Thursday I was wicked bad dizzy much of the day. A new resident thought it was the funniest thing she had ever seen 😮 I talked to her while I was waiting for the wheelchair guy to show up. Each time my eyes rolled back in my head and then rolled all around, she guffawed. I think she thought I was doing it on purpose. She seems to be a few cards short of a full deck. At least I was entertaining 😛
Today I feel like bottom of the barrel yucky. My vision is awfully fuzzy and cloudy. I feel incredibly sick to my stomach and the #$%@&^*! angioedema is moving around. Once again I am doing my best impression of a bag of water. Earlier my lips were huge, now my left arm. Before that it was my hernia. My head is killing me. It never seems fair that when the swelling gets the worst, I have the worst dehydration. Ugh. Ick.
I have mentioned several times that docs have been mystified by my high d-dimer levels. One doc told me I just naturally am higher….but in the last year I had a normal d-dimer while in the hospital. I have been trying to figure out just how many of my long term problems are really angioedema. Potentially lots of them! Elevated plasma D-dimer levels were associated with acute C1-INH-HAE attacks. There was even a study where someone had lupus, C2 angioedema and myasthenia gravis! I wonder if my Vermont hematologist ever tested me for hereditary angioedema? He was the first person to tell me I had angioedema….although earlier docs might have used that word. One of my early VT docs was convinced that I had problems with mast cells. I think that was just before I got diagnosed with lupus. When I was 23, and after, I had to take Atarax because I had bout after bout of hives and anaphylactic shock. I have been having angioedema problems my whole life….with lots of different labels.
My body is so contrary! If I had hereditary angioedema, I would have low C4 complement. Instead I have high C4. Normal is 10 to 40, I am 46. My complement activity level, or EIA, is very high. Normal is 60-144. Mine was 214. It seems to be the story of my life that symptoms point one place and tests another. I am still trying to figure out the real, physical differences between regular and hereditary angioedema.
It’s not like I have a zillion disparate diseases…they are all autoimmune and all are related to each other one way or another. If you have MG and MCTD….the rest seems to glom on as time goes by.
I feel itchier today than yesterday. Seems like the spots are multiplying. One good change is that there’s less swelling near my eye, where it does not hurt as much. I hate itchies!
I have not been very useful today it took about 10 hours of working a few minutes and resting an hour or so to cut up the watermelon and cantaloupe to put in the fridge. Each time I stand up, breathing is a real problem 😦 It has been a week or two since my back started hurthing this bad. My back hurts while sitting, standing or asleep in bed. It makes me stop breathing. I have been having wretched cramps in the spot where my legs attach to my abdomen. I can feel the arthritis even more in my hips, spine and sacroiliac joint. I cannot think of anything I did to get my body so riled up. But…it’s probably from my wheelchair working again after so long without it. My body seized up. Sigh…..
This morning I fried 2 hash browns .38, used the last of the veggie mix and added another tomato to it (.33 for orange and yellow peppers, onion .17, zucchini .19, 2 tomatoes .58). Heated it up, scrambled 2 eggs .51, added half an avocado .25 and some queso fresco .51 and served with tomatillo salsa .50. Total $3.42.
Lunch was a cheese roll (free), 2 slices Havarti .33, a tomato .29 and half an avocado .25 for a total of .87. I haven’t had supper yet, but have already exceeded my spending limit for the day of $2.94 by $1.35…and that does not count the .99 can of coconut water I drank or anything else I might have consumed. I am rich in tomatoes and avocados for awhile. 8 Romas for $1.54, 8 vine tomaoes $2.30 and 6 avocados for $3.
Is today some sort of holiday? Olive was loving the fireworks tonight. Aha! It wasn’t easy finding a listing. The event was at a SLC Bees baseball game at a stadium 8 blocks or 1.3 miles away. Noisy!