Life with Chronic Illness

My life started off “special.” I was born with an usual “birthmark.” My parents and doctors didn’t know what it was. After a biopsy when I was 10, they at least determined that it wasn’t cancer or dangerous but would grow back if we ever tried to have it removed–it grows, you see, and its roots are in the muscle. It’s not a pretty thing. I can remember wearing my modest two-piece as a little 5-year old in a friend’s yard. When she asked if we could go inside to play, her father replied, “Not until she wipes that mud off of her.” I looked all over myself. I couldn’t find mud anywhere. Then, her dad pointed to my stomach–right where my birthmark was. I didn’t want to play anymore and walked home.

Lots of my friends had allergies, but none of them seemed to have them as bad as I did. Nightly allergy shots were lots of fun as a 3-6 year old.

Many people also have asthma, but I seemed to be the only one of my friends who did. I tried to keep up with my friends, and I was able to play sports. I just wasn’t that good at any of them. I did love playing, though. I remember when I was 17, I finally was able to run an entire mile! No, I wasn’t fast, and at times I was barely jogging. But, I cried when I finally ran across that line. I had been trying to finish a mile since I was in 3rd grade.

Also at 17, I learned another new gift my body had for me. I passed out for the first time. Yes, I was just giving blood. But, it has happened 5 more times with 3 of them leading to ER visits. I even fainted on an airplane. Apparently, I stood up, mumbled something incoherent, then collapsed in my seat. I got to be wheeled off the plane with that special tiny wheelchair they have. Yes, that was lots of fun as every passenger got to watch. Thankfully, my co-workers were not on that flight with me.

Shortly after my 30th birthday, I had to have my thyroid removed before the large nodules growing on it choked me. If you can avoid having yours completely removed, do so. It causes a slippery slope of issues including autoimmune diseases.

I suppose all of this was to prepare me for yet another “special” quality–Sweet’s Syndrome. My doctors aren’t even certain that’s it, though. It’s a close diagnosis–a rare variant of this very rare disease called Sweet’s or some other form of neutrophilic dermatosis.

I take 7 pills in the morning, 8 at noon, 2 at bedtime and a shot at bedtime. (I can’t really complain too much. I’ve virtually met people (FB and other sites) who have much worse symptoms, more often and more painful.)

I generally awake with a few normal-looking hives on each arm and leg and at least 2 wheal-like hives the size of a silver dollar somewhere. Most mornings, I also awake with at least 1 very large pressure-related hive that is very hard, hot, red and painful. Last week, I had one the size of my palm and fingers on my ribs, another one on my back the size of both palms and fingers spread out. It was like sleeping with a brick under my skin. Needless to say, I do not sleep well with these.

Throughout the day, new ones start to form and typically reach a peak at bedtime or during the night, which wakes me. By bedtime I also typically have pain or pressure in my legs that has built up in my legs and feet.

If I go somewhere, I get pressure swelling from my shoes and standing. If I sit on a park bench or anything hard, I get the hard, hot, red, swollen urticarial spots on my buttocks and back of the thighs. When I go to the pool to do water aerobics, the pressure of the water hitting my feet and thighs as I move them up and down for the exercises creates pain and more pressure swelling. If I’m out too long doing any of these things, I’ll be completely immobile for at least 24 hours after. But, I don’t often know if I’ve gone too far or for too long because the symptoms are delayed. They don’t start until 6+ hours later. So, an outbreak can last no less than 30 hours.

Then, there’s the one thing I haven’t mentioned yet, the itching. My skin can start itching even when I’m completely clear. And, it will itch badly. There have been times I’ve taken sleeping medication just to get me to stop scratching. Of course, I also scratch in my sleep. Nothing helps it or stops it, yet. I’ve tried all the home remedies plus all the standard allergy medications (OTC and RX). Xyzal is the only thing that “minimizes” it. But, I already take it daily and have been for 2 years. I was even up to 4/day (20 mg), which is apparently a lot since every time I’d pick up my RX the pharmacist questioned the amount or counseled me even though I refilled it every single month.

All of this and I still have addressed the fatigue–the extreme exhaustion that can hit quickly. Often it comes when I’m having a series of moderate breakouts. My mind and body gets too exhausted dealing with the pain and lack of sleep. Yet, even when I’m exhausted, I often still cannot sleep. It’s a miserable time when that happens.

I’m too tired now to elaborate on this at 7:30 p.m.

You can see how debilitating and isolating it can be.

 

  • More from Not So Sweet’s