So many tell me how well I look and how strong I sound when talking in hangouts. I've started to say thank you, instead of telling them the mic I use makes a huge difference in how I sound. Yes I do look better because I'm not in the middle of an exacerbation.
BUT the truth is I'm not better nor going to get better, I need a double lung transplant due to Lupus. I can't walk or move about much without getting drastically out of breath.
Lupus affects my heart (several types of arrhythmias) and blood pressure. My digestive tract from one end to the other, I have to eat mush because I can't swallow or digest solid food (I need several operations can't have without new lungs)including my bladder.
Lupus is also affecting my joints, spine and tendons. There are times I wake crying out in pain and need help moving. If I get down on the floor I need help getting up, again crying out in pain. The sun can also cause the pain and stiffness in my joints worse. Bright light hurt my eyes, especially the sun. Certain sound levels hurt my ears. I have constant loud high pitch noise, they are swollen inside and extremely painful. I get sores in my nose and on my scalp (worse in sun) plus losing my hair (not just on my head).
Lupus is affecting my mind too, I get confused easily at times not knowing my way home. The bouts between absolute fatigue and insomnia don't help either. The enamel is coming off on my teeth, they're not only shifting but are breaking too. It's a combination between dry mouth, medication and vomiting because I ate solid food or more then my stomach could handle.
I also have Hashimotos disease (autoimmune disease of thyroid) Had to have half the right thyroid removed, with nodules growing on the remaining half. I have a fluid filled cyst in my pineal gland.
I didn't realize how many lymph nodes we have till I started getting inflamed tender lymph nodes in places I didn't know about. There's night sweats and chills plus fevers.
There's more but I think I've given you a good idea off my daily life
Bless you all and thank you for reading