My hairdresser's salon neighbor commented that she liked my cane and asked me why I used it. It's not often that a complete stranger asks you such a loaded question. I think a lot of people would tend to keep the assorted privacies of their lives out of the ether so I was a little surprised to have to relate my knowledge and understanding to someone else. Somewhere in the flow of the conversation I realize that:
- I am dealing with the situation pretty rationally. I have an emotional break once every few weeks. It usually consists of feeling very blah for a couple of days and then unloading on Rachel. She loves me and listens to me and supports me in amazing ways.
- As frustrating as this all is, I have remained relatively upbeat about being in limbo for almost seven months. I was reading over my neuro's shoulder at our last visit and spotted, "Lee is a pleasant 32 year old male." I don't see the point of getting worked up in front of your health professionals. They are the authority on the situation at hand and I am not credentialed enough to argue anything aside from their bedside manner.
I'm feeling pretty excited about the fact that in the month of September...I don't have any doctor appointments to keep! Yup, today was the last interaction I will have with any health care professionals for six weeks. But of course, it was somewhat eventful. I had an MRI scheduled this morning at 7:00am so I woke up at 5am and was out the door at 6am. My neuro scheduled my MRI in Bellaire when I have a facility much closer to the house, but if I wanted to have this MRI sometime this month I was going to have to drive a bit further. For those geeks in the house, this video is super awesome and explains the technology. They totally spun my hydrogen!
I pulled up to the Memorial Hermann Imaging Facility and it was so early the main entrance wasn't open quite yet. In the process of going around to the side of the building I almost broke my left foot again! I was trying to walk on this small sidewalk that led from the entrance to a side door and my left foot stepped halfway onto the lawn and my ankle turned out on itself. I really can't walk on non-pavement without significantly increasing the chance of injury and the idea of walking on a sandy beach is pretty far from my mind. Stability is key for me at this point.
checking my lumbar spine for spinal stenosis. Spinal column narrowing contributes to pinched nerves and pinched nerves can lead to muscle damage per my doctors. The 7.6.11 MRI came back with "normal wear and tear" but nothing that would cause my muscle wasting. I'm starting to sound like the Chevy Truck that is going to be driven into the ground before it's sold off.
After that I did a Google Map search for a Quest Diagnostics for the next round of genetic testing. I hit the turnaround and immediately pulled into a Quest. Gotta love medical complexes!
As I mentioned previously, we are testing for some pretty serious stuff that my neuro doesn't want us to worry about being I'm not presenting enough of the symptoms to suggest a strong tie to a diagnosis. All things considered, I think they know they are kinda running out of options. Kennedy's Disease looks pretty horrible and this page is so ominous it's laughable. If I did have this, it would suck and I pray for those that do live with this or care for someone who does. We are also testing for Lou Gehrig's Disease. As my Mom said, "You would be dead by now if you had that." For the length of time I've been noticing this decline in muscle strength I probably wouldn't have made it into my 30's and would have had it as early as 24 years old; the average life expectancy after diagnosis is 3-5 years.
Again I arrived a few minutes before they opened but when they finally let me in, I sat down for only a minute before I was taken back. Athena Diagnostics UPS'ed a blood draw kit to the house and told me to head down to any Quest for the blood letting. My phlebotomist opened up the kit and read some of the paperwork and proceeded to butterfly needle me to fill up her little purple-topped tubes. She was a little confused on how she was supposed to write all the information they were requesting on such a small surface. It was only AFTER she finished up the process that she looked inside the styrofoam casing and found the tubes Athena sent for the specimens - much larger and with plenty of room for writing! Five minutes later she called me "very pleasant" while apologizing for having to do the entire draw all over again.
I then drove around the great city of Houston requesting my patient records for the last three years. About 120 miles later I finally made it home to begin my job that actually pays the bills. At 5:02pm I received an email from Dynamic Prosthetics and Orthotics. I had contacted them in reference to the Dynamic Bracing Solution carbon-fiber braces I mentioned in the last blog post. The representative from DPO is the only person in Houston that is qualified to fit someone for them and although there are many DPO locations he only works in the Med Center. That will happen sometime in October hopefully and the appointment lasts three hours.
I'm nowhere near being able to afford them, but getting the consultation will set the gears in motion and maybe I can get them by this time next year. My condition sometimes seems to be progressing quickly; those weeks are marked by of a lot of pain and restless sleep. Lately it seems to have slowed in the slightest; this week has had me feeling close to 85% which is pretty good!
At the end of this month I have the pleasure of presenting at a national conference in my career field. The convention center is close to a mile long and my hotel is a block away and on the far end of where our meeting rooms are. I'll get earlier starts and have to change my pain management schedule to try and make the most of this visit. In the evening, I could easily require a cab for the mile and a block distance separating me from the NOLA Conference Center and my hotel room...who wants to carry me ;-)
-Lee
Again I arrived a few minutes before they opened but when they finally let me in, I sat down for only a minute before I was taken back. Athena Diagnostics UPS'ed a blood draw kit to the house and told me to head down to any Quest for the blood letting. My phlebotomist opened up the kit and read some of the paperwork and proceeded to butterfly needle me to fill up her little purple-topped tubes. She was a little confused on how she was supposed to write all the information they were requesting on such a small surface. It was only AFTER she finished up the process that she looked inside the styrofoam casing and found the tubes Athena sent for the specimens - much larger and with plenty of room for writing! Five minutes later she called me "very pleasant" while apologizing for having to do the entire draw all over again.
I then drove around the great city of Houston requesting my patient records for the last three years. About 120 miles later I finally made it home to begin my job that actually pays the bills. At 5:02pm I received an email from Dynamic Prosthetics and Orthotics. I had contacted them in reference to the Dynamic Bracing Solution carbon-fiber braces I mentioned in the last blog post. The representative from DPO is the only person in Houston that is qualified to fit someone for them and although there are many DPO locations he only works in the Med Center. That will happen sometime in October hopefully and the appointment lasts three hours.
I'm nowhere near being able to afford them, but getting the consultation will set the gears in motion and maybe I can get them by this time next year. My condition sometimes seems to be progressing quickly; those weeks are marked by of a lot of pain and restless sleep. Lately it seems to have slowed in the slightest; this week has had me feeling close to 85% which is pretty good!
At the end of this month I have the pleasure of presenting at a national conference in my career field. The convention center is close to a mile long and my hotel is a block away and on the far end of where our meeting rooms are. I'll get earlier starts and have to change my pain management schedule to try and make the most of this visit. In the evening, I could easily require a cab for the mile and a block distance separating me from the NOLA Conference Center and my hotel room...who wants to carry me ;-)
-Lee
Dude, just House it up in NOLA. Segway rental.
ReplyDelete"So relax and have a good exam!" Ha! Only if it isn't 2 hours to look at your pelvis, hip, and lower back. And no kiddies, they are not all the same thing. My leg was burning so bad we had to stop for a break. In addition to that wonderful reminder of why I was there I got claustrophobic because they had me pushed all the way in up to my neck!
ReplyDeleteI agree with Holly...Segway rental in NOLA!
Lee if more people had the same proactive, positive attitude that you have our world would be a better place. It's the same positive energy that I remember seeing in the children at St Jude's when I worked with ESA. The reality check you speak of is a two way street for those of us who read your blog. Glad that you get a break from the poking around and good luck with your presentation!
ReplyDelete