Have I told you that I feel like I have a new lease on life? Well I do, especially before about 3 PM when I’m out of the house. My energy level is not up to where it used to be but I’m trying to be positive and hoping it will return soon. And, I’m off all the meds except for one that has no mind-altering side effects. Oh, I’ll just tell you. It makes my bladder work. Yup, I said it. If I said one tenth of what I was really thinking in this blog it might be slightly interesting/entertaining. But in the interest of being politically correct and polite I’ll try to tone it down a little even though I’m feeling more like a late night HBO monologue.
Right now I’m honestly thinking, “I’m almost 44, I have a 5 1/2 year old little girl that runs circles around me, I have a Zipper head, I haven’t had an adult beverage in 80 days, Japan is a pitiful mess and dealing with nuclear fall out, we are at war with Libya, and the Cleveland Park Train crashed and a child was killed and people were hurt. AND I can’t drive.” That’s it… It’s the end of the world as I knew it. “And Lord please be with all those people that need your love and support!”
Now all that said: Thank you, thank you, thank you to everyone that has helped me/us get through this. We could not have gotten this far without your help! First Pres. WPC Moms and staff have totally kept Grace in a very happy place - thank you for all the play dates! Friends from all around have kept David and me happy with dinners and treats. This is where I start crying again because I am so lucky and blessed.
Chiari, Tethered Cord, and Ehlers-Danlos Syndrome are not pleasant and I am incredibly fortunate to have had the surgery that I did by the neurosurgeon that I did. And, I have a fabulous Chiari support family many of whom are from Spartanburg and I didn’t know before I was diagnosed. They help me understand what is physically happening in my body and why I may have a particular feeling or pain or why I may need this or that. For instance: I have the pill that helps my bladder work because of the Tethered cord and the fact that I had a Foley catheter in for a week. Thanks Lee for helping me out with that J
I’ve starting having an external burning pain on my left, front, lower ribs, which I’m told by my new Chiari sister Katy, is my ribs/nerves. That will go on the list of questions for my follow up with Dr. H the end of April. Hopefully I won’t have to take medication for this. I hate taking medicine mostly because my grandmother to whom I referred earlier was all about holistic healing. I know holistic healing doesn’t always work and that your body may need medicine and surgery every now and then but who really knows what the cost/benefit of taking a drug really is? I can tolerate a little sunburn type sting on my ribs without medicine but if it gets to the point of inferno and I can’t wear clothes then that’s going to be an issue.
The muscle spasms surprise me occasionally but are nothing like they used to be. The incisions seem to be healing nicely but my neck incision stays irritated from the brace. What should I call this thing, a brace, a collar, a nuisance or a protector, and giver of relief? I have a real love/hate relationship with this thing.
It’s funny because when I’m out of the house people stare at me and while I walk by them of course I say, “Hello” but I think they are thinking, ‘Hey look at that girl with the neck brace on … she must have been in a wreck… lawsuit.” And then I think, “My nails look really nice and I’m feeling good today. Brain surgery”
Last week I spoke with the nurse at my neurosurgeons office and was given the “go ahead” to take off my neck brace for 3 hours at a time. However, I must still sleep in it, wear it in the car, and wear it during light exercise like walking. Driving is another issue. UGH! WHEN CAN I DRIVE? And, how long will I be in this thing? The purpose is for the rib graft to fuse to the vertebrae which may take a little while.
If you would like to know more about Arnold Chiari Malformation, Tethered Cord, Ehlers-Danlos Syndrome (EDS) and related issues please visit www.csfinfo.org
Thanks for reading and God Bless you and our great country! Leigh Anne
No comments:
Post a Comment