April 15th…a date near or far?
Well, it’s official! Or, I guess I should say “half-official.”
April 15th is the tentative date for my first appointment at Cincinnati Children’s! *small sigh* I am
grateful that I can see them sooner than July (we were told at first that the EDS clinic is booked until July, but they have been trying to work things out which has been a challenge for sure), but April 15th is still over 2 months away and I’m not feeling any better.
So my neurologist is gonna try to be in touch with their physician priority line to get me in even sooner, but first I’m waiting to hear the names of the doctors I’ll be seeing as she needs names as well as the phone number.
Updates:
Head: My headaches have still been very bad. I have to use an ice pack every now and then again since pain meds don’t help. I’m very thankful for ice. :o)
Eye: My left drooping eyelid is still there, but sometimes people don’t even notice it which I’m very glad about!
Neck: I saw my spine dr. a few weeks ago and had flexion/extension x-rays of my cervical spine again. In addition to anterolisthesis (vertebrae slipping forwards onto each other), I now have retrolisthesis (vertebrae slipping backwards) also. On another note, my atlanto-axial instability is still mild thankfully, so I don’t have to see him till January.
Shoulders: My right shoulder is still pretty loose and my shoulder blade pops out often, so my physical therapist wants me to see him twice a week now. My left shoulder is starting to become a problem since it has to work more than my right..
Heart: Lately I’ve been experiencing a lot of chest pain. I’m not sure if it’s because my heart is always tachycardic (POTS issues) or if something else is going on. Praying that the EDS clinic will be able to find the answer.
Hip: Since my left leg muscles are weak, they’re not able to hold my hip securely, so I’m now having lots of aching pain/crunching/popping. It makes walking painful!
Feet: This week the CRPS pain in my feet has unfortunately been increasing, but the lumbar sympathetic block I had on Jan. 30th gave me about 2 weeks of less pain so that’s a praise!
I know I look “normal” on the outside, so I just wanted to give you a little picture of what’s going on inside my body.
Stay tuned for more Cincinnati news!
