I’m heading back to Lafayette, La, for my next appointment with my neurosurgeon. She’s the best in the state (far better than the local doctor with which I’ve dealt.) I call him Dr. NO as in, “There’s no way I’ll see him again. I’ve come up with other terms of endearment for him, but cannot say them here.
My current doctor has an eye for details and a blunt but truthful way of explaining things.
Two words that scare the $@#% out of me are, “permanent disability,” which she drove home repeatedly during last month’s visit.
She doesn’t pull any punches. That’s one of the things I like about her. (Still doesn’t mean I like having a permanent disability.
I still hold on to hope, but only because of the support and loving encouragement I get from my dear friends and family.
I’m not going to name them, but if you’re reading this, you’re likely one of the few about which I’m talking. So, thank you. I love you.. More than you know. You see past my Feeling Twisty days and treat me as if I’m not tripping over my pretzelish-shaped body.
Today’s visit will include looking over images from my MRIs, specifically, the basal ganglia region.
I’ve tried reading the images, but can’t tell much from them. I do like this image, though,
I think I look like a species that The DOCTOR might come across during his travels through time and space.
I’ll keep you posted on what’s up next for me.
Again, thank you for your thoughts, prayers, and words of encouragement.
As I deal with dystonia and it’s alleged permanency, my thoughts and prayers are going to my Uncle Red and the whole Francis family. He has Parkinson’s Disease and is very near passing. I love you Uncle Red and your children.
So, to summarize: dystonia sucks, permanent disabilities suck, Parkinson’s Disease sucks, and saying goodbye to loved ones sucks.
But for the support I continually receive I would say my life sucks.
P.S. Please excuse any rambling and misspelled words. I’m exhausted and I’m not wearing my glasses.
I’m participating in a mud/obstacle run (limp/walk) this morning. I’m nervous! I haven’t done anything like this since the dystonia symptoms started appearing a few years ago.
I’m sitting in a hospital room as my mom sleeps. She was admitted earlier complaining of chest pains. Fortunately, the EKG results show she didn’t have a heart attack. That’s all we know right now. I’m glad I get to be here with her. As she often says, “We’re making memories.” I’m grateful for this time to spend with her.
My dad is out of town but will be back soon. He loves mom so much. I know it must be driving him crazy not being here yet. I love you Dad and Mom!
I had my first visit with my new doctor today. This is the first time I’ve left a visit feeling more hopeful than I ever have after a doctor’s appointment. I’ve been to specialists in Houston and New Orleans. I didn’t expect to find such a caring neurosurgeon in Lafayette.
I haven’t written in a while. I haven’t wanted to because I haven’t been in the mood to say anything about dystonia. Today, I want to write, but I’m not going to mention dystonia. Well, not again.
Today I want to focus on gratitude. I stepped out of the riptide of my life and got a glimpse at it from the outside. I saw so many wonderful things for which I am grateful, but I’m focusing on a few specific ones today:
Watching two of my sons play soccer and football this morning.
Visiting with my family, including my parents, my Uncle Louis, Aunt Ruthy, a couple cousins, and my 83 year old Aunt Betty. I had my camera but forgot to take a group photo that I had planned to.
Seeing my oldest son, Chandler, becoming a responsible yet fun loving man.
Watching my daughter chilling out with my friends’ cat while we watched LSU football.
Reconnecting with friends from the past. Even though decades have gone by, they still mean so much to me. I doubt they realize how special they are to me. Their joyful spirits inspire me. Maybe they will catch on when they read this. 😊
So, to all of you in my life, LOVE & THANKS.
By the way, here are couple post-mirror-tumble photos.
I’ve been doing a lot of looking back at my life lately. Face planting against a tree and falling into a mirrored closet door will make you want to think about chances missed and regrets over decisions made in haste. The photo is my older brother and sister, my lil’ sister, and me. I love each one of them so much, but I’ve spent a good part of my life being rude and obnoxious to them. In spite of my coarse behavior, they still love me.
Dee Dee, Ronnie, Alisa, I love you. Thank you for never giving up on me.