Friday, June 20, 2008

No Weigh

When you go to the doctor's office, the nurse asks you to step up on the scale so she can get your weight. When I go to the doctor's office, the nurse asks me to step up on the scale and I tell her that I can't. This always perplexes them, although I doubt that I am the first person to have this problem. They usually have a walker surrounding the scale to help someone who is unsteady on their feet, but that's it. Occasionally, a nurse will actually say aloud that I am too big for the pediatric scale in their office. (that's the one that is part of the table) Realizing that there is no way that I can be weighed in their office, they ask me if I know how much I weigh. I provide them with a number, but it is now three or four years old. That just wasn't good enough for administering chemotherapy. I had to get weighed.

So, the doctor wrote me a prescription for me to go to the hospital and be weighed. I was told just to go to the main registration desk, show them the prescription and it would be taken care of. Knowing how things work in the real world, I was skeptical. Unfortunately, I was also right. The woman at the reception desk had no idea what I was asking for and told me that she didn't think they did that. She then suggested that I try down in the emergency room. My aide pushed me all the way down to the emergency room where we were again told that they didn't do that there. This person even added that she didn't remember ever getting that request in the 20 years she had worked at the hospital. We were sent back to the registration desk. This time the person at the desk give us a phone number that my doctor's office could call to arrange for me to be weighed. I had my aide make the phone call because I knew that my patience was wearing thin. I am thankful that that office was sympathetic to our plight, promised they would get it taken care of and told us not to leave until we had gotten what we came there for. We ended up returning to the emergency room, but this time someone met us and brought us back to a room with a hospital bed that had a scale. My aide transferred me to the bed, the nurses weighed me, I was transferred back to my chair and then wheeled out the door. All that it only took a hour of my time and a little of what was left of my dignity.

I resent being treated like a second class citizen because I can't stand. For medical personnel, very few are empathetic to my situation. They view and treat me like a problem that they don't want to deal with, not separating the person from their condition. I don't want to be difficult. I just want the same care that any patient deserves. Wouldn't it be more productive if staff brought up problems they were having dealing with the disabled to their supervisors? With the population living longer and a giant bunch of aging baby boomers, limited mobility problems like mine will become more common. Healthcare should lead the way in accommodations instead of bringing up the rear. I hope that someday when I go to the doctor's office someone will say "we can get your weight right here." It sounds simple enough.

Saturday, June 14, 2008

Aging Gracefully

People who were diagnosed with MS 20 years ago or more were told to lie down and wait for death. Funny thing is many of those people are still around. Some of them are actually better off than I am without the benefit of the disease modifying medications that I have taken from the beginning. Just more evidence that this disease varies widely from person to person.

The one thing that these veterans with MS and I have in common is that we've had to deal with issues that most people do not have to face until old age. For example, I was only 30 years old when I had to use a four-point cane after an acute exacerbation. Later, I had a walker and then a wheelchair. I had to learn to think of these objects as tools and not symbols of my declining condition. The same acceptance process was necessary with my bladder issues. I needed to make the decision that it was preferable to wear paper underwear to staying home where I would always have access to a bathroom. People often tell me about a parent or grandparent who doesn't want to make the kinds of accommodations that I already have. While I understand their desire to stay independent, they ultimately become a prisoner of their own stubbornness. Plus, I don't feel badly for someone in there 80s who is having difficulty walking or controlling their bodily functions. I've already been through all those things and you don't find be complaining (except on my blog).

I even read an article in the MS Society's Magazine several years ago about this very subject. The article told me what I already knew, people who have lived with MS are better prepared to deal with the natural process of aging. Taking that into consideration, I really am "differently abled."

Friday, June 6, 2008

Summertime, But the Living’s Not Easy

Summer is definitely here with its long, sunny days. There was a time when you would find me worshiping the sun and basting with suntan oil, but no more. Having MS makes me very sensitive to the sun and especially the heat. When I overheat, I'm a mess. I turn beet red, I become floppy and very tired. Basically, the heat makes all my symptoms worse. Some experts even call it "a pseudo-exacerbation." All I know is that it is something I try to avoid.

One symptom in particular that the heat definitely affects is fatigue. It is very difficult to explain what MS fatigue is like. For myself, I got a preview of it when I had mono back in high school. I remember simple tasks like taking a shower being absolutely exhausting. With MS fatigue, I can have a good night's sleep, wake up and have breakfast, then all I want to do is go back to bed and take a nap. Even the Federal government acknowledges this fatigue and accepts it as a justification on disability applications. There are medications like Ritalin that can be taken to combat the symptom, but most people don't like how jittery it makes them feel and how hard they crash afterwards.

Fatigue can be a very isolating symptom. It's hard to explain to other people and it limits your participation in everyday life. You're always concerned when you have a scheduled event that you may not have the energy for it. There are strategies that you can use to conserve energy and make sure that you're awake for the meeting, party, dinner etc., but they don't always work. Sometimes, the only thing that will make you feel better is to lie down but that makes you feel guilty like you are letting everybody down including yourself. It can also make you feel angry, but anger and guilt don't change what is. You have MS and it makes you tired; that's the reality.

So, my reality for this summer and subsequent ones is to stay indoors in the air conditioning. I will go out when I have to and I won't beat myself up when I need to take a nap. After all, making accommodations is what my life with MS is all about.

To read more about MS fatigue, go to