Yesterday, I arrived at where I have been trying to get for weeks. Plastics, under the eyes of the very surgeon who did my skin graft months before. I'm not sure what I was expecting or hoping for... While being professional, I read confusion, disappointment and sadness on his face for the short time my eyes reached his. Long story short. They don't like to do non emergent surgery on imuno-compromised patients (had 100% impact on another surgery I was to undergo on the 28th) The plastics Doctor said there is no good reason to surgically debride or graft my legs while "the process" is active. That made so much sense that it hurt. So, once "the process" (Behcets) is complete, they will go ahead and do surgery/grafting/repares, and clean the mess that Behcets has left behind. What I understand, is what I think I've understood for some time. They can't fix it till it's reallllly broken. I can't believe this is going in a full circle. I can't believe it's happening again, but worse that it may happen over and over. Please don't tell off the doctor, it's ignorant to assume they don't have time for social media. Right now, we just have to bank on the new meds being miraculous.
#cyclosporineI'm so devastated. I'm tired, I am already mourning the whole summer as though it was pulled out from under my feet. I'm lucky to have doctors and friends invested in me (this). I'm at the uncomfortable place where if someone asks how I'm doing, or if I look anyone in the eyes, I'll cry. My throat is tight while I make this post, I don't want to cry. This is a learning curve for everyone, but for me, I don't know.... My body is a toture chamber, get me out of here! -
#autoimmunedisease #behcets#doctor #nurse #wounds #hospital#legs #chronicillness #helpme #gmtfo#pain #youcantjustgotomayo