Today is Monday. This pic is from Thursday when I first started major flare. I was expecting a flare, I just did not know it would be this bad. But that is why I am documenting things, for those trying to weigh the benefits versus the risks when considering prednisone during severe illness.
This is from yesterday. It has gotten worse in my face neck and chest. My skin has been on fire again. You can see where the rash ends on my chest, to reveal my normal skin color. I also have developed styes in my left eye to go along with “the look.” I went to a friend’s house briefly on Wednesday whose house always makes me have an allergic reaction (her dogs, I think), and that’s when my eyes started itching like crazy. I came home and used allergy eye drops and took Allegra, but nothing stopped the reaction. I have woken up with eyes swollen shut every morning since. My face has been so swollen, I have guessed there is an inch of fluid. My cheeks and up to the sides of my nose have been almost hard to the touch with fluid. And with bright red face, my nose has been normal skin tone.
And then there are my hands and wrists. It felt like I had fake hands when they healed during the short course of Prednisone. I know I can’t go back on it, but it sure does make all of this hard. My hands and wrists have tiny pustules of infected fluid. It itches like mad and is peeling off in giant pieces. I have now taped my long-sleeved shirt to my gloves, trying not to touch it.
How can this be? After all that I’ve endured, I thought maybe healing would help me close off the fissures and help me be less vulnerable to infection, but it literally happened overnight. I started getting the places that look like dyshidrotic eczema, they itched like crazy, I scratched them, then the next thing I know, it looked like the photo above.
I am in a very hard situation at home, and I know that has contributed to my prolonged healing. I have taken many steps to try to move forward mentally, spiritually and to work on me. What I have learned that might help others considering the TSW route is that people should not embark on this journey unless they have support around them (especially if a parent). Had I known how much stress would prolong my healing, I never would have stopped TS when I did. My poor youngest, Graham (3), has only known a sick mom. He is a sweet, beautiful boy…but I feel sorry that he has never known me to be well. I am beginning year 4 (16 days in!) and never dreamed it would last this long or be this hard. I do expect this extreme flare to be over soon, and I know I can do it. I just know that I probably won’t completely heal until I am at a more peaceful place, one that I know is not feasible until I get over some major hurdles.
Do I go to a dermatologist? She told me I was crazy for not being on steroids and that “the science has been proven.” I have been to every specialist out there. My PCP keeps telling me I need to go to derm. I guess I’ll try the paleo diet again and see if that helps. I really don’t know what else to do, except move. Which my relationship troubles prevent me from doing. Gonna have to find that strong me again.