So, in my last post I mentioned we took the kids to the Science Center. Being in a public place like that is ASKING for an infection for people like J and I. And an infection did I get. Within a few days I was sick. So sick I was sleeping 16-18 hours a day. I had no idea what was wrong. I assumed it was the chronic EBV, epstein barr virus, and assumed I was in for a few weeks/months of being miserable. On Saturday 10/8 I was so bad that Rick kept taking my BP every 2 hours or so and it kept getting lower and lower. Finally he said enough and we were off to urgent care. IV fluids, blood work, xrays, a dose of toradol, an amazing NSAID might I add, and my pain was down to a 2. I didn't realize I was in that much pain until after I got the toradol. I was offered morphine but declined. Anyway, I guess my labs were OK but the doc asked one question that kinda threw us for a loop. He asked if I had recently come off steroids. Why yes, in July. Why? I was going into adrenal shock. I immediately got 2 doses of IV Solu-Medrol and was instructed to start prednisone again. Xrays showed I was also at the beginnings of a sinus infection. I needed to contact my rheumy ASAP. I had a neuro appt on 10/10 for the seizures and he made the appt for me with my rheum. On Tuesday 10/11, I got a call that radiology reviewed my xrays and I had pneumonia.
been 2 weeks and I feel so much better. I can function again. I
remember what I did that day. I'm not 100% but my 100% is probably
different then a healthy persons 100%. I don't need to nap but I do need
to rest through out the day and I need to be in bed at a decent time.
If not, I suffer the next day.
I have an infusion on today and I'm
hoping I'm healthy enough to not relapse. That's my biggest fear right
now. You don't realize how fast things can go downhill until it happens.
I don't want the kids to see me like I've been over the last 5 weeks.
It scares them to see me so sick and seizing.
Oh, and we found out the cause of my seizures. My pain med, tramadol,
AKA ultram. Tramadol can lower your seizure threshold and after 3 years
we now know that is what causes my "episodes." So, no more pain meds
for me. My rheumy doesn't like to give stuff out so I'm stuck with
naproxen. If the pain gets really bad, and I'm hoping with my upped
Remicade dose and increased frequency I won't have any, I can go to
urgent care, the ER or call my rheum.
That's where I'm at right now. I'm a whole lot better then I was a month ago.