Fighting POTS

Things are pretty stable here. Lauren's still in pain, but managing much better now that she's in a walking cast for the next month. She recently tried to convince Greg that it was pajama day at school because she didn't want to get dressed. He had to text me to confirm that it was NOT pajama day! She's doing great in school, has moved up to reading level B (reading is a slow grow for her, I'm guessing we'll be at B all year), is doing great in speech therapy (Ms. Katie is so fun!), and is growing like a weed. Behavior is still so-so, but I live for the good days.

Ryan is doing FANTASTIC and I am so, so grateful for the progress he's made. His anxiety (knock on wood) has been really well controlled and he's been able to get out and do some really fun things that he wouldn't have been able to do a year ago.

I'm still feeling pretty bad. I've now tried (and failed) three medications to treat POTS. The most recent one, Northera, is the last resort medication when nothing else works. I can't try a beta blocker because my blood pressure is too low. I had a cardiology appointment today and ended up seeing a different doctor in the practice. He was awesome, and ended up bringing in my primary cardiologist so I got a two for one special. I mentioned a study I found in a medical journal discussing using IV fluids as a treatment option for POTS, and one of the authors is THE POTS guy and he's in Ohio. I had a copy of it in the car (my own symptoms and failed treatments highlighted), and the cardiologist asked to me go get it for him to review with my primary cardiologist. They reviewed it, and the plan is for me to start weekly IV fluid infusions beginning next week, in hopes of increasing my blood volume to a normal range and decreasing symptoms. I'd really like to feel well enough to exercise again. Before I got sick I was exercising about four times a week and I really miss it. My hopes are that with the IV fluids I'll be able to exercise and reverse the deconditioning that POTS has done to my body. I'm really grateful for a cardiology team willing to try whatever might work to help me regain function. I was almost in tears in the office today talking about the things I used to be able to do (ride my bike, ride the adaptive bike with Lauren, take the dog for walks, take my kids to the park, walk around a grocery store, travel without fear of getting seriously ill in an unfamiliar place without access to resources). I miss my life! All vacation plans are suspended right now due to my health (and also because life is expensive). Today my cardiologist recommended that I go to the Cleveland Clinic but my health insurance doesn't allow me to go outside of our health system. I recently saw a neurologist and had an MRI to rule out some other possible causes for my symptoms (it was normal, thank God). I'm trying REALLY hard to keep a positive attitude but it's really depressing to see how my life has changed over the last 6 months or so and I feel like my life is a shell of what it used to be. I'm fighting extreme fatigue, GI discomfort, dizziness, shortness of breath, vision changes and brain fog. The brain fog! I recently got totally disoriented driving home from my twin sister's house. She lives 2 miles away and I used to live on the same street, plus I grew up in this city. It's beyond frustrating. The silver lining is that my anxiety is pretty well managed because I'm honestly just too tired. I'm so thankful to have a team of doctors that are on my side and willing to try different things to see if we get results. If you're a praying person, please pray for me. If you're more of a good thoughts/vibes person, I'll take those too.