It’s been about 6 months since I last updated the blog so I figure it’s time to throw out a little update. Although, full disclosure, this probably won’t be so “little”. Lol!
I’ve continued with physical therapy but my stroke rehab doc had me switch to occupational therapy at Frazier Rehab in downtown Louisville. It’s about 45 minutes from my house, so not so convenient, but I can tell some small improvements are occurring. Nothing overly exciting but teeny tiny changes.
My stroke rehab doctor, Dr. G, also sent me to see one of his partners, Dr. Shaw, in his office to get an evaluation for a Myomo brace. It’s a huge arm brace that helps work your arm more normally to (hopefully) regain some movement. It costs $85,000 (yikes!!) so I fully expect insurance will deny it. And we’ll appeal. It will be a long process but eventually someday I hope it will be approved. I’m also looking into another option, Bioness. Myomo is for the full arm and Bioness is for just the forearm and works the hand with opening and closing. Bioness is about $8,500. I have an e-stim unit that does something similar to the Bioness. Not the same thing exactly, but I can use it until it gets approved.
When I saw Dr. Shaw this week he said I needed surgery on my affected (right) arm/hand and leg/foot. The surgery is called tendon lengthening and tendon splitting. I should know better than to do research on Google, but I did it anyway. Holy hell.
I can opt to have both surgeries done at the same time or separately. The leg/foot surgery will require me to be in a to-the-knee cast for 3 months, then a boot (and not the fashionable kind either) for 3 months, then an AFO (ankle-foot orthotic). I have an AFO and I hate it – it makes my right shoe so tight and uncomfortable! But Dr. Shaw did say that the surgery should allow my foot to place in the correct position, and help with my knee and hip snapping out of place. I have to think about whether I want to do the lower surgery earlier in the year with the arm, or wait until after Taylor’s wedding (June 2020). Logistics…
But, the end result is the loosen up my hand and foot to hopefully not need Botox in the future (for clarity, this is not cosmetic Botox. I’d still be willing to go for that in my forehead! I haven’t had Botox in other that my arm and leg, but I’m not opposed to it someday when life has caught up with my face.). I will be getting Botox in my forearm and leg and foot on Tuesday. I always ask Dr. G if he can bag up any leftover Botox for me to take home so I can take care of those pesky lines in my forehead, but he hasn’t done it yet.
So the plan is to get one more round of Botox Tuesday and that should last 3 months (but in reality, it only lasts about 2 months in me). Then schedule the tendon lengthening and splitting for after the first of the year. (Pretty sure I’ll meet my deductible and out of pocket in January). The Botox needs to be worn off completely before surgery is scheduled because they need the muscles active to do the surgery.
Therapy will continue at Frazier Rehab with OT. I have only 5 visits remaining in this year so surgery would have to wait until next year anyway when the therapy visits start over because you have to have OT starting the day after the surgery. Damn plan maximums!
In other news, in July I started something that has been AMAZING! I started Looping with my Dexcom G5 and Omnipod insulin pump. If you are t1d and want to know more about it, you should join the Looped Facebook group. Full disclosure: it is DIY, NOT FDA approved, and you take on the full responsibility and liability. It takes some work and patience to sent it all up, but it is doable. But it has been amazing for me. I am sleeping all night every night. My A1C has dropped to 5.8%, and its never been that low in almost 36 years being t1d. I am part of the #wearenotwaiting community and I can’t imagine life without it.
Also, October is Breast Cancer Awareness month. So let me take this opportunity to remind everyone to perform monthly self exams and get mammograms yearly. Don’t skip on this. You have to take care of you so you can take care of everyone else in your life.
xo,
Jenn
Jennifer Claspill 