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Ariel
10-20-2005, 09:17 AM
Hi there.

I was recently diagnosed with SLE and Sjogren's. I've known I've had it for awhile but no one believed me enough to test until recently.

Part of this is because I have suffered from type 1 diabetes for - WOW - it will be 29 years this November! I am 43. I have numerous complications from the disease including neuropathy which has, on occassion, literally crippled me with pain. The docs kept attributing everything that happened to me as diabetes related until they couldn't anymore.

This latest flare was brought on by extreme stress. My 16 year old boy, who had JUST learned to drive, was going off to college! YIKES! I'm Jewish - he's not supposed to leave home until he's 35!! :wink:

In the middle of all the preparations, we had 2 rounds of houseguests, were back and forth from Nashville to Florida and Savannah doing a boat refit, and were moving my mother-in-law (her honest to G-d nickname is "Endora") down from Long Island.

In a 2 week period I went from being able to work around my neuropathy with acupuncture and herbs (had spent years and years on opiates), working out at least 3 days a week, and back (finally!) to wearing high heels whenever I wanted to......

having to spend most of the day in bed, bursitis like pain in left hip, frozen left shoulder, tmj so bad I couldn't yawn without screaming, and gastroparesis (a diabetic complication that paralyzes your digestive tract) so bad I was vomiting clear liquids and living on phenergan.

So here I am with a lupus diagnosis that I knew was coming. It was, in fact, the best diagnosis I could hope for under the circumstances. It's not in my vital organs which is good. It is aggravating my diabetes complications which is bad. I have been put on Plaquenil (generic version) which is making me feel crappy and you have to take it with food but my stomach is paralyzed.

They have me on one pill a day still but will go up to 2 Nov. 9th. Right now I can get away with eating one small meal a day when I take it but soon will have to do that twice? I'm not sure I can. I live on VERY small amounts of Gerber, Glaceau vitamin waters, and broth. On good days I can do some toast. But the healthy foods I should be eating for the Lupus I can't do because of the gastroparesis. No raw foods - salad, fruit, etc. If I eat vegetables they have to be cooked nearly to death. Very little meat, no beef. No dairy - allergic to dairy protein and lactose intolerant. I can do Gerber applesauce and pears. I throw up the bananas.

The gastroparesis kind of comes in waves like a Lupus flare so I am usually able to build myself up from clear liquids to a diet of over 1000 calories a day of mostly real foods. When it flares back up I have to go back to clear liquids and/or soft foods for weeks or months at a time.

I am in physical therapy for the frozen shoulder and hopeful it will help. Alas, it is my crutch arm so even walking is difficult for me because of the neuropathy AND the lupus. I can't dress myself. I can't drive my car (manual) and had to put a spinner on the SUV so I could steer.

My long, red hair is falling out. I'm itchy and blotchy. I'm nauseous and dizzy. I hurt. I am preternaturally exhausted.

I'm scared. :(

I guess I just need somebody to say I'll feel better after the Plaquenil starts working. That maybe I'll wear high heels and slow dance with my husband again. That people will still think I am beautiful if I go bald.

I need to not be afraid of what my life is turning out to be.

SoleSinger
10-20-2005, 11:17 AM
Doesn't not eating enough hinder diabetes? That CAN'T help anything...

I hope you feel better soon!

Ariel
10-20-2005, 02:42 PM
Doesn't not eating enough hinder diabetes?

Yes it can. I've been on an insulin pump for 18 years now so that helps. I can usually manage to get in 600-800 calories a day and can manage my blood sugars on that. It only gets tough when I can't keep liquids down. When times are good I can eat.....a LOT. They just haven't been good since the beginning of August.

I keep jars of baby food strained juice with me - 50 calories a jar. If I can't manage juice I just shut the pump off for awhile and wait for my sugar to come up. Sometimes I can get down a can of Glucerna but it has a milk protein in it so I have to be careful.

I'm most concerned about the eye problems associated with Plaquenil since I already have background retinopathy and diabetic cataracts.

I'm seriously thinking about throwing a party and getting all of my various specialists in the same room at the same time. Heh.

TumbleweedPDX
10-21-2005, 06:49 PM
I know you are scared, but eye problems are extremely rare so I wouldn't too much about it. My rheumy advised me to see an opthomologist for a baseline exam. (If you do this, make sure the opthomologist knows you are on plaquenil). Then rhuemy advised to follow up with opthomologist every 6 months. This way IF your eyes start to become effected, it can be caught before it causes permanent damage.

As for the plaquenil working, I'm still waiting myself (2 months so far), but a lot of people have had good results so I am optomistic.

I know it sucks, but keep plugging along. Also, the upset stomach with plaquenil is supposed to subside after a while. I was one of the lucky ones who don't really have a problem, but everyone else I've talked to said the upset stomach eventually dies down.

I hope that I helped you feel a little less stressed.

Cyndee

P.S. I liked the idea of getting all the doctors in one room. (Yeah right, LOL) :wink:

Ariel
10-24-2005, 06:43 AM
I know you are scared, but eye problems are extremely rare so I wouldn't too much about it.

But do you know anyone taking this drug that already HAS background retinopathy and cataracts? I've been looking all over the 'net and while, autoimmune disorders being what they are, I would expect a good number of type 1 diabetics with lupus, I can't find anything.

I've got a call in to my eye doc. So far they are saying they may want to check every 3 months. I hope they go with every 6 - I hate all this doctor's office crap. Maybe I'll give them gift subscriptions to better magazines for Chanukah!