It’s been almost a month since my last post so I feel obligated to give an update to whomever cares 
Health wise things are okay. I have been off of the steroids for almost two weeks and I have slowly felt the pain creep back up. My pain is no where near the pain levels I was experiencing before, but the pain is still there. Today my pain is actually pretty significant for the first time in weeks so I’m wondering how I will feel tomorrow and thereafter. I am planning on scheduling another rheumatologist appointment sometime next monday or tuesday. I really do not want to go on another round of steriods because 2 weeks ago at the end of my steroid round, the scale read an all-time-high number. 
School. Classes haven’t started, but there is a review session for incoming PhD students. It’s pretty intense. I am at school from 9am-6pm and I am either in class/studying/working 95% of that time (yes even through lunch time). I am putting in about 60 hours a week into school and this is before classes have started. It’s hard work but I am pretty optimistic. Last year I was really fatigued and had a lot of trouble focusing because I was always in pain. Now it’s the total opposite. I do feel my energy levels are on the downward climb. But still I am SO much better than I was!
Since my last post I’ve been doing a whole lot better. I write down my pain levels and they have been consistently at a level of 0-2/10 every day for 8 out of the past 9 days. I can’t remember the last time I felt this good for this long. I am incredibly happy about it…but somewhat in denial. I keep thinking that maybe it’s a fluke. Maybe I just happen to feel better and it’s not the steroids working. Maybe there is nothing seriously wrong with me. Maybe my body is not attacking itself. Maybe I won’t need to be on medication for the rest of my life to feel this good…
So it’s my second round of prednisone and I knew right away that it wasn’t working as well as it had the first time.I’m still in quite a considerable amount of pain but it’s definitely better than before I started the steroids. Before , on any given day, my pain was about a 5-6/10 on average. Currently my pain averages to a 2/10 with “spikes” of pain up to 6. I do have a lot more energy though. I take an hour nap every day and sleep for about 6 hours every night. Before I was sleeping 8 hours at night and taking 3 hour naps. Even though I’m feeling better, I don’t want to be on prednisone any more. The long term side effects are no bueno. I think the plan now is to switch me over to a different drug called Plaquenil. And while this is seemingly helping my physical symptoms, I’m still having some neurological symptoms .
My next rhuematologist appointment should be right before classes start. I want to ask for pain medications so I can get these “spikes” under control. I’ve tried tylenol, but I might as well be taking a placebo. If I can get this pain under control I will feel much better starting an intensive PhD program.
Seems like my blog is turning into a health blog, which is not really where I intended it to go. I can’t express how hard it is to deal with a health issue without any close relatives or friends nearby for comfort. I feel like I’m going through this all alone. I know in reality I’m not. But it sure does feel like it. I think I might have a case of mild depression. Dr. Appointment days especially get me down Any other day I don’t really have to face my problems, but on the days I have to see a doctor, I do. Today was a doctor appointment day.
So there are still no definite answers into why I feel so shitty, but at least I found a doctor who is willing to look for one. I was forward to an opthamologist because I have pretty horrible eyesight. My left eye is the worst of the two; it’s so bad I cannot read the first letter on the eye chart (this is with glasses on). Since the steroids helped my pain for a while, I have to start taking them again. Which is good because I would like pain relief again and I have been in some severe pain for the past week or so.
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