My dad doesn't get it (sorry it's long)
So I guess I'm having a flare because I tapered off of the steroids and was okay for about a week and a half to two weeks and now I am back to feeling like my whole body aches and being tired all the time. The mornings are especially hard because my hands are so stiff and weak - I can barely hold my medicine bottles or open a water bottle I have only seen my rheumy three times which includes my initial visit, so only once since I've been on any medication. He isn't even the doctor that started me on steroids - it was my dermatologist because my discoid was not only on my face but also on my scalp and making my hair fall out. He started giving me steroid injections in my behind that would last about 3 weeks until the symptoms would start again (in addition to giving me injections of steroids into the discoid spots on my face so that they would heal. I then started a 40 MG a day prednisone prescription and tapered down to nothing.
Anyway, since my flare started my dad keeps telling me I should just get up and go outside and go for a walk. That I should start a project or something because if he was in bed all day he would feel the same way I feel. He also questioned my medicines (plaquenil and mobic) - and said there is probably something all natural available over the counter that would work. I tried explaining to him what having a positive ANA/lupus means, and he can see the discoid on my face - so I am basically living with my parents again at 25 (after having not lived with them since I was 19 years old) and my dad thinks that I am sick because I am lazy. He does know that when I am on steroids I am fine - I went to San Diego and went kayaking all day and everything and I was great (thank heavens for steroids).
I went to my PCP today because I thought maybe there was something he could talk with me about doing something natural and what he thought of taking steroids continuously. He said to talk to my rheumy about the continuous steroids because that he is not his specialty - but that there is definitely not anything natural that has the same effect on the body as plaquenil, mobic and prednisone. I broke down crying because I am basically living with someone who thinks that I am sick because I don't like to eat very much meat and sometimes I am in bed all day. All my PCP suggested was to take xanax when my dad talks to me like he does because it seems to be making me depressed. I have never taken xanax before but the talks with my dad are become more and more frequent, and I don't want to take xanax all the time.
So basically I am hoping I can stay on steroids for a while (so that I can get out of bed) and hope my dad comes around, but there is still the other part of me that realizes I am 25 and I have gotten every job I have ever interviewed for so I could move out. I have a remarkable resume and college/internship + post graduate experience so I am not worried about getting a job, I am worried about committing to feeling well enough to work. I've only lived with them since August - I resigned from my analyst position with a global firm in August to focus on my health... but that isn't going to work if I am upset everyday. It's either the stress or the lack of steroids that through me into this flare. Any words of wisdom or comments much appreciated/welcome
Don't wait. The time will never be just right.