Hello, I am a new member to this site and I was reading the site rules, especially the one that said don't be afraid to post how you are feeling-good or bad. Well, here goes...
I was diagnosed with SLE and RA this past November and both are advanced. I literally woke up with these two things so I do not have the "pleasure" of growing into my symptoms or diseases. The day the rheumo doc told me my diagnosis he put me on methotrexate and folic acid and told me I wouldn't see results possibly until the next few months, he was treating the RA first so I could get to moving around then go after the SLE. I started seeing results in a week. Things were going ok until a few weeks ago I noticed I was getting tired and beginning to sleep and lay around more and getting winded easily.
My last appt was also lab time and a few days ago his office called and told me to stop taking the methotrexate, it had was causing a drop in my wbc. That number has always been under the minimum since the beginning of my nightmare. It dropped even more. I was supposed to take my weekly does that day of the call. Well, later that night I noticed I was beginning have problems dealing with the constant pain and sleep(not that I can sleep) never came. My hands are starting to swell again and I know the dizzy spells are from the low cell count.
I hate my life now, it is such a drastic turn from what it was. This past year like I said is a nightmare. I lost so many friends because they thought I was lying about being sick or trying to get attention and did not want to be associated with someone like that. My best friend is upset with me although he will not come out and say it because I cannot go visit him, I keep wondering when he will tell me to get out of his life as well. I feel awful because I cannot work so of course no income-no money to pay the bills and I feel like such a burden to my parents. I keep to myself since it is easier that way rather than explain why my arms do not move like they should or why I cannot be in the sun.
I was told things will get easier, but this past month it seems like they are getting worse. I'm not due to see the rhuemo doc until next month. Is this how my "new" life is going to be like now? Nothing but pain and more stress??? I do lie and try to act like things are good. Although I do not lie well. It actually makes me tired. I hate to be such a downer and I do apologize for it. I never used to be this way.
Thank you to whomever decides to read this