Ankylosing Spondylitis Support Group

Sorry I've been MIA, school started back up and I decided to get a part time job on campus. Bad idea, but I digress. My PT job was great! Perfect for my restrictions; office work, walking around campus to do hand deliveries with the added benefit of being able to study during down times.

I've only been back in class for three weeks and the last two I've been under the weather.
Week One: Normal Joint pain.
That Weekend I fell. Scraped and bruised my left leg all to hell. That night, noticed a very painful bump on my right calf. Go to Dr on Mon.
Week Two: Go to Dr for this Boil[?], and yes it's a boil/pustule/abcess (whatever you like to call it is exactly what he told me). So I am given my Tetanus booster (it's been 8 years) and while we're at it let's do the Pneumovax (Rheumy recc), 2 antibiotics and warm compresses. Recheck in 2 days. Full on Vaccine Reaction, felt like a Flare without the major joint pain, flat out for two days, started to feel better Fri/Sat.
Sun, came down with what I thought were allergies. Nope, a cold.
[This Week]Week Three: Horrible bruising in inside of left ankle with NO injury having occurred. See PCP="redistribution of the hematoma from my fall 11 days ago".
I had to call off of work today.

My husband feels I have spread myself too thin. While, generally, I disagree with him, I'm thinking he may be right.

I am in school full time, we have full custody of his ten year old and we run an aquarium maintenance business (I have 3 accounts that are weekly, another weekly starting soon and one account that is every two weeks) and are breeding marine fish.

I think adding a part time job may have tipped the scales against me.

In January when I was first screened for Autoimmune stuff, my CRP was 1.5 (RF was only 23 and ESR was "high"). By the time I saw my rheumy in April it was 2.8. In May, I started on Sulfasalazine. I went back in August and it was only down to 2.4.

I need the advice of those in similar situations.
Am I expecting too much of myself when my condition isn't well managed?

I'm frustrated, angry at my body for failing me, feel like crap, Blah! Sorry!

My official diagnosis is SAPHO Syndrome, a form of Ankylosing Spondylitis. I haven't sought a second opinion. I was started on SSZ, went for a 4 week recheck, then two month, my next one is a three month. Problem is, I don't feel much better.

I'd been gaining weight for no indicated reason, fatigued (doesn't quite cover the expanse, but you know what I mean), Getting frequent colds/vague low grade fevers, morning stiffness, afternoon stiffness, trouble sleeping, etc. Rheumy ordered a Sleep Study, turns out on top of it, I have SLeep apnea; which could explain the weight.

I just am at a point where I don't feel like I am going to feel better. Should I expect more aggressive treatment or do a lot of your doctor's make you wait months before they decide if a med is working or not?

I'm also posting this in the RA Group. I just need to bounce this off of someone. I know the head cold is affecting my "head", seriously no pun intended, but . . . . I need answers.
Posted on 09/20/11, 06:52 pm