So... sometimes in my blogs, I give all the medical info, but I forget to really write about how I'm feeling these days...
I'm feeling much better than I was in the hospital.
I don't feel terrible anymore, thankfully (at least, most days I don't!)! But I still don't feel well. This is the longest it's ever taken me to "bounce back" from a hospital stay, I think. I am very tired. I am very weak. I limp around on arthritic joints that randomly give out. If I stand up (or on bad days, even if I sit up, or even if I'm lying in bed) for very long, my heart races, I sweat, and feel very lightheaded. My hands constantly tremble. I still have pain, albeit mostly a MUCH, much lower level of pain than I've been in for the past several months. I run daily fevers, which means I have daily chills/sweats/headaches/malaise. I sleep a lot. But OVERALL: I am much, much, much, much better!
Also, I can eat again, really, truly eat, and I LIKE to eat again. I LOVE to eat again! I think it's the steroids and one of my nerve pain meds, but I am crazy about food now! And I can eat without pain or nausea. I am eating more than I've eaten since before I was diagnosed with UC (and as a result, I'm weighing in at 34 lbs heavier than my lightest weight a year ago!). It's fantastic. Some of this also may be due to the fact that Dr. Saturday freed up all the adhesions that had grown in my pelvis around my intestines, which can make it difficult and painful for food to move through. If so, the pain will start to come back after a few months, but hey, I'm just enjoying this while it lasts! Food has been an enemy, a chore for so many long months. I've had to distract myself at mealtimes in order to choke down enough calories to keep me going, then fight the nausea for hours afterwards. No longer! Pass the salt, please!
I am extremely happy (when I'm not grouchy from the steroids) to be at home. I can't even express how wonderful it is to be NOT in the hospital. I think that going home was the single best thing possible for my health. I got labs done last week. I compared them to my labs drawn the day I was discharged from the hospital. They are dramatically improved, praise God! Still several areas of concern, but overall SOO much better!
I am having some difficulties with the steroid taper. I taper every 5 days. The first day and a half after tapering are usually pretty good, although I feel pretty fatigued, but 36 hours after I step down, I get hit with really bad pain. It lasts for a little less than two days, then starts to relent... then it's time to taper again! At least it's predictable. This cycle will continue to repeat itself until the end of the month. At that point, I'll switch back over to my long-term steroids. They may try to taper me to a slightly lower dosage on those (due to the cyst, my body started needing more steroids, so we had to up my dosage twice back in January), but we'll just have to see how my body responds.