Wednesday, April 9, 2014

Neurology Follies, Ped Gastroenterology and a road trip.

Still waiting on my prior authorization. I didn't call on Monday and Tuesday we were at the Pediatric GI for SDiva. It took us almost 3 hours to get there. Big Daddy went with us since I most likely wouldn't have been able to make the drive on my own. So I called first thing this morning and left a voicemail. The nurse called me back around lunch and said they HAD finally received the first form and sent it back but that they'd sent ANOTHER one and now they were working with that form and she'd keep me updated. I'll probably call back on Friday. She said normally the pharmacy does most of that work so she was surprised they were sending it to them. This is driving me crazy. If we don't get it situated soon and a follow up scheduled I'm going to go ahead and request an appointment for neuropathy symptoms.

As for the Ped. GI, like I said, it took us almost 3 hours to get there. There was road work outside the city and in the neighboring cities, with detours and everything. One lane traffic on the interstate doing max 25 miles per hour. We got there at 11 for a 11:30 appointment (after leaving home at 8:20 AM). It was nearly 2 before we saw the doctor, so a little over 2 hours of sitting there. The doctor asked about a diagnosis that had been written down, apparently either her normal pediatrician suspected a possible cause or something because he asked if it had been diagnosed with a scope and I said I'd never heard of anything so he looked again and saw a question mark beside it meaning the doctor suspected it. Anyway, he ordered both an endoscopy and a colonoscopy. He wanted to do it next week but Big Daddy needs advance notice to get off and I can't do it alone much less repeat it next week.

The trip took a lot out of me. I wore my compression stockings and still felt minor discomfort in my legs, my arms were losing some feeling if they weren't kept down. I fell asleep at least once (Big Daddy said twice but I don't remember the first one) on the way home and literally felt as if I couldn't move once I got back into bed and relaxed. Then I slept all night. Big Daddy laid out the girls clothes for school, made sure their homework was back in their bags and woke them up this morning for me. All I had to do was fix their hair, make DCourtley's snack (kindergarten eats last so they require a daily snack). I went back to sleep shortly after and slept until after 12. I feel much better now but still not 100% but still, I didn't expect that to drain me QUITE as much as it did. I mean we were home before 5 and I did next to nothing until bed and slept all night. But I guess it'll give me some idea of what to expect next time. I'm for sure taking headphones or something, and maybe I need to invest in stronger compression. The ones I have now work well for around the house and for a while even under strain but I still notice discomfort after a while, whether sitting or whatever. And I want to get some compression sleeves too. My arms are just as bad as my legs. I was able to recline a bit but full on laying isn't an option. I did take plenty of fluid to stay hydrated. And we stopped about 3 times to stretch legs etc on the way there. I'm not sure what else I can do.

We have to go back next month and either stay at the Ronald McDonald house (if they have an opening) the day/night before or leave around 4:15 AM the day of. THAT will REALLY mess with me. My narcolepsy will go crazy not to mention my dysautonomia. That is one of the options but honestly, the least preferential of the two. I'm not sure what to do about DCourtley. We took her with us this time because we had no way to get her from school (since it was after 4 when we got home) but I don't think it's necessarily right to keep her out every time. I'm fairly certain we can find her a way TO school but I don't know about home. And I don't feel comfortable leaving JSmiley with anyone but I don't know if we can bring her. The nurse asked if we'd be able to find childcare or if we'd have to bring them. Of course, it'd probably be better if we COULD find childcare for them as we'll be waiting on the procedures plus 1-2 hours in recovery for the sedation. That's just yet another thing to figure out.

Anyway, I'm still not feeling that great so I'm going to go relax for a bit. Later.

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