Friday, June 15, 2018

Mid-June Update

It's been a couple of weeks and we've been rather busy enjoying summer and feeling good. That isn't something that I have been able to say often in the last few years. Both Amber and I have been feeling rather well lately, and we are thankful for this reprieve.

Amber always feels best over the summers. Her joints do not ache as much from the EDS, her autonomic nervous system seems to behave better too, and she has more energy. This is probably the best summer she has had in... oh goodness, 7 years? She's acting like a normal teenager too. Stays up later than she should, sleeps later than I'd like, hangs out with her friends, chats / texts with her friends, spends hours gaming with her friends, and gives me attitude. I'm not as fond of the attitude part, but I'm grateful she has the energy to be snarky with me.

Our schedule has been full most weeks this summer, and a little voice in the back of my head worries that the busyness will trigger a relapse or flare for Amber. Still, even with early mornings some days she has managed to keep going. Maybe we've just learned how to balance her days and it is second nature to us now. I don't feel like I'm working to balance her activities, although it's possible. 


We re-arranged her spare room again. This time we swapped out a table for a desk, and moved her gaming computer. (New chair arrives today).
Lunch at a favorite restaurant that is moving a little farther away. 
I've also been feeling unbelievably normal-er. Is that a word? After I had to take the extended large dose of prednisone that ended in early May, I was still not feeling all that wonderful. My hand / foot joints were not as swollen or painful, but they still were not back to normal either. Then something happened about a week after I completely finished the prednisone. I started to feel better than I had in almost two years. My hands are still not quite right, and I might have to consider this the new normal. Amazingly, my back has had very little pain since being on the prednisone. I had gone through many steroid injections in my back and never got this level of relief. I can actually sleep without waking because I'm in excruciating pain. I can even work around the house without being crippled. It's amazing. 

Not to belittle the success of the prednisone on my back, but I have energy again. I'm not talking about the energy I probably should have, but I have the energy to function again. I had gotten to where I had about 6 hours a day of energy and even then I was pretty pokey. Now I'm gardening, cleaning the house, re-arranging furniture, planning school lessons, getting up early on many occasions for fun activities, and I don't feel completely fuzzy brained. It appears the prednisone did exactly what the rheumatologist wanted and reset my immune system a bit. Not a lot, but just enough for the plaquenil to keep the Sjogren's in check. I'm not going to complain about the added bonuses that have come along with that reset.

Half of my gardening purchases. I had to go back for basically double this amount. And Amber has been keeping up with her exercises even though she's not regularly attending PT.

So what have we been doing with this blessed energy and health? 
  • Amber has gone swimming with friends, outside in the heat, a couple of times. 
  • We went to the zoo for an entire day, in the sun and heat. Admittedly, this one was hard.
  • We went on a road-trip field trip with friends to various Lincoln locations in Springfield, IL. It was an all day trip with lots of walking, standing, listening, and looking. It was a hot day, but the threat of storms kept it from being overly sunny. 
  • Amber has had weekly Project Write sessions / classes. She adores the group this year and they are making great headway in writing their play.
  • Amber has been preparing for her flute recital the first of July.
  • Amber had her regular eye checkup, and managed to skate by another year without a prescription change. 
  • Although Amber's dental appointment didn't go as great - four wisdom teeth to be removed this summer. Consult is next week. Our greatest fear over this is that it will trigger a dysautonomia flare, and of course that there are EDS complications.
  • Lots of shopping, just for the fun of it and not because we needed to go for household items.
  • Lots of lunches out, again because we could.
  • Movies, with many more planned.

In summer school:
  • Government is finished!
  • Marine Biology is finished!
  • Huckleberry Finn is finished!
  • Half of the Survey of Science & History, Amber's last science credit, is complete. She will formally start 11th grade in August with all of her science credits finished.
  • Amber has started her summer reading schedule with Little Women. I have assigned several books for this summer, however she will not be writing literary analysis papers on them. 
11th and 12th grade Greek books arrived. And Amber worked on science while we waited for service on my car.
In the coming weeks, Amber has more plans with friends and will serve as a group leader at our church's VBS. I'm not going to volunteer again this year. Although I'm feeling fantastic right now, I can't guarantee that will last and there are not many jobs I can do at VBS when I'm in low energy mode. It's just as well. Amber prefers to have some events where I'm not there too. It can be hard for a homeschooled kid to get away from mom.

That's it for now! 


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