So, I realize I've been slacking at blogging lately. Sorry. I guess after three years, I grow weary of writing about my health issues from time to time! But I do have some bits of news to report...
I went off my methotrexate (arthritis treatment) for a few weeks as I recovered from the serious illness that landed me in the Step-Down ICU for 5 days. I was able to resume the shots last Thursday, but my body could definitely tell the difference. I suffered a bad arthritis flare, needing to sleep constantly, with stiff, swollen joints that made life even more painful than usual. Last Sunday night, the pain came to a head and was simply intolerable... so I wound up in the ER. It was an efficient trip, if I do say so myself... I went in, got an IV, received a couple pain shots, and was back at home in about three hours!
Thankfully, by this weekend, the flare-up went back under control. I'm doing methotrexate shots twice a week now - we are hoping that spreading out the medicine will make it easier for my body to tolerate. The shots give me fatigue, migraines, and nausea, but I think that it's worth it to keep my arthritis under better control. JP Dr also believes that a higher dose of meth will help prevent my body from having the SIRS reaction to illness or stresses in the future.
I was supposed to go see Dr. Saturday the morning after my ER adventure. I called in to ask if I really needed to come. Misinformation told me that I no longer need to follow up with them unless I develop problems. It's not often that I get to cross doctors off my list, so I was quite excited to hear this news! I like Dr. Saturday, but I really prefer fewer doctor's appointments... yay! I am thankful that the wound by Squirt is doing better and doesn't require any treatment.
Squirt has decided that things were too boring, so he started prolapsing - protruding much further than he should. That makes life uncomfortable and complicates his management. I've had some issues with leaks, which is very unusual for me. Squirt v 3.0 has been quite a challenge compared to the earlier versions. Hopefully we'll reach a truce soon. ;)
I've been able to taper down on my steroids a bit. JP Dr had instructed me to double my dosage for several weeks. After I sort of stabilized, I started to feel a bit over-steroided - constantly hungry, very emotional, face swelling more than usual. That was my cue to start tapering a tiny bit. I have gone down two tiny steps over the past couple weeks. We'll see how low I can get before my body protests. I still have many weeks before I'm back to my pre-surgery dosage. And my pre-surgery dosage was 50% higher than the dosage I'd been at for the previous year. I have no idea why my steroid needs fluctuate so much, or why they are so much higher than what "normal" people need. Just another mystery of my body!
Thankfully, with the exception of a few days here and there, my POTS symptoms have been much better of late. I have much less dizziness, shakiness, and heart racing. That's so encouraging and exciting!
I continue to have my blood checked often to monitor my clotting times. After concern that I was still clotting too fast, last week's results were quite a surprise - my blood is now clotting way too slowly! So I'm trying to avoid major trauma and things that could make me bleed out. ;) I can tell that it's going to be a constant balancing act for the next several months!
While my life still seems to revolve around my health issues, I'm reminded that God has allowed a lot of improvement in many ways. I am able to eat and enjoy food more than I have in years! I have compassionate doctors who listen to my concerns and allow me to listen to my body. I'm learning how to manage my health issues. Celebrating small victories is the name of the game!