Living with CMT, Day 13,785

36.3° That may be an answer.  Not the answer, but one answer.  Winter returned.  And my aches are feeling it.  Though I also have a yucky cold that isn't wanting to let go.  And my overwhelmed system is not happy to fight another battle.  I rest and rest but I'm not catching up.  Will I ever catch up? :)

Work was fun today.  Kids were awesome. We painted dinosaur eggs and I drew a giant dinosaur for a mural-scene that they also painted.  Great creative energy.  Reading kids.  Math kids.  Happy kids.

So I'm not stressed-tired, just sick of being sick tired.  The seemingly endless loop.

Bedtime is tough.  The thoughts that stay quiet through the activity of daytime simmer to the surface.  The pain becomes noisy.  Hard to keep that zen-calm-perspective :)

On the happy note, I am excited for my interview Friday on KVMR Community Radio.  I just remembered I need to drop off CMT info for my wonderful host.  Add that to my to-do list :).  Having conversations helps me feel better, more connected, I suppose.  It allows a blur between the private-self that manages this daily living, and the public-self that makes it look easy :).  It's nice to be real.  Though it gets difficult when it seems like less work to keep it all hidden and quiet.

See, I don't have it all figured out.  I'm doing the best I can.  And that's plenty.

Oh, and I dropped off the prescription for AFO (ankle foot orthotics).  I have an appointment next week.

And my neurologist is working hard to get me medicine to help with the fatigue.  I am not a big medication-advocate. I really like to modify triggers and causes rather than medicate outcomes and symptoms.  Even so, I have my limits with tolerance.  I only use the anti-fatigue meds on the the overwhelming days, to get a break from the heavy fog that can cloak me for days (or weeks) at a time.  He's prescribed this medication five years in a row now.  Every year we get denied because my specific condition is not listed on the medication.  We've appealed twice, I think.  Now the drug company is making a similar version since their patent is running out (in two years) so they won't give samples of the good stuff to my neurologist (which used to last me through the year, a couple of sample-packs).  This new medication gives me stomach aches, but I may get used to it over time, except I don't want to try if the insurance won't approve this one, either.  Ah, the joys of our current pharmaceutical and insurance systems . . .

That's something that doesn't get talked about often: the energy it takes to manage the health-care puzzle when you have chronic conditions.  The doctors, insurance, medication team can take a lot of work. Right when you're tired and needing to be taken care of . . .

I hope that changes before more people make that discovery.  Navigating our current health-care/insurance system takes a lot of energy.  At least for me, maybe some other people have golden insurance that makes it all easy.  I'd like that insurance.

I'll keep you posted on that drama.  In the meantime, I'm doing okay. Looking forward to a little sunshine.  Soon, please :)