Friday, October 13, 2017

Medical Week, Take 2 (Wk11 - 10th)

We survived! Two weeks of near daily medical appointments and testing are complete, and we do have a few results, while other results will coming. What we have learned is that medical insurance companies require one to go through expensive tests in order to pay for less expensive testing, since they consider the likelihood of needing the less expensive test to be low. Sigh.

On the positive side, I appear to be responding to the Plaquenil in the way hoped. I've still got a distance to go, but some of my blood counts have stopped going the wrong way and have made progress in the correct direction. We can hope this means that my Sjogren's is being... slowed, modified... by the Plaquenil. The neurologist confirmed it is small fiber neuropathy and is treating the pain, but is unsure why it is progressing so fast. Testing is forthcoming.

Biscotti sunning.
And Socks, the feral cat that adopted us, as much as a feral will adopt a family. He apparently has already been TNR (tipped ear). So we provide a safe outdoor kitty house, food (wet and dry) and water. We keep straw bedding in the house and during the winter the heater that goes with the kitty house. In return, he stares at me when I am late with his food and makes me happy to know I'm keeping him safe.

Amber's neuropsych results will not be in for a couple of weeks still, but her gallbladder scan today went better than the last scan - meaning there are actual results. The last gallbladder scan yielded no results at all, because her polyp blocked the duct(s) and the tracer could not enter the gallbladder. Now that the polyp has resolved, the tracer at least went into her gallbladder, and we find out next week at the GI appointment how it all worked.

School This Week:

Amber started out the week with a fantastic attitude, carrying her heavy backpack along to the hospital for my gastric emptying scan. We were there over five hours and, excepting the few minutes she took to eat breakfast and lunch with Fred, she worked on her school lessons the entire time.

Sleepily she dragged her backpack with her again to my neurology appointment the next day, like a dedicated homeschool student. I was referred to Amber's neurologist by my rheumatologist, who did not know it was my daughter's neurologist. The neurologist is extremely skilled and knowledgeable in treating both dysautonomia and small fiber neuropathy, although he is also at the other end of the metro area from us. This means it was roughly a 45 minute drive away, but thankfully Fred had taken off both Monday and Tuesday to help with appointments.

School at the hospital and my radioactive breakfast.
Although it was a simple appointment compared to a gastric emptying scan, we knew from experience that the neurologist is never even close to being on time and the appointments take as long as needed. It is because of that latter statement that we tolerate him being behind schedule; we know he will take as long with us as needed and not rush through appointments. Amber was prepared with her lessons for the day, and accomplished most of them in that waiting room.

By Wednesday both Amber and I were exhausted, yet still had places to go. I dropped Amber at my mom's house on my way to the rheumatologist since that doctor is very close to Mom's. Amber had an enjoyable morning with my mom, and then we all had a nice home-cooked lunch before Amber's flute lesson in the afternoon. That was about all we had energy for on Wednesday.

Taking a break from the stress and medically busy days, on Thursday we had a field trip I arranged for my co-op meteorology class. We are fortunate the St. Louis National Weather Service forecasting office is not only in our county, but just a few minutes from our house. The National Weather Service is very welcoming and conducts free tours for educational groups, including homeschoolers.  Our one hour tour lasted nearly two hours and the kids had a great time learning what all meteorologists do, especially the work of the NWS and how they collect the data needed for their forecasts.  The field trip was Amber's only school on Thursday; she (and Fred) have been experiencing a good deal of EDS related joint pain from the weather changes. Sitting for nearly two hours on Thursday made Amber stiff and achy, and exhausted.

School at the neurologist
Today was Amber's HIDA scan for her gallbladder, and after nearly passing out during the IV insertion, she's been sickly all day. She doesn't handle needles well, and the first IV vein blew immediately. Getting her from sitting to the table to recline was quite an adventure, but eventually she was on the table and a new IV inserted. Although she never passed out and did not get otherwise sick, it was a close call. Amber also felt sickly during the whole process because she doesn't do well with IVs in her.  This afternoon we've been watching The Hobbit: An Unexpected Journey while Amber works on some Christmas crafts. At least we made the pit-stop by the pharmacy on the way home even though we had to forego the planned grocery trip.

For such a great start to school lessons this week, the end has been mostly exhaustion. Amber still has co-op homework to finish this weekend. Although it was a co-op break week, she didn't do her homework last weekend, and thus must spend some of this weekend on homework from a couple of classes.

HIDA Scan and working on her projects
Accomplished Lessons:
  • Over a week's worth of grammar; it is an easy subject to take with us.
  • Two government lessons
  • Two history lessons
  • More than a week's worth of Illuminating Literature: Characters in Crisis; she's already finished the introductory lessons to the curriculum, the beginning lessons for A Jury of Her Peers, and read the short story. Now she's ready on Monday to start working on the questions. We hope to move on to Frankenstein late next week.
  • Flute lesson and practices
  • Meteorology field trip
  • Lots of crafting 
Next week there are a couple of more appointments, and my new dishwasher is being installed. That means I have to stay home for at least one whole day while waiting on the installers. I'm loathe to schedule the additional tests for me, because I simply am tired of leaving the house every day. Honestly, we are just tired overall.


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1 comment:

  1. That sounds like a very draining week; physically and mentally. I am always amazed at how much work you all manage to get done around appointments and the more sickly feeling days. Hope all the results come back with news you'd like to hear.