Re: kinda sucky update

December 21, 2008

Hi Issadora,

That's amazing. I was just writing about some very similar things and right

after I posted, this message from you came in. I sure hope that your symptoms

can be alleviated and that it doesn't need to become more cause for concern.

There are so many sometimes inter-related issues that it can be hard to untangle

them all.

Rather than seeing the pediatrician that he's been seeing since he was four, who

only sees patients until the age of twenty anyway ... just a few months away,

for ... Josh thought it might be good to have a completely fresh start

and see someone new who didn't automatically think back to all of his medical

history but rather focused more on just the presenting symptoms and the answers

to a few basic history questions.

Josh's ECG (EKG?) came back normal too. That was a couple weeks after his having

chest x-rays, for the recurring chest pains that were really beginning to

interfere with his daily life. At least three times a day he was experiencing

it. It was different from the bouts of chosteochondritis that he's had at least

twice in the past so we didn't want to miss something, if it was something more.

He was younger then, so it's hard for him to remember the exact pain.

Fortunately, he's better able to describe the feeling of symptoms now. That's

why, after sort of ruling out heart and lung issues, we are going with the GERD

med ... to see if that makes any difference. Maybe that's a possible component

for you? Maybe not.

It does seem to be helping. Though he's been taking Misoprostil for years, ever

since he had the GI bleeding in the past, so I wasn't as sure that it would.

That's also why we changed the Indomethacin from 75mg time released version,

twice a day, back to the 50mg, twice a day. It's so hard to be able to sort out

what's what and he had about five of the listed side effects to be wary of.

You'd think that after taking it regularly for like 13 years, we'd know by now

how he reacts to it but that's a med that's more likely to cause issues, the

longer you've been taking it. On the other side of the coin, it's also been the

most effective anti-inflammatory of it's class, out of the several NSAID's that

he's tried. Hopefully, it's just that the higher dose became too much for him to

handle, as he did have (unwanted) weight loss with the last flare. It seems that

we have still not moved far beyond that precarious balancing act of needing to

weigh the benefits versus the risks ... and perhaps that is one of the longest

lasting lessons of living with a chronic illness.

Josh also has issues with his thumb, of the right hand. He strained it months

ago. Was very stubborn about not wanting to see a doctor or have x-rays taken,

just in case it might be broken. When I finally convinced him to go in, just to

be on the safe side and know for sure, we went in after hours and then there

happened to be some problem with his insurance and unless we'd pay out of

pocket, he couldn't be seen. That settled it for him. He hadn't wanted to go in,

anyway. It took a day or two to get the insurance issue taken care of. Someone

had accidentally changed his PCP to one at a different health care center. By

then, he was resistant again and it became a non-issue. He thought it would just

take longer for it to heal, due to having arthritis. Well ... it still isn't

quite right. His rheumatologist said he might need some therapy for it. Josh

doesn't seem to want to deal with it but eventually, he probably will need to.

For now, he's sort of learned to work around it but it interferes with the way

he uses his Blackberry and writing has become more cumbersome again. For him,

it's the middle joint of his thumb. It clicks now, isn't straight, has lost a

lot of mobility, and is very prone to inflammation. Very uncomfortable but for

whatever reason, he's very resistant about getting treatment for it.

I hope you can get the approvals process going to see a cardiologist. Just to

rule out, hopefully, heart issues. Or if it IS something that needs attention

now there will be a bit of a safety net there for you. Even better, and more

helpful, will be the reinstatement of your MediCal. It's a real shame that it's

even questionable.

Keep us posted.

Aloha,

Georgina

kinda sucky update

*Hi everyone-

Well... it has been awhile since I have updated ad I don't really have

anything great to say in terms of my health. I'm a bit nervous right now.

I was having some chest pain episodes which I attributed to reoccurring

costochondritis which has happened several times in my past especially with

the fibromyalgia stuff. I suppose when dealing with JRA and Fibro, it's easy

to just blame other things especialy when it feels the same. The one thing

that I wasn't sure about was that it had gone away for a long long time and

suddenly appeared. It was also slightly different in the sense that laying

on my chest produce more pain but than it would just go away.

Anyways, I mentioned it to my primary care doctor and they did a EKG which

came out abnormal. That kinda shocked me. So Now I have to see a

cardiologist.My PCP mentioned them doing a cardiac stress test and I keep

wondering How on earth do you do that with someone who can hardly walk

without a walker, crutches and is in this much pain?? I mean... that's NOT

practical but I have read they can do them using pharmacologic agents. Still

the whole test scares me! I would hope they can do something LESS invasive

to figure out if anything is going on worth worrying about. The whole idea

of the cardiac stress test makes me feel stressed!!! lol.. *

**

* I'm rather concerned because around 5 years ago, I got told I had a bit of

an enlarged heart and of course I have the whole High CRP thing doesn't

respond to anything.. not even prednisone. I hate the news for expounding on

and on about how C Reactive Protein has been correlated with heart disease

blah blah....

Hopefully I'm just over stressing for nada. I have to wait to get the

approval to see a cardiologist so hopefully all of that will get done soon.

Some of you know that I have been dealing with this Tenosynovitis in my

thumb/palm area for about 8 months? OT helped a lot and it calmed down

however now the tendon pain has moved more intensely intto my hands....

especially the left hand in the flexor tendons??? I believe thats the

area.... it hurts to bend my fingers .. sometimes it hurts to scratch my

skin .. the pressure is just painful on my hands. I really wish I knew what

was going on with all of this.*

*

Besides that.... my diabetes has improved.... my hemoglobin a1c has gone

down from 7.9 to 7.2 since I have been majorly counting carbs. Incidentally

I found out that I have problems with Gluten. I can't say that I have real

gluten allergy but whatever the case, I have less fatigue, stomach issues,

headaches bloating and have even lost quite a few pounds now that I have

been eating mostly gluten free. It's HARD to do that.... i swear everything

GOOD has gluten.... and Im not completely gluten free but I do notice a

significant difference. I mean HUGE. I even have less pain....

Also my so called high cholesterol... which I still dont beleive was that

high in the first place.. the doctor would not repeat the test.. went down

over 100 points... yay.... if it was high... but yeh... great.

I have no progress with SSI, graduate school, working... nothing.. health

insurance is still a real bugger of an issue. I have a hearing for my Medi-

Cal coming up January 5th so I really hope they will 'award' it to me but

given that I was denied SSI in the last year... it's likely I still fall

into that weird clause here in California. Only time will tell I guess but

I'm not feeling entirely encouraged based on what has happened to me

repeatedly.

I could use more mobility.... it's still very very painful to walk even with

being on the narcotics. I work on it a bit at a time but it would help if I

coudl swim more. Other than that, I just keep trucking along and hope that

my body calms down some.

I guess I'm feeling a bit down right now. My mood has been a lot better. I

deal with clinical levels of depression but been feeling a medicated

remission. That aside, I still have days where it's like UGH...and today is

one of them. I suppose this heart thing is really bumming me out.

Oh well enogh whine for now.....

Issadora (age 31- JRA/FMS, asthma, allergies, pcos, diabetes type II,

migraines, etc)*

--

" How exactly does one become a butterfly? You must want to fly so badly that

you are willing to give up being a caterpillar. "

- Trina us

December 21, 2008

Hi Issadora,

I am so sorry to hear that you are having some troubles right now,

especially with your heart.

You are right though in feeling like because you have a diagnosis of one

autoimmune disease EVERYTHING else that happens after that is blamed on that

same diagnosis. We deal with those same kind of issues with Maggie all of the

time. It actually takes a whole lot more time and effort to make her doctor's

see past their first impression then sometime she even feels that it is worth.

She just deals with it, like you have.

When it comes to your heart though it is totally different. Not that you want

things to show up on an EKG but it may help them get a better diagnosis and

quicker now that it has. If it had not shown up as it did, the doctor's may have

just blamed it on your arthritis or Costochondritis.

When Maggie recently went through this back in November when she had a huge

flare up, because she was having chest pains and thought she was having a heart

attack, her heartbeat was really irregular and she was trying to pass out. It

ended up being Pericarditis and Pleurisy. She has inflammation around her heart

and lungs from an

auto inflammatory disease.....something that ties into her autoimmune disease.

She had to wear a heart monitor for 48 hours (which she wasn't thrilled

about) and her doctors also did an echo cardiogram along with the EKG. She now

takes daily meds which help regulate her heartbeat and help with the

inflammation too.

Her heart doctor explained to us that when the lining around the heart has

inflammation it is like putting your left fist in the palm of your right and

then squeezing, the heart is irritated that it cannot beat regularly and it also

causes pain. (understandable when you see it that way). It actually takes

Maggie's breath away when she has this going on and the only relief she gets is

to take a pillow to her stomach and lean forward. Not great relief but at least

enough to help her breathe easier.

Do you have any way at all to relieve yourself from the pain of this when it

happens?

We will be keeping you in our prayers that they can figure this out for you

soon! I am sure just the anxiety of knowing that there is something going on is

enough in itself!!

We are staying in and hibernating here in Iowa. It is - 7 with a windchill

factor of 45 below!! The sun is shining and sparkling on the snow, however it

is way to cold to venture outside, we will enjoy it from our window!

Big warm Hugs from Iowa!!

Diane and Maggie

From: Issadora <FlyfreeIzzie@...>

Subject: kinda sucky update

To:

Date: Sunday, December 21, 2008, 7:21 AM