Trick-or-Treat Pleurisy

Princesses, Witches, Angels, Goblins, Faeries, Charcot-Marie-Tooth, Pirates--wait a minute, where does CMT fit in there? Oh, right, it doesn't.

This is my first year not trick-or-treating. I am in high school though, so I haven't had to give anyone a reason for not going (the real reason). When I went last year I had a lot of trouble getting up the steps to the doors (pretty much all of the houses here have at least one step up to them), that was when my CMT was really starting to show itself. This year I just don't feel it's worth it. Steps are harder for me than they were a year ago, and I don't really need all of that candy anyway! So we're staying in, but we still carved a pumpkin, made cupcakes, and the pumpkin seeds are cooking in the oven.

But that's not what the real topic of this post is about!

In my last post I mentioned how I'd had stabbing chest pains. I still have those chest pains days later--luckily most of the time they're bearable.

I've found that it is very easy to just blame CMT for my aclectic health problems. Let's face it, CMT can cause all kinds of different problems! Does this mean I should blame my need for glasses on my CMT? (I've heard CMT could possibly cause vision and hearing impairment) I could, but I could also admit that bad vision runs through the CMT-less side of my family. My point is, it may be that CMT isn't causing some of your problems, and I'd recommend looking into other possible causes, because those might have possible treatments.

I mentioned the chest pains to one of my science teachers (who I've been talking to about CMT stuff), and after asking some questions she concluded that I probably have Pleurisy.

From wikipedia:
"Pleurisy, also known as pleuritis, is an inflammation of the pleura, the lining of the pleural cavity surrounding the lungs, which can cause painful respiration and other symptoms. Pleurisy can be generated by a variety of infectious and non-infectious causes."

Pleurisy can develope after a respiratory illness, and I did have a bad cold quite recently. So I thought that was an interesting bit of information, as I'd never actually heard of Pleurisy before, so I just thought I'd share that with y'all!

Happy Halloween!

Hard Times

As I was walking over to a building I saw my reflection in one of its many windows. I gave myself a funny look. Who was this withered looking girl hobbling down the sidewalk? Surely this girl couldn’t be me. I tried to shake the image from my head and kept on walking, refusing to look at any more windows.

Finally I made it into the building. I was there to see a Shakespeare play (Julius Caesar) with a bunch of other people from my school. I soon located my group and waited to be led into the theater. Suddenly I was reminded…stairs. Theaters tend to have stairs! I maneuvered my way over to one of the head teachers (all of the school faculty know about my CMT). I told him that I was expecting stairs in the theater and asked him to make sure I survived them. He was very kind and happy to oblige, and explained that you had to go downstairs to get into the theater. This was great news! Going down stairs is so much easier! For some reason at the time my brain didn’t make the connection that this meant I’d have to go back up the stairs when the play was over.

The play finished. I’d enjoyed it. Then the realization of the “stair-situation” struck. Uh-oh. I was only four rows from the bottom too. As a man called out the schools one by one to leave the theater, I scanned my eyes up the stairs; the stairs weren’t too high, but there were a lot of them. Then I heard my school’s name called. I made it up a few stairs and then my legs just quit--I couldn’t do it. Luckily one of my school’s head faculty saw my dilemma and came over to assist me. I don’t know what I would have done without her, maybe I would have had to crawl up the stairs. She let me lean on her and almost pulled me up the stairs one by one--it was still a long trek, and I swear I heard some guys a bit of a way behind us saying “MOOOVE!”. She said I’m a real trooper.

So I made it through, but it was very emotionally and physically frustrating/stressful.

I cried myself to sleep last night. I’m scared. My walking is continually getting worse, and to be honest, I worry about how much longer I’ll be able to walk at all “reliably”. Today I couldn’t walk without pain. I feel like I’m just watching my body disintegrate more and more each day. Today I also got some excruciating chest pains, that lasted well over an hour. They started in several places around my chest/upper stomach, and then settled in the middle of the top of my diaphragm. It felt like someone was stabbing me with a knife over and over, and some trouble breathing came with it. I honestly don’t know what it was from. It could be CMT, as I’ve heard several times that CMT can cause breathing difficulties and chest pain. Either way, they worry me.

I’m starting to look for a really good CMT doctor. If anyone knows of one, please let me know. I’m looking for someone who will really work with me, and knows what they’re talking about. I’ll be doing a lot of research on doctors and I’ll post any interesting results I find.

The Art of the Fall

I watched shoes walking past me and car wheels zooming by; well, I didn’t want my body to lie here sprawled out on the pavement forever. It was time to collect myself, dust off, and find some way to stand up.

Falls. Falling is something common to the CMT life. “Everyone falls sometimes”--maybe so, but probably not quite so often. “You know,” my father said one day trying to get me to consider braces, “some people go a decade or more without ever falling.” I didn’t believe him. It was simply an idea out of the realm of my experience. I can honestly say that I don’t fall as often as I used to; however when I proudly proclaimed this to my father, he correctly pointed out that I don’t walk nearly as much as I used to either!
I’ve been told to learn to “laugh at myself” when I fall--this seems to be common advice, but I just can’t think of me falling as funny (at least not at the time), or even pretend to. I am guessing the people with the “laugh at yourself” advice never had a problem with falling. Or, it might be easier to laugh at an occasional fall if I didn’t know it was connected to my CMT.

Falls can be very difficult, embarrassing, and they tend to take me by surprise. Now, I trip all the time, but my body has learned to use everything in its power to keep me vertical (this still tends to end up in a lot of twisted ankles). Occasionally, though, there is no hope in staying upright, and I simply have to let nature take its course. It’s times like these that I have learned to turn falling into an art form.

Here’s one of my favourite stories to illustrate:

I was walking down one of the halls at school. It’s almost the end of the day and I’d aced that math quiz. I was feelin’ pretty good about myself--“Yeah, I’m smooth and life is good.” Then, suddenly, my day took a turn. As I was gliding down the halls I felt myself starting to trip and lose my balance (from some unknown reason, since there really wasn‘t anything I was tripping over, except the floor) In that split second I realized that there was no hope in preventing this fall, but I could try to not make a big scene out of it, I could practice the art of the fall and, hopefully, try to keep my self-respect intact. Instead of going face first, I started to fold my legs in, as though I just decided at that particular moment to sit cross-legged in the middle of the hallway. Slowly I drifted down, falling, but artfully so into a perfectly formal cross-legged position. As luck would have it, this occurred directly in front of my locker! To complete the performance I grabbed my backpack and pretended to look for something in it. Performance complete. Self-respect in tact. After several minutes I realized it was time to work on getting up. The art of the stand is as complicated, perhaps even more so, than the art of the fall. I scanned the hallway for something of assistance. Nothing. I peeked around into the classroom next to me--only a couple people were still in there and they were busy talking. I quickly crawled in there when no one was looking (or so I hoped!) and used a chair to pull myself up. Self-respect? Maybe. Feeling smooth and good? Eh, maybe not so much. But hey, everyone falls, but only those of us who fall regularly get the opportunity to turn it into an art.

Lions and tigers and doctors! Oh my!

A couple of months ago, because of how poorly I was feeling, I decided to give going to doctors another shot. I chose one whom I had gone to when I was younger, about my chronic stomach pains. He didn't really help at all, except when he had me get IVs of B12 (for energy) once a week. However, apparently he's very knowlegeable, and now that I know about my CMT it seemed like it was time to give him another shot.

So when I first saw him again, we went over my medical history and current problems. I told him I have CMT and he said he "knew what that was," but insisted there had to be something else going on in me (like a virus), because CMT couldn't cause such severe problems (fatigue in particular). I completely disagree with this statement. After all my research I've found that the range of severity in CMT is enormous. I see no reason that it couldn't easily be giving me the problems I have. However, I didn't verbally chastise the doctor, and instead decided to do the blood tests. I did want to look into an auto immune problem, since it's strange how my CMT suddenly acted up when I got sick at eight (see my post "My Story"). I find going to doctors about CMT very difficult, for these reasons: Doctors who are not specialists in this area know little to nothing about CMT, and doctors who are specialists (at least the ones I've been to) only offer me a prescription for a pill or a number to get braces fitted. I want answers! I want to feel like I used to!

Back to my story...
Yesterday I went to this doctor again to discuss my test results. First he told me that he checked my blood cell counts, and they're all in the normal range, but some (T helper cells were one) are on the low side. Basically, I have a weakened immune system, and I get sick easily. He offered no real solution. The other thing he found is that I'm very low in DHEA (a hormone). Why am I low in DHEA? Because of "adrenal gland stress," which can come from either physical or emotional stress. (The adrenal gland makes DHEA.) He said that I have about 1/3 of the amount I should, and that I'm very low for my age. So what does this cause? 1) Fatigue. 2) It makes it so that I don't deal with stress well. I can't handle stress, and I'm very easily stressed out. He said that if we fixed this, "things just won't bug you as much." Sounds nice!

So he's going to give me a prescription for DHEA. This still doesn't help my CMT problems, but I'm thinking that having more energy would definitely make life easier, and as I've said before, stress is very bad for CMT, so.... wish me luck!