Bullous Pemphigoid

I was fired from my good job after a second emergency hospital stay due to my illnesses. Of course they couldn’t fire me because of it so they spent the last few months concocting ways to set me up to fail. Ironically despite my hurdles with health, I’m really good at my job and a hard worker (is sickies have to work harder than the rest, right?!) and so the most they could do was tell me that I was caught talking on the clock, when I asked how lo they said for 10 minutes, and if it happens again then I’ll be fired. This was my very first knowledge of this incident, let’s not get into how everyone else is always talking far more blatantly on the clock and for 30+ minutes, but it’s not really about talking. So I stopped talking to anyone at all, which sucked and caused depression, but I did it. Next week after that I was told I rolled my eyes in a meeting and I need to control my facial reactions else I’ll be fired...not joking, this was secretly recorded by me and it was word for word. I told them fine, I’ll play your game but that I knew they were trying to illegally push me out. I went to HR, Hr told them I spoke to them and the next day they claimed I was trying to build ally’s against them, so I was fired. I was super happy to be out of such a toxic work place (etrailer in wentzville Missouri, for any interested parties) but now I’ve been so depressed despite being happier away from there. I realize the difficulty in finding a long term good job dealing with all my health issues. I still do a great job and got all my work done, I guess I’m still just a liability in the end. Applying for disability now in hopes I can get that going at least, although it’s not what I wanted for my life when I’m only 31. I feel like I’ve fought for so long and so hard to make it in life before I got worse, and I feel like all that hard work and I failed anyways s because I’m already a lot worse and unable to do any normal full time job that isn’t lenient. I keep telling myself to stop feeling sorry for myself, but I can’t stop feeling like I didn’t make it in time and worrying about my future now and if my disease really will rule my life like I feared. #CrohnsDisease #BullousPemphigoid #autoimmune #Endometriosis #Depression

Mine is: My body tries to kill me in new and creative ways. - #AutoimmuneDisease #CrohnsDisease #BullousPemphigoid #Endometriosis and one mystery disease still at large.

I’ve been in #Prednisone for over a year and half now and as of yesterday, finally tapered enough down successfully without any noticeable flares of #CrohnsDisease or #LinearIgADisease or #BullousPemphigoid (still learning on what exactly this new disease is called for me). My skin was mostly clear on prednisone minus during my periods when the diseases would flare up a little too, but I’m not on my period and fully off prednisone as of right now, hopefully for good, and my skin is going crazy with acne.

I’m on remicade and prednisone and both have caused my skin to become soo super dry, it’s actually aged me faster too. But my lips are constantly cracked and flaking and hurt no matter what kind and how much and many times a day I lather it on. Has anyone found the winning type that actually works throughout the day, or most the day? #remicade #Prednisone #CrohnsDisease #BullousPemphigoid

I’ve been battling with #CrohnsDisease for years, minimally. #BullousPemphigoid showed up year and half ago along with a nose issue where now one side is 95% blocked with scar tissue adhered to the septum. I was thankful the other side wasn’t despite being nothing but open wound and bloody. But now it’s starting to close up too. Unsure if it’s one of those diseases or a new one. unsure if scar tissue is now going to connect to other organs or end up suffocating me. Maybe that’s why my lungs have hurt for years now and harder to breathe, or if it’s only effecting my nose and hopefully the surgery won’t make it worse. I seem to get the most rare things. I don’t have family, only some good close friends (thankfully), and an unreliable boyfriend who i am currently broken up with for the millionth time. I support myself and terrified of all the what if’s. My mind has jumped to suicide if it gets bad enough. I feel like I can’t do this alone, or at all even. I feel like my body is slowly killing itself despite the medicines they have me on; #remicade and #Prednisone that seem to be no battle for it.
I’m so scared.

I have been at my job for a year now and I have been pushing to prove I do a good job despite being sick. I push myself harder than anyone just to break even with everyone that doesn’t deal with chronic illnesses and effects of the drugs including longterm prednisone, 4-5 dr appts/month and the exhaustion/ brain fog. I got a good review, my score is one of the higher ones, but due to the semi frequent mistakes like typos and missing other peoples typos, my lack of attention to detail caused me to get a much lower raise than I could have. How do you cope/remedy doing better at work? #CrohnsDisease #BullousPemphigoid #Prednisone

I’m a really big health freak (mostly because I have to be to keep my symptoms down. My latest trial of vitamins was Smart Pants Women’s Complete multivitamin with Omega 3, Folate, CoQ10, D3 and B12. I feel they are fine but wanted to see if anyone felt they had amazing success and results with a specific multivitamin with autoimmune, specifically #CrohnsDisease or #BullousPemphigoid (although much more rare so probably not many on here). I deal woth a body that doesn’t absorb nutrients well and lack energy mental focus and all that most of us deal woth. Any vitamin suggestions are welcome.

I’m awesome because despite never getting my bachelors (yet) due to illness and the cost of illness, I got myself the best job that was better than what I prayed for and I bought my first house, all in the same year! I turned 30 this year and never been married and single yet I’ve accomplished all this despite all of the bad. #CheckInWithMe ##Crohns #BullousPemphigoid #Endometriosis #PTSD #Fibromyalgia

I feel like I finally got to a point in my life where I was not only happy single but preferred it. Now that I flared with at least 1 diagnosed new disease, it’s harder and more lonely feeling and I find myself easily going back to my ex who I feel isn’t the best for me despite the good qualities he does have. I don’t know if there IS a guy out there for me who is all I need him to be, but I also hate feeling sad and lonely and scared alone to deal with the #CrohnsDisease and #BullousPemphigoid and the effects of the medicines For them that aren’t yet working fully to manage them.

Does anyone else wish that when they come up with names of diseases that they could be considerate and at least make up cool sounding names? We have to live with it our whole lives, it’s the least they could do.
I know they usually use their names but if you have a bad sounding name, don’t make those of us who have to live with the disease the rest of our lives have to also suffer under the name of it too! #BullousPemphigoid eww