Routine Maintenance

Yesterday, I did something the rest of the world has to do. I went to the dentist for a checkup and cleaning. Just because I have MS doesn't mean that I'm exempt from routine maintenance. If anything, because of my condition it is very important for me to stay on top of the few things that are in my control medically. I have always been fastidious about my oral hygiene. My father is a dentist, I worked in his office and I've seen firsthand how gross teeth and gums can get when a patient avoids having them cleaned regularly.

There are some very specific reasons that I visit the dentist's office every six months. Since MS is an autoimmune disease, I need to have my mouth and gums checked regularly for signs of infection and periodontal disease. To complicate matters, many of the medications I take dry my mouth out so plaque is more likely to build up on my teeth and harden. This can irritate the gums and lead to tooth decay. As a matter of fact, I did have a small cavity at my last visit. Because it was caught early, the filling was small and done quickly. There was a fee involved, but it was much less for this small restoration than it would've been if it hadn't been taken care of right away.

Beyond the practical side of regular dental checkups, there's the aesthetic part. Everyone looks better with clean teeth and a healthy mouth. You're not afraid to smile when your teeth aren't rotting and your gums aren't puffy and bleeding. My teeth may have yellowed some with age, but I take good care of them. After all, I will always be a dentist's daughter and a girl never wants to disappoint her father.

In Sickness and in Health

My husband and I attended a wedding last weekend. Actually, we only went to the reception and not the ceremony because of space limitations. That was okay with me because the reception is always more fun and I have started to feel uncomfortable hearing couples exchange vows.

No one would accuse me of being sentimental, but when I go to a wedding to see a young couple professing their love to each other no matter what, I get a little choked up. I remember when Doug and I were that young couple. We never could have imagined what was in store for us. They say that love conquers all, but I wonder if we would have said "I do" if we fully understood what we were agreeing to. I mean every couple expects that if they stay together long enough they will experience the sickness part, perhaps in their 70s or 80s but not in their 30s. We will celebrate our 17th anniversary in early August and I am grateful that it does not coincide with the anniversary of my diagnosis in late August. In life, there are joyful celebrations and days of quiet remembrance.

I sincerely hope that the newly married couple who started their lives together will have a long, happy and healthy marriage. Ordinary life is enough of a challenge; extraordinary life can seem insurmountable. All I can say is in the journey of life it's good to have someone's hand to hold.

Latest MRI: if I only had a brain

My MRI results are in and the verdict is: no change. This means that I am not getting any better, but I haven't gotten any worse. At least this time, I feel I'm doing about the same as I was two years ago. There have been times when the MRI was stable, but I was in a tailspin.

When my neurologist called, I refrained from asking if the films had shown that I have a brain. I've worn out that joke and know better. An untrained eye like mine can easily identify that they are looking at a brain inside a skull, but the lesions or "spots" as I prefer to call them are harder to see. Early on in my diagnosis, I found a useful web site that showed pictures of "normal" MRIs beside ones for people who had suffered a stroke, had a brain injury or had been diagnosed with MS. It is a surreal experience to find yourself looking at what is inside your head and seeing that it's damaged. I've never broken a bone, but I would think that someone who has looks at their xray and it confirms what they already know. As for my MRI, there was a time that I was blissfully unaware of what was going on inside my brain and spinal cord. The scan makes it real for you, undeniable evidence that you have the disease.

So, in the grand scheme of things a stable MRI is a good one. It means that my current treatment is doing its job and slowing the progression of the disease. My brain may look like Swiss cheese, but there are no new holes and the ones that I have aren't any bigger. I will stay the course because I don't have anywhere else to go.

To learn more about MS and see some actual MRI pictures, go to http://www.ucsf.edu/msc/faq.htm and scroll down to diagnostic tests.

Tech-ed Off-My Latest Encounter with an Underling of the Medical World

Today, I went to a diagnostic center for an MRI that my neurologist had ordered. I had my first MRI in 1997 and subsequent ones every other year. In other words, I am no stranger to the procedure. Still, I was going to a different facility so I had no idea what to expect from the physical location or its staff. It was quite an experience.

I am accustomed to the general public being uncomfortable, insensitive and incompetent when it comes to interacting with my disabled self. However, I expect more from those in the medical field and I am often disappointed. The radiology technician I dealt with today really got under my skin. To begin with, he was a middle-aged man who had a look on his face that said "I really don't want to deal with this person." When he called my name and my aide pushed me toward him, he asked why I was in a wheelchair and if I needed it. I am wondering why he didn't read the order that showed I was getting an MRI because of my MS diagnosis. I had to tell him that I could not walk or stand, I was paralyzed from the waist down. Then, he asked me if I ever had an MRI before. Again, if he had just looked at my record for a second he would have seen that I was diagnosed with MS 11 years ago and have had at least seven MRIs.

Since the machine is a big magnet, I had to be transferred from my wheelchair to another that could go in the near it. My aide performed that transfer, but she was not allowed into the MRI area. In fact, he yelled at her not to take a step into the MRI room. He transferred me from the chair to the MRI in an awkward manner and nearly let the top half of me flop backwards. Instead of saying he was sorry, he commented that I "couldn't even sit up by myself." This is something that I knew already and didn't need to be made to feel bad about it. I have found that when someone is inept at dealing with a disabled person, they will blame the person for problems instead of themselves. This guy even complained about my small veins and my inability to straighten one of my arms out fully. I hope that he never has to deal with a stroke patient or someone with Parkinson's. I could just hear him saying, "can't you stop shaking?"

Sometimes, I feel that I should complain to someone about situations like this because some other person who is weaker, sicker or older might receive the same treatment and be unable to advocate for themselves. However, I'm not the crippled champion fighting for the rights of the disabled and the chronically diseased. The reality is that there is a shortage of nurses, aides, technicians, receptionists, etc. People don't take pride in their work and a lot of them went into the medical field because they were told they would always be in demand, not because they wanted to help people and make a difference. Sadly, people like me need people like them and although there are lots of good people out there, it's the ones like the one I encountered today that stick in my memory.

Losing My Religion

Last Sunday was Easter but I didn't go to church. After all, I haven't gone the other 51 Sundays. Why start now? I should explain that I was raised Catholic and even conceived Catholic since I was born nine months after my parents married. I have been baptized, first communionized, confirmed and married in the Church. I did four years of hard time in Catholic school also, but I guess it didn't take. I discovered when I left home for college that if I didn't have to go to Mass, I didn't. Oh, I continued going for a while out of obligation and pure guilt, but never because I wanted to. To avoid conflict, I would go when I was with my family, just not by myself.

Then, I got MS and suddenly people are praying for me, having masses said and giving me angel pins. Even a friend of mine from college asked me if I had started praying after my diagnosis. I have nothing against people who have found solace in religion during hard times, but it just doesn't work for me. Plus, I feel it's kind of hypocritical to ask for divine intervention when you've ignored the Almighty when things are going fine. I also can't believe that I ever did anything so bad to deserve what's happened to me. I didn't lie, steal, cheat or murder; I just stopped going to church on Sunday.

During my college days, a fellow lapsed Catholic and I would say that when we were old women we would wear black and go to Mass everyday to atone for our youthful transgressions. I haven't turned my back on my religious upbringing. I have just gone in another direction. I am reminded that actions speak louder than words and I try to demonstrate by my actions that I am a good person. In my opinion, that does a lot more to make the world a better place than saying a prayer.

 

 

Do you go to a support group?

People often ask me this question and I'm not sure why. Perhaps they are thinking what they would do in my situation. The simple answer to this question is no. I have learned that there is no need to provide a lengthy explanation, although it's hard for me to keep my big mouth shut. Here is what I would like to tell them:

I have never been a joiner. I was never a girl scout, member of a club or a sorority sister. Having a serious disease like MS doesn't change who you are. Also, I need to have something more in common with people than this disease that I hate. It is good to have people who understand what you're going through, why you're so tired, why you are having trouble getting a complete thought out and other MS symptoms. However, I have less patience with these people and am amazed by what they say to me. I was flabbergasted when a support group member came up to me and said that their doctor told them they would end up in a wheelchair like me and that was a fate worse than death. If it hadn't been so close to Christmas, I would have given that woman the serious tongue lashing she deserved. What an ignorant, insensitive comment. For a moment, I wished that she would find herself in a wheelchair just to see how it felt.

When I was first diagnosed, my neurologist actually advised me NOT to go to a support group. He already knew enough about my personality to know that it wouldn't be a good fit. He told me that he had spoken to a group early in his career and it was really depressing. So, I avoided support groups early on because I didn't want to see how bad the disease could be. Now, I don't go because I don't want to listen to people complain when they are much better off than I am. I have my unofficial support group of friends who have MS that I can call or E mail anytime. We understand each other and we definitely understand that sometimes the last thing we want to discuss is MS!

Got the Blues

I mean this literally. For the past 24 hours, my urine has been blue and my tears have been blue. It's just a lovely side effect of the medication I am taking in an effort to control my MS. The drug is called Novantrone and it is a chemotherapy administered by IV infusion at the oncologist office. At least I only have to go through this every three months. All the other therapies that I've tried have required regular injections at home, as often as every other day. I was becoming a swollen pincushion.

My Novantrone treatment takes about an hour and that gives me plenty of time to reflect on my situation or take a nice nap. I find myself in a big, comfy recliner surrounded by people battling cancer. I think to myself that things could be worse, but I have learned that many of these people feel sorry for me. A woman with Stage Three breast cancer asked why I was there. When I told her I had MS, she said that at least her problem would have some resolution; either it would kill her or she could beat it. With me on the other hand, there would be no such resolution. I would have to continue to live as I am now with the prospect of deteriorating further. Leave it to a person with cancer to cheer you up.

I must admit that it is a surreal experience to look up at the IV poll and see the bag of blue stuff dripping down the tubing and into my arm. It's just not how I envisioned life. Most of the patients don't have a pretty blue medication like me, but one day the older gentleman sitting next to me did. However, his Novantrone was to treat prostate cancer. He asked me if we had the same medication, I said we did and he said that a probably wasn't treating the same thing. All I could think is that I would have to be a hermaphrodite and the thought of someone with MS and such an abnormality seemed rather extreme. I kept the thought to myself. Sometimes, it's best not to share.