Thursday, July 5, 2012

How are you feeling?

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.

I am also having random attacks of the dizziness, shakiness, confusion, headache, sweating, extreme muscle weakness, salt cravings... these attacks seem to happen in the late afternoon/early evening. Endo Doc split my steroids into three dosages, although she admitted there's not a scientific/logical reason for WHY this might help. But guess what? It DID help. So that's good. She said that this likely isn't an adrenal problem; it's a POTS issue. Deconditioning is a huge reason for POTS symptoms to flare, and I guess 5.5 weeks in a hospital might qualify in that regard. I am being careful to hydrate myself and avoid the heat and generously salt everything in sight!

Finally... I got to go see fireworks yesterday. It had been several YEARS since I've been able to go watch fireworks on the 4th of July. Last year, I had just had surgery, and watched far-off fireworks through foggy hospital windows. The year before, I was just plain sick. In 2010, I was about to be admitted to the hospital for severe pouchitis. In 2009, I was flaring and didn't want to leave the comfort of my bathroom... ;) And so on. But this year, I went and watched and it was wonderful. Absolutely amazing. I NEVER take things like that for granted now. Events like this are just so special and precious. I am supremely thankful when I get to experience the good things of this life... while remembering to thank the Giver of all good things.

Hannah ;)

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