Another doctor’s visit – this one for rehabilitation. Here’s a funny to start. Tom’s dad had to go into physical rehab a few years ago in FL and when he rang to check on him, they connected him with drug and alcohol rehab. So, mine is for physical evaluation. We were waffling about going as it was close to rush hour in NYC bound traffic and over 30 miles from the house.
One of the challenges confronting dealing with this condition is that the onus is on the patient to discover and coordinate care and options.
Initially, my neurologist never suggested a brace. I kept on falling. However, I am used to falling and as a rule do what I have been told are very graceful ones. Sometimes, I just crumple. I was going through a stage where I was falling a lot and heavily on my knees. Our solution: Harbor Freight for kneepads. Uh, ugly and unwieldly so a friend referred me to an orthopedist she had seen for carpal tunnel. My knees hurt and I thought I had done damage. He wrote a scrip for the first brace. It was filled by a little old man with hair plugs. He told me I was lucky as I would soon have them on both my arms and legs. When I went for the fitting, I swore he used a hair dryer to mold it to my leg. I threw it in the trunk of the car and basically didn’t use it for about a year. It was white plastic and covered my calf. I used to crack up my physical therapist by saying it was a great shoe horn and helped me lift my leg into and out of the car. I mainly used it as a visual cue and for some support walking and climbing stairs in Grand Central, Time Square and Penn Station. I didn’t wear it in the office but had nice flats and kitten heels. The spectral leg, as I prefer to call it, could only be worn with lace up shoes. I am known for not wearing sneakers. I was brought up to believe that they are acceptable for the gym, only. I was never one of those women you would see walking in Manhattan in a suit and sneakers.
When things finally deteriorated and I started wearing the spectral leg full time, the ugly tie shoes weren’t happening. I spoke to the neurologist who gave me a scrip for a new one. This one was to go completely under my foot and be less obtrusive than the original. It would let me wear different shoes, too. My neurologist has always understood that looking good is important in helping me feel good.
The new spectral leg did not have shoe horn capabilities. I can’t usually put it on myself. As is my usual habit, I really didn’t use it for months. Big problem when I did, sometimes, after just an hour my foot started to burn. Other times, I could go for a few hours. The pain was incredible. Very problematic when I had to drive as my nerves would then cause the foot to jerk. The GP said it was in my mind and I should talk to the neurologist. The neurologist looked at me as if I were crazy and said why would it be neurologic. Finally, finally an ugly blood blister showed. I’ll spare you the disgusting pictures.
New insurance, podiatrist. He says it’s the spectral leg.
Back to neurologist. I show her the pix. She recommends a physical rehab doctor. Ha, my insurance doesn’t cover him. We go on a quest to find someone who is on my insurance and can treat my issue. As this is going on, my walking and mobility are deteriorating. I am hyperextending my leg. When I walk, I look sort of like Quasimodo and Igor.
We find a doctor, who is covered, who works with feet, is local and has available appointments. He was honest enough to say he can’t help me. However, his take is that the condition causes my nerves to flare and offers me drugs! And a referral to today’s doctor.
This is the first time, since the whole thing started that someone really evaluated the way I walk and move. How come this took nearly 10 years. No looking back but maybe, just maybe I could be in a different place now?
I explained how I don’t wear spectral leg in house. He admired my seasonal cane. We discussed how my neurologist and physical therapist suggested a walker. He concurs but calls it a rollator, He suggests it can be available in pink with a seat. Tom quickly vetoes him on that before I can.
Next, yes a new spectral leg, an uglier one. It will stabilize my knee and hips. Some of me is still strong but my abductors are very weak. He said watching me walk with my hyper extended knee hurt him. If I don’t take care of it, I can become arthritic and the knee much worse. I get that. This new spectral leg is going to have major knee support and more of a back. He says my little booties won’t work. I’ll need sneakers or orthopedic shoes. NOT!! NOT!! I will not do ugly. He did suggest a shoe store and those shoes are UGLY and a few hundred dollars.
He does agree physical therapy and the gym are very important and will help. Of course, insurance won’t cover enough sessions. And I have to wear it from when I wake up. I almot never wear it in the house. And almost never use a cane, either.
I am beyond upset. I haven’t exercised enough. Vicious cycle – I can’t go to the gym so I get weaker.
This doctor, as does my neurologist, believes I can regain and retain muscle. So Plan B – back to gym as soon as I can with existing walker, seasonal cane and spectral leg. DO NOT THROW OUT existing ugly shoes. DO become fanatic about clean eating/auto-immune diet. This is the kick in the pants I need to commit. Ugly inspires