Friday, November 20, 2009

Booby Trap

I went for my annual screening mammogram on the very day that new guidelines were announced. According to the revision, I don't have to have the test done until age 50 and then only every other year. I choose to ignore this suggestion and continue doing what I've been doing as long as my insurance company continues to pay for it. It is my personal belief that women with MS have a responsibility to be vigilant about routine testing. Our disease brings enough uncertainty and I like the peace of mind knowing that nothing else is wrong. So, I am willing to deal with the awkwardness and discomfort of getting a mammogram.

You expect that the medical community would be better equipped to interact with the disabled than they actually are. The following scenario happened to me the first time I went for a screening.

    Tech: Miss Mayo, could you come with me?

I follow the tech in my wheelchair, my aide pushing me. I am handed a gown and given the instructions to put it on with the opening in the front. The tech returns several minutes later.

    Tech: Can you leave the wheelchair over in the corner there and stand here by the machine?

    Me: No, I can't stand, let alone walk.

    Tech: Well, I don't know how we are going to be able to do this.

    Me: I'm going to have my aide wheel me over to the machine and you're going to lower it down.

    Tech: I'm not sure that it goes that low.

    Me: There's only one way to find out.

    Tech: Is there any way that you can raise up the chair?

    Me (inner voice): Sure, I have a magical, levitating chair just like Dr. Xavier in X-Men. Me (audible): No, it doesn't.

    Tech: And you can't stand for even a minute?

    Me: That would take a miracle since I am a paraplegic.

Somehow, we are able to get the films that we need although the tech keeps bumping my knees into the machine while adjusting me. My aide also gets to don a lead apron so that I can remain pressed into the machine as it squishes me. I wait for the films to be read while I'm there in case anything needs to be retaken. It's a better use of time for me to wait around vs. having to return another day and do it all over again.

As unpleasant and ridiculous as that experience was, I like to think that I might have made it better for the next person in a wheelchair who has a mammogram done at that facility. I guess I appreciate that people give me the benefit of the doubt and think I have more mobility that I actually do, but I wish they would assume the worst and not make me feel bad when I can't stand or even move my legs. After all, I'm actually not trying to be difficult for a change. Stubborn, disabled people like me must keep challenging the medical community to provide us with the same care as the bipeds. I know that as our population ages, there'll be a lot more people with mobility impairments. Until then, I will continue to earn the nickname, "hell on wheels."


Tuesday, November 17, 2009

Band of Bothers

Spasticity is a common MS symptom that manifests itself an uncommon ways. For example, I experience a band of tightness around my rib cage most every night. It's as if someone took a belt and pulled it as tightly as possible. I can actually feel the difference between the muscles in spasm and the normal ones surrounding it.

My neurologists theorize that the problem is caused by thoracic lesions on my spinal cord that are too small to show up on an MRI. From my perspective, I don't care as much about why it happens as I do about how to remedy the situation. The good thing is that it seldom happens all day. I notice it most when I'm trying to fall asleep at night. My approach is to combine traditional and alternative medicine to help make me comfortable. I take 20 mg of an anti-spasmodic medication called Baclofen along with 50 mg of an older, anti-depressant called amitriptyline that reduces neuropathic pain. On top of this, I add deep breathing and relaxation techniques. By trying to slowly expand and contract my rib cage, I can get my muscles to stop contracting as hard.

General books on MS that I've come across describe this phenomenon as the "MS hug." I can assure you that it doesn't feel like any hug I've ever had. I am thankful that mine is lower than where the bottom of my bra sits. Other women have told me how awful that is. They avoid wearing their boulder holders unless they're out in public. It's bad enough to have MS, but who wants to explain that your boobs are saggy because wearing a bra is far too painful. That reminds me that I had a mammogram yesterday, but that's a whole other story.