I dont’ know who will see this but I am coming to the conclusion that my life is changing. I was diagnosed nearly 5 yrs ago, and told it would probably go in about 18 months, the first medicine was sulfasalizine and then MTX was added and it began to be better. Then I came back off painkillers, a week of no sleeping, upset stomach and general edginess. A move then changed my life and it was the first change that made a difference, no meds and the pain came back in spades. We had to get new ins and I waited to get back to a doc. (My move was overseas) By the time I was put back on meds it had been almost 6 months ( the shape I was in was terrible). The doc took me off sulfasalizine and added Remicade and it seemed like a miracle, no pain my movement was normal and no fatigue, I thought that I was controlled. Then I got sick, pancreatitus,pleurisy,endocarditus and had to come off everything again, then i was told i had a cyst on my knee, when that burst I can honestly say I have never felt anything like it. I couldn’t control the pain at all. The doc wouldn’t confirm the remicade and MTX caused the infections. An Infectious disease specialist told me it was the only reasonable explanation. I understand that very few people get the infections but now I am open to them. I am slowly getting pain free and coming off the painkillers again!! So today is the fatigue from not sleeping well sick to my stomach from i don’t even know and achy which I sure is my body craving narcotics. I want to go back to being me when I could play with my kids and go outside without worrying about the sun. I want to be slim and healthy and play with my husband. I want to go out by myself and not have to spend 2 hours grocery shopping. I want to clean my house and make dinner without feeling like I ran a marathon. I remember me and I want her back. My goal is to lose a little weight and enjoy my life again and my kids and husband of 22 yrs. this has been helpful to me I need to vent. Hopefully it sounds less like whining and more like a release.
You are allowed to feel sorry for yourself, I do and wish that I could to have my life back too. It is an awful disease that cannot be seen and just wish that something out there worked…I have just started Humira and it was sort of working ut have other problems like my stomach hates food… Sorry i am venting now, just wanted you to know I understand