and getting in to see the specialist asap.


----------



## buckobernie

George, Will keep Merissa and you in our prayers. bernie


----------



## BJohn

George, I have Marissa in my prayers. This may sound girlish. But I love that you call her your BRIDE. That is what I call my wife of almost 40 years. She will always be that young girl that I saw walking down that isle. When she if hurting well dang so am I. May God bless both of you.


----------



## BayouPenturner

I hope you don't mind but I will pray for her.  keep us updated on her progress and let her know we are all praying for quick recovery.


----------



## kruzzer

wishing for the best for you guys


----------



## solobiker

I am wishing her all of the best.  She is in my thoughts.


----------



## Toni

I will keep her in my thoughts and prayers!!!


----------



## Russknan

Oh, George, words fail me. Hope you have better news soon. 
Russ


----------



## Jim15

Still praying for you both.


----------



## sbwertz

George, can you get these down under?

Amazon.com: ThermaCare Air-Activated Neck, Shoulder and Wrist HeatWraps, Powerful Pain Relief Plus Deep Tissue Relaxation - NEW shape for improved fit - 9 HeatWraps: Health & Personal Care

Since it is wintertime there, they might give her some relief.  They come in all different shapes for different parts of the body and they stay warm for 8-12 hours.  The ones for the hands are especially soothing, and it should ease the pain in her feet.  Flares are really the pits.  

Can your GP prescribe a six-day pack of prednisone to tide her over until her appointment?  It is a dose pack where you take six pills the first day, five the second, etc. for six days.  It usually gives a couple of weeks of relief, and most doctors can prescribe it.

MethylPREDNISolone Dose Pack (methylprednisolone oral) medical facts from Drugs.com

Good luck.


----------



## BJohn

Very good idea Sharon, My bride uses low does of Prednisone when we go on vacation especialy when hiking and stuff. It works wonders.


----------



## robutacion

sbwertz said:


> George, can you get these down under?
> 
> Amazon.com: ThermaCare Air-Activated Neck, Shoulder and Wrist HeatWraps, Powerful Pain Relief Plus Deep Tissue Relaxation - NEW shape for improved fit - 9 HeatWraps: Health & Personal Care
> 
> Since it is wintertime there, they might give her some relief.  They come in all different shapes for different parts of the body and they stay warm for 8-12 hours.  The ones for the hands are especially soothing, and it should ease the pain in her feet.  Flares are really the pits.
> 
> Can your GP prescribe a six-day pack of prednisone to tide her over until her appointment?  It is a dose pack where you take six pills the first day, five the second, etc. for six days.  It usually gives a couple of weeks of relief, and most doctors can prescribe it.
> 
> MethylPREDNISolone Dose Pack (methylprednisolone oral) medical facts from Drugs.com
> 
> Good luck.




Thanks everyone for you support and thoughts, we are most moved as a result, thank you...!

Merissa is using this, to support her right knee, the first thing that went on her, I will look into Thermacare products and I will discuss the methylprednisolone issue with the doctor first thing Monday morning.

I'm actually considering to confirm the days this specialist sees patients, and drive myself and Merissa to his "clinic" first thing in the morning and make sure he is aware Merissa is there and we won't leave the place until he see her.  He may waste a full day and cause some troubles for ourselves but, I will be damn if I'm going to allow Merissa to get worse every day and I sit here, just waiting, that ain't going to happen.

I tend to **** people off quite easy and frequently, for whatever the reason but, this is just no right, and I have to do something about it, period...!

Lets see what will happen, next...!

Cheers
George


----------



## mark james

Hi Friend!

I second the methylprednisone!

I'll also suggest a "soft touch" with the Doctor...  You may truely need that Dr!  so be careful and not "burn your bridges."

I appreciate the "need to have the consul"t, but don't shoot yourself in the foot.  If you're options for Dr's are limited, don't alienate what you need.

I know this is an unwelcome recommendation...  But work "WITH THE SYSTEM", you will need it!.

Best Regards...  Mark


----------



## sbwertz

If you can get her on the prednisone, it will help a lot.  It really makes a difference.  For example, I was having a flare because I had to go off my meds for a medical procedure, so the Dr gave me a dose pak to tide me over until my meds kicked in again.  I was climbing up a little bank and fell and twisted my ankle under me.  It really hurt at the time, but in a few hours, I was fine.  In two weeks, when the prednisone wore off, my ankle ballooned up and I was on crutches for a week!


----------



## Dalecamino

I'm thinking about you both George. Hoping for a good outcome.


----------



## danom

Thinking of you both.
Hoping for one of the miracles of modern medicine, that can bring some relief of the pain and suffering.
Much too young to have to deal with this.
Wishing a speedy recovery.
danom


----------



## sbwertz

Any luck with the prednisone?


----------



## robutacion

sbwertz said:


> Any luck with the prednisone?



Hi Sharon,

On Monday we were on our way to see the doctor and then the specialist clinic, actually we passed the doctor and decided to go first to try to find where the specialist clinic was, drop some paperwork we receive on Friday in preparation for Merissa appointment and try to have a quick word with the specialist but, we never made it, as our old girl (25 years old Ford Falcon wagon) died on us, in a very cold and rainy day and in the middle of nowhere.

I waited 5 hours to get "rescued" by our auto-mechanic friend and he took us home after dropping the "old girl" and the tow truck at his place, so we were without a vehicle until last night, as he got us another vehicle from one of his car salesman mates, a 1999 Holden Commodore V6 Wagon, that all what the budget did allow.

Today I have a zillion of things to do as I have to be in Hospital by 10:00am to get this vein test, where they will insert an instrument on my groin main artery and travel its way to each of my Adrenal glands for a blood sample and a biopsy, to figure out which one (left or right) has the tumor, as any other CT scans and tests, failed to identify so, I will be driving myself to the Hospital and then drive myself home after they discharge me, about 4:00pm or so...!

Merissa is in no condition to be there in the car with the dogs for all those hours and then drive me home so, she stays home safe and I go and get myself tested, it should be OK, I have no other choice, anyway...!

So, and as you can see, we are certainly going through a wave of bad luck and problems but, we have had some amazing support and help from some very special person so, we are very lucky indeed.

As much as I would like to see the doctor today and ask about these drug you suggested, our appointment was for Monday, we was fully booked today and tomorrow so, an appointment was made for Thursday, this was the best I could do, in these circumstances...!

Cheers
George


----------



## David Keller

Best wishes to you and your better half...  Hopefully the docs can figure out a solution that gets Merissa back up and running.


----------



## robutacion

David Keller said:


> Best wishes to you and your better half...  Hopefully the docs can figure out a solution that gets Merissa back up and running.



G'day David, long time don't see, mate....!

Hows things in your neck of the woods...??? hope all good...!

Yeah, such as life mate, we all get some "bad runs", we are certainly having our share of it but, it all will get sorted, the one way or the other, I'm sure...!

I've got a little to catch up with computer stuff so, I'm trying to do just that and not get too stressed for tomorrow, is going to be a lonnngggg day.:redface:

What can you tell us about Merissa and my conditions...??? something simple that I can understand please, doctors language gets a little too complicated sometimes...!:wink::biggrin:

Cheers
George


----------



## sbwertz

Has Merissa been to the Dr yet?  Hope she is feeling better.  How did your test turn out?  Were they able to find out which of the adrenal glands is causing the problem?  

Thinking of you both

Sharon


----------



## robutacion

sbwertz said:


> Has Merissa been to the Dr yet?  Hope she is feeling better.  How did your test turn out?  Were they able to find out which of the adrenal glands is causing the problem?
> 
> Thinking of you both
> 
> Sharon



Merissa and I, we appreciate kindly your concerns and willingness to follow any update we may have, thank you...!

Believe it or not, I have been postponing to say anything about last Thursday, as it turned out to be another shocker and one that endup causing both of us some unnecessary stress, only due to the mess our health system is, particularly in the public system however, we survived to it and continue on, as always, and like everyone else, right...???

Well, Merissa's appointment was changed from midday Friday to midday Thursday due to a cancellation, the day I had my vein test done and while I didn't wanted Merissa to drive, I endup with no other choice.  

Firstly I had made some arrangements to have someone to drive me there at 10:00am (Hospital arrival time) and then pick me up at the expected check-out time of 4:00pm but, at 6:45am in the morning that day, I was to ring them and confirm my bed, (no bed no test) and I was told that, they couldn't confirm it yet so, I was suppose of not eating anything for this test so, I waited for the bed confirmation but instead, I was getting a call from the hospital every 20 minutes or so, and all from different people/department, one would say that the test was off, minutes later I was getting a call from someone else saying that the test was on but, for me not to leave home until they would confirm the bed.

I was suppose to leave home at 9:00am to be there at 10:00am so that preparation could be made for my test expected to happen around 1:00pm so, I organised for this person to pick me up at just before 9:am and Merissa would drive herself to the doctor, a lot closer, only 25km away.

This person waited here at my place until 9:30am as she had to be elsewhere and that would be the latest she could leave so, 9:30am come, together with a few more call from the hospital so she could see that, was no story of mine, that was actually happening...!

She left at 9:30am and me still waiting so, we had to quickly re-thing our plans as, Merissa needed the vehicle to drive to her doctor and I also needed the vehicle to get me to the hospital, the major problem was that, my attempt to drive myself to the hospital and than drive myself back home, was out of questions at they were clear to me that, they weren't going to allow me to drive home, no release form would be signed unless they could be sure, someone would be there to pick me up so, I had no choice than, ask Merissa (and the pets) to come with me so that, she could then drive to her doctor and then, spend all those hours parked somewhere, until the 4:00pm was due.

I wasn't very happy with that choice but, I just couldn't find a better solution so, we all went.  Merissa saw the doctor and he wouldn't barge, he simply said that, such medication can be extremely dangerous to the wrong person and that, only the specialist that she will see on the 26 August (no change, so far...!), could make such decision...!  I only found out when she come to see me later in the afternoon.

We couldn't communicate with each other, I had no phone on me so, and after they done my vein test on both Adrenal glands, and put in a recuperation room, Merissa was allowed to see me however, she was expecting me to get out at 4:00pm, and the doctor the signed me in, was suppose to sign me off at 5:00pm because, one set of rules say that I had to stay there for 1.5 hours and another set of rules says that I had to wait 2 hours before release.

After 4:00pm was truly gone, Merissa got worried and she went looking for me.  Was 5:00pm when she came in, and she set there for a few minutes and told me what happen at the doctors she went to but, she was concerned about the dogs being in the vehicle unattended, and the last time we did that, it cost us $1,500 (someone called the RSPCA) and a warning that the next time, we won't get the dogs back so, Merissa wanted to go back to the vehicle, particularly because I said that I wouldn't be far behind.

I could see in Merissa blood shot eyes that she was in agony, she was suppose to take her pain killer medication at 5:00pm, she never took it with here as we were suppose to be home by that time but, that wasn't going to happen.

I started to get really stressed, as the damn doctor was nowhere to be seen and any call, messages, etc, went unanswered so, and as time went by, I started to get really stressed.  Was just pass 6:00pm when the doctor walked in, and even though she was a very nice looking young woman, I let her have my own thoughts of what I though of the situation, the whole ward, 3 nurses the doctor and me, the last patient for the day that was suppose to be out before 5:00pm so that everybody could go  home so, I wasn't the only one annoyed with the delay but, none of the nursers said a damn thing, they all kiss the doctors arse and can't afford to say anything however, I was in a very different situation, and was within my rights to express my... "disappointment" 

I got a very interesting excuse/answer from this doctor, "I'm sorry but, I have my doctor and husband also waiting for me...!"

What in a heck, do I have to do with that...???:frown:

So, they knew that Merissa was there to pick me up however, they had to push me out in a wheel-chair, right up to the vehicles door.  While I felt relived, I could see that was getting dark (Merissa simply hates to drive at night), she was in great pain, cold and the dogs were all stressed also from being in the car, all day but, they would be worse if left at home...!

We got home at 7:30pm, safe and sound but completely stressed out, and for a good reason, I believe...!

I got a courtesy call from the hospital the next day about lunch time and while I was very surprised that I hadn't felt any pain or discomfort from the test, when I was told that I would be saw until that moment, when I got close to the 4:00pm, I started to feel what they meant and all of a certain, I walking "again" like a Geisha (bum grapes):redface: and the sawness shown its teeth...!

As you can see, no wonder why I was trying to forget about it but, I understand that some people do want to know what's happening and I fully understand that so no problems...!

The whole thing looks/sounds like, a bad written story and while I can accept the part about being badly written, this ain't no story...!

I/we have to be able to joke about it, at the end of the day, that will be the only way to maintain some sort of sanity for us to avoid any more stress, that we have had enough of, already...!

Tomorrow is another day, and we still have the rest of this day to live so, lets get along with that, huh...???:biggrin:

Cheers
George


----------



## robutacion

Hi peoples,

Merissa did finally see the specialist today about lunch time (AUST. time), and everything went as good as I may have expected, Merissa may have a slight different opinion than mine, as she was the one that got a big needle stuck deep inside her right knee, the one that has been giving her so much trouble for so long.

The specialist (a fairly young man, late 30th's I think), he took great attention to Merissa's complains, questions and observations, we were there for a good hour and in that time, he confirmed our GP diagnosis plus another degree of problem and that is the, Osteoarthritis that is related to the Rheumatoid Arthritis but slightly different problems...!

He attempted to remove any possible fluid from Merissa's knee but, nothing come out so, he then injected the steroid that he had explain to us what was about and why.  It did turn out that, what he injected is the same steroid that Sharon had recommended in here, I had a print of it, and when I shown it to him, he was pleased that I already had done some research on it and confirmed that was the same thing, just under another name.

Merissa have heard of this knee injection from our GP but, she chickened out and was been scared since of that possibility, that she was told, the specialist could opt in doing, anyway and so he did.  It is all over now and she felt less pain on that knee within 2 hours of the injection so, that was great to see...!

She was prescribed 3 lots of medication, 2 of them to be started immediately and the third to be confirmed as OK to start taking, after he gets the blood test results that was done today at the clinic, apparently this medication can be very nasty to some people so, the blood test will confirm Merissa's suitability to take it or not.  If, she receives confirmation to start taking it, that is one single tablet each week for 6 weeks however, every week she will need to get a new blood test to see what the medication is doing (should be some powerful stuff, huh...???)

One of the medications she is starting today on, are the very same steroid that was injected in her leg but in tablet form, and the other one is some other weird name that works together with the rest of the medication on this treatment so, lets hope Merissa accepts well the new drugs and that she gets some relief for a change however, the specialist was very clear and detailed in explain and provide reading material about the amount of time that can take for some of the steroid treatment to show some significant improvement of 3 to 6 months.  There are no quick fixes, particularly with something that has no cure as such but, allow great management in the long term...!

Merissa left very optimist in general and she is now resting comfortably on the couch with acceptable pain levels, I hope she gets a good night sleep...!

As for the results of my Adrenal glands tests, I haven't heard anything as yet, I was told between 1 and 2 weeks so, it will happen soon...!:redface:

PS: Merissa's next appointment for the 30 September 2014, and another 4 or 5 follow ups after that...!

Cheers
George


----------



## Bob Wemm

Merissa and George,
So happy to see that you have some relief at last.
I hope that there is a continuing improvement for you.
All the best wishes,
Bob.


----------



## mark james

Thanks for the update!  It's a good step in the right direction.  Hopefully day by day you both will get healthier.

Best Regards.


----------



## Krash

Continuing to keep Merissa and you in my prayers. So glad that she has a good diagnosis and a plan forward.


----------



## Rick_G

Good to hear you finally got in and something is being done as well as showing some positive results.


----------



## sbwertz

I would suspect that the one she takes once a week is methotrexate.  Every month or so, he should increase the dosage.  You have to start very slow with MTX.  I eventually settled at 7 pills a week, and it kept me pain free for four years.  Now I take it as a self injection every week, still the same dose, but also get a remicade intravenous infusion every six weeks.  The combination has kept me pain free for almost ten years.  

I have had the steroid injections into my shoulders. For me they last about two years before I have to have it re-injected.  That is for the osteoarthritis, not the rheumatoid.  Osteoarthritis is the "wear and tear" arthritis almost all of us get as we age.  

If she is lucky, she won't have any side effects from the MTX.  It can cause nausea.  It also can cause liver damage, which is why you have to have regular blood tests when taking it.  It will take a while before it "does its thing" but the prednisone should help until the MTX kicks in.  I had no side effects, and it doesn't bother my liver, so I'm home free.

I'm glad she is feeling better. 

Sharon


----------



## Dinki Di

*George and Merissa*

I wish and pray for your healthy recovery, My freind and teacher 
Please take good care of yourself, 

Gaetano and Diane


----------



## sbwertz

Has Merissa started to feel better?


----------



## robutacion

sbwertz said:


> Has Merissa started to feel better?



Hi Sharon and everyone else...!

You have been pretty spot on with the things Merissa had to be through, one of the medications are as you said and the others I can't tell you what they are but I should read the names on the boxes an put the here...!

Merissa has had a significant improvement, she has a long way to go but every step forwards, is a positive one.

She haven't heard yet from a latest blood test and that will determine if she can take the third medication that was prescribed but, only after the specialist gives her the OK otherwise will harm her pretty bad...! 

She is sleeping considerably better, and that may have to do also with the new bed and quality pillows we invested on finally, we are both between 110 and 118kg each in body weight and we had a good look at the old bad they took away, it was a mess with springs and supports broken everywhere, it was getting very uncomfortable to sleep on and has been hurting my back long before Merissa got diagnosed with this damn disease/condition.

So, in that regard, everything is getting better, thank you for Mr. Anonymous that gave us a hand at a very crucial time in our lives, something that we can not forget nor will...!

I on the other hand, I'm getting increasingly concern about not have been contacted by my heart specialist and the vein biopsy test done on my Adrenal glands a few weeks ago now.

I'm not sure what to think really, I was told that, if the tumor is only on one Adrenal gland, he would organise the surgery for its removal, pretty much immediately however, if is found that, both right and left Adrenal glands are affected, that would require a completely approach and the decision would had to be made on remove one as we can live without the two, and consider some nasty drugs to keep the other one going and prevent its deterioration for as long as possible but, I would be a sick puppy for the rest of my days and that is not something that ready for so, some anxiety is going on, as expected, huh...!:redface:

Cheers
George


----------



## plantman

George; May God speed both of you on your road to recovery !!!    Jim  S


----------



## BJohn

George

You and Marissa are in my Prayers. May God lay his healing hands on both of you.


----------



## Jim15

Both of you are still in my prayers.


----------



## plano_harry

Continued prayers for both of you George.


----------



## robutacion

Thanks folks, most appreciated...!

I forgot to mention some of the side-effects that Merissa's medication is known to provoke and so far, the side effects have been mild and go away after a couple of days.  The first was nausea, she had it for the first 2 days of the start of the treatment and then went away, thank goodness for that.

Some time later, she had some upset tummy and some diarrhea that also settle down after a couple of days however, the last one she is experiencing is mouth ulcers, started a couple of days ago and is getting a little worse so, we hope that it goes away soon.

Despite the fact that, we read as much as possible about the common side effects of some of these medications, one can never be sure on how the body will react and get around it.  We all know that, unfortunately most medications while design to improve something, will cause damage elsewhere and sometimes the risks are quite scary however, the human body is an amazing "machine" and it has its own way to get around problems so, fingers crossed that, nothings gets to badly damaged in the process...!

Cheers
George


----------



## sbwertz

robutacion said:


> Thanks folks, most appreciated...!
> 
> I forgot to mention some of the side-effects that Merissa's medication is known to provoke and so far, the side effects have been mild and go away after a couple of days.  The first was nausea, she had it for the first 2 days of the start of the treatment and then went away, thank goodness for that.
> 
> Some time later, she had some upset tummy and some diarrhea that also settle down after a couple of days however, the last one she is experiencing is mouth ulcers, started a couple of days ago and is getting a little worse so, we hope that it goes away soon.
> 
> Despite the fact that, we read as much as possible about the common side effects of some of these medications, one can never be sure on how the body will react and get around it.  We all know that, unfortunately most medications while design to improve something, will cause damage elsewhere and sometimes the risks are quite scary however, the human body is an amazing "machine" and it has its own way to get around problems so, fingers crossed that, nothings gets to badly damaged in the process...!
> 
> Cheers
> George



If she is taking methotrexate, she needs to be taking 1000 mg of folic acid daily to prevent the mouth ulcers.


----------



## robutacion

sbwertz said:


> robutacion said:
> 
> 
> 
> Thanks folks, most appreciated...!
> 
> I forgot to mention some of the side-effects that Merissa's medication is known to provoke and so far, the side effects have been mild and go away after a couple of days.  The first was nausea, she had it for the first 2 days of the start of the treatment and then went away, thank goodness for that.
> 
> Some time later, she had some upset tummy and some diarrhea that also settle down after a couple of days however, the last one she is experiencing is mouth ulcers, started a couple of days ago and is getting a little worse so, we hope that it goes away soon.
> 
> Despite the fact that, we read as much as possible about the common side effects of some of these medications, one can never be sure on how the body will react and get around it.  We all know that, unfortunately most medications while design to improve something, will cause damage elsewhere and sometimes the risks are quite scary however, the human body is an amazing "machine" and it has its own way to get around problems so, fingers crossed that, nothings gets to badly damaged in the process...!
> 
> Cheers
> George
> 
> 
> 
> 
> If she is taking methotrexate, she needs to be taking 1000 mg of folic acid daily to prevent the mouth ulcers.
Click to expand...


That maybe explain the daily intake of 15ml of Melrose Premium Omega 18/12 fish oil...???

George


----------



## sbwertz

robutacion said:


> sbwertz said:
> 
> 
> 
> 
> 
> robutacion said:
> 
> 
> 
> Thanks folks, most appreciated...!
> 
> I forgot to mention some of the side-effects that Merissa's medication is known to provoke and so far, the side effects have been mild and go away after a couple of days.  The first was nausea, she had it for the first 2 days of the start of the treatment and then went away, thank goodness for that.
> 
> Some time later, she had some upset tummy and some diarrhea that also settle down after a couple of days however, the last one she is experiencing is mouth ulcers, started a couple of days ago and is getting a little worse so, we hope that it goes away soon.
> 
> Despite the fact that, we read as much as possible about the common side effects of some of these medications, one can never be sure on how the body will react and get around it.  We all know that, unfortunately most medications while design to improve something, will cause damage elsewhere and sometimes the risks are quite scary however, the human body is an amazing "machine" and it has its own way to get around problems so, fingers crossed that, nothings gets to badly damaged in the process...!
> 
> Cheers
> George
> 
> 
> 
> 
> If she is taking methotrexate, she needs to be taking 1000 mg of folic acid daily to prevent the mouth ulcers.
> 
> Click to expand...
> 
> 
> That maybe explain the daily intake of 15ml of Melrose Premium Omega 18/12 fish oil...???
> 
> George
Click to expand...


No, the fish oil is for omega 3's.  She needs to be taking about 800 mcg of folic acid per day for the mouth sores because methotrexate inhibits the body's uptake of folate.  That results in mouth sores.

Something like this

http://www.amazon.com/Foods-Folic-A...TF8&qid=1409944678&sr=1-1&keywords=folic+acid

Ask your doctor about it.  Almost all rhumatologists over here tell you to use it.  Unless she is not yet taking methotrexate?


----------



## robutacion

> No, the fish oil is for omega 3's.  She needs to be taking about 800 mcg of folic acid per day for the mouth sores because methotrexate inhibits the body's uptake of folate.  That results in mouth sores.
> 
> Something like this
> 
> http://www.amazon.com/Foods-Folic-A...TF8&qid=1409944678&sr=1-1&keywords=folic+acid
> 
> Ask your doctor about it.  Almost all rhumatologists over here tell you to use it.  Unless she is not yet taking methotrexate?



Thanks Sharon,

I have been thinking in getting the medication bottles near to computer and tell you exactly what she is taking and how much...!

*- The medication that Merissa is still waiting to get permission to start taking (or not...!) is METHOBLASTIN/METHOTREXATE 10mg.

The 2 medications that Merissa is taking since the specialist visit are;

*- PANAFCORTELONE/PREDNISOLONE 5mg  3 tables daily (morning) for the first week and then 2 tablets daily per week after that...!

*- HYDROXYCHLOROQUINE 200mg, 1 tablet for the first 3 days, and 2 tablets daily after that (need eyes check within 3 months from taken these...!)

OK so, this is all she is taking.

She has an appointment to see the specialist on the last day of this month so, I'm not sure if he is waiting to see her before deciding on the METHOBLASTIN/METHOTREXATE 10mg.

It seems that her mouth ulcers (not so bad now) may have been from something else however, I will keep your warning in mind about the folic acid intake needed if he gives her the green light...!

Cheers
George


----------



## sbwertz

robutacion said:


> No, the fish oil is for omega 3's.  She needs to be taking about 800 mcg of folic acid per day for the mouth sores because methotrexate inhibits the body's uptake of folate.  That results in mouth sores.
> 
> Something like this
> 
> Amazon.com: NOW Foods Folic Acid 800mcg, 250 Tablets: Health & Personal Care
> 
> Ask your doctor about it.  Almost all rhumatologists over here tell you to use it.  Unless she is not yet taking methotrexate?
> 
> 
> 
> Thanks Sharon,
> 
> I have been thinking in getting the medication bottles near to computer and tell you exactly what she is taking and how much...!
> 
> *- The medication that Merissa is still waiting to get permission to start taking (or not...!) is METHOBLASTIN/METHOTREXATE 10mg.
> 
> The 2 medications that Merissa is taking since the specialist visit are;
> 
> *- PANAFCORTELONE/PREDNISOLONE 5mg  3 tables daily (morning) for the first week and then 2 tablets daily per week after that...!
> 
> *- HYDROXYCHLOROQUINE 200mg, 1 tablet for the first 3 days, and 2 tablets daily after that (need eyes check within 3 months from taken these...!)
> 
> OK so, this is all she is taking.
> 
> She has an appointment to see the specialist on the last day of this month so, I'm not sure if he is waiting to see her before deciding on the METHOBLASTIN/METHOTREXATE 10mg.
> 
> It seems that her mouth ulcers (not so bad now) may have been from something else however, I will keep your warning in mind about the folic acid intake needed if he gives her the green light...!
> 
> Cheers
> George
Click to expand...


Hope they let her take the methotrexate...it was a real wonder drug for me.  Methotrexate is the generic name, Methoblastine is the brand name.  The generic is a lot less expensive.  I take 17.5 mg a week, but had to work up to that over about six months.  I took the pills for about 8 years, then switched to injections because I wasn't metabolizing the pills well any more.  The prednisone should help her feel better, at least. It is a powerful anti-inflammatory.  The MTX however has the ability to actually put her in remission, if it works well for her.  I think of you both often, and hope she finds a medication combination that works well for her.  I was 61 when I was diagnosed, ten years ago, and was fortunate to get diagnosed right away, so I have no permanent joint damage.


----------



## robutacion

sbwertz said:


> robutacion said:
> 
> 
> 
> 
> 
> 
> No, the fish oil is for omega 3's.  She needs to be taking about 800 mcg of folic acid per day for the mouth sores because methotrexate inhibits the body's uptake of folate.  That results in mouth sores.
> 
> Something like this
> 
> Amazon.com: NOW Foods Folic Acid 800mcg, 250 Tablets: Health & Personal Care
> 
> Ask your doctor about it.  Almost all rhumatologists over here tell you to use it.  Unless she is not yet taking methotrexate?
> 
> 
> 
> Thanks Sharon,
> 
> I have been thinking in getting the medication bottles near to computer and tell you exactly what she is taking and how much...!
> 
> *- The medication that Merissa is still waiting to get permission to start taking (or not...!) is METHOBLASTIN/METHOTREXATE 10mg.
> 
> The 2 medications that Merissa is taking since the specialist visit are;
> 
> *- PANAFCORTELONE/PREDNISOLONE 5mg  3 tables daily (morning) for the first week and then 2 tablets daily per week after that...!
> 
> *- HYDROXYCHLOROQUINE 200mg, 1 tablet for the first 3 days, and 2 tablets daily after that (need eyes check within 3 months from taken these...!)
> 
> OK so, this is all she is taking.
> 
> She has an appointment to see the specialist on the last day of this month so, I'm not sure if he is waiting to see her before deciding on the METHOBLASTIN/METHOTREXATE 10mg.
> 
> It seems that her mouth ulcers (not so bad now) may have been from something else however, I will keep your warning in mind about the folic acid intake needed if he gives her the green light...!
> 
> Cheers
> George
> 
> Click to expand...
> 
> 
> Hope they let her take the methotrexate...it was a real wonder drug for me.  Methotrexate is the generic name, Methoblastine is the brand name.  The generic is a lot less expensive.  I take 17.5 mg a week, but had to work up to that over about six months.  I took the pills for about 8 years, then switched to injections because I wasn't metabolizing the pills well any more.  The prednisone should help her feel better, at least. It is a powerful anti-inflammatory.  The MTX however has the ability to actually put her in remission, if it works well for her.  I think of you both often, and hope she finds a medication combination that works well for her.  I was 61 when I was diagnosed, ten years ago, and was fortunate to get diagnosed right away, so I have no permanent joint damage.
Click to expand...


Heck Sharon, I know that mentioning age to women doesn't work too well but, are you really 71...???

I believe, is not so much a matter of letting Merissa take such drug, is the fact that, not everyone can't take it, as it can be fatal so, I prefer that the specialist take his time to deliberate upon the blood tests results...!

Thank you for your continued support, shame that you are so far away, it would be great if Merissa and you could talk a little...!

May have to invest on a Skype phone...!:wink::biggrin:

Cheers
George


----------



## OZturner

George, I only got to see your thread yesterday, and it took me till now to read it all.
Firstly I am so deeply sad to hear of Merissa's illness, and all the drama you both have gone through.
As if that wasn't enough, for you to also have problems, and drama, it made a difficult situation almost impossible. But in your typical spirit you put your head down and charged through it doing everything that was required.
I am delighted that Merissa has now a diagnosis, and is under way with her treatment, and I hope that your news will also be as positive.
You and Merissa are such a close team; she obviously is a great support to you. 
And with her illness I know you will provide all the support and assistance for her.
My thoughts and best wishes are with you both.
Keep Strong,
Brian.


----------



## robutacion

OZturner said:


> George, I only got to see your thread yesterday, and it took me till now to read it all.
> Firstly I am so deeply sad to hear of Merissa's illness, and all the drama you both have gone through.
> As if that wasn't enough, for you to also have problems, and drama, it made a difficult situation almost impossible. But in your typical spirit you put your head down and charged through it doing everything that was required.
> I am delighted that Merissa has now a diagnosis, and is under way with her treatment, and I hope that your news will also be as positive.
> You and Merissa are such a close team; she obviously is a great support to you.
> And with her illness I know you will provide all the support and assistance for her.
> My thoughts and best wishes are with you both.
> Keep Strong,
> Brian.



Thanks Brian...!

Years ago, I've heard someone saying, "what doesn't kill you, make you stronger...!", the older I get the more I understand what it means, despite the fact that, what doesn't kill you, can also weaken you in some ways, between body and soul, there has to be a balance, I'm working on that...!:wink::biggrin:

Cheers
George


----------



## Trey

*What doesn't kill you....*

George, 
I too just started this thread yesterday and finished it today.  I'm so sorry to hear about your other half being in pain.  However I have to say that with the diagnosis of RA and finally working your way through to see the stinking specialist I'm so happy that it sounds like she will be on the mend soon.  It sounds like Sharon is also a great resource having taken care of this for some time.  I know that you are completely aware of what you have, but I'm here to tell you that it sounds like she has something wonderful in you as well.

You are a good man, who matches nicely with a good woman.
If you ever question the need for this thread look back on it and think about this:  Shared pain is lessened, and shared joy is increased.

Be well my friend.
Trey


----------



## robutacion

*Update*

Hi peoples,

Merissa is doing a little better and the blood tests results that she did the day she saw the specialist, to see if she would be OK to that the third medication which will be the most important of them all but that, administered to the wrong person can kill them, well we waited and waited, the specialist was suppose to call us back as soon as he would receive the results but almost 3 weeks on and no news, we decided to ring the clinic and ask for the doctor to call us back ASAP.  He did and that's when we have discovered that, Merissa has given the wrong test form to the nurse the doctor gave her 2 forms, one for now and then the other for some time after she would be on this medications if the results of the first test did give the green light.

Because she mixed the forms and gave the wrong one to the "vampire", the doctor never received the tests he was expecting to receive and he was sure if Merissa had already done that blood test or not so, and as a result and because we had the right form for the test he needed with us, he suggested that she would have the blood test done the following day (yesterday) and that we would have the results by Monday, or Tuesday and when he does, he will call back with some instructions.

I, or the other hand, have not received any call from my heart specialists with news of the Adrenal glands test I done a few weeks back, I will call the clinic tomorrow (Monday) to find out what's up but, I will not be surprised if I'm going to be told that, I need to go to the knife but, Adelaide and Flinders hospital are over capacity and have been for a couple of weeks so, anyone that is not in an emergency situation should avoid to go there and complicate things even more, I'm not a emergency case (not as far as I know) even though, I have been feeling **** for weeks and I can feel that whatever I've got, is getting worse and I just don't want to do a thing but I fight back and try to keep moving and get things done, even it it takes me twice the time and I only do a bit at the time and seat down for a while.

Cheers
George


----------



## Jim15

Hang in there George. I hope they get you both taken care of in a timely manner. You both are still in my prayers.


----------



## sbwertz

Oh, George!  I'm so sorry that she has had to continue to be in pain because of a clerical error.  At least now you know what the problem was and it is getting addressed.  Hopefully her liver numbers are good so she can take the methotrexate.

The HYDROXYCHLOROQUINE she is taking is also a DMARD (Disease Modifying AntiRheumatic Drug), but the methotrexate is a better one.  

Sharon


----------



## robutacion

Hi peoples,

Good news on Merissa front, the blood test results come out clear so, she can start to take the methotrexate.

She started last night, 1 table once for the first week and then, 5mg Folic Acid the morning after the methotrexate intake, a blood test 1 week after the intake and everyone thereafter...!

Second week, 1 1/2 tablets, third week 2 tables, and 2 tables for every week after.  Folic Acid 1 x 5mg tablet the morning after...!

Merissa got up this morning saying that her mouth felt funny, she took the Folic Acid tablet with breakfast  and when I asked her just before, she said that her mouth feels a little saw particularly with hot food/drinks...!:frown:

Will see what happens next...!

Cheers
George


----------



## wyone

I have to say..  I don't know any of you in person.  I have only known a few of you from a few months.  But the outpouring of concern, and true compassion of this group is probably what makes you all great people!   I joined to see what this art and skill was all about and truly have found a wonderful group of caring people.  It really is rare to find people who show such compassion from mile, continents even, away from each other. 

I hope George and Merissa both get to feeling much better.  I am amazed at the positive attitude George has shown when things have to be weighing heavily on him.  I am a believer that wonderous things can happen when enough information and positive thoughts are sent.  I am sending as many positive thoughts as possible!

 I feel fortunate to have been welcomed to this group.  Thank you


----------



## BJohn

George the good news is welcomed here. Keep us informed and we'll keep praying that the healing continues.


----------



## robutacion

Thanks everyone, most appreciated...!

Apart from a "funny| mouth feeling, Merissa is going OK and certainly too soon to see ant effects from the methotrexate intake, I'm told that can take a couple of months, at least before that drug starts working in the body so, fingers cross...!

Merissa, is in may way like me, we have to be doing something to feel that we are pulling equally our weight, and while I keep telling her that, feeling a little better doesn't mean that I expect her to help me in the workshop or downstairs as she used to, there always things that need done and while Merissa isn't right, I cover for her and make sure that she know that, I don't mind and I don't want her to "strain" or push herself to help me, regardless of the reasons she may have, I keep reminding her that is OK to seat back and recover but, not for this "gal" she feel a little less pain and a little more freedom of movement and the next thing, I catch her doing stuff that she shouldn't have, and while most of times, she gets away from hurting herself, this was not what happened a few days ago, when I heard a big "commotion" in the house while I was outside and when I run inside, there she was on the floor and unable to get up...!

What did she do..??? she decided that, the firewood place was too full of ash and because she could bend slightly, she decided to clean it up.  Underneath of the fireplace is a fire/heat protection slab, made with ceramic tiles over some cement sheeting, I have done the same on the wall behind the fireplace, just for safety, anyway, there she was wit a metal hand shovel and a bucket and bending to reach the floor of the fireplace however, she could quite reach the back of it so, she bent the knees a little further but her right bad knee, didn't like that idea and certainly she lost any strength on her knees and down she went, hitting her good knee hard on the solid tiles and then rolled on her side and she was stuck between the fireplace and the 2 seater couch, saw and not sure how to get out of it.

My lovely dog Zac, the pointer, was trying to give mouth to mouth to "Mum", while she was laying there, a little douzy...!

When the body is so saw and the movements aren't that free, even the simplest of body positions can become difficult to recover from, (I know I have been there, done that...!),Zac didn't help much but I know, he was doing the best he could to get Mum up.

Off-course, I got Merissa up with this "very strong back" on mine (or, just about 110kg body weight...!) and we sat down and assess the situation.  Was no point for me or her say anything, she started to say that her right knee was hurting and surely, there was this big "egg" on her knee-cap from the fall...!

I got some Hirudoid cream and rub it on the leg, followed by some strapping to give her some relief and after that, Merissa looked at me and said, "I should have listen to you, huh"...????

The thing is, if I was in her place, I would probably do the same, I know how it feels and while I'm quite good at give good advice, I have never been that good in following the advice I give to others, after all, just to name a few, the day after I got my right hand operated on the Carpal tunnel, and told to be on a sling for 2 weeks, I was on the bandsaw cutting some wood with my left hand and using the operated hand and whatever was showing  (wrapped had) of my fingers, I was using that hand to push things alone.

I was good to get my mind off the pain however, the result was another trip to the hospital that same evening, with all the stitches ripped appart and bleeding quite badly...!:frown: so, who am I to say anything...???:redface:

PS: I have found out why I haven't yet received any news from my last vein testes, the specialists have been away on holiday for the full month, he is back soon...!

Cheers
George


----------



## sbwertz

George, they told me it would take months for the MTX to start to help, but I was beginning to feel better after about two weeks!  Hope Merissa is the same!  Use RICE on that knee:

Rest
Ice
Compression
Elevation

It will be sore for a while, for sure.  (I also got pretty smart too soon, and fell and sprained the tar out of my ankle.)

Sharon


----------



## robutacion

sbwertz said:


> George, they told me it would take months for the MTX to start to help, but I was beginning to feel better after about two weeks!  Hope Merissa is the same!  Use RICE on that knee:
> 
> Rest
> Ice
> Compression
> Elevation
> 
> It will be sore for a while, for sure.  (I also got pretty smart too soon, and fell and sprained the tar out of my ankle.)
> 
> Sharon



Hi Sharon,

Yes, she was sore for a couple of days but, she recovered from that quite well, after 4 days, I couldn't see any swelling on that knee and she was moving without great difficulty from that injured knee so that was great...!

I think that 1 week is still too early to see any results, I'm taking great attention to Merissa's development and body movements, I know that I will probably notice before she does as she will automatically do what her body allows, as things get less inflamed however, I will be able to notice any differences, as small they may be, I'm like a  
, sort of speak...!:wink::biggrin:

PS: We aren't Saints, huh...????:biggrin:

Cheers
George


----------



## wyone

I feel for you.  It is WAY WAY harder to see the love of your life in pain than to deal with your own pain.  Both of you are in our thoughts and prayers!


----------



## robutacion

Hi everyone,

I would like to give a quick update on Merissa's condition, and a quick highlight on my own update...!

Merissa saw her specialist last Tuesday (30/9), the specialist was most impressed with the walking/moving improvement from the first time he saw her.  The blood tests done one week after she started with the methotrexate, show a great improvement that, according to the specialist, is great news and a good sign that this medication is in fact working, so soon into the treatment.

The specialist was happy to go forwards and prescribe her, another medication that will complement the others she is already taking, and that is the Pyralin 500mg (Sulfasalazine).  She will need to continue with weekly blood tests (@ AU$118.00 a pop) with another appointment make for 4 weeks from now.

In general terms, Merissa general body movements have been improving, particularly her hands and knee, far from able to run the marathon, the improvements are most welcome.  There is still some swelling on her hands and her right leg, will require physio very soon, the calf muscle (below the knee, back of leg) is almost unnoticeable and the top leg muscle has also lost some volume so, some specialised controlled exercise will be require...!

As for myself, and after over 6 weeks since my vein test was done, to get some samples from each of my 2 Adrenal glands and establish what was their condition and possible surgery for removal of at least one (the worse one), I finally got to see my specialist last Thursday at a new venue near Adelaide.

Well, using his own words, the results of this specialised test I had done, was "very unusual...!", and to cut a long story short, lets just say that, surgery is no longer an option, both glands are affected and going highwire inside me.  The hormone that these glands produce it completely "flooded" my blood system, reason why the blood pressure is super high, and the heart is beating far too fast.

So, he has put on some drugs that he hopes will start to block this hormone to circulate through my body as it has been for about 2 years now, I took my first dose of this new medication this morning, I should expect to see some drop on the blood pressure within 2 or so weeks, I have my own heart blood pressure machine and I was asked to start taking its readings next week, and daily in the mornings, until I see him again in 4 weeks.

I had to take some more blood tests at that clinic, and will have to take another 4 days prior to seeing him, obviously, apart from the daily records of my blood pressure readings, he will compare the blood tests results before and after I started this medication, side effects are very nasty and is no gurantee that it will work, if it doesn't, I will be in a lot bigger troubles than I am already so, I hope that this new medication manages to force the blood pressure to drop and hopefully normalise in time...!

Merissa and I, we couldn't have gone this way, if wasn't for Mr. A generosity, we would both still on public waiting lists for another year or more, having the help to go private, is far beyond our expectations, the costs are horrendous, this week alone in between both of us, on appointments, blood tests, and very expensive drugs, it cost us, very near $1,000, blood test alone are approx. $120 each 

Thank you so much Mr. Anonymous, for giving us this opportunity...!

We hope to be both on the right track, a long way to go yet but, a good start, nevertheless...!

Cheers
George


----------



## Jim15

Glad things are starting to come around. I'll be praying that the improvements continue and your medicines works well.


----------



## BJohn

George all things are possible through God our father. I will keep on praying for you and Marissa. 

Gods Blessing continue


----------



## bitshird

George, I know how hard it is to see your helper down I hope you get well too, I,ll be praying for the both you


----------



## wyone

You are both in our thoughts and prayers.  I am a true believer in the power of prayer.  I am also a believer in the reason you have Mr Anonymous in your life is because you have done and are doing things that merit that.  Good people draw good people.


----------



## robutacion

*Update*

Hi folks

Has been some weeks so, I though was time to update...!

Merissa is slowly getting better from the movements and pain levels, the weekly blood tests show some improvement and not alarming signs of any negative reaction from the new medications she is on.

Unfortunately, some of the side effects get her pretty sick every so often, all within the possible side effects caused by the medications, discussed by the specialist and within the various possibilities however, I can say that, there are some known side effects from the same medication that are far worse...!

As for myself, and after I was told that my Adrenal glands vein test was " very unusual", the specialist has put me on a very small dose of a new medication, this would be one of the best known drugs to stabilized my excessive production of Aldosterone and bring down the dangerous levels that my blood pressure have been showing for over 2 years.

I just say the specialist a few days ago (monthly visit) and I had a written report from the blood pressure daily readings from my own machine, starting 1 week after I started the new drug (1 week before anything changes) and it show a slight reduction of the average blood pressure so, a good indication that this new drug may be the correct one to control the Aldosterone levels.

As a result, he double the dose and ask me to continue to monitor the blood pressure readings.  I was also told that, the "unusual" test results I had, have been presented to a panel of specialists and that, has been agreed that, it seems that my left Adrenal gland is to one causing the problem and therefore, may be subjected to removal/surgery, as soon as possible so, will see...!

In resume, things are improving, that's all I could ask for...!

Cheers
George


----------



## sbwertz

How about an update on the two of you.  You are often in my thoughts


----------



## robutacion

Hi Sharon,

Thank you for kicking my butt for not updating more often, as I know, you have shown a special interest on the situation, of which we both appreciate immensely...!

We all miss you but, we understand that, you have spend much time with your friend, that I haven't heard anything about it, for quite some time so, an update on that situation would also be appreciated...!

Well, I'm starting to have my blood pressure stabilized, after a long 3 years, the "faulty" left Adrenal gland, has been controlled by a combination of medications that, took some effort and trial and error to find something that would actually work and not give too much of nasty side effects.

Like I said, the blood pressure is getting to where it should be but, my diabetes went off the roof so, we are trying to control that also.  The specialist is not yet sure if, I should have the faulty Adrenal gland removed or continue with the medication, I'm not certain if this drugs are something that I  can take long term if not, surgery will be required, will see.

As for Merissa, the news are not so good unfortunately, Merissa has had some horrendous problems from the intake of the Methotrexate, she started with tables one a week but she would feel really sick for days and just when she was just starting to feel better, was time to take another dose so, the specialist didn't like the way she was responding to it but, there is not a lot more out there to replace it so, he decided to have her to get an injection every week hoping that the effects would be less but, didn't work and she is now off that drug and waiting form the next appointment on the 5 February.

The specialist has told us from the beginning that, he would like to put Merissa on this new drug but, its expensive and the government doesn't allow new patients to start on it, not until they have been through a 6 month period on some alternative treatment with common drugs.  I believe, the 6 months are coming up in February and I think that is the reason why the specialist requested Merissa to see him 10 days before the next appointment date, made on the day of the last visit..!

We hope that, this is correct, Merissa needs something that will work better than the Methotrexate, sooner rather than later...!

I don't know much about this new drug/treatment, I'm sure the specialist has mentioned the name but, I don't remember.

There are 2 other issues that are becoming also a problem, the first one is that, specialist wanted Merissa to start ASAP on another drug called Leflunomide but, Merissa's blood pressure is also reading to high, we believe that has something to do with the medications she is taken for her condition, she always had a good/normal blood pressure, right until she started seeing this specialist so, we assume that, some of his medications are causing the blood pressure issue.

Interestingly, at the last visit, he checked her blood pressure, after we wrote the prescription but, from the pressure readings, he got quite alarmed and made sure that Merissa would understand that, she is not to take this drug, until she sees her GP and discuss the high blood pressure issue.  She has been taken her blood pressure every morning and, things need to come down before she can take this drug so, we are waiting to see the GP (next week) and see what the GP says about that...!

The other really nasty thing that Merissa is confronted with, has to do with her bad right knee, that has been a problem for 18 months or more.  I thought that, the problem was caused by the arthritis but, that was not the case, arthritis swelling has disguise the problem to an extent, when the swelling started to come down, the knee started to move sideways and to the right with each step, apart from being painful is making Merissa lose her balance all the time and fall, far to many times.

I also thought that, the specialist had spotted the way Merissa was walking however, he may hadn't realised that was than a limp because, Merissa was wearing long dresses on each visit.  Only the visit before this last one (monthly visits), I actually ask Merissa to lift her dress and ask her to walk a few meter for him to see, that when he freaked out and realised that he missed that problem all together, only after I made sure he saw what was going on, I also realised that he had missed it.

As a result, and after he tested her knee, he had no hesitation to ring a colleague of his, and make an urgent appointment for him to see Merissa, his speciality is knees...!
We are lucky that, Merissa doesn't have to wait another year or two before she could see a knee specialist, going publicly would take far too long so, we took the same route as we did with her arthritis specialist and go private.  

Again, Mr.A is the reason why we can do this, funds will run out sooner or later but, now that we are on this pass, is no turning back, I will deal with those issues, when the time comes..!

I apologise to everyone for not making the update earlier, in fact, that was my intention a few weeks back, and in conversation with a couple of different friends, I had mentioned that I needed to give an update but, I endup forgetting about it, sorry...!

Cheers
George & Merissa


----------



## plantman

Thanks for the update !! Be well George and Merissa !!!   From up over.   Jim  S


----------



## Jim15

Thanks for the update. You both will remain in my prayers.


----------



## sbwertz

I'm sorry she had so much trouble with the methotrexate.  I was one of the lucky ones who had no side effects from it.  However, after about 7 years, I was no longer metabolizing the tablets properly so I switched to weekly injections.  

The new drug is probably one of the biologicals.  I take Remicade (generic name infliximab).  There are several others as well.  They work very well for me.  I've been on it for almost 7 years now.  It is expensive, but is covered by Medicare here in the states.  

I've had a new development as well.  I have been diagnosed with Interstitial Cystitis.  It is a chronic bladder inflammation that feels like a permanent bladder infection.  Fortunately, with a change of diet, it is under control.  

George, do you have my diabetic cookbook?  If not I will send you a copy.  My husband is diabetic, and I keep his blood sugar under very good control by controlling the amount of carbohydrate in his diet.  He takes Lantus and a fast acting insulin if needed.  By controlling his carbs, he rarely has to take the fast acting insulin.  I'm pretty good at "decarbing" favorite recipes, so if you wife will send me some of your favorite recipes, I will see if I can make them more diabetic friendly for you.


----------



## wob50

I Hope a pray that everything works out at the Dr office for her. Keep us up to date on the next Dr visit


----------



## OZturner

George, Thanks for the update on you and Merrissa.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-comfficeffice" /><o></o>
Boy it doesn't just rain for you, it Pours. 
<o></o>
Good news is that you both have sound diagnosis, and obviously a good medical team.<o></o>
My wife Evelyn, after years of problems with her prolapsed feet, and then as a consequence, her Knees packed up due to the mis-placed load being exerted on her knees. <o></o>
Her Surgeon told her it was a "Bi-lateral Knee Replacement or a Wheel Chair".<o></o>
She had both knees replaced simultaneously. <o></o>
Her Pain Management was handled Magnificently, and after spending 2 weeks in Rehabilitation, plus several weeks as an Out-patient, <o></o>
She is up and and doing great.
She is a strong advocate for anyone needing a Knee Replacement.<o></o>
It was February 2010 that she had her operation, and now wishes she had it done in 2000.<o></o>
I hope and pray that Merissa has a similar successful outcome.<o></o>
<o></o>
Thoughts and Prayers with you both.<o></o>
Brian.


----------



## wyone

So all of that going on in George's life and he still comes here and offers advice on a regular basis.  You are both in my thoughts and prayers and I am really hoping for your Drs to find some answers and permanent solutions.  

You two are lucky you have each other to help you through this, but remember all of us out here who depend on your knowledge and expertise. We truly do care about more than your latest wood creation or technique.

You are a vital part of IAP and we all know Merissa is a vital part of you.  

Wishing you both the best medical care ever!


----------



## Cwalker935

I will include you guy in my prayers.


----------



## robutacion

Thanks folks, we appreciate your understanding and support...!

Merissa's knee is pretty bad,and to be quite honest, I don't know yet which way her appointment in a few days time, will do or, which direction, the situation will take from there.

I don't think that, the knee joint is the problem but rather the ligaments that keep it together and in place.  I remember well when it all started, it was about 3 years ago, she was trying to help me hook up a loaded trailer with wood in the vehicle's tow bar, she had the right left in the wrong position when she put some extra weight on it to help lifting the trailer just about 1" so that it would go in.  The jack was as high as it can go because vehicle and trailer were are different angles so, the jack was unable to lift any more.

It was like someone had shot her, she screamed and fall to the ground, she was holding her right leg as it she was having a bad cramp so, I lift her up and made her lay down on the back of the wagon.  She didn't walk for a while and all tests/scans didn't show anything out of place so, I got her a metal hinged full knee brace and that what she used for 3 months, so stand up and move around a little but not for long.

It kept coming and going but, that knee would let go when least expected and she would just fall to the ground hard, hurting herself a few times, from hands, harms and hip.  Once she fall backwards on the verandah decking, hitting the back of the head, knocking her cold for a few minutes..!

I knew that, something was very wrong with her knee but our doctor didn't seem to find anything and then we started with the Arthritis issue and all of a certain, all the blame went to it but, I knew better, I knew that was more than just inflammation.

It really started to worry me when I saw her walk strange, looking from behind as she walks, when the right foot hit the ground and she transfers all her weight (which is considerable, similar to mine @ about 110kg +) that knee, instead of staying straight, it swings to the right as if, whatever holds the knee together on the right side is not there and the joint wants to come out of the socket to the right of the knee.  Is really shocking seeing that...!

This last week, Merissa has become very stressed out about that knee and the extra pain she is now getting, she realised that, unless something is done and fast, something going to snap...!

I suppose, the urgency of the matter, was also realised by her Arthritis specialist, when she last saw him, that explains why, an average 3 months waiting to see such type of specialist, even going private, was waived and and appointment was made in a much shorter time period so, the only thing I can do is to make sure she doesn't do anything silly, until she gets seen by a knee specialist (next Tuesday, the 3/2/2015).

Until then, we wait...!

Cheers
George


----------



## robutacion

Hi peoples,

Is hard to believe that 2 years have passed since my last update here however, my closest friends and those who asked, got an update more regularly.

In these last 2 years, Merissa went through a few different treatments, trials are of 3 months minimum, they can be extended to 6 and even 12 months, if the improvements are considerable otherwise, the current treatment is stopped and a new one starts.

The third treatment was the one that shown more improvement even though it took some time for the body to react positively, blood tests indicated that the inflammation levels were still high but now stable, and that was the best that Merissa felt since it all started.

Merissa was on this "infusion" treatment for 1 year but more recently the specialist was not happy with the blood test results and decided to stop the Infusion and start Merissa on another drug.  When Merissa stopped the infusion, she was already started to feel a little more pain and swelling so, we put some hope on this new treatment and hoped it would be a fast acting one.

Not only the new drug was not a fast acting, it reverted any of the improvements Merissa got from the infusion and by the time the 3 months trial were done, Merissa was back to where we started, 3 years ago.

The specialists was concerned and disappointed with the results of the last drug, it should have been a lot better for Merissa but it wasn't so, he rushed to request another authorization for a new drug, this takes about 2 weeks to come back approved and Merissa can then get the drug.

We waited the 2 weeks and we hoped every day that it would come sooner as Merissa was in big troubles.  At the 2 weeks time, we got a call from the specialist to let us know, he got his request "rejected" and sent back to him so, he needed to see Merissa ASAP to go through all the paperwork again, and get another authorization on its way, and wait another 2 weeks.

At this visit to the specialist, he could see how bad Merissa was and the possible mistake he made to stop the infusion, as he explained it to us, the Authoritory Department, has strict rules on what the specialists can prescribe and the order those new drugs have to follow starting obviously with the less expensive to them right to the most expensive ones that they impose a lot higher restrictions for obvious reasons, Merissa specialists due to what he saw, seems to have jumped the drugs cue to one of the more expensive drugs but by doing so, I didn't follow the cue and they rejected his request until the drug that he requires to administer between the one after the infusion that did not work and the one he wanted to put Merissa on and that he believe, it provides a great percentage of good results so, we are now waiting (another 9 days to go) for that drug that we hope is going to be better than the last one, after the trial, the specialist can then re-apply to what he wanted in the first place.

Merissa is at the moment in very bad shape, again.  She can't walk, she can't hold a cup or a plate, and the pain levels are tremendously high, her fingers are starting to curl up at the joints and for about 3 1/2 weeks, she has been without any treatment, I get frustrated to see it like that, and I do the best I can to do all the "things" she would normally do, in the house and out plus, all my work that never stops however, I don't mind at all to have to do everything to help Merissa, she would/did do exactly the same for me, time and time again...!

At this momment, the wait is getting painfull and the fear that the new drug is not going to help Merissa, is more than enough to stress me out, as I'm sure, Merissa feels the same way...!

Lets hope things will work...!

Cheers
George


----------



## OZturner

George, Sorry to hear about Merissa, is not well again.
It is hard to believe it is two years since that previous Post, it only seems a short time ago.
It is annoying that the Health Department has Restrictions and Protocols for Prescribing Specific Medications for Certain Conditions. 
As you pointed out it is designed to ensure that the application of drugs is followed for Certain Conditions, to avoid Doctors Leap Frogging Lesser Costing Medications, to Prescribe the Latest and Possibly More Expensive ones ahead of trying the Lesser Costing.
This system does take away from the Doctor his ability to Prescribe what he feels will be best for the Patient Now. 
But regrettably, in our System of Government Assistance in Subsidizing the Cost of many Expensive Medication and only charging the Patient a Nominal, or Substantially Reduced, and sometimes a Zero Cost to the Patient.
I think I can recall in the previous post, you had mentioned that her Doctor wanted her to Try a particular Medication, that wasn't on the List of Subsidized Medications, and it would have cost an Arm and A Leg to Buy it, and it was out of your reach. 
As in Merissa's situation, she has tried so many, and to have to take one that her Doctor passed over, is most unfortunate. But Regrettably It Is What It Is.
Here's hoping it this one is the one that will do her Good.
My Thought's and Prayers are with you both again.
Sincerely,
Brian.


----------



## robutacion

OZturner said:


> George, Sorry to hear about Merissa, is not well again.
> It is hard to believe it is two years since that previous Post, it only seems a short time ago.
> It is annoying that the Health Department has Restrictions and Protocols for Prescribing Specific Medications for Certain Conditions.
> As you pointed out it is designed to ensure that the application of drugs is followed for Certain Conditions, to avoid Doctors Leap Frogging Lesser Costing Medications, to Prescribe the Latest and Possibly More Expensive ones ahead of trying the Lesser Costing.
> This system does take away from the Doctor his ability to Prescribe what he feels will be best for the Patient Now.
> But regrettably, in our System of Government Assistance in Subsidizing the Cost of many Expensive Medication and only charging the Patient a Nominal, or Substantially Reduced, and sometimes a Zero Cost to the Patient.
> I think I can recall in the previous post, you had mentioned that her Doctor wanted her to Try a particular Medication, that wasn't on the List of Subsidized Medications, and it would have cost an Arm and A Leg to Buy it, and it was out of your reach.
> As in Merissa's situation, she has tried so many, and to have to take one that her Doctor passed over, is most unfortunate. But Regrettably It Is What It Is.
> Here's hoping it this one is the one that will do her Good.
> My Thought's and Prayers are with you both again.
> Sincerely,
> Brian.



Thank's Brian,

Yes, you are correct, at that time, that medication would cost approx. AU$25,000 per year without any subsidy and that was obviously not possible for us.

From what I understand (specialist hint), the treatment we are waiting for, and the only other option available at this point in time (hope they come up with some more and more effective medications...!) does cost a lot more than 25G's per year, from the lowest cost to the highest, there is an increase of the costs, many times of many thousands of dollars.

I can understand the government principle when it comes to what they subsidise and what medications they include, I also understand the fact that some doctors do misuse the medications they prescribe, in this case, only specialists can prescribe these sort of medications, and that themselves have rules to follow but, forgive me for not agreeing with most of it, and force people to suffer with drugs that they already know will not work or have very limited chances to be of benefit to the patient.

We don't have private health insurance so, using the private system to deal with a situation, may a faster but, the costs can be considered and out of question for people with low incomes.  We pay more than if we had private insurance, the part we are asked to pay as the "gap" would be almost impossible to cover, and as any other private work done, if we haven't had the tremendous and most appreciated assistance/support from Mr. Anonymous.

I don't even want to think of how Merissa would be today, if we had to stay in the health public system, Merissa is not well at the moment but there is some light at the end of the tunnel and while, she have had some relief from her condition for a considerable amount of time since it all started, something she wouldn't have had in the health public system, and to validate what I just said, when she was first diagnosed with the debilitating RA, our GP confined with us that the waiting list to see this type of specialist would be between 2 and 2 1/2 years, oh boy, these waiting lists are a cruelty...!

So, and as I said before, Merissa is not in a good place at the moment but, she would be a lot worse if we hadn't had the opportunity to go private...!

Better days will come for Merissa, we will be OK...!

Cheers
George


----------



## Skie_M

I got an email ad last night ... something about how a new pill was recently made legal statewide in the USA ... you might be able to purchase it and have it sent to you.  It's a mail order "over the counter" type of drug.  It MIGHT NOT be legal in Australia, but I hope that it is, as it's pain fighting ability should help her a lot.

It is called Cannabis Oil (yes ... oil made from marijuana).  I've seen a lot of documentation concerning the uses of medical marijuana for non-specific systemic pain due to cancer treatments and other similar similar things, whole body joint pain included.  You don't smoke this stuff, it's just a pill you take.


----------



## edicehouse

George,
I missed the OP, but man thought, prayers, good vibes going your way.  I saw where you put she is a little tougher, however I believe women are much tougher than we are!


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## Jim15

I's sorry that she can't get the medicine she needs. She and you will remain in my prayers.


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## TellicoTurning

George,
I can empathize with you on watching your wife suffer and not be able to help.  My wife went through something similar starting in 2013... she came down with a blood infection that almost took her from me... she wound up in the hospital for 2 weeks, then transferred to a nursing center for 4 months.  I finally got her home and 10 days into her stay at home, she suffered a stroke that put her back in the hospital for again, only to find out the blood infection was back and has settled in her back and around her heart.  She had to have open heart surgery to replace a valve in her heart, then home again with a port in her chest for another round of infusion to combat the infection.  In the end, she has come out of most of this, but the infection left her with two fused vertebrae in her lower back that makes it impossible to stand for more than a short time.  And one of the medications she takes for the heart problems causes tremors in her hands.  Plus she's diabetic and since August we've been fighting edema in her right leg.  The doctors prescribed wound treatment and over the course of the treatment they used a wound cover that had silicone in it and we're pretty certain she's allergic to silicone... her leg got worse instead of better, looked almost scalded... as of last night, after almost two months treating it with just a surgical gauze, it's finally beginning to look healed. 
It's disheartening to watch her suffer through all this.  
I know you are going through the same feelings... hang in there and things will get better.


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## steamshovel

prayers sent for the both of you. good luck


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## Cmiles1985

I am hoping the best for your helper, your partner, your friend and your wife George. I am sorry that she is in so much pain; I really hope she is able to get the treatment she needs.


Sent from my iPhone using Penturners.org mobile app


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## gimpy

Your and your "helper" are in my prayers.  God's Peace


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## leehljp

Praying for her and for you!


----------



## robutacion

Skie_M said:


> I got an email ad last night ... something about how a new pill was recently made legal statewide in the USA ... you might be able to purchase it and have it sent to you.  It's a mail order "over the counter" type of drug.  It MIGHT NOT be legal in Australia, but I hope that it is, as it's pain fighting ability should help her a lot.
> 
> It is called Cannabis Oil (yes ... oil made from marijuana).  I've seen a lot of documentation concerning the uses of medical marijuana for non-specific systemic pain due to cancer treatments and other similar similar things, whole body joint pain included.  You don't smoke this stuff, it's just a pill you take.



Hi mate,

We are also aware of the many treatments that are coming out of the Marijuana plant, its medicinal potential and positive results with some people.

I don't know if we could use it or not if we could get our hands on it however, if Australia have not approved the used medicinal Marijuana she would have lots of problems because Australia Police is enforcing the non-use of certain drugs when driving and Marijuana is on their top list, with random testing on the roads, their testing tools now are very accurate and for anyone found with those prohibited drugs on their systems, they are in big troubles.

Merissa was doing most of the driving but, I have to do it now and until her legs/knees get better.

Thank you for your thoughts, I will need to find some more info about it.

Cheers
George


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## Dalecamino

George, warm thoughts for you and Merissa. Hope it works out well.


----------



## sbwertz

TellicoTurning said:


> George,
> I can empathize with you on watching your wife suffer and not be able to help.  My wife went through something similar starting in 2013... she came down with a blood infection that almost took her from me... she wound up in the hospital for 2 weeks, then transferred to a nursing center for 4 months.  I finally got her home and 10 days into her stay at home, she suffered a stroke that put her back in the hospital for again, only to find out the blood infection was back and has settled in her back and around her heart.  She had to have open heart surgery to replace a valve in her heart, then home again with a port in her chest for another round of infusion to combat the infection.  In the end, she has come out of most of this, but the infection left her with two fused vertebrae in her lower back that makes it impossible to stand for more than a short time.  And one of the medications she takes for the heart problems causes tremors in her hands.  Plus she's diabetic and since August we've been fighting edema in her right leg.  The doctors prescribed wound treatment and over the course of the treatment they used a wound cover that had silicone in it and we're pretty certain she's allergic to silicone... her leg got worse instead of better, looked almost scalded... as of last night, after almost two months treating it with just a surgical gauze, it's finally beginning to look healed.
> It's disheartening to watch her suffer through all this.
> I know you are going through the same feelings... hang in there and things will get better.



Chuck, my husband is diabetic and we have had great luck using Wound Honey to treat wounds that are hard to heal.  

This is the one we use

https://www.amazon.com/Eras-Natural-Sciences-Manuka-Wound/dp/B001LEXKHY

It healed up lesions on my husband's feet when even placenta bandages wouldn't heal them.

Sharon


----------



## sbwertz

George, I am so sorry!  It makes me realize how lucky I am that I found a medication that worked for me (Remicade infusions) and that has had no side effects.  I hope she is feeling better soon.  I've been there....hands so swollen I had to have my wedding ring cut off.  Yes the remicade is expensive...without Medicare my infusions would cost me $40,000 a year, but it keeps me mobile.  Hope they get her back on something soon.  It is not only physically debilitating, but it is emotionally debilitating.  It is awful to have to depend on someone else to button your shirt or tie your shoes, or help you in the bathroom.  I pray every time they take my blood tests before my infusions that there isn't going to be anything show up that would cause them to have to stop the Remicade!


----------



## robutacion

*Merissa update and my big mistake...!*

Thanks Sharon,

Yes, is good to know your treatment is working well, you certainly don't want to start all over again, huh...?

I wish that this update was a more positive one, things are not going as we expected and I messed-up big..!:frown:

I have been very pissed-off with her specialist for causing the situation she has been on there is, not start the new treatment weeks ago, he messed up and he knows it in the mean time, Merissa has been in agony and I have been totally stressed with all these delays, seeing her get worse every day.

Last week, I contacted his office as I wanted to contact the department in New Zealand that processes these species authorizations, we have always been told the waiting time after the documentation is posted, is between 1 and 2 weeks last week we were about 10 days since the info was posted and I wanted to find out if the department has already processed the forms and if posted back or not.

A few hours later I get a call from the specialist to let me know that the Department does not offer a public phone number so, I couldn't contact them but he the specialist knew what I was after and he said that he has been in contact with the Department and that the forms have been approved and posted back.

This was last Thursday so I said to Merissa that, would be a good idea to get the blood test required before the new treatment/infusion can be given, in my head I though that, if the paperwork was on its way last Thursday, we or the Hospital where these infusions are administrated would receive the approval, that would mean that we could get it from the chemist and make an appointment ASAP to have the new treatment started.

We knew that the blood test results would have been provided to the specialist and the Hospital that will give the injections by Monday so, if everything went right, Merissa would be getting her infusion on the Wednesday or the day after but that was not the case.

We waited Monday, Tuesday, and Wednesday, no mail and or a call from the hospital to let us know the treatment could start soon, Wednesday lunch time, I contacted that hospital to find out it they have received the approval or not, after passing the call between a hand full of different departments, I finally got someone that could tell me something about the issue, I was told that they have just received the treatment authorization that morning (bull$#!t) and that they were going to contact us so, when I asked when could Merissa start the treatment, she tell's me that she can't get in before the 24 March they were full, this was the 8 March.

Well, I got really upset and regardless of what I would say, it was no way I could get Merissa in before the 24/3.
I got on the phone immediately with her specialist and I "expressed" my disgust about the situation, somehow, he already knew of the treatment date I was given just 30 minutes prior and he said that he couldn't do anything about it, I reminded him of how Merissa was suffering and getting worse every day when she should have had the treatment started weeks prior, he knew I was "boiling" so he said that, Merissa should shouldn't be getting that worse and in so much pain, he asks, has she been taking the tablets I gave her last time you guys were here...?

Now I was baffled, tablets she should be taken prescribed that day..? the only thing I remember was a couple of pages he wrote for us to follow as soon as the treatment would start, in fact, there was a 14 day instruction steps, for the day she would get the first infusion, Merissa also got a prescription for 2 lots of tablets, the same drug but is 2 different dosages, 5mg and 25mg, the name of it was mentioned on the instruction page for day 1 of the 14, she was to take 7.5mg that morning of the infusion, and then the dosage would change during the 14 days course, this would coincide with the day of the second infusion, they are to be administrated fortnightly.

He then tells me that yes, he gave us the instructions for the 14 days from the start of the treatment BUT that, he said that Merissa should start taking 7.5mg daily until the infusion day, that we both missed and I particularly have been very upset because Merissa trusts me to take instructions from doctors as she get's confused very easily, I keep telling her that is not right, that she is not taking anything for the inflammation in her body while she is waiting for the infusion so, when I found out that Merissa has been 12 days without these tablets that would have stabilised her enough while waiting for the infusion and I can not forgive myself for making such a painful mistake...!

She has had 2 tablets (one daily in the morning with food), she took the one on last Wednesday after lunch but that doesn't matter, what matters is that she is now getting a little help from these tablets, I will be ringing the specialist today (Friday afternoon) as per his request, for the possibility to increase the dosage slightly, Merissa says that she can feel an improvement already only after 48 hours so, we will see what the specialist says.

He now knows that, he messed up once and that I have been frustrated with it but now, he also knows that I messed up and I don't really know which one is worse, I feel bad enough for not taking enough attention, I suppose, he didn't thing necessary to add that to the instructions pages, I have been quite OK with following his instructions in the past so, I can't blame him, I can only blame myself.

Poor Merissa, she tries to comfort me and keep saying for me not feel so bad about it, she can remember him saying that either, that  it was an honest mistake, yes it was but, that doesn't change the fact that she suffered a lot more than she should if she had taken the tablets.  This is a good example of the sort of person she is...!

I sincerely hope these tables she is on now, do what the specialist said they should do, it will make the wait for the infusion a lot less painful for both of us, for sure...!

Better days will come..!

Cheers
George


----------



## Edgar

Sorry to hear about the mixup in the doctor's instructions, George, but I'm very happy to hear that Merissa is on the right medication and starting to get some relief.

I know that you feel badly about the situation, but try not to beat yourself up too much about it. It's difficult to always remember everything that a doctor tells you verbally when you have so much on your mind during a visit. He really should have included those "start right away" instructions in his written notes. 

The delays in getting her infusion treatment are just ridiculous.


----------



## Skie_M

Mmmm ... speaking of notes, to help prevent this next time, it may be a good idea to bring a notepad and jot down all important details as they come up.  Appointment dates, visit locations, test results due back on x day, return visits for followups, and double-check for any and all prescriptions.


----------



## luckyscroller788

Wow, a sad and unfortunate situation. Like Edgar said, you cant beat yourself up for that. Why didn't the doctor give you a written (well, not hand written if your doctors write like they do here in the states)or typed up set of care instructions? It is impossible to remember all that's said in situations like this when you've got so much on your mind, and to make that more complex, the doctors use terms and big fancy words that most times we really have no idea what they really are. Also, if it wasn't for your understandable frustration and disgust with the way things were being handled, and you contacting them , you STILL wouldn't have known. 
 Don't let that get you down, a person can only do so much, and she needs you to be strong now more than ever. And...when Merissa is back to feeling pretty good ( and it will come soon) you've got to be strong just in case she chases you around with a cast iron pan for payback!!!
 Hang in there George, we will keep you both in our thoughts and prayers!


----------



## west aussi

George, Having been through something similar the only advice I can give is no matter how hard it is, keep a positive attitude and ride over the crap. If you don't your in trouble. The 2 greatest things we have in our life is LOVE and HOPE and we see your love for Merissa and our hopes and prayers go out to you both. Ian & Jill.


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## robutacion

Thanks guys, I always appreciate kind words...!

I think I may start to take my voice recorder and use it (with the specialist knowledge and permission) and hear it all again at home and when more relaxed, they may help to pick up on things missed during the consultation...!

The tablets that Merissa is now on, the ones she was suppose to have start taking after the specialist appointment but that I stuffed-ud is the *Panafcortelone*, she is on 7.5mg daily but soon after the first infusion (that we so much have been waiting for...!) she will go to 60mg for a few days, then back to 30mg a few days later back to 7.5mg, this will all have to happen in 14 days cycles, as per the infusions.

Has been now a few days since I realised my mistake and got Merissa on those tablets, according to her, the pain sharpness ha been reduced and the swelling in her hands and feet are a little reduced, these tablets alone are not capable of stabilise the RA, they are a supportive drug for the new infusion treatment she will start on the 24 March.

Any improvement even if slightest, is always welcome...!

We appreciate any and all positive thoughts..!

Thank you,

Cheers
George


----------



## sbwertz

Do you know what her new infusion is going to be?  Just curious.  Hope it works fast!  

Give her my love,  she is often in my thoughts and always in my prayers.


----------



## robutacion

sbwertz said:


> Do you know what her new infusion is going to be?  Just curious.  Hope it works fast!
> 
> Give her my love,  she is often in my thoughts and always in my prayers.



Hi Sharon,

According to the info sheet the specialist gave her, the name is *Rituximab* the Brand name is "Mabthera".

I'm most surprised and pleasantly amazed as to the improvements Merissa has shown since she started on these new tablets Panafcortelone, even though at a fairly small dose compared to what she will be on for the first week after the infusion (60mg) and then 30mg for the following week and then the next infusion is administrated and from what I believe, the intake of the new tablets will be repeated every 2 weeks for at least 3 months, the minimum time required for the test.

We also speak of you often, if not for the association you have with the visually impaired people, your pen turning and off-course your battle and experience with the RA.

While I'm talking about pen blanks, any news of the big box I sent..?

Cheers
George


----------



## SteveJ

George

I am so sorry your helper has been down, but glad that you at least have a treatment plan.    Rituximab is one of the meds my son is on for his cancer.  His treatment is called R-CHOP, each letter representing a different drug.  Costs about $30,000 for each treatment, hopefully ending at six.  She will probably get a rituximab/methotrexate combo which hopefully both costs less and has less side effects.  Watching a loved on receive these powerful drugs is difficult to say the least.  Let her know that she is being prayed for.


----------



## robutacion

SteveJ said:


> George
> 
> I am so sorry your helper has been down, but glad that you at least have a treatment plan.    Rituximab is one of the meds my son is on for his cancer.  His treatment is called R-CHOP, each letter representing a different drug.  Costs about $30,000 for each treatment, hopefully ending at six.  She will probably get a rituximab/methotrexate combo which hopefully both costs less and has less side effects.  Watching a loved on receive these powerful drugs is difficult to say the least.  Let her know that she is being prayed for.



G'day Steve,

Thank you for your words, I will let Merissa know of your thoughts...!

Merissa doesn't do well at all with the methotrexate, she has been on it in the beginning but she had to stop. For whatever the reason, the Department that gives the authority for these treatments seem to be pushing methotrexate on each treatment there is, they will only allow a new drug to be tested if it is done in conjunction with a certain amount of methotrexate.

The specialist knowing how Merissa reacts to it, have organised a special tablet that will need to be taken 4 hours after each weekly methotrexate injection, that tablet does cancel the methotrexate before it starts to do harm, this seems to be working and Merissa doesn't seem to suffer from any of the side effects she knows well from the methotrexate intake.

I was not sure of the treatment costs but I have ben told that it was very expensive and reason why, the patient will have to go through many other less expensive treatments before this one is authorised.  As far as I know, this new treatment will be administrated twice a month for at least 3 months so, you are correct, the 6 treatments are all that is schedule at this point.

Cheers
George


----------



## robutacion

Hi everybody,

I have some update for you guys, I will try to be short and avoid extra details as last Friday 24 March (Merissa's new infusion treatment), endup being a very stressful day for us, including our 2 pet dogs which the smallest Teddy was also very sick.

Anyway, we were at the designated Hospital (65km away) at 10:00am as requested, only to be told that, this treatment was not like the previous infusion that lasted 2 hours, this one would last at least 6 hours.

We had other appointments for that day, based on the 2 hours previous treatment time so, everything went highwire from there. 

Being so far away from home with no place to wait with the dogs, in the 34° heat, I decided to drive home and wait there.  

About 1:00pm I got a call from Merissa to let me know that, they had to stop the infusion because she came with a nasty reaction from the infusion (so we thought).  She was panicking, a doctor was called to asset her and lots and lots of blood was taken for all sorts of test, trying to identify what caused the reaction.  On that call, Merissa also said that the doctor had told her that it was a good chance she would have to be admitted overnight so that they could monitor her closely.

A few minutes later I got a call from this female doctor, she wasn't aware that Merissa had called me with the news so basically, she said pretty much the same thing Merissa said apart from the fact that, she was waiting for one of the blood tests results to determine if Merissa had to say overnight or not however, if she was to come home, there was a risk she would get sick, if some of the described symptoms would develop, I would have to drive her to the emergency immediately, both Merissa and I did stress the fact that home was a better place to be.

I was told to ring back at 4:00pm to find out if she would stay there or I could get her home and for a few hours I was stressed out but I made that call only to be told that, the preliminary blood test was OK so, the risk to big problems has been adverted.

Another 65km later at about 5:00pm I was helping Merissa to the vehicle, she was weak from having all that blood taken and a bit shaken up from the events and the fact that, she had half of the new drug in her system and a bit sick in the stomach.

We got home safely and everyone settled down for the evening, I kept a close look any strange signs of troubles from her but thankfully, nothing bad did eventuate.

We are now waiting for her specialist to contact us with some instructions on how to proceed next and when can Merissa return for another attempt...!

Oh boy, quite a day that was, fortunately, it endup well, Merissa was home and I still managed to get Teddy at the Vet that day at the appointment time and since Teddy has made an amazing recovery, I'm a lucky man...!

Cheers
George


----------



## Jim15

I'm glad she is ok and didn't have to stay in the hospital. She will remain in my prayers.


----------



## OZturner

So pleased that Merissa is progressing after her Incident, and hope that she can successfully complete her treatment, if possible. Also great new about Teddy.
Keeping you and Merissa, in my thoughts.
Regards,
Brian.


----------



## sbwertz

Oh George!  If you guys didn't have bad luck you wouldn't have any luck at all!  I hope she is going to be able to tolerate the new drug.  I know some people here who are on it, and it is working really well for them.  Keep us posted.


----------



## robutacion

sbwertz said:


> Oh George!  *If you guys didn't have bad luck you wouldn't have any luck at all!*  I hope she is going to be able to tolerate the new drug.  I know some people here who are on it, and it is working really well for them.  Keep us posted.



Yep, you summarised it perfectly...!:frown:

Our hope is that this new treatment will work well, not the best start but, she will be trying it again in a couple of weeks, her specialist as confirmed this today...!

Cheers
George


----------



## sbwertz

George, I just got word from my son, who has multiple sclerosis, that they are starting him on rituximab.  Apparently it is the hottest new MS treatment.  Hope he does well on it.  

Has your wife started treatment again yet?


----------



## bobjackson

George, prayers sent, and will continue.


----------



## Dalecamino

George and Sharon, my girlfriend Susanne was diagnosed with Anca Associated Vasculitis. She received two doses, each dose weeks apart. Backed up with a very expensive pill regiment. She still has lung congestion but is taking meds for that as well. The Retuximab did its work, and the Vasculitis in her Kidneys has cleared up for now anyway. George, I sincerely hope this medication works as well for Merissa.


----------



## robutacion

Thanks guys...!

There has been a number of things happening and somehow preventing Merissa to start that new treatment.  After the first failed attempt, the specialists had to make some additional permission requests to allow Merissa to have the full treatment and not half of it so, we waited for a little while.

The permission finally came and an appointment was made for the 21 April but, we both developed some Flue/Cold that week so, we had to cancel her appointment as Merissa can not have any of those things when the treatment is administrated.

The new appointment is made for the 12 of May so, we hope there will be no problems.

Is good to know that other people you know have had good results with this type of treatment, we are certainly putting a lot of hope in it...!

Cheers
George


----------



## robutacion

Hi everybody,

The 12 May appointment never happened (same reasons as before) and after a few more weeks of waiting, Merissa finally completed her first new treatment/infusion last Wednesday 7/6/17.

This time everything went well, from 9:30am to 3.30pm finishing a little early than expected and that was fine by me.

The only obvious side-effect was her short of breath that improved each day beeing fairly normal now.

Her next infusion is on the 21/6, we don't know yet if there are any more infusions on this treatment, we will find out soon.

And while Merissa feels OK, is too early to notice or expect any improvements that will be something that time will tell...!

Cheers
George


----------



## stonepecker

Sending more prayers and good thoughts your way.


----------



## sbwertz

Good news, George.  I really hope this works for her.

We've had a rough couple of weeks, too. My husband just got out of the hospital last night.  He got a MRSA infection in his toe (he's diabetic), that went into the bone.  He spent 4 days in the hospital. They started him on six weeks of twice a day IV infusions of Vancomycin ($1700, insurance wouldn't cover because   I did the infusions at home.)  After five days at home he suddenly developed an allergic reaction to the antibiotic.  Spiked a fever, broke out in a head to toe itchy rash, etc.  Back to the hospital for another four days.  They changed him to a different antibiotic, that seems to be working fine.  They were getting ready to send him home when they told me that the Daptomycin was going to cost $10,000 for the 29 days he would need it!  Medicare covers at-home infusions like a regular prescription.  So they set it up so that I take him to an infusion lab every day for the infusion, so Medicare part B will cover it.  That was our heart test for the week!  He still may have to have surgery on the toe if the antibiotic doesn't get rid of the infection.  But toe amputation can cause other problems with the foot (neuromas, bunions, etc) so they want to avoid that if possible.

The first choice of antibiotic for MRSA is sulfa, and he is allergic to sulfa.  This is the third time he has had a MRSA infection in the last ten years.


----------



## robutacion

Thanks everybody,

Sharon,

I'm sorry to hear about your husband toe infection/problems, when I was reading it, I was thinking that removing to infected toe would be a possible solution but then, I've read about the complications that he would be exposed to and I realized that wouldn't be any good.

I find it hard to believe sometimes when I hear about drugs/treatments costs, why so much...?

I'm glad that you are able to minimize the costs by doing some of the required work, I doubt they would allow it here...!

We both saw out GP today, we are waiting on the blood tests results after Merissa's infusion, not arrived yet so, we didn't have the GP opinion but he will call if is anything to worry about.

So far so good...!

Cheers
George


----------



## robutacion

G'day,

Well, Merissa is in big troubles, the 2 Retuximab infusions/treatment did come out as failed, not that surprised us as Merissa never had any improvement while on it, in fact, there has been now over 4 months since Merissa has had any relief.

According to the Department in charge of these special treatments authorizations, there are 5 possible treatments allowed/covered by the Government funds, Merissa is on her last one that will arrive today if it fails, she has to wait 5 years before she can apply again.

These new "Biological" treatments are extremely expensive, tens of thousands of dollars each so, I can understand why the Government is not only selective but also restrict with their prescriptions, however, the though/possibility is most unsettling and scary.

According to her specialist, this last Biological treatment called Certolizumab also known as Cimzia, will be administrated with a cocktail combination of "old style" drugs hoping that Merissa will have a positive/improved reaction.

The drug is in a form of an injection that will arrive this afternoon from which I will administrate it to her so, it would be reasonable to say that Merissa is starting today her 5th and last approved treatment for the next 5 years so, is extremely important that it will work and start to work sooner rather than later as Merissa has reached a very high inflammation percentage with lots of swelling, joints "curling" and pains.

This has been a long road and one that would not have happened this fast if wasn't for the extreme generosity of Mr. Anonymous,  allowing Merissa to be put in the "private" system and have access to private specialist and test facilities that would otherwise not be possible or at least, be under waiting lists that can be years long...!

So, we try to keep positive but I know that Merissa is getting extremely agitated and frustrated, I try my very best to help her in any way I can...!

It will take a few weeks before we know if this new treatment is working in some way, I will keep you guys updated...!

Cheers
George


----------



## Jim15

Merissa and you will remain in my prayers.


----------



## stonepecker

Sending healing thoughts and saying prayers for Merissa.

Warmest thoughts to you both.


----------



## ajollydds

Thanks for sharing, George. My prayers are with you both.


----------



## Gwatson50

All the best to you And Marissa.. 


Sent from my iPhone using Penturners.org mobile app


----------



## robutacion

Thanks, guys...!

Cheers
George


----------



## Rick_G

Keeping both you and Marissa in our prayers George.


----------



## Noot17

Thanks for sharing, George. I appreciate everyone's openness and support in this forum. I'll keep you guys in prayer.

Eric


----------



## jennera

We will be praying.

Sent from my SAMSUNG-SM-G890A using Tapatalk


----------



## lyonsacc

Will keep you both in my thoughts and prayers


----------



## MikeL

I hope and pray for better days ahead for you and Merissa!  Hang in there.


----------



## magpens

Thinking of Merissa .... and also you, George !

Hoping for improvement and better days ahead.


----------



## ljpilcher@suddenlink

*Casual Conversation*

So sorry about your helper.  I can sympathize with you.  My wife also is in almost unbearable pain 24/7.  I started with Knee replacement surgery.  Severe burning all the time.  Four Doctors told her it was a pinched nerve in her back (Neurological testing seemed to confirm that).  So she had the back surgery to fuse the vertebrae on either side and relieve the pressure. No help for  the Knee and now has the same pain  in her back.  She never got involved much in the woodturning but none the less she is still my helper.


----------



## znachman

I send you and your wife Prayers and all the best from the holy city Jerusalem Israel


----------



## robutacion

ljpilcher@suddenlink said:


> So sorry about your helper.  I can sympathize with you.  My wife also is in almost unbearable pain 24/7.  I started with Knee replacement surgery.  Severe burning all the time.  Four Doctors told her it was a pinched nerve in her back (Neurological testing seemed to confirm that).  So she had the back surgery to fuse the vertebrae on either side and relieve the pressure. No help for  the Knee and now has the same pain  in her back.  She never got involved much in the woodturning but none the less she is still my helper.



Thank you to everybody, Merissa reads these posts and she gets overwhelmed but I have to make reference to you Larry (ljpilcher@suddenlink) and your wife's situation.

It's bad enough that we can suffer so much from issues such as the ones of Merissa, she is only 44 years old while I'm a 60 years old fart, but she got "hammered" pretty bad with this rheumatoid arthritis, her right knee and hip are half destroyed and pains associated with that are enough to drive anyone up the wall however, one would believe/expect that surgeries such as the ones your wife has been exposed to would minimize the pain and that didn't seem to have happened so, it makes the possibility of surgery(ies) that in Merissa's case were rejected due to her being still too young, a proposition that goes from a possible solution to an extra aggravation and that is not something that I would like to see Merissa going through.

My wife Merissa has been a lot more than a "helper" with the trees/wood/timbers,she has been my HELPER in every step of my life since I met her 17 years ago, a 24/7 companion/partner that I wish I had met long ago.

Did I say that I love her very much..?:biggrin::wink:

Cheers
George


----------



## robutacion

*Merissa update*

Hi peoples,

Just a quick update on Merissa's new treatment.

There has been a considerable reduction of the inflammation levels in Merissa's body, the swelling has been minimal and the pain tolerable so far (touch wood...!).

The new treatment "Cimzia" that I inject on her together with a cocktail of other older treatments/drugs seem to be helping a lot, there are some side effects that are a little annoying but, a small price to pay considering the possibilities.

In resume, so far so good, let's hope Merissa's body can sustain this treatment for a long time and that the slight improvements never stop happening, it may be not cured but keeping it under control has been an arduous road.

Cheers
George


----------



## Talltim

Glad to hear of the positive progress.


----------



## robutacion

Talltim said:


> Glad to hear of the positive progress.



Thanks,

Cheers
George


----------



## Cwalker935

I am glad that Merissa is finally getting some relief and pray that it continues.


----------



## Jim15

Glad to hear that it is working. I will pray it keeps helping her.


----------



## Jim Smith

George,

I am very sorry to hear of you and your wife's difficulties.  I will  keep both of you in my prayers for a complete recovery.  

Jim Smith


----------



## Scissortail Pens

That's excellent news George! Cheers to hoping it continues.


----------



## jennera

Happy to hear she is getting some relief!  We will continue to pray for both of you.

Sent from my SAMSUNG-SM-G890A using Tapatalk


----------



## sbwertz

George, how is Merissa doing now.  Haven't seen an update in a while.  Hope she is still doing well.  I think of both of you often.  Give her a hug for me

Sharon


----------



## robutacion

sbwertz said:


> George, how is Merissa doing now.  Haven't seen an update in a while.  Hope she is still doing well.  I think of both of you often.  Give her a hug for me
> 
> Sharon



Hi Sharon,

Well, the new treatment itself is helping her but she has to interrupt it when she comes out with a cold or anything else that makes her sick and these last few months she had to stop treatment a couple of times for about 2 weeks at the time and if it happens when the new injection is getting due that means that the 2 weeks the injection lasts for is almost gone and unless she gets if every 2 weeks Merissa really struggle, is like as the 2 weeks are wearing out, her body tells her is getting time for another shot so, if she has to endure a couple of weeks without the treatment medication on her, she goes backwards and in no time the RA symptoms attacks her badly.

It is difficult to predict if this current treatment is going to continue to work and for how long, the hope is that it does even though it makes Merissa feeling a little sick for the first 72 hours after she gets the injection that I give her but after that, she is OK(ish).

Cheers
George


----------



## sbwertz

Yeah, I have the same problem with the Remicade and Methotrexate.  I have to go off them if I am sick with anything.  Fortunately, I seldom have to be off for more than a week.  A combination of Naproxen and Tylenol plus the Lidocaine patches and cream get me through the rough spots.


----------



## robutacion

sbwertz said:


> Yeah, I have the same problem with the Remicade and Methotrexate.  I have to go off them if I am sick with anything.  Fortunately, I seldom have to be off for more than a week.  A combination of Naproxen and Tylenol plus the Lidocaine patches and cream get me through the rough spots.



Yeah, Merissa still has to take the Methotrexate injection every week, that is a "condition" to have the new treatment approved, however, the doctor prescribed her some tablets that she needs to take 4 hours after the injection, that cancels most of the nasty side-effects of the Methotrexate so, if she gets sick all of her RA medications has to stop to be taken...!

I will look into the Lidocaine patches, they seem to be a good option.

Your willingness to help is most appreciated, thank you...!

Cheers
George


----------



## sbwertz

Merissa makes me realize just how blessed I am.  I get no side effects from my methotrexate shots, no side effects from my remicade, and the combination of the two have kept me in remission for almost 15 years.  Only when I have to go off my meds because of an illness do I have problems with pain from the RA.  

I had Pneumonia in February, and had to go off the meds for about two weeks.  That's when the lidocaine and naproxen/tylenol come in to play.  Unfortunately, I got the pneumonia just a few days before my remicade infusion was due, so I was at the very end of the meds cycle.  So it nailed me pretty good.  It took about a month after getting back on the meds to be back in full remission.  Now if they could just come up with something for plain old osteo arthritis that works as well.  The lidocaine cream and patches are very helpful for osteo arthritis pain as well.


----------



## robutacion

sbwertz said:


> Merissa makes me realize just how blessed I am.  I get no side effects from my methotrexate shots, no side effects from my remicade, and the combination of the two have kept me in remission for almost 15 years.  Only when I have to go off my meds because of an illness do I have problems with pain from the RA.
> 
> I had Pneumonia in February, and had to go off the meds for about two weeks.  That's when the lidocaine and naproxen/tylenol come in to play.  Unfortunately, I got the pneumonia just a few days before my remicade infusion was due, so I was at the very end of the meds cycle.  So it nailed me pretty good.  It took about a month after getting back on the meds to be back in full remission.  Now if they could just come up with something for plain old osteo arthritis that works as well.  The lidocaine cream and patches are very helpful for osteo arthritis pain as well.



Not having the nasty side effects is certainly a blessing and while Merissa's Methotrexate afterwards tablet helps a lot, the same can not be said for this new treatment she is on, most times for the first 3 or 4 days of the injection I give her, she gets pretty sick, doesn't eat and her body simply doesn't want to function, she had her last injection this last Friday and she has been struggling since, today is Monday and still going, for some reason this time got her a little harder than normal...!

Cheers
George


----------



## gr8macbeth

You guys will be in my prayers.   You have an inspiring relationship with your wife, and I love the recognition you give her in helping you.   That is something that I should be better with my own wife.    I hope she feels better soon, and will be back spending time with you again soon.


----------



## robutacion

I haven't updated this thread for some time as Merissa seemed to have a period where the treatment was doing something certainly not perfect but at least Merissa could get along her day fairly well but more recently (about 2 months ago) her RA specialist suggest that Merissa should try a new drug that seemed to be helping some folks, this medication is called Rinvoq or Upadacitinib tablet once daily.

About 4 weeks into the treatment Merissa started to feel unwell from headaches to loss of appetite, joint pains and shortage of breath, from there on an for the next 3 weeks she got worse particularly in her ability to do more than 2 steps and start gasping for air.  Last week I request her/our GP
to give us a referral for her to be tested for corvid19 as some of her symptoms were identical to that virus, she was tested and the results come as negative which was good.

Merissa had an appointment to see her RH specialist on the 22/06 (last Monday) and this corvid test was done 6 days prior and while Merissa continue to have troubles in breathing, we decided that we would wait to see her specialist before I would take her to the hospital emergency.  Well, at the appointment day she started coughing, nothing serious or continuous but we noticed that she was spitting up some small blood amounts, it happened that while in her consultation she brought some up just in front of the specialist, however, I had just mentioned that to the doctor and had a pic taken from one of the tissues she had used the day before, that was not what concerned him the most, was the shortage of breath that made him ring the hospital emergency (ER) and arrange for Merissa to be seen as soon as I would arrive with her.

The specialist appointment was at 2:00pm and by 3:15pm she was been admitted to the emergency.
In no time she had oxygen mask while I was explaining all I knew to the ER doctors.  You can imagine the number of tests that were performed after she arrived, it was scary stuff but I stayed with her all the way through.

In general terms and to prevent me getting into a lot more detail and make this post a book size, Merissa was in the ER for 48 hours she then was moved to an isolated room for another 48 hours she then was moved into a ward with other 3 patients that meant that she was feeling better and was no need for isolation.

Today is Saturday 27/06 the 6th day in hospital and they are still not sure if the new drug has caused the problem or the long term Merissa has been given all these new drugs that most were a fail, they believe that Merissa had develop a lung infection that was the cause of her breathing problems, firstly they thought she had a clot in her lungs then a possible bleeding from somewhere in her lungs but that endup all being cleared up.

My conversation with one of her doctors at the hospital yesterday afternoon, I was told that Merissa was indeed suffering from a number of conditions that made her very ill when she was admitted, some of those condition could cause serious results so, they are tackling all those issues and until Merissa can breath on her own and show normal values, she will continue hospitalised, the "prediction" is that she should be able to come home next week, sometime.

She misses all her pets (2 cats one small dog) and off-course being home in her bed but for now, she is in the best place she could be due to the circumstances.

Let's all hope she comes home soon and in good health.

Cheers
George


----------



## magpens

So sorry that Merissa and you are going through this, George.

Sincerely hoping that she begins to improve steadily and will be out of hospital very soon.


----------



## robutacion

magpens said:


> So sorry that Merissa and you are going through this, George.
> 
> Sincerely hoping that she begins to improve steadily and will be out of hospital very soon.


Thanks, the house without her isn't fun...!

Cheers
George


----------



## alanemorrison

George, I emphathise with you as my wife is still dealing with the repercussions of having a brain tumour removed a couple of years ago and is still suffering from repeated headaches and inability to get proper sleep. It is not easy then for the spouse seeing your 'helper' in a lot of pain and feeling helpless so kudos to you for staying so strong through it all yourself.
I pray for a breakthrough for the both of you.
From a previous customer from N Ireland,
Alan


----------



## TonyL

Sad story. My prayers are with her (and you).


----------



## greenacres2

You & Melissa are in our hearts & prayers as well George.
Earl


----------



## Jim15

I'm sorry to read this. Merissa and you will be in my prayers.


----------



## TellicoTurning

robutacion said:


> Thanks, the house without her isn't fun...!
> 
> Cheers
> George


Beginning in Dec 2013, my wife Dianne was in the hospital and a nursing facility for 5 months, then had a stroke and was back in the hospital for another 2 weeks.... you're right Bachelorhood sucks.


----------



## leehljp

Praying for her and you. Med complications and interactions are difficult to analyze, and for each individual it is different. I hope the doctors are able to figure that out for Merissa.


----------



## Dieseldoc

Our prayers  are being sent to  Marissa and you. Which include hope for a fast recovery.


----------



## mark james

My thoughts and prayers continue for Merissa and you.


----------



## robutacion

Thank you guys, Merissa has more friends than what she imagine, I will pass all your wishes to her...!

Cheers
George


----------



## howsitwork

George

just coming in on this and I am sorry to hear of Merissa being ill. 

What ever you do, and in our ramblings over the last year I think it’s true - stay positive in front of her and keep looking at the bright side. A positive outlook helps her and you cope ! Best wishes for a rapid recovery.

She is in the right place, with the best support from the medics and you.  Make sure you keep yourself fit and tidy so she can see what a bargain she got when she got you  and when she is in the right mood remind her what a good catch you were .

Stay strong and best wishes to you both.

Ian


----------



## sbwertz

George, I'm so sorry.  I hope they figure out what went wrong.  How is her RA during all this?  I assume they took her off all her RA meds.  I know what that would do to me!  Give her my love and tell her I'm praying for her.  Right now a hospital is the LAST place anyone wants to be!  All the RA meds make you so susceptible to infections!


----------



## robutacion

Hi.

Merissa was discharged today before lunchtime, she is now home with the furballs and me and that is great.

It seems that Merissa developed a nasty lung infection that could have killed her, the cause was a prolonged intake of lots of Rheumatoid Arthritis drugs with the nail in the coffin being the Rinvoq new med they gave her. Another symptom was the constant swollen her most her body but more the legs, in less than a week they managed to make Merissa lose 12kg of fluids so her legs and body are looking normal but still, the overweight issue is not helping any of her treatments something that she will be addressing with doctors ASAP.

They wouldn't let her come home without 2 things, number one was a machine she has to be connected to while sleeping as she has some sleep apnea, the other thing was an oxygen kit that should be delivered in the next day or so, they recommend that Merissa keep the oxygen nose hoses at low levels something that can be increased if she feels a bit shorter of breath as her lungs aren't yet totally clear apart from that, everything seems to be OK for now...!

Merissa and I, we appreciate you for caring...! 

PS: You were so right Sharon, the RA meds totally exposed Merissa to this infection and not have had any RA medication since she was hospitalised is hurting here the issue is now, what can she take as RA medications..?  WE will see her RA specialist this Thursday.

Cheers
George


----------



## robutacion

Hi peoples,

Just a quick update on Merissa, yesterday night I got the sleep machine set up but I didn't like what I saw, something wasn't right so she didn't use the machine, today I contacted the hospital department that provided the machine and got some info on how to set it up correctly and off-course I was right when I decided not to let Merissa use the machine, however, when I mentioned that we haven't received the oxygen stuff they were surprised because Merissa was only allowed to go home because they had organised all the gear she needed at home as she needs to be on oxygen 24/7.

A few minutes after I finish the call to the hospital I got a knock on the door and there he was the person with all the oxygen stuff for Merissa.  He kept going backs and forwards getting more and more gear by the time he finished he had dropped an oxygen trolley, 4 bottles of oxygen, regulator and all the hoses, etc.  after that he brought in a big box with a machine that makes oxygen that Merissa will plugged in at house 24/7 when she needs to go out, she needs to disconnect from that machine and get the portable oxygen trolley that she has to carry wherever she goes.   

Now at night she has to plug the tube from the oxygen maker machine and plug it on the sleep machine so she will be connected to 2 machines at night.  The does and don'ts that are involved with using all this stuff is mind blowing we aren't sure of costs yet but I'm sure someone will let us know...!

I suppose, none of us realised how unwell Merissa still is and how much is involved for her to be abled/allowed to come home, there seems to be a long way to go for Merissa and a big step-up for me to make sure Merissa follows the requirements and get better and not go backwards.

That is a lot to go through for a 47 years old women, no doubt...!

Cheers
George


----------



## mark james

Continued thoughts and prayers from here.  Hopefully things will improve soon.


----------



## sbwertz

George, My husband also has apnea, but he has central apnea as a result of West Nile virus back in 2004.  He sleeps with a CPAP machine and an oxygen concentrator hooked into it.  He doesn't have to use it during the day.  Central sleep apnea means he isn't "blocking" at night...but he just stops breathing!  His breathing will get slower and shallower until it just stops for up to a minute or so, then he gasps and starts breathing again. He will do that eight or ten times a night. The oxygen concentrator keeps his O2 levels high enough that they don't drop to dangerous levels when he stops breathing, and the CPAP help keep him breathing.


----------



## robutacion

Hi Sharon,

Is never a good thing when someone has to rely on those machines regardless of how old you are, I have seen a lot of older people requiring these machine types but I thing Merissa is still too young for all this but I can also say that, none of this was her choice or doing, generics play a big part and other things that I have no control at.

I couldn't remember the name of the big machine but is an oxygen concentrator that is the machine she has to be connected to 24/7 unless she wants to go somewhere then she has to take the oxygen bottle kit.  Yes, she has to connect the concentrator to the CPAP that uses distilled water on the attachment so her night mask has to 2 machines working for her.

She was in a similar set-up while in hospital and she told me she didn't mind the mask and that she felt fresher/more rested in the morning, the one day/night she had none of these apparatus until yesterday afternoon, she did struggle a bit but after she was put on oxygen yesterday and then the CPAP at night, she slept all night not even getting out to go to the toilet, the first good night sleep she had for a long time, even though she had the same system while in bed, is no such thing as sleeping properly while in hospital, the noise and constant visits from the nurses all night long does it.

We are going to see her RH specialist this morning so Merissa needs to take the oxygen trolley and see what the new strategy will be, will see...!

Cheers
George


----------



## magpens

George,

My thoughts go often to Merissa and you ... thoughts and wishes for improvement.

I know what it's like to use CPAP.

Mal


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## TellicoTurning

George, I don't know how old Merissa is, but my son who just turned 48 last month has been on a CPAP machine for the past 6 or 7 years... 
Personally, not sure I could sleep on one... I tend to not sleep on my back, more of a curl up on my side kinda guy... he seems to do well on it though.


----------



## robutacion

TellicoTurning said:


> George, I don't know how old Merissa is, but my son who just turned 48 last month has been on a CPAP machine for the past 6 or 7 years...
> Personally, not sure I could sleep on one... I tend to not sleep on my back, more of a curl up on my side kinda guy... he seems to do well on it though.


Merissa is 47 years old, sorry to hear about your son's condition but I believe having to use a mask only at night is not as bad as having to be connected to a machine 24/7.

Yes, like yourself my sleeping position in bed is turned to my left so, I don't know how I would adapt to such masks but I would find a way, would I like it..? well, I hope that I never had to find out...!

Cheers
George


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## MRDucks2

Praying for comfort and healing.


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## sbwertz

I'm so accustomed to the sound of the CPAP and the O2 concentrator, that I have trouble sleeping if they are not running.  They have become "white noise" I guess.

George, does she wear a pulse oximeter?  It is the little clip that goes on your finger to track your oxygen levels.  They also make one that fits over your finger or thumb that is more comfortable to sleep in.  Jack wears one.


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## robutacion

sbwertz said:


> I'm so accustomed to the sound of the CPAP and the O2 concentrator, that I have trouble sleeping if they are not running.  They have become "white noise" I guess.
> 
> George, does she wear a pulse oximeter?  It is the little clip that goes on your finger to track your oxygen levels.  They also make one that fits over your finger or thumb that is more comfortable to sleep in.  Jack wears one.


Hi Sharon,

The O2 concentrator is not in the bedroom only the CPAP is unless the machine gets noisier as it gets used, I can hardly hear it unless the mask loses it's seal it then sounds like a tire air leak.  The O2 concentrator is fairly silent too so all good there.

Merissa saw her RA specialist this morning and we used the opportunity of being out to get a few things done including doing a double groceries shopping and look for a pulse oximeter which we found one for about $100.  I certainly mentioned to the RA specialist the inability to know what Merissa's oxygen levels were at different times of the day and during various activities, Merissa still does around the house even though I'm taking most of the chores under my responsibility, we were not supplied with such meter at the hospital or by the company that provided the oxygen equipment yesterday and I felt that we needed one to monitor the oxygen levels, the RA specialist had one of those meters and checked Merissa's levels at the appointment, they read 90 and that is still low even though Merissa had her oxygen bottle with her and the regulator is adjusted as prescribed at 0.5ml which I think is insufficient something that I will try to discuss with our GP soon.  Through the afternoon I checked her oxygen levels and they varied from 90 to 94 we endup being out for 6.5 hours and that used about 1/2 of the oxygen tank.

Cheers
George


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## TellicoTurning

robutacion said:


> Merissa is 47 years old, sorry to hear about your son's condition but I believe having to use a mask only at night is not as bad as having to be connected to a machine 24/7.
> Yes, like yourself my sleeping position in bed is turned to my left so, I don't know how I would adapt to such masks but I would find a way, would I like it..? well, I hope that I never had to find out...!
> Cheers
> George


Looks like Merissa and Jason (my son) are about the same age... he is still very active, matter of fact, until last week or week before he was working as a deputy sheriff in the next county over from where he lives... he's gotten so used to the cpap that he can't sleep without one now.  He's relatively newly married - it's been 10 years - but still newly weds... cpap's don't make for a very romantic evening though, I would think... 

When we first married, Dianne would scare me at night... she would stop breathing in her sleep... would wake me the minute she stopped... but she hasn't done that in years... she has enough other problems that's one she doesn't need.  With her back issues, we have walkers, mobile scooters, a cane and whatever else she needs to stay mobile... around the house she mostly uses the cane.  She can't lay flat on a bed and has to sleep in a lounge chair that is motorrized so she can tilt it back and raise the foot rest... gets to be a problem if we lose power... she can't get out of the chair then... She'll try to cook once in a while, but it's so hard on her and she's so out of breath by the time she gets a meal done I've pretty much taken over all the kitchen duties, the laundry and such.... she's 76 and still sharp... I'm only 78 and still in good health.


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## robutacion

OK so, when we got home this afternoon, we found a card on the screen door and on the floor was a stunning bunch of flowers with a card.

The card read, *"From all your mates on IAP.  Get well soon."*

I may have a gut feeling as to who is responsible for organising this delivery from the florist to Merissa but that is irrelevant, Merissa loves the flowers and the sentiment behind it so, on Merissa's behalf, I would like to thank the though from her IAP friends/mates, thank you...!

Cheers
George


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## sbwertz

TellicoTurning said:


> Looks like Merissa and Jason (my son) are about the same age... he is still very active, matter of fact, until last week or week before he was working as a deputy sheriff in the next county over from where he lives... he's gotten so used to the cpap that he can't sleep without one now.  He's relatively newly married - it's been 10 years - but still newly weds... cpap's don't make for a very romantic evening though, I would think...
> 
> When we first married, Dianne would scare me at night... she would stop breathing in her sleep... would wake me the minute she stopped... but she hasn't done that in years... she has enough other problems that's one she doesn't need.  With her back issues, we have walkers, mobile scooters, a cane and whatever else she needs to stay mobile... around the house she mostly uses the cane.  She can't lay flat on a bed and has to sleep in a lounge chair that is motorrized so she can tilt it back and raise the foot rest... gets to be a problem if we lose power... she can't get out of the chair then... She'll try to cook once in a while, but it's so hard on her and she's so out of breath by the time she gets a meal done I've pretty much taken over all the kitchen duties, the laundry and such.... she's 76 and still sharp... I'm only 78 and still in good health.


My husband's electric Lazy Boy has a battery backup so it will still work in a power failure.  He, too uses a cane around the house and a walker or scooter when we go out.  We bought one of the little Scout scooters that breaks down into four pieces and fits in the trunk of a car.  He has severe spinal stenosis.


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## TellicoTurning

sbwertz said:


> My husband's electric Lazy Boy has a battery backup so it will still work in a power failure.  He, too uses a cane around the house and a walker or scooter when we go out.  We bought one of the little Scout scooters that breaks down into four pieces and fits in the trunk of a car.  He has severe spinal stenosis.


Ours are not Lazy Boys, but sure are comfortable... everytime I sit in mine and ease back a bit it makes my eyes close... must be something wrong with the chair ... we don't have the battery back up, but would be nice.... we've only had one incident where she got stuck when the power dropped... a tree fell on the power lines and we were down about 3 hours... she was able to scoot out onto the foot rest while I held the back and able to stand up... was a little worrisome that she might become over balanced and fall and me too far away to catch her...


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## sbwertz

TellicoTurning said:


> Ours are not Lazy Boys, but sure are comfortable... everytime I sit in mine and ease back a bit it makes my eyes close... must be something wrong with the chair ... we don't have the battery back up, but would be nice.... we've only had one incident where she got stuck when the power dropped... a tree fell on the power lines and we were down about 3 hours... she was able to scoot out onto the foot rest while I held the back and able to stand up... was a little worrisome that she might become over balanced and fall and me too far away to catch her...


That problem affects Lazy Boys, too.  I don't even have to lean back....just put my feet up, and I'm gone.  Mine isn't electric, though...just lever actuated.  However, the other day a big water bottle got under the footboard, and I couldn't close the chair and had to figure out how to scramble out of it.  I managed, but it wasn't fun.


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## sbwertz

George, what did her doctor say about the RA meds?  Also, you may want to have her retested for the virus in a couple of weeks.  Hospitals are dangerous places these days.


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## robutacion

sbwertz said:


> George, what did her doctor say about the RA meds?  Also, you may want to have her retested for the virus in a couple of weeks.  Hospitals are dangerous places these days.


Hi Sharon,

Well, her RA specialist has stopped all RA medications for at least 3 weeks hoping by then the respiratory issue has stabilised, the lung infection takes over any of the RA stuff for now, the only thing that is giving Merissa some help with her joints is the steroid tablets she is taking but that will be a short term thing.

Merissa was tested one week prior to her hospitalisation and while there, they repeated the test another 5 times and all came negative that off-course doesn't mean she is free of the virus forever, by the contrary, as you said just being or going to an hospital at the moment, it may be the worse place anyone can go to avoid getting the virus so yes, she will be tested again and so will I, I spend more than enough time in that place in a week so, my chances of getting is also high, will see...!

Cheers
George


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## howsitwork

George the steroids will suppress the RA short term and help her feel better. 

Might give her more of an appetite too so brush up on your culinary skills .

I know you’ll keep it clean but the water in the machine helps keep her lungs moist at night ( which helps mucus clear). Care with the oxygen, too high a %age can cause more issues so stick to the advised limits. Your body actually monitors CO2 levels not oxygen in the blood.

Best wishes  to you both.

Ian


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## sbwertz

Yes, hospitals are dangerous places.  About two years ago, I went to the emergency room with severe gastritis.  They kept me overnight and sent me home.  Two days later I was back in the hospital with hospital-acquired pneumonia.


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## robutacion

sbwertz said:


> Yes, hospitals are dangerous places.  About two years ago, I went to the emergency room with severe gastritis.  They kept me overnight and sent me home.  Two days later I was back in the hospital with hospital-acquired pneumonia.


Yes, there are risks entering any hospital, for sure...!

Cheers
George


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## robutacion

Well, I have made the decision to share with you all my wife Merissa's health issues of recent years and to keep truthful to my intentions, I'm sad to report that Merissa is back in hospital since yesterday.
It all started at 8:30am yesterday when I took Merissa for an appointment for some respiratory tests, something we have been waiting patiently for some weeks, however, she went in but not long after she came out.  It happens that they suspected that Merissa had fluid in her lungs that was due to the visible signs of her swollen legs and body in general, they informed her that doing the tests would harm her.

Well, it was like they had just flagged a red flag to me adding to the fact that since Merissa left hospital her breathing issues didn't improve even with supplemented oxygen and the 12kg of body weight/body fluid the lost in the first 4 days last time while in hospital, she started to put it all back plus extras every week since with her complaining all last week of bad legs pains and the recurring issue of her struggling to breath after a few steps so, I took her straight to the hospital emergency once again, she was admitted some time later.

I stayed with her until late afternoon, well, I spend most of the time on my own as they kept taking her away for tests.  After some time a doctor come in and informed her that Merissa's heart was not pumping enough blood and that triggered the fluids to build up in her body starting from the legs up.  This morning she was put through a bunch more tests one of which was a lung scan and contrary to what we all thought, Merissa's lungs appear to be clear so, the focus now is on the heart issue and for that, she is going to be seen tomorrow morning buy heart specialist and perform so more tests.

Merissa has been well looked for and she is in the only place that can help her even though, with the corvid issue, hospitals are the last places any of us would like to be but its a risk we need to take, not that we have many other choices, really...!

I expect that Merissa will be in hospital for a week or so and in the mean time I will take care of animals and everything else that needs done including the less desirable trips to the hospital 1 hour away in horrendous traffic that makes me feel very concerned by the added fact that I haven't been driving for some years, I started hating driving so I gave it up to Merissa, being on these busy roads is something that I prefer not to be but I have no choice, I wish I did.

Anyway, this is all I can tell you as at 11:00pm tonight, I will update as soon as I have more information.

Cheers
George


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## johncrane

G'day George! very sorry your wife still very sick it must be very hard, my best wishes to you both.


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## TellicoTurning

George, I'm sorry Marissa is still having issues.... your update brought a tear to my eye as it made me think back to my Dianne was hospitalized some 4 years back and was in the hospital or nursing facility for over 4 months, then to come home and 10 days later had a stroke, back to the hospital for another month.... her hospital was also an hour + away, but I made a daily trip to see her.... took care of the animals at home, tried to keep from worrying too much.... I can tell you that bachelorhood sucks. 
It's a long way down there, but sending all the good vibes I can your way.


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## Jim15

I'm sorry to read this. She and you will remain in my prayers.


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## robutacion

Thanks guys.

I know how it feels to be bachelor, after my first marriage of 12 years went down the drain I was on my own for nearly 13 years before I met Merissa, I was skinny(ish) then, having someone cooking good food in large amounts at regular times has made me enjoy food again, maybe a little too much, I'm too damn fat now...!  

The plan was that Merissa being almost 15 years younger than me, I was going to have someone to look after me in my old age, little did I know that years later Merissa needs to be looked after more than me, it scares me that I won't be around forever and unless she improves her conditions(s) she will have a hard time on her own, someone once said to me that even the best-intended plans are prone to fail I couldn't agree more, however, I/we will take one day at the time and hope for the best.

Cheers
George


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## mark james

Continued prayers from here, Mate.


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## BRobbins629

All the best for a good outcome.


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## Rick_G

Sorry to hear this George.  Will be praying for Merissa and you.  Lost my wife of 53 years in April, she had been fighting congestive heart failure and cardiomyopathy for 20 years or more.  Figure it finally had enough.  She was in hospital only 1 day but because of this covid 19 garbage I wasn't allowed in to be with her.


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## sbwertz

George, I'm so sorry.  And she is probably still off the RA meds so her joints are hurting as well.  41?  She's practically a spring chicken!  

Praying she doesn't get any hospital acquired infections!  Please be careful!  Is there someone who could take care of the animals if you stayed in the city for two or three days at a time?  I'd be more than willing to chip in toward hotel bills!


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## howsitwork

George

stay positive mate, 

easy to say but difficult to do I know. She’s in the best place with the best care and equipment available. Keeping everything crossed for rapid test results and solutions for you both.

Keep,yourself watered and the pets fussed as she would want !

regards Ian


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## greenacres2

George--there will come a moment that you need a rest.  No need to say when that is, simply know that there are many of us here who will lift your weight for an hour, and would be honored to do so.  You're in our hearts. 
earl


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## robutacion

sbwertz said:


> George, I'm so sorry.  And she is probably still off the RA meds so her joints are hurting as well.  41?  She's practically a spring chicken!
> 
> Praying she doesn't get any hospital acquired infections!  Please be careful!  Is there someone who could take care of the animals if you stayed in the city for two or three days at a time?  I'd be more than willing to chip in toward hotel bills!


Thanks everybody,

Sharon,

You are a kind lady and I have great respect for you and what you do, I appreciate your offer that no thank you, Adelaide city is still a few long miles from the Flinders hospital with crazy traffic in between so a motel wouldn't be any good for me, we don't have anyone that we could ask and or trust to come into the house to take care of the animals, the last time we tried that years ago it failed miserably so, I prefer to do the drive, however, Merissa knows well how I feel driving so we have agreed that I will see her every second day but we talk on the phone 2 or 3 times daily.

I will be talking to Merissa about lunchtime (my time) so I have no extra news at this point.

Cheers
George


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## Karl_99

Wishing the best for both of you.


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## sbwertz

Give her my love and tell her she is in my prayers.


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## robutacion

Hi friends,

Thank you for all the kind words and thoughts, Merissa is aware of what is going on on this thread and she certainly likes to know she has lots of friends in here, so thank you.

There is not much to add from what I said earlier, Merissa had a fairly quiet day not a lot happening and quite frankly, she was pleased to have the chance to relax and sleep most of the day to recover from 2 days of not sleeping and one of the reasons were 2 other patients from that room of 4 beds that just didn't stop yelling and screaming, fortunately, they both were moved from that room so everybody else can have some rest.

Merissa's body and particularly legs are still very swollen, she is getting injections in her veins to "force" the extra fluids out so poor girl keeps running to the toilet every 5 minutes.  The last time she lost 12kg of body weight/fluids in 4 days I suspect she will lose a bit more than that this time while she is in hospital.

Merissa had a video conference this morning with some of the best heart specialists in this state one of them was my own heart specialist of 6 years Professor Dr. Stephen Stranks one of the best we have around, he is taking Merissa's case and I'm most happy that he did, he did wonders with many of my issues that other regular doctors failed top address/resolve in years of trying, unfortunately, Professor Stranks operates privately so, he have to pay for every consultation at $180.00 a shot, this means that for the first year (as it happened to me) she will require a few consultations in one of his private offices but after that, if everything goes right, it goes to 1 month consultations then a 3 month consultations then 6 months and when the issue is stabilised it will be yearly consultations.  Merissa mention that in the video conference they discuss a new treatment and said Merissa was an ideal candidate, we are yet to know exactly what it entails but we will in due time.

We still don't know if the heart condition can be treated with drugs or if she will require a surgery procedure, I suppose many of the tests she has done already and some more they will perform in the next days will determine that I hope she doesn't need to go to the knife, she is petrified of that, I have tried multiple times to let her know that surgery is not the end of the world, doctors, equipment and procedures are getting better every year, the risks are very real and so are the people that die from infections created from the surgery that has nothing to do with the problem was in the first place.

Cheers
George


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## howsitwork

George

Glad to see you keeping her and yourself,positive. 

Can you not video conference instead of phone.  or is that what you are doing? Maybe put the word out and get a lift in from someone going in to work in Adelaide area ? company for them and you ? From my experiences in your wonderful country it maybe more feasible that’s you think ?

Please let her know we are all thinking and rooting for you both.  

Cheers Ian


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## robutacion

howsitwork said:


> George
> 
> Glad to see you keeping her and yourself,positive.
> 
> Can you not video conference instead of phone.  or is that what you are doing? Maybe put the word out and get a lift in from someone going in to work in Adelaide area ? company for them and you ? From my experiences in your wonderful country it maybe more feasible that’s you think ?
> 
> Please let her know we are all thinking and rooting for you both.
> 
> Cheers Ian


G'day Ian,

Thanks for the kind words.

Video chat...? we don't have mobile phones to do that.

Relying on someone else for transport would basically mean being stuck all day in hospital so I prefer to grab to bull by the horns and drive it at least I can stipulate when to leave home and when to leave hospital, of all of my devils, that one is not the worse.  

Cheers
George


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## howsitwork

robutacion said:


> G'day Ian,
> 
> Thanks for the kind words.
> 
> Video chat...? we don't have mobile phones to do that.
> 
> Relying on someone else for transport would basically mean being stuck all day in hospital so I prefer to grab to bull by the horns and drive it at least I can stipulate when to leave home and when to leave hospital, of all of my devils, that one is not the worse.
> 
> Cheers
> George


G’day George

buy her an Ipad they are wonderful and allow you to video call, email etc with ease!

Your australian internet was , when we visited back in 1999 , the most developed we had ever encountered. If I can finally succumb and get an ipad. you should! I found it so useful I bought everyone in the family one . Including the mother in law ( net result we have a spare ipad as she tried multiple guesses at her pass work set up by my youngest son then gave up) temporarily anyway.

You can then see each other daily as well,as call in every other day. It will also,allow her to see you are feeding the animals and yourself !

seriously mate if you can afford it do it.

Stay safe

Ian


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## robutacion

howsitwork said:


> G’day George
> 
> buy her an Ipad they are wonderful and allow you to video call, email etc with ease!
> 
> Your australian internet was , when we visited back in 1999 , the most developed we had ever encountered. If I can finally succumb and get an ipad. you should! I found it so useful I bought everyone in the family one . Including the mother in law ( net result we have a spare ipad as she tried multiple guesses at her pass work set up by my youngest son then gave up) temporarily anyway.
> 
> You can then see each other daily as well,as call in every other day. It will also,allow her to see you are feeding the animals and yourself !
> 
> seriously mate if you can afford it do it.
> 
> Stay safe
> 
> Ian


Hi Ian,

I appreciate your effort to help, thank you.

I use my camera to take a few short videos of the pets, she always asks to see them as she misses feeding them (Mama think) and their interactions.  She keeps asking to bring stuff to her so I have to make the trip, anyway.

Merissa is not a computer person, she doesn't touch them even though I tried to teach her in the beginning when we met but she simply doesn't like it, she is happy with all the things I do on the computer but not for her, she gets pretty stressed out trying to work out how to make them work and the same happened when I got her a "normal" mobile phone just for emergency situations, she didn't like it and she didn't know how to deal with all the messages popping out all the time so I decided to buy a prepaid old-style flip phone, there is nothing extra on that phone to keep things easy and I got it set-up so that she turns it on when needed, to answer the call (always me) she only need to flip the top part of the phone and to make a call, she has a list of all possible numbers she may need, she clicks on the one she wants and the phone takes care of the rest, simple.

The cost of having either 2 mobile phones or Ipads/tablets with video chat capabilities is high and the plans to keep each one operation would be a minimum of $60 per month for each so, no thank you...! There is also the fact that Merissa won't be in hospital forever after she comes out all those things would be useless to us while having to pay each month regardless if used or not.

Cheers
George


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## howsitwork

fair points mate.

Just thinking about how long it took me to try it and then never looked back.

Only just started trying video conferencing though, no choice with covid !

Stay safe and well

Ian


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## sbwertz

You can buy an old refurbished IPad Air for about $135..that is what I have.  If you use the internet instead of cell, there is no monthly fee except for your standard internet fee.  I'm a computer consultant, and I have set up IPads, sort of like her phone.  Just a few essential icons, touch one and it works.  Most of my clients are non-computer literate seniors.  (I'm trying to retire, but the only way I will ever be able to retire is to outlive them!  They panic every time I say the R word.)


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## robutacion

Maybe one day not now...!

Yes, I don't like it much when I have to go on the "R" either...!

Cheers
George


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## robutacion

Good news, Merissa is home...!  

After 1 week at the Flinder Hospital, Merissa heard that she may come home on the weekend so that made her happy but somehow, they decided to transfer her from Flinders to the Victor Harbour private hospital on Friday night about 10:00pm for what we thought would be a 2 days stay I was surprised when Merissa call me on Saturday middle morning to let me know she has been discharged and she was ready to come home.

Sure, I was happy but at the same time I wondered why in the heck would they transfer Merissa to another hospital just for a sleep...? strange...!

Anyway, it has been worked out that Merissa still has fluid in her lungs a lot less than the last time but still not clear, the discussion and tests performed on Merissa's heart show she had a good/strong heart so it boils down to the fluids Merissa's body can't get rid off together with excess body weight these 2 factors are restricting the heart and the lungs to pump properly.

Unfortunately, a lot of the medications Merissa has been taking for her RA condition are contributing to her put on considerable weight, the last time Merissa was hospitalised, they manage to remove 12kg of body weight all fluids in 4 days but this time they struggle to get the intravenous injections to force fluids out did not work much for the first 3.5 days she only lost 3kg so they decided to double possibly triple the amount of those injections and all of a certain the fluids started to come out fairly easily.

When Merissa was discharged yesterday her body weight was 116kg compared to 137kg 8 days prior, that's a lot of fluids and more has still to come out so is on some tablets to should continue to make her lose fluids together with some restrictions on what she can eat and certainly the continuation of the liquid intake restriction of 1.5litre per day.  Somehow, when Merissa left the hospital the last time, no one has said to Merissa that she needed to continue that liquid intake restriction amount at home and that is the cause of her need hospitalisation for the second time in such a few weeks, I never have seen anyone drink as much water as Merissa does regardless in Summer or Winter, I keep telling her that she drinks water like Camels, we all know that the human body needs water, the daily average water intake recommended is far beyond my capabilities, most liquids I drink in a day are coffee and maybe 1/4 litre of water or soft drink while Merissa will drink 5 litres of water a day in average, sometimes more...! (yeah, I think the same...)

Anyway, the "Queen" is home enjoying the company of the pets that she missed badly and back to her/our very modest "nest" but one that we enjoy immensely. 

Oh...! almost forgot, Merissa is not on oxygen during the day unless she feels the need for it, at night the concentrator oxygen supply will continue connected to her CPAP machine/mask that is now set to 20 instead of 10, being able to go to the shops without dragging the oxygen trolley with her is something that pleases her considerably but all the equipment stays with us for some more time just in case she will need it again, will see.

That's all the news for now, lets hope Merissa can continue losing body fluids and body fat, her legs/knees would benefit greatly from less weight to carry around, in the meantime I will continue to be as supportive as I can be.

Cheers
George


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## sbwertz

GREAT NEWS, George!


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## alanemorrison

I'm pleased for the both of you and hope that you can get a bit of normality back into your lives.


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## mark james

Very nice to hear of some improvement.  My thoughts are with you both.


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## howsitwork

Great news mate !
Best wishes to the good lady.


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## Jim15

Great to hear.


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## TellicoTurning

Glad to hear things are progressing.


----------

