Well, my steroid infusions were aborted after two treatments.
No surprise, I suppose, that the combination of a sick kid (strep throat) and immune-system suppressants like IV solumedrol meant that I got sick.
That, combined with the fact that the infusion nurses were concerned about my rising blood pressure and pulse and the headaches the infusions gave me meant my doctor took me off the steroids. I had three of the "call your doctor immediately" symptoms on the list of possible side effects: headaches, shortness of breath and racing heart with palpitations.
Sadly, on Monday, which would have been my third infusion, my right eye seemed to be slightly better. I don't know if it was wishful thinking or true improvement. But by Tuesday, the vision and pain was as bad as before.
(Side note: I don't know if I just hadn't noticed it previously or if it's a newer development, but I noticed Tuesday that when I look at the green light on the cable box in my bedroom, it's no longer a circle. It looks like a snowflake, with pointy spikes in every direction. When I look with just my left eye, there's just two spikes from an otherwise round light. When I look with just my right eye, it spikes all directions. Kind of pretty, but a little weird too, especially since I know it used to not be like that.)
So. Now I still have my eye problems, and I'm sick with what I suspect is turning into bronchitis (I have an amazing wheeze going ...) and my energy is even more non-existent than before. Lovely.
I saw the new hematologist on Tuesday, too. Really nice guy, great personality. He pretty much reiterated what I already knew -- that my monoclonal gammopathy of undetermined significance (MGUS) likely just needs to be monitored regularly and only develops into cancer in a small percentage of cases, many years down the line.
But he also expressed a little concern with my iron levels and said that since over-the-counter supplements have been unable to raise the levels enough, he will consider giving me IV infusions of iron.
Then he ordered a whole bunch of tests, including another one for celiac disease even though I told him I'd been tested and had the endoscopy biopsies come back normal. But he wanted to do his own tests and I didn't feel well enough to argue that it was an unnecessary cost.
So the lab took a bunch of test-tubes of blood. I don't know if it's because of the recent pokes I'd gotten for the infusions but the nurse had a hard time finding a good vein that didn't collapse on her. And I'm still kind of embarrassed but I passed out at the end of the blood draw. That's never happened to me before! I do know that my blood pressure was very low when I was checked in to see the doctor -- 89/56 -- and my pulse was high at 125 (sitting). I don't know if that had something to do with it or not, but I'm glad I see the cardiologist next week for my cardiac testing.
I also was scheduled to have my brain MRI on Wednesday, but that was a mess too. I had trouble lining up a ride, so I went without taking the Valium to help me through my claustrophobia and it did not work well. It's rescheduled for Monday, which is spring break and Scott will be off work and can drive me.
Extreme Fatigue - Exhaustion. Fatigue. Lethargy. Weariness. It's so much more than just being tired... And it hasn't been this bad in a very long time... it's so intens...
5 months ago