Symptom Update

Time is going by quickly and I'm beginning to learn a lot about my body. What it can do (more than I thought) and what it can't. Where I can push myself a little bit and where I really can't (like naps are a MUST!)

I've learned that if I'm getting sick in any way, my body just shuts down. I need to talk to my PCP about the whole "muscles don't want to work my lungs" thing and see if there's anything that can help with that. It's a horrible feeling. Fortunately it's usually only there if I'm sick or getting sick. 

I've also learned that working three days a week is way more doable than four. I was seriously pushing myself nowhere good working four. Every day I don't work I nap mid-way through. That also helps me in a massive way. I wake up refreshed with energy levels restored. 

To recap on medical progress (or lack of.) 
My neurologist has retired and I wasn't assigned a new one. That's fine with me as I feel that train has gone as far as it's going to go. Every specialist in my network seems to only work on days that I work and I can't take time off every week now that I'm down to a three day work week. Unless magical mermaids decide to pay off all my student loans for me. That would be great. So no neurologist right now.

Opthomologist said I'm fine and don't need surgery. Didn't want it anyway so we're on the same page. Plus I didn't like her.

Appeal for full genome sequencing letter will go out soon. My husband wrote the perfect letter and I hope it will work. My Metabolic Myopathy Geneticist is holding tight. I'm hoping that will illuminate some mutation that will be helpful to know about.

September 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Break out in a sweat if I "do too much" muscle wise. The bummer is I don't yet know what that "too much" is and it also feels like a moving target.
• Loss of muscle strength and energy through the day
• Pain in feet unrelated to activity
• General body pain (worse now, but could be from going down on the Cymbalta)
• Ptosis of both eyelids, right's a little worse (stabilized)
• Occasional dry mouth (this seems to only happen if I'm getting sick or having an "episode")
• Occasional choking (including that time recently that it was almost serious!)
  
  What's BETTER since June:
• Muscle cramps, spasms and twitches are being controlled with my Baclofen 20mg
• Occasional headaches, constipation and urination delay is all much better. This could also be from the Baclofen? Would make sense given it's a muscle relaxer.
• Feel closer to being able to have an orgasm (Yay! Again, could be from the Baclofen)
  
  
  
  I'm overjoyed that there has been some improvement. Moment to moment my life is still very challenging. "What can I do? Am I sure I can do that? I feel tired but can't rest right now. Push through girl! Pain. Pain. Pain. Stretch. Rest. Eat good foods. I miss Taco Bell. Stop doing things that make you feel worse! You need to rest. Don't forget to play. Time for work."
  
  And the next person who tells me to "Get well soon" might get a throat punch.