Month: October 2007

I’m going to Disney World!

EpcotEpcotEpcotI leave in a few hours for a week long trip to Walt Disney World in Orlando, Florida. I’m very excited to leave a huge chunk of reality behind.


Too bad I can’t leave the MD behind too – right? Disney is pretty good with making everything ADA compliant, but still the walking and the getting in and out of ride vehicles are challenging for me.


The MD is the only thing I can’t leave behind. So I’ve packed my supplements, my EMS machine and my disabled parking pass – see you when I get back.

It all started with headaches.

headacheheadacheheadache“Man these stairs are a bitch to climb – I’m just so out of shape!”



That’s what I thought. My realization that something was wrong headaches.jpgheadaches.jpgheadaches.jpgheadaches.jpgwith my body didn’t start with noticing the muscle deterioration, it started with headaches. I woke up one day with a terrible headache, so bad that I couldn’t go to work. It wasn’t a migraine from what I could tell even though I had never had one before. I wasn’t sensitive to light or anything, my head just ached. I stayed home but couldn’t get any rest because the pain in my head kept me from sleeping. I finally went to bed later that night but barely slept and woke up the next day feeling just as crappy. This went on for 2 week straight. That’s right I had a headache constantly for 2 weeks. Over the counter medications did nothing.


It was time to go see a doctor. Having had a childhood friend die of a brain tumor that started with headaches made me panic a bit about my situation. Having an HMO meant that I saw a different doctor every time I went in. Which resulted in a different theory every time I went in. They prescribed powerful pain killers and told me I had everything from caffeine withdraws to cluster and stress headaches. They even thought there might be a gas leak in my apartment or my place of employment. The gas company came out and gave us the all clear – a gas leak was ruled out as the culprit. They ran all sorts of neurological tests including the dreaded MRI and CAT scan. During all the testing, they finally found something that got rid of the pain for about a day and knocked me out at the same time which at least allowed me to rest while all this was going on., it was some sort of shot that would knock me out with in a matter of minutes – good stuff!


The good news was they ruled out brain cancer, the bad news was they still didn’t know what was wrong. The testing and referrals continued. In the meantime I grew weaker and weaker. Getting out of chairs became more difficult, climbing stairs became a chore. I chalked the weakness up to being out of shape and spending so much time in bed when they gave me my magic “headache go away shot” which was now being given to me about 3 times a week.


It wasn’t until I was in a routine visit with one of the specialists that he noticed I was having trouble getting out of the chair in the examine room that we were on the path to discovering the MD.


No one has ever been able to explain the headaches and now I get them about twice a year and they only last a few days. The best part is I can usually numb them by taking a few over the counter pills.


Maybe the headaches were some sort of chemical reaction to the changes going on in my muscles; maybe they were some sort of internal fire alarm that got my ass to the doctor. Whatever they were/are they started this journey and pop up every once and awhile to remind me how it all started with headaches.

This is just the begining (of the blog anyway)

journey.jpgTaking a page from Annette’s book (or blog to be precise) I’ve decided to start writing about my life with MD and how disease changes almost everything. That’s right; I’m outing myself as a person with muscular dystrophy. You have no idea how many years it has taken me to be able to say that. I have muscular dystrophy, I am disabled, I am crippled – and yes, it sucks almost all of the time.

For years I hid it as much as I could, lying about why I had trouble with stairs. The lies came easy, “I twisted my ankle or my foot is asleep.” And people seemed to be content with lies. It wasn’t until the disease progressed to a point where I couldn’t hide it anymore that I had to stop lying to myself as well as everyone else.

I got a ton of support from my sorority sisters, who were some of the first new people in my life I told (new people meaning people I met after the disease struck). And to this day they continue to support me. Someone will pick something off the floor that I have dropped, or another sister will take the elevator with me so I don’t have to ride alone, they understand I can’t help with the physical stuff or participate in certain activities and have always been great about letting me take on the “clerical and organizational” type duties. My coworkers pretty much fall into that same category of understanding. Whenever we are walking in a group, at least one person will lag behind with me to keep me company. In a lot of ways I am lucky in that the people I work with or volunteer with are understanding.

I have a feeling this blog will unfold like a non-linear film. I predict I will go back and forth in time from the first signs that something was wrong to today’s good and bad moments.

I’ve lived in silence and with lies for too long, and I’m finally beginning to understand there are people out there who accept me and my disability. There are people who want to know more and I hope to be able to give those who want to know some insight into my world, to my life with MD.

It is not my intention to make people feel sorry for me, in fact that is the very LAST thing that I want. What I hope this blog accomplishes is to open up conversation and understanding and maybe, just maybe someone else out there will be able to relate to what they find here. That being said, I feel it’s important to address the darkness that comes with disease. There will be times when the disease gets the best of me, mentally. Please don’t mistake these times for a cry for pity, rather a request for reassurance that I’m not alone – that’s all.

I hope you stick with me through this journey because I have no idea where it will go, but wherever we end up at least you know I almost always get the good parking spots!