I finally started getting my IV fluid infusions. I go on Wednesdays to the infusion center at a hospital nearby. It takes about 2 hours. It's honesty not the miracle 'cure' I was hoping for. I was hoping that this would magically make me not have POTS anymore because I really freaking miss my life before. But I can say it's helping! Since I started weekly infusions, I haven't had to call into work, go home from work (other than during a bout of horrible bronchitis). On my FitBit, I don't show as many huge spikes in heart rate. I don't feel like I'm having as many drops in blood pressure. I'm able to do a little more walking on most days. Yesterday Lauren and I went shopping with my mom and by the second store my mom noticed I was struggling. But that was on the second store! I went to a yoga class at church this week and it was AMAZING! I was able to do the whole class. I did get really dizzy a couple of times during position changing. It made me wish I had Monte there to steady me. Generally I feel like the effects of the IV fluids wear off for me by Sunday but it helps me to get 4 good days! Mornings are generally worse for me, so luckily this morning I felt better by the time we had to leave for church.
I've found that Monte is really helpful for me! At church I realize I don't have to stand when everyone else does, etc. But I like to. I want to be able to fully participate. Since Monte doesn't go into Lauren's classroom with her, it's helpful for me to have him next to me to steady me when I get dizzy. (Greg works most weekends so generally I'm solo.) I cleared it with our service dog organization that it's okay for Monte to help me too sometimes when he isn't with Lauren. He's an awesome dog and so eager to work. Today I was a little dizzy and while Greg was actually with us today, I was able to just kind of touch his head and back to steady myself. When I'm out shopping, like I was with my mom, I can use a cart to lean on if I'm having trouble. It was actually SO nice to be at a store! I haven't been shopping like that in a really long time. I like to conserve my energy, and it was really nice to be able to "spend" some energy while out with my mom and Lauren.
Ryan has been doing fantastic. We all had a respiratory bug recently and seemed to recover from our symptoms. I did eventually go to urgent care the Sunday after Christmas because I was miserable, and got a Z pack. The kids seemed better, so we didn't worry about them. Until Ryan started licking/smacking his lips and got a big rash all around his mouth. He really couldn't help it, I think it was a tic. Plus he was continually clearing his throat, I don't know if it was residual from illness or if his throat clearing tic had returned. Either way, I asked his nurse practitioner if we could try antibiotics for him. It's so great, he's stopped licking his lips and the rash is clearing up nicely. Lauren had actually developed some significant anxiety a few days before Ryan's PANDAS symptoms returned. She couldn't even be away from me without crying if I was in the next room. She had started biting her nails down to the quick. She's never bitten her nails before! So I asked her nurse practitioner and we did a Z pack for her too. She is no longer biting her nails AND I'm typing upstairs alone as we speak!
Greg managed to avoid all illness, lucky guy. So he's been helping us and generally being amazing.
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