Wednesday, December 12, 2018
POTS update
I knew it was too good to be true! My cardiologist had said they could do my IV infusions in the office, which didn't sound quite right. His office staff said they couldn't do it, but he said they could. I was supposed to go today...and they called yesterday and said they can't. The good news in this is that I'm already set up at a nearby infusion center attached to a local hospital and I got next week Wednesday. I talked my insurance company and it's covered (HALLELUJAH!) thought I'm sure my co-pays won't be small. The downside is that this is a rough POTS week and I have to wait a full week for IV fluids, and I'm not currently on any medications. At work yesterday I had several episodes of dizziness and shortness of breath, getting pre-syncopal (vision going black and I feel like I'm going to pass out). Today is my day off, so I've been taking it super easy and I've already taken 2 naps and it's only 2pm. Ryan's been a little under the weather so I let him stay home an extra day (I swear he's coughing and sneezing, but it's also really nice to have him home!).
Sunday, December 9, 2018
Great day!
Knock on wood, today has been almost a unicorn parenting day with Lauren. She let me get her dressed for church, didn't argue about heading out the door, she didn't argue with me at all when it was time to leave church, and she let me relax and read a little bit after church. We played Barbies and Playdoh together. We TRIED to accompany Ryan on a Pokemon Go walk in our neighborhood but after 2 houses Lauren decided to go home (even though I had her wheelchair with us, I tried forcing her in and then decided it was not worth fighting over) and I obviously can't leave her in the house even remotely unsupervised. Ryan then called and chatted with his grandma while he walked around a little bit. Ryan decided not to come to church with us (we went out to dinner with extended family last night and it was loud, but he ate! He told me that the air around him was squeezing him aka he was anxious, so I totally expected him to choose to stay home this morning.). He actually asked for waffles for breakfast! This might seem like no big deal, but he stopped eating waffles about a year ago when our wonder-nanny left, and this morning he actually asked for them. Anything we can add back into his limited food repertoire is a win, even if it's all carbs! AND he ate an apple this week and he stopped eating apples a couple months ago.
Greg's been fighting a respiratory illness for almost 3 weeks, so he's been down for the count. I would totally think it's the flu but he hasn't had a fever. I'm just hoping and praying nobody else in the house gets it! My symptoms have been pretty okay the last few days (thank God!) and when I felt dizzy today, Lauren let me lay down for a little bit.
Church today was awesome. Pastor Scott brought his oncologist to church and introduced her which I thought was really sweet. She talked about the importance of organ donation, which I super loved. Pastor talked about the Christmas story and the birth of Jesus. He talked about the possibility of Mary saying no to the angel who told her she would carry the son of God, and encouraged the congregation to think of anything God was asking us to do and to examine our hesitancy to say yes. It was really food for thought. As always, I really wish my husband could come to church with me, but the guy works every single night so he needs to sleep.
And now I'm attempting to make meatloaf (terrifying, first time ever) so in about an hour we'll know if we need to order pizza or not!
Greg's been fighting a respiratory illness for almost 3 weeks, so he's been down for the count. I would totally think it's the flu but he hasn't had a fever. I'm just hoping and praying nobody else in the house gets it! My symptoms have been pretty okay the last few days (thank God!) and when I felt dizzy today, Lauren let me lay down for a little bit.
Church today was awesome. Pastor Scott brought his oncologist to church and introduced her which I thought was really sweet. She talked about the importance of organ donation, which I super loved. Pastor talked about the Christmas story and the birth of Jesus. He talked about the possibility of Mary saying no to the angel who told her she would carry the son of God, and encouraged the congregation to think of anything God was asking us to do and to examine our hesitancy to say yes. It was really food for thought. As always, I really wish my husband could come to church with me, but the guy works every single night so he needs to sleep.
And now I'm attempting to make meatloaf (terrifying, first time ever) so in about an hour we'll know if we need to order pizza or not!
Wednesday, December 5, 2018
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.
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.
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