Chuck, you may remember, was a new edition to the family in November shortly after Rae and I were married. He's got a lot of energy and sadly, the other animals were not interested in playing with him. I saw Ruby on the TV and thought, "she's little and they can grow up together." It's been a fun transition to the family and Ruby has definitely made herself at home! I've never had a puppy and they are almost as insane as kittens. Rubes is about five months old and Chuck just turned a year old. They grow so quickly '-) Before you know, they will be moving out on their own.
Well, onto business. It's been a couple of months since I started using my new legs and life is very different now. It's great to be able to go to the store and stand in line and be able to stand in one place. You wouldn't think much of it but when you use a cane and you are limited to one useful hand, you can't even wait in line with a magazine. How else am I going to read about Kim Kardashian's stupid BIG BUTT? I couldn't. My quality of life is THAT much better now.
Rachel was away at work and I needed to go to the post office. Knowing we have one in the neighborhood, I filled up a water bottle and put on my Beats and headed out. "Today's display of elated walking brought to you by over-zealous determination." I made it to the post office and the Nike lady on my iPhone told me, "1.28 miles." After that, being around lunch time I decided to keep walking for lunch. This was when the weather in Houston made its first turn into the blisteringly hot weather we are known for in the summer...mind you it was only April!!!
As I'm headed home I notice that my feet aren't feeling too great. As with any good thing, there are trade-offs. The trade-off to having such great stability and energy return with the DBS brace is the fact that they honestly aren't the most comfortable device to wear. There are inevitably "hot spots" that occur due to more friction than your feet are accustomed to taking. These can be alleviated through quick adjustments from your orthotists or modifying your shoes or socks. Well, 2.5 miles into this walk, neither Jason Jennings nor a sock or shoe selection was available to me. The pain got so bad that I had to stop walking to take an evaluation of what was going on inside my kicks. As you can see from the picture above, the blisters were big and bad. On the outside of each heel was a two inch blister forming from some intense friction. I put on my "power songs" from As I Lay Dying and powered home where I would begin a two week period of not wearing my DBS braces. I have since learned that cotton isn't the most forgiving material inside a shoe and picked up a few varieties of acrylic socks. I powder up my feet to look like the Abominable Snowman before I gear up and I try to leave the braces on for about 20 minutes before leaving the house. Some days, my feet just don't want to be in them.
There has been unnecessary drama surrounding my asking for accommodations. I was at a high school for an event about a month ago and after learning that we would have to climb three flights of stairs to arrive at our location, I asked for access to an elevator. While climbing stairs isn't impossible, it is awkward at best. The trip up wasn't what I was worried about.
Coming down is VERY awkward and THAT was the trip I was hoping to be eased by our mechanical wonder. Without an articulated ankle joint, the DBS effectively immobilizes your ankle in favor of stability. Although walking down stairs is not impossible, it does require faith of sorts. As you place your foot halfway off the step at the midpoint of your shoe, you continue moving forward - rocking through forward motion. At this point, your trailing foot is swinging down to step onto the next surface. If you can do this without the aid of handrails you are a badass, my friend.
Like most high schools, elevator access is restricted to key holders and although my colleague on the high school side did not have a key for the ride up...I was SURE a key could be located for the ride down. They only had TWO HOURS to make it happen. After asking four times over two hours for access to the elevator I was not accommodated. With the help of a friend watching after me for support, I made it down three flights of stairs...with wobbly handrails, mind you.
A month later after the emotionality of the situation had left me, I wrote an email to the Principal and Lead Counselor of the high school. I expressed my disappointment in their staff for their inability to do something as simple as locate a key to an elevator when given advanced notice. Examples of people's disregard for those with disabilities are well-displayed to me now. Just like when I bought my first Volkswagen, I started to see them on the road ALL THE TIME! Now that I look for handicapped parking spaces, I see that people park in them ALL THE TIME, without placards or plates. And sometimes, even with placards or plates - they are still idiots!! My most recent trip to a neighborhood store had me passing by a woman in the passenger seat of an SUV waiting for her able-bodied husband who was walking out of the store with two large bags of dog food. I'll assume he wasn't handicapped because they weren't using any kind of identification to park in the spot. Maybe I'm just being a whiny b*tch, but ya know....I wish I wasn't uncomfortable all the time. I wish I could take long walks without feeling like I need to make sure I should take some extra pain meds with me, just in case I end up in extra pain.
You may be asking why I've edited the name of the physician out of the picture when I'm usually forthcoming with such information? Well, my first visit to the man was eye-opening. Who cares that House just wrapped the series this week on TV, I'm seeing the real-world incarnation of him a couple of times a month at this point. He is brash, short and apparently VERY sure of himself. So sure of himself that without having my ENTIRE history is positive of a diagnosis of SMA (spinal muscular atrophy - look it up, I would have the most mild type of it, but it still sucks pretty badly). He ordered up a full workup and I see him again next week. He was rude and belittled his residents in front of us on the first visit. On my second visit to undergo my third EMG study (oh yeah, forgot about those tests as well), he was pulling adhesive pads off my skin and placing needles in and out of my muscles so quickly you would think he was 2 hours late to stare at his awesomeness in the mirror.
If you can't tell...it took a while, but I'm losing my patience with doctors. One thing my wife and I never lost patience with was for our fortunes to turn around. Rachel changed careers about three years ago. With degrees in interior design, her work situation took a turn for the worse when the housing market tanked. Design was a luxury item and those with the ability to secure the luxury were typically rude, mean and sucky people. This included her employers. The last straw was being moved away from Houston to Austin and being promised more money and leadership roles. The money never showed and there isn't one leader that works for that despicable company that will remain nameless. Down on her luck, but looking forward to being together again she ducked her pride and came back to Houston. Financially, things have been very tough. Changing careers is not something I would wish on anyone, much less understand how it feels to be FORCED to make that change. For her own sanity she took it in stride. In an effort to keep artistry, creativity and design in the mix she took an entry level position at a very recognizable beauty product store. The woman who used to design interiors for homes was now a cashier. She also made a push for her personalized dog/cat accessories and bedding line on Etsy.
With clear leadership ability, she wasn't a cashier long. In just a few months' time she was an operations manager for this beauty chain and things were looking up. By the end of the year she was managing a cosmetics counter at another department store with a staff of nearly 10 ladies, albeit crazy ladies. After doing this for a while she came to some realizations. Not only was she great at it, she was forming some clearly defined goals for herself in this industry. She began to recognize products that she liked to use for herself, in addition to enjoying showing others how to use them to beautify not only their outward appearance, but their self-esteem.
She applied to work as a free-lance make up artist for Too Faced Cosmetics and another unrelated skincare line. The pay was great, but the hours weren't. This was only temporary, she had a goal that within a few years she would be an account executive for them. Too Faced is an inclusive, home-grown company. They are inclusive of the single working man and woman and they are inclusive of the family. They are inclusive of the gays, the straights, the non-tattooed and the inked. In short, they are awesome.
Rachel made herself invaluable to her boss and quickly exemplified her level of product knowledge, project management and personnel management skills. She carved out her own little niche in Houston and displayed what she could do in College Station. She did so with so much poise and prowess that Too Faced Cosmetics created an entirely new position for her to strive to attain. And she did.
After three years, a few jobs for a few employers and eventually four interviews for a job that was created for a leader just like her, she....is at a sales retreat on Laguna Beach, California. I couldn't be more proud.Things are looking up for us. Thanks for reading!
-Lee
We are about to start our journey with DBS :)
ReplyDeleteDillon who has CMT 1a or 4a which is also called Dejerine-Sottas is 8 1/2 years old and very excited to be getting his terminator legs. Our first appt is June 27 and than that long two week wait to get them. I was excited to see a blog about these new devices someone who wears these and let's us know the ups and downs.