Kansas City Dystonia & Parkinson’s Support

19/08/2026

I COUNTED 31 INJECTIONS, 200 UNITS. THE WORST ARE IN THE EYELIDS AND WHERE YOU SCRUNCH YOUR NOSE. BRINGS TEARS TO MY EYES EVERY. SINGLE. TIME.
Well, it's been 90 days, and today is my botox appointment with my neurologist/movement disorder specialist. I will count how many injections I get in my eyelids, around my eyes, on both sides of my nose, my jaws, neck and left shoulder. I will briefly have a little bit of time to talk about concerns or changes as well. It's siri uncomfortable and several are very painful, but I actually look forward to this. Because within a week, everything will be taken down a notch. Although just in my face and shoulder does actually help some of my dystonia and involuntary movements in my upper body.

17/08/2026

Fun stuff. Let's add dystonias to it 😬

08/08/2026

... All but the cold intolerance, complete opposite for me 🔥.

07/08/2026

Hashimoto's and autoimmune disease. This is funny but it is true.

01/08/2026

Here's the little follow-up on my elbow surgery that was on July 15th. Yesterday I went and had everything removed and the stitches cut out. I can shower and get it wet, and I have a lot more mobility with my arm.But he said to give it about six weeks to get stronger or a little more stable, but i'm on the road to recovery. I have missed a couple weeks of physical therapy because of surgery, but I'm actually excited to get back at it for the ongoing support with my dystonias and balance.

26/07/2026

Well, I had been a little down since my elbow surgery and it's been very painful, which, of course, triggers my dystonias, so I made a conscious decision to do something for me yesterday. Since I cannot bend my right arm enough to do my hair, I made an appointment with my longtime hairdresser and friend Bettina Mendez Delfin. And because I have a hard time washing my own hair, that alone was a treat, but she also trimmed my hair, colored my grays, and waxed my brows. It's amazing how a little bit of pampering can make you feel a little bit better.❤️ Follow-up with my orthopedic surgeon on the 30th this week. Hope everything is healing well. I've never had this much pain this long after a surgery. 🤞🏼

23/07/2026

Good morning, everyone I haven't been on here much. Yesterday was 1 week since my elbow surgery. I have had multiple surgeries from falling down. I've always healed well and quickly. The surgery was different. I don't know exactly why. Maybe it was a little bit more invasive because it included cutting bone. But I've already had to call in for stronger pain pills and have only left the house once, and that was to drive through CVS. I'd like to think I have a pretty strong tolerance to pain, but wow, this is different. I follow-up with my orthopedic surgeon on the 30th next week. And I really can't wait for him to change the bandage. Take a peek under all of this wrap and
I hope that each day. It starts feeling better and better. It makes it very hard to leave the house when you feel like you can't even properly get ready. And I won't lowered my standards to go out in public looking too awful.
So the positive… drinking tons of water, working on my skincare, and sleeping a lot more than I should be. Thank you to everyone who has reached out. And I definitely could not do this without family and friends, it's also a big reminder that living alone is usually great, but in times like this, it really sucks.

17/07/2026

Ugh, it hurts so bad!

16/07/2026

16/07/2026

Surgery day for the broken elbow. My surgeon, removed the fractured radial head.