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.