I have been in excruciating pain since Saturday. My sacroiliac joints, as well as my other joints, have been hurting for a while, but they have gotten SO MUCH worse since Saturday. I spent most of Saturday laying on the couch with an electric blanket around my lower back.
Sunday I was supposed to do creche at church, but I could barely be there for the first service. (Rohan and I attend the first service when we have kids min during the second service.) My pain was so bad that I was almost in tears. I talked to the kids ministry pastor and explained that I need to go off the roster at least until I get new meds that work. It was a really hard decision for me, but I just couldn't function. I was going to wait in the car while Rohan did kids min during the second service, but Lisa (the kids min pastor) was able to find me a ride home. I spent the rest of the day in my electric blanket again. I also made an appointment to see my GP on Tuesday morning because I could do that through their app. I'd have to wait until Monday to call my rheumy.
Monday came and I was in excruciating pain still, but I had to go to work. I got there and called rheumy right away to see when was the soonest I could go in. The receptionist said that I needed a new referral because apparently my last one was only 6 months. But I was planning on seeing my GP anyway, as I didn't think I'd be able to see rheumy any time soon, so I could get a new one. Surprisingly they actually had an appointment on Tuesday afternoon. When I called my GP to get a new referral, I ended up changing my appointment with my GP to Monday afternoon.
I left work early to get there. He was surprised to find out that I wanted to go back to my old rheumy. But I explained that I needed to get something to deal with the pain. He could tell that I was in a lot of pain. But my old rheumy is currently my only way to get something for it. Getting in to see a new rheumatologist in Canberra can take a year. I DO NOT have that long. I still have that referral to the public rheumatologist going through, but in the meantime I have to keep going back to my old rheumy.
Then yesterday I went to the rheumatologist. I was taking bets on how late she would be, but she was actually basically on time! (only a few minutes late) I told her what's been going on and I was determined to leave with something!
She told me that she agrees with my GP that biologics are what I should be on, but I need to qualify both criteria. My blood is bad enough, but my x-ray last year was not. She gave me an imaging request form to go get a new one. She also gave me some steroids, which are another immunosuppresant, to take in the meantime. I started those this morning and I'm hoping they start working soon.
If I don't qualify for biologics, she explained about another medication she'd put me on. That one isn't as good and it'll lessen the inflammatory markers so it'd be harder to qualify for the biologics later on if she puts me on the other medication. Not to mention it isn't something I should be on long term if I want to have kids because it's known to cause birth defects or miscarriages. So going on it now could mean we have a harder time of getting me on something else in the future. But that's a problem we'll deal with when we get to it. Our first priority is to get me medications so I won't be in immense pain!
I met up with Rohan after my rheumy appointment. That way I could pick out another electric blanket. The pain has been so bad that I wanted to get another one so I could leave one at work and one at home. We also filled my prescription and had dinner out because I still had a birthday voucher. My emotions went crazy from all of the stress of the last couple days. My mind was all over the place and I couldn't stop shaking. But luckily it also meant that I was exhausted later that evening. I slept so well last night!
This morning I went to the hospital to get the x-ray done. I wanted to get it done as soon as possible so we could get the results as soon as possible so I could *fingers crossed* start my new drugs. Getting to the hospital was a pain in the butt, although only literally as that's where the sacroiliac joint is. I was in a lot of pain walking from the bus. When I was in the waiting room, I was literally praying that my x-rays would be bad enough to let me qualify. My joints weren't hurting as bad this morning, so I'm worried about that. They really hurt now, though!
Luckily the hospital is on my way to work and I got through pretty quickly so I made it to work at 9:30, which is how late I sometimes get in normally. It's great working in academia and having flexible hours!
I was in immense pain all day and even almost cried a couple of times. The pain was that bad. Even though I did have my electric blanket, which helps with some of the pain. I have someone from work environment coming over to my office tomorrow to see if there's anything we can do it make it better.
For now I'm home, laying on my electric blanket, and praying to hear good news from my rheumatologist tomorrow!
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