So the last time I updated, I was about to see my rheumatologist because my nose and eye symptoms had gotten pretty bad again.
My rheumatologist basically said that he could go either way as far as needing to treat the GPA again. If there was a congress of 100 in his head making all his decisions, they would pretty much be 51 in favor, 49 against. So he ordered some blood tests to see if that made any difference.
The blood tests all came back normal. Annoyingly normal. Because normal didn't give us any information at all, really. If they were bad, if one or another level was super high, we could look at that and say "yeah, we definitely need to get some treatments going." But they were normal.
Ultimately, my rheumatologist decided that it was better to do another round of infusions. I didn't have any major bad reactions last time, and it's better to take care of this earlier rather than later so it doesn't go and close off my throat again. Or, who knows, maybe this time it would go into my lungs again, or my kidneys. If we can stop it when it's just in my nose, that's pretty great.
So I'm in the infusion center now getting my first infusion. It's a different infusion center this time. Last time I was able to go to the big medical center just a block or so away from my house. This time I'm at the university hospital. Their infusion center is not nearly as nice. Apparently they're getting a new one, but it won't be done until 2020.
|I'm all hooked up. |
Tube coming out of my hand. Fun times.
Some of you may be wondering why I haven't kept this blog updated with all the details of this little flare.
I think the biggest reason is that I don't have to process what's happening as much this time. I started this for two reasons: so I wouldn't have to keep explaining to everyone what is going on with me, and so I could work through my issues by writing about it.
This time I'm not as sick, and I'm taking everything pretty much in stride. It's easier because it's not disrupting my life as much. The last couple weeks I've been very tired and I've missed a little work, but I can generally recover my spoons with a day of much naps. So, it's bad, but not too bad.
I am probably going to also need surgery. The good(?) news is that if I can get it in before January, I won't have to pay for it. The infusions are expensive enough to take care of the max out-of-pocket amount for the year, so surgery will be totally covered. Yay for free surgery?
How's that for a silver lining?
I think that's all I have to say for now. I think I might nap. Or play Pokemon Go. There are lots of pokemon at the hospital.