Paper Trail

A long time ago when I would see a commercial for adult incontinence products, I would think to myself that if I got to the point where I could not control my basic bodily functions, I wanted someone to put me out of my misery. I was thinking that time wouldn't occur until I was fairly old and senile. How wrong I was!

When I started describing the weird symptoms I was having to various doctors, there was one thing I left out. It was a problem that was too awkward to discuss. I found myself having to urinate frequently and desperately, but I didn't tell anyone. Perhaps, it was just part of getting older (although I was in my mid twenties at the time). If I had described all my symptoms, the numbness in my feet and the urination problems, the doctors might have looked for MS sooner. I actually was relieved (no pun intended) to discover after my diagnosis that bladder problems in MS are fairly common.

With this knowledge, I dutifully wrote down every time I went to the bathroom for a week. I shared my record with the neurologist and asked if he thought I was going too much. I honestly didn't know what was considered "normal". He did say that my schedule seemed a bit excessive and prescribed a bladder medication that would relax the overactive muscle. It helped with the urgency and frequency, but it had a disturbing side effect, dry mouth. That's right, the medication makes me thirsty and causes me to drink more. The wonders of modern medicine.

Once I had calmed down my bladder, I still needed a little extra insurance to avoid an embarrassing accident. At first, I tried incontinence pads which are like maxi pads on steroids. They really felt bulky between my legs and the adhesive seemed to stick everywhere except my underwear. I didn't want a do-it-yourself Brazilian wax. There was one other choice: protective underwear. Think of them as pull-ups for grownups. They are made of paper, but they are far less bulky than the incontinence pads and aren't really noticeable under clothing.

I actually do not have an accident that often. At least for now, I have control of my bodily functions. When I don't make it in time, it has more to do with my limited mobility. I can't wait until the last minute to get to the bathroom. I remember reading an article about how people with MS were able to handle the aging process better because they had to deal with problems earlier than most people. They learned to accept needing a cane, walker or a wheelchair and even having to deal with the incontinence problems. I guess this means that I won't end up as a cranky old woman; I'm already there. What can you expect from a person who can get a paper cut from her underwear?

Botox Beauty

I went for my botox treatment yesterday, but it's not what you think. Every 90 days, I have multiple botox injections strategically placed in the muscles of my right arm to help with an MS symptom known as spasticity. Spasticity is as bad as it sounds, a tight spasm of a muscle or group of muscles that can be extremely painful. Without the botox, I would not be able to extend my arm or perform such mundane tasks as feeding myself. It's amazing what a great difference the drug makes fairly quickly once it's injected. The time period between treatments is not something that my neurologist and I decided; it is what the insurance mandates. Therefore, we need to make sure that I have a high enough dosage to last for that duration without being too much and making the muscles too weak. Also, insurance won't pay for me to have the procedure done on the same day that I have a regular appointment with my neurologist, so I need to go back tomorrow for that activity.

When I go to get my botox treatment, I avoid telling people specifically what I'm doing. Basically, I'm lazy and don't feel like explaining the whole thing. The commercial for botox cosmetic is on television all the time, but not many people are aware of its other uses. Knowing what it does to the muscles in my arm, I would never let them inject that nasty stuff into my face. So, eventually I will have a wrinkled face but a smooth arm. I did find it disturbing when I told somebody that I was getting botox and they said to me, "you don't really look like you need that yet." Gee, thanks for the compliment, I think.

Vanity of a Cripple

I refuse to look as lousy as I feel sometimes. Some things I can do nothing about, like being in a wheelchair, wearing sensible shoes and elastic waist pants with no buttons or zippers. I choose to concentrate on the few things that are still under my control. For example, today I got my hair colored and cut.

This may not seem like a big deal to most people, but to me it is significant. First of all, it's an effort just to get me to the salon and into the hairdresser's chair. I make a spectacle of myself without even trying. I always go to the same place, so the staff all knows me but the customers are different. I can tell that they're watching and wondering about my wheelchair and why I'm in it. This process of coloring my hair means many steps and transfers from my wheelchair to the hairdresser's chair back to my wheelchair and to the shampoo chair, etc. My aide and I get a good workout before it's all done.

So why do I do it? Because it makes be feel normal. Also, since I'm always sitting down and lower than everyone else, I am self conscious about the gray hairs on top of my head. I can't see them, but everybody else can. My wheelchair ages me enough. Knowing that I look OK makes me feel better mentally and I have often been told that I am very lucky to be cared for so well. When I got my last MRI, the technicians told me that most of the women who come in with my level of disability are in pretty rough shape. Their hair is dirty and matted, their teeth the rotting out of their head and their skin is scaly. That makes me sad knowing that some people have to live like that. Having MS is depressing enough when you're well groomed.

I can't say that I look at myself in the mirror very much but when I do, I don't want to see a scary old woman looking back at me. Thanks to time and some chemicals, I won't have to.

I’m Special

I must be special because I see a lot of specialists. Just because I have MS, doesn't mean I'm exempt from other medical problems. If anything, the fact that I have MS and I'm in a wheelchair causes me to have more problems and makes non-MS related problems seem like far more than I deserve. This week is a great example of what I'm talking about.

On Monday, I had cataract surgery performed by an ophthalmologist. This had nothing to do with my disease and everything to do with my poor eyesight. Way back in May, I had a detached retina that I thought was an inflammation of my optic nerve (a MS symptom). It didn't hurt and I didn't have it looked at for three weeks after I had noticed a vision problem. So, I had that repaired and developed the cataract from the surgery. I am now in the homestretch of this problem and in a few weeks, I will have my vision checked again and get a new glasses' prescription. I will actually end up with better vision than when I started, and that's a big deal for someone who can't see the big E on an eye chart without her glasses.

Tuesday, I got a day off from doctors' appointments, but I was back to the ophthalmologist on Wednesday for a follow-up visit. Then, I went to see my primary care physician in the same building. He is the guy who is responsible for all my referrals to specialists and also for my general well-being. The toenails on my two big toes were growing strangely and starting to hurt, so I wanted him to take a look at them. He took one look and said, "Are you seeing a podiatrist?" I told him I wasn't and he told me "you are now." Hooray, another specialist to add to the list.

I finished off the week with a routine visit to the psychiatrist on Thursday and the podiatrist on Friday. Sometimes people don't believe me when I tell them that being disabled is my fulltime job, but it really is. I have filled out more new patient registration forms, family histories and acknowledgements of privacy practices than anyone else I know. I go to these appointments prepared with a detailed list of my medications and the names and phone numbers of all my other doctors. I guess that makes me special too.

Don’t Ask, Don’t Tell

Why do perfect strangers feel the need to ask me how I "ended up in a wheelchair"? I'm no Miss Manners, but I think that it's rude. I am also not a big fan of the phrase "ended up in a wheelchair". It seems so negative and suggests that if I'd just tried a little harder I wouldn't have to be on wheels.

How I answer this intrusive question depends on my mood. When I'm feeling deviant and/or morbid, I like to tell people real conversation stoppers like "horrible car accident. I was the only one who made it out alive" or "it was a skiing accident. The last thing I remember is seeing that tree come out of nowhere." I make sure that my delivery is my best imitation of Wednesday Adams, deadpan and grim. Hopefully, these people will think twice before they ask another person in a wheelchair how they got there. I also have found that the answer "I'm lazy and would rather be pushed around" confuses people. They have to think about it for a moment before they actually realize that I'm being sarcastic.

I am not fond of telling people what is actually wrong with me, that I have MS. The reason I don't like to share this information with strangers is that are always leads to some kind of discussion. Tell somebody you have MS and inevitably they know somebody with the disease, either a friend or family member or a celebrity (that they don't really know of course, they just know of). Regardless of who it is, this person they know is either doing much better than you are or a lot worse. It's a real treat when they say something like "my uncle has MS but he goes sky jumping and runs marathons." Obviously, I must be doing something wrong.

Sometimes when I'm up for it, I take this opportunity to educate the person about the wonderful world of MS. I tell them how the same disease affects people differently, how you can have invisible symptoms, that there is new research going on constantly and exciting new drug therapies on the horizon. The role of reluctant ambassador is not my favorite, but we all have to do things we don't want to do sometimes. I feel obligated to admit and discuss my disease if I happen to be wearing MS Walk paraphernalia.

So if you happen to see a woman in a deep purple wheelchair, my suggestion to you is to just say hello. You really don't want to know how she "ended up in a wheelchair."

A New Experiment

I dedicate this first post to my friend, Trish. She is the one that suggested and I blog because of my unique point of view. I told her that I was far too undisciplined for the endeavor, but after I gave it some thought I realized that I probably need a little discipline.

Since I left the working world in 2004, I have been in a rowboat with only one oar. I just drift aimlessly most of the time and when I want to head in a particular direction, I go around in circles never getting anywhere. My life is no longer linear as it was when I was working. It used to be that I always had some sort of goal, to make it to lunch, to the end of the day, to the end of the week, etc. I don't have that momentum anymore and I have to constantly remember to allow my husband some downtime when he comes home from work.

So, I will treat this new activity as a kind of therapy and see what happens. Stay tuned.