Promising...
So, I don't remember if I mentioned that early last month, I started a new medication (Plaquenil) along with a course of prednisone in an attempt to make my immune system play nice. My rheumatologist and I decided to retry it secondary to the methotrexate, which has not been controlling my very cranky immune system well enough, especially not since the end of this summer. I failed it in the past, for two reasons. Firstly, it didn't do anywhere near enough on its own. Secondly, it seemed to be destroying my stomach, but in retrospect I think that was the beginning of my gallstones, and my gallbladder is now safely gone. It's a last thing to try before we bring in the really big guns, biologicals, which of course we don't want to do, seeing as they raise things like cancer rates. The methotrexate made me nervous because of its side effects, but I was reasonably sure it wasn't going to kill me. The chances that biologicals could is rather higher, and my family already has pretty awful frequency of skin cancer (not to mention that I got badly sunburned as a child, which also raises your rates, as if my ultra fair, red-headed, blue-eyed complection wasn't risk enough).
A week in to both, I was feeling better than I had in...I don't even know how long. I went to my cousin's wedding 4 hours north of here, stayed as long as my sore, tired fiancé could, and came home feeling fine. Yes, we broke the journey overnight about halfway both directions, going to my parents for the night, but still. I did fine, in less than ideal seating. I did fine even though we forgot my pillows, which has been a recipe for disaster in the past. But I was good. For once, the reason we left when we did wasn't me! (Though I was more or less ready to go because the dance floor was too crowded for me to risk getting on it, with how much it sometimes hurts me to be jostled, not to mention the dog and the fact that my fiancé doesn't like dancing in front of people, especially strangers.)
Sadly, I had some scary visual effects - my distance vision started going blurry. My glasses are badly out of date, but I couldn't read things on the tv I could definitely read two weeks before, and I was seeing stars around lights in twilight conditions. So we stopped the Plaquenil, and my vision improved a bit. This happened at the same time I was titering down my prednisone, which will become relevant in a moment. I was a bit scared, but I had stopped the presumed culprit and I already had an eye exam scheduled a couple days after the wedding. The eye exam was clear, but the optometrist was concerned, so he sent me for more testing.
My vision improved over the next week or so, but my immune system came roaring back to attack. I hurt a lot. So my rheum upped my prednisone again while we waited for the optho test results. I didn't make the connection then, but a week or so later my vision got blurrier again. I worried.
This week, I finally had the rheum appointment I scheduled months ago. We talked about the eye stuff, she read the optometrist's exam notes, and then rather casually she said that prednisone could cause the blurring I experienced. Suddenly, the rebound of the blurring made sense.
So I'm back on my meds. I woke up on my own today at about 9:45, which is earlier than I have in years, and I woke up feeling fine. I got less than 8 hours of sleep last night when I've needed 10-12 for years. I'm a little sleepy now, like I under-slept a bit, but there isn't the bone-deep exhaustion, mental blurriness, and increased pain I normally associate with under-sleeping.
I'm kind of holding my breath on this, but I'm excited. I'd really like to start getting a life back. The last 2 years, I've spent so much time trapped in bed, and the past several years I've been so far off my mental game. I'm...hopeful. Very hopeful. Uncomfortably hopeful. I haven't felt this hopeful in a long time. I don't expect to be capital-w Well again...but being able to prep for and take the Bar, work even if it's from a home-office, maybe even dare I say it take up casual (rather than competitive) ballroom dancing again...that idea is very exciting.
A week in to both, I was feeling better than I had in...I don't even know how long. I went to my cousin's wedding 4 hours north of here, stayed as long as my sore, tired fiancé could, and came home feeling fine. Yes, we broke the journey overnight about halfway both directions, going to my parents for the night, but still. I did fine, in less than ideal seating. I did fine even though we forgot my pillows, which has been a recipe for disaster in the past. But I was good. For once, the reason we left when we did wasn't me! (Though I was more or less ready to go because the dance floor was too crowded for me to risk getting on it, with how much it sometimes hurts me to be jostled, not to mention the dog and the fact that my fiancé doesn't like dancing in front of people, especially strangers.)
Sadly, I had some scary visual effects - my distance vision started going blurry. My glasses are badly out of date, but I couldn't read things on the tv I could definitely read two weeks before, and I was seeing stars around lights in twilight conditions. So we stopped the Plaquenil, and my vision improved a bit. This happened at the same time I was titering down my prednisone, which will become relevant in a moment. I was a bit scared, but I had stopped the presumed culprit and I already had an eye exam scheduled a couple days after the wedding. The eye exam was clear, but the optometrist was concerned, so he sent me for more testing.
My vision improved over the next week or so, but my immune system came roaring back to attack. I hurt a lot. So my rheum upped my prednisone again while we waited for the optho test results. I didn't make the connection then, but a week or so later my vision got blurrier again. I worried.
This week, I finally had the rheum appointment I scheduled months ago. We talked about the eye stuff, she read the optometrist's exam notes, and then rather casually she said that prednisone could cause the blurring I experienced. Suddenly, the rebound of the blurring made sense.
So I'm back on my meds. I woke up on my own today at about 9:45, which is earlier than I have in years, and I woke up feeling fine. I got less than 8 hours of sleep last night when I've needed 10-12 for years. I'm a little sleepy now, like I under-slept a bit, but there isn't the bone-deep exhaustion, mental blurriness, and increased pain I normally associate with under-sleeping.
I'm kind of holding my breath on this, but I'm excited. I'd really like to start getting a life back. The last 2 years, I've spent so much time trapped in bed, and the past several years I've been so far off my mental game. I'm...hopeful. Very hopeful. Uncomfortably hopeful. I haven't felt this hopeful in a long time. I don't expect to be capital-w Well again...but being able to prep for and take the Bar, work even if it's from a home-office, maybe even dare I say it take up casual (rather than competitive) ballroom dancing again...that idea is very exciting.