Wednesday, August 20, 2008

Olympic Fever

You would think that someone like me wouldn't be watching the Olympics, but you would be wrong. Just because I have physical limitations doesn't mean that I don't enjoy watching the athletes compete. Their strength and agility amazes me as it should most people. Let's face it, very few of us can do what they do.

Another reason I watch the Olympics is because it gives me a break from the routine. I can turn on the TV during the day and watch an event or I can go online to check out scores and see video of events I missed. When my husband comes home from work, I have something to talk about. I tell him if the U.S. got any more medals, the latest controversy, who is doing what when, etc. I follow swimming and gymnastics the most.

Even when I was still able-bodied, nobody would consider me athletic. However, when I was a little kid my parents enrolled me in swimming and gymnastics. I wasn't very good at either one. In swimming, I was hindered by my poor eyesight and slow reaction time. I was always the last person to dive in when racing and the diving board terrified me because I don't like heights. Gymnastics was even worse. In addition to being naturally klutzy, I was not very flexible. Suffice to say that my gymnastic abilities never went beyond the somersault and the cartwheel.

My husband is always amazed that for two weeks every two years, I actually watch and talk about sports. Soon enough, football will be on and I will go back to being disinterested. It just doesn't have the same appeal to me as the Olympics and it's been that way since long before I became a crippled champion.

Friday, August 8, 2008

Able to be Stable

I had an appointment with one of my neurologists this week. Unlike most patients, I have two working on my case. Neurologist A has been with me since the beginning and he knows me and my idiosyncrasies. We've been through a lot together. Neurologist B is a newer edition to my team. She did a fellowship in MS and she offers a fresh perspective on my situation. Between the two of them, I am seen every three months and that ensures that any problems are caught early while giving me the benefit of a longer time between observations. So, the appointment I had this week was with Neurologist B and she had not seen me in six months.

For you lucky people who have never had an appointment with a neurologist, it's a little different than your average visit with a primary care physician. First, you are asked a lot of questions about what has been going on with you. The first time I saw neurologist, I wondered if we were just going to talk the whole time or if the doctor was actually going to do something like examine me. Now I know that they are checking cognitive ability and your state of mind. When I am having an exacerbation, I can't hold a conversation. As an experienced patient, I come prepared with my own set of questions and concerns. Not only does it help facilitate the conversation, it also helps me to remember everything I wanted to ask. It's a way to maximize your appointment time.

After Neurologist B and I finished the Q & A, she said, "let's take a look at you." Then, it was time for me to do my tricks. It started with "follow my finger with your eyes" and then "smile" and "stick out your tongue and say ah." After that performance, it was time for the feats of strength. For the first feat, I bent my arms at the elbows with my hands on my chest, raising my arms like wings while the neurologist tries to push them down. I then pointed my elbows to the ground holding my arms close to the body while the neurologist tried to extend them. I also tried to push the neurologist away from the same position. There was a time I would do similar things with my legs but since they don't really work anymore, we forgo that.

After that strange little work out, Neurologist B gave me some good news; she thought I was stable (physically at least). In the world of progressive disease, it's the best you can ask for. You aren't getting better, but you're not getting any worse. My assignment is to keep doing what I'm doing, taking all my drugs and always being sensitive to any changes in my condition. Hopefully, in another three months Neurologist A will pronounce me "stable" too.

Friday, August 1, 2008

Exercise in Futility

There are so many things in my life that I have no control over and because of that I like to troubleshoot potential problems before they happen. Yesterday, I checked my calendar to see if I had any doctors' appointments next week and saw that I had two. I then went to my health insurance company's web site to make sure that all of my referrals and authorizations were up-to-date. I discovered that the authorization to fill my Baclofen pump had expired, so I called that doctor's office to let them know . At this point, I should explain that most patients wouldn't take the time or even know how to check something like this.

Anyway, I called my doctor's office and explained my problem. I quickly realized that the person on the other end of the line had no idea what I was talking about. She told me that I would need to get a new referral from my primary care physician. I responded that she was wrong; the specialist's office needs to get authorization for a particular procedure. I added that I had been going through this process since my pump was implanted back in 2002. It was challenging, but I stood my ground while keeping my cool. In the end, that phone call accomplished nothing but I had come up with a strategy.

My next call was to my insurance company. Once again, I explained the situation and included the conversation that I had just had with the office. The member services representative I spoke with confirmed that I was right; the office needed to call for authorization to do the refill. Since there was no way I was calling those people again, I asked the man who was helping me to call on my behalf. He agreed and offered to do it right then if I didn't mind holding. Since being on hold is a large part of my existence, I had no problem saying "fine." The poor guy ended up leaving a message for the person who handles insurance and he promised to follow up with them in the afternoon. I should be okay because my appointment is not until next Wednesday.

It's times like these that remind me why I no longer work. I cannot imagine having to make all these phone calls on my lunch break or having them returned while I am trying to concentrate on something else. I must have spent at least an hour this morning trying to sort this out and I'll probably have to spend more time next week on the same issue. I read that there are growing number of companies and individuals specializing in patient advocacy. For a fee, someone will keep track of your insurance and medical billing to make sure that everything works smoothly. I don't know how much they charge, but if they have to deal with people like me that it's hard earned money.