UCTD [lupus related] Flares From Hell

I've been in bed for several days except getting up to shower once, go into my leg machine, watch several episodes of Star Trek and eat some food I was mostly disinterested in. I also talked to my husband and helped him with a printer problem.

Any food was eaten for the sake of low blood sugar. The less I eat the more the blood sugars go up which never made sense. They have been high this week. My last A1C was 7.2. It kind of sucks but isn't drastic.

 I did attempt to "go out" one day to buy some painting boards--want to get them why I have a little money and felt like I was going to die, just from walking through the local art supply store. You get this feeling of fatigue, and trust me, I know the difference of heart failure fatigue and all of them, this is different, but you wish you could lay down on the ground and go to sleep. You trudge on thinking, "If only I could lie down there". 

Sores popped out all over a few days in different areas of my body before this, they are the "sign" of what is to come. My forehead goes over the cliff with multiple red sores all over it. My mouth hurts from mouth ulcers, my toes hurt. My ears will ring more, and I lost some hearing but at least that's quieted to it's usual hum. My joints will start "going out". My left wrist feels like I broke or "injured" it [never did] and shooting pain goes through it. Other joints including a shoulder joint aren't doing that well.

 The exhaustion has me lay flat as a pancake. You feel like death is warming over. I wrote in my journal, "I feel like I am dying" at 3am. Some may say "Go to the hospital!" No, it's better to wait it out. If the heart is beating okay and I can breathe, go to the bathroom and am not throwing up, I just wait. They say I have a 15% chance of Lupus, but the checked out rheumatologist said, last Oct, see him this Oct, "You are stable". I don't want to know what 'unstable" is. 

I ate some food from hunger pain today and finally took a shower at 1:00 pm. I feel groggy. I had to call some bill collecter at 8:00am. All my medical bills are skyrocketing. My CPAP supply company wants 150.00 bucks, and 75.00 everytime I get new 3 months supplies of CPAP supplies, this means they are making 400.00 off one mask, a few cushions, a few small filters and a tube. Does everything have to be a rip-off nowadays? So I owe them money rather quickly. I doubt stress helps much with lupus related illnesses.

The fatigue just seems to be getting worse. It really is one reason I don't have much of a life lately outside of the Covid junk. I want to sleep all the time. Being deaf, I feel like I live in a groggy haze where I barely know what is going on. The doctors because I am up out of bed when I see them, just don't seem to have much to offer. "You have several conditions that contribute to fatigue." I turned down going to this one event due to the flare. 

One of my toes keeps hurting too, and not sure what it is doing it. I had toenails even cut by a podiatrist thinking maybe my too long toenails were digging into an adjacent toe, but the pain remained. Nothing's red or rotting off, I've had husband examine them, I obviously don't see my feet that well. I bought a toe protector. 

I went out yesterday finally, time for more domestic crap! I was walking into a grocery store yesterday, I take a cart to keep me upright to get into the store to get on a scooter, I felt like I was leaving my body from fatigue. Hopefully the functional doctor in a couple weeks has more answers. 

Another weird symptom as of late is a metallic taste in my mouth, it's driving me crazy. I can still smell and have still worn N95s everywhere as of now. I blamed it on dirty air, but the AQI isn't that bad. The other day I looked up what can cause this and they said, low B12. Sometimes I worry Metformin is keeping my B12 way too low too. 

The doctors aren't doing much, medical care is diminishing, all of us chronically ill know it too, it's been boiled down to bare bones. We are on our own. Most of us don't want to go to the hospital unless we are acutely dying. Some giant kidney stone is laying in wait, and they told me weird stuff about my bladder, but I told them for that scan, I didn't drink enough water, fearful of having an "accident", so they said, that may be all it is. Next scan will be in 6 months.

My father had Lupus too, wish someone told me when I was a teen, my parents hid so much from me. It may have explained some of how he acted. He worked until he dropped and was always angry.  If I had known it would have explained a few things.  They have no solutions for my UCTD besides a drug that can make me blind and do damage to the retinas I turned down. I'm barely functioning being this deaf, there's a point a person has to protect themselves. Lupus crap does not bring out the best in one's personality. 

I'm trying to study naturopathy stuff, in regards to Lupus and UCTD, saw where one is supposed to take vit E. The flares do seem more frequent which worry me and the symptoms of dermatomyositis seemed to be worsening. When you get old, I think doctors kind of check out, they figure you're old anyway, and they see me as having lasted far past my expiration date. I think this does affect the treatment. I needed the world of pre-Covid to survive a lot better.