My "helper" is down...!

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robutacion

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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
 
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sbwertz

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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

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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" :mad:

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

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):eek::redface: and the sawness shown its teeth...!:mad:

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

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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...???):eek:

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
 
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mark james

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

Best Regards.
 

sbwertz

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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
 
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robutacion

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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
 

robutacion

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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

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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

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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.

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

George
 

sbwertz

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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.

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

George

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

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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

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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

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.
 
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robutacion

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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

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.

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

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

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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.
 
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robutacion

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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

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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

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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
 

sbwertz

Member
Joined
May 11, 2010
Messages
3,649
Location
Phoenix, AZ
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
 
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robutacion

Member
Joined
Aug 6, 2009
Messages
6,514
Location
Australia - SA Adelaide Hills
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

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Jul 16, 2014
Messages
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Location
15314 Grasslands, Parker, CO 80134
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
 

robutacion

Member
Joined
Aug 6, 2009
Messages
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Location
Australia - SA Adelaide Hills
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...!:mad:

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...!:eek:

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...!:eek::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...!:mad:

Cheers
George
 

sbwertz

Member
Joined
May 11, 2010
Messages
3,649
Location
Phoenix, AZ
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

Member
Joined
Aug 6, 2009
Messages
6,514
Location
Australia - SA Adelaide Hills
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 rtr-2.jpg, sort of speak...!:wink::biggrin:

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

Cheers
George
 

robutacion

Member
Joined
Aug 6, 2009
Messages
6,514
Location
Australia - SA Adelaide Hills
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:eek:, 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...!":eek:, 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 :eek:

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
 

BJohn

Member
Joined
Feb 13, 2014
Messages
820
Location
Cabot, Arkansas
George all things are possible through God our father. I will keep on praying for you and Marissa.

Gods Blessing continue
 
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