Tuesday, April 23, 2013

Feelin' POTS-y

So... to catch up... the couple of liters of IV fluids I got on Tuesday helped tremendously... until late Wednesday night. Thursday I hung in there, but needed to be horizontal about 85% of the time due to a pounding heart, sweatiness, shakiness, and basically feeling like I was going to pass out. Whenever my POTS symptoms flare up like this, my body has a very tough time tolerating any pain whatsoever. My pain, thankfully, had been SO well-controlled of late... a fact that just fills me with amazement and thanks! The problem is, when my body starts freaking out like this, any level of pain causes my body to freak out even more and simply exhausts me. So I'm learning that I just have to be a little more aggressive with the pain management when my body is struggling. That has required increasing my meds a little bit, but that has WORKED. I really feel like the pain is really the best managed it's been since I started having such bad pain three years ago. PRAISE GOD!

The POTS stuff has really been quite incapacitating. My stomach started dumping again, and on Friday moring, my heart rate was increasing by 40 bpm when I stood up, so I placed a call to Dr. FancyPants requesting more IV fluids. He was happy to comply, and the infusion Nurse Rosie (whose her can-do, go-get-'em attitude is reminiscent of Rosie the Riveter) hooked me up to an IV pole after just two sticks (the first day, she got it in on the first try!). I felt too sick to really do much of anything. I was shaking all over and just feeling really terrible. Nurse Rosie was quite concerned and told me I looked like crap (Thaaaaanks... ) and called the doctor. Dr. FancyPants told me to restart the Lomotil (med to slow down the dumping - risky at this point in time due to my obstruction issues, but I was having to pick between going to the ER for fluids or taking a chance with the medicine). He told me that I would need to go to the ER if the fluids didn't perk me up, or if I felt this bad over the weekend. Thankfully, once my body got a few more liters of fluids, I was feeling substantially better, enough so that I ran a few errands, and went to a party! I felt like a new person!

The fluids "stuck" this time for a few days... and then it's been back to dizzy, shaky, yucky-feeling Hannah again. Bummer. My pain has also spiked up a ton - just in my muscles, but it's really quite severe again. Back in October, after my sepsis hospital visit, I had to almost double the dose of my main pain med due to a pain flare (likely brought on by the severe illness). Over the last several weeks, thanks to Dr. Magic Hand's magic hands, I've been slowly reducing my dosage back to where I had been prior to the pain flare! Unfortunately, the last step down has not been well-received by my body. My pain has majorly spiked, whether from the lack of meds, POTS flare, or the fact that I also decreased my steroids just a bit. So I had to go back up a step. It's such a slow-acting medicine that it will be a good 4 days before it kicks back in and I get some relief. :( The good news is that even though I have to increase my dose slightly, it's nearly a 50% reduction of what I've been on since October, so that is fantastic!
More good news: I've also noticed some very positive changes in my joints over the last few days. My stiffness has improved, and my joints are virtually pain-free at times! I can't even remember the last time that has happened! I am super thankful and excited about this! I've been facing tons of joint pain, swelling and stiffness without a break since my huge inflammatory reaction after my surgery last May. We had not been able to calm down my body despite massive doses of steroids, as well as methotrexate injections and other medications! I don't know if it's the steroids or the gluten-free diet or if the Cimzia is in my system now, but I guess we'll see as I continue the snail's pace steroid taper! I am very optimistic that Cimzia will be a miracle drug for my joints! Wouldn't that be amazing?

I am still on a mostly liquid diet - on good days, I add in some hummus or refried beans for protein! My stomach is now alternating between being obstructed and dumping. The dumping was for sure NOT helping the hydration status. I had to take Lomotil a few times to slow down my stomach a bit to prevent me from needing to go to the ER for hydration. Thankfully, the Lomotil didn't cause too much additional pain or issues from the obstruction area. I am thankful that I enjoyed my time this summer and fall when I was able to eat fairly "normally"! I was concerned with the massive weight gain, but my sister told me to just eat up and enjoy it, because it wouldn't always be that good. She was right, and I'm glad I did! :)

Hannah ;)

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