Holi-dazed

You can't spell Christmas without MS and none of my holidays are ever without MS. Living with a chronic illness means that you and those close to you have to make adjustments every day, even special occasions. Because this is the season of giving, my gift to you are tips and tricks for making it through the holidays with a disease like multiple sclerosis.

1. Define what is important for you to have or do. For example, "Christmas is and Christmas without…" This could be baking cookies, decorating a Christmas tree, attending a Christmas concert, etc.
   
2. Figure out how you can have or do those important things in a different way. I was no longer able to decorate my Christmas tree and my husband doesn't like doing it, so I was able to start a new tradition where friends of mine come to my house to help. If I want to go to an evening concert, I make sure to take a nap in the afternoon so I can stay up later.
   
3. Give yourself permission to not be perfect. You may feel that you're letting people down because you can't do everything that used to be able to do, but you need to believe that they'll understand and if they don't, that's their problem. If they're family, you're stuck with them but if they're friends you don't have to continue your friendship.
   
4. Expect to be a little emotional, but mindful of actual depression. It's perfectly normal to find yourself reflecting on previous holidays, comparing your condition. I found myself one year suddenly exhausted putting up the Christmas tree. I had come home from work, gotten the tree out of the box, assembled the tree and was in the process of doing the lights. My legs had given out, so I was sitting on a kitchen stool but I still just couldn't do anything else. It made me cry because the year before I had put up the tree in one evening. If I'd just been satisfied with assembling the tree and leaving the rest for the next day, I would've been fine. The crazy part is that the only one who cared about getting the tree up was me.
   

I think that most that will agree that Christmas has gotten far too commercial anyway. We find ourselves slaves to the shopping malls and big-box stores, buying stuff for people because we have to buy them something even though they don't really need anything. Think of MS (it's you're unfortunate enough to have it) as an opportunity to return to what the holidays are really about. I wouldn't go is far as to say that my disease is a gift, but it has forced me to appreciate what I do have at Christmas time and throughout the year. Merry Christmas to all and best wishes for the year ahead.

Revenge of the Blog

I knew that this would happen. I'm actually surprised that it lasted this long. I'm referring to this blog. Like so many other of my post-employment projects, I've lost interest in writing regularly. I have many reasons and excuses for this. The biggest one is that my life is boring and monotonous.

I am reminded of this as I have been filling out disability paperwork. I have had to answer questions such as "describe your daily activities" and "how does your condition prevent you from caring for yourself." A long time ago, I attended a workshop on applying for disability and they said that you should fill out your paperwork describing your worst day. Even my best day doesn't seem so great anymore. It's pretty depressing to see things laid out that way. I wrote down everything I did from the time I woke up until the time I went to bed. I also included everything that required assistance such as bathing, dressing, grooming and toileting. Basically, I'm useless and helpless. What a combination!

At my most recent neurologist appointment, my doctor asked me about my frame of mind. Without hesitation I told him that I was really getting tired of having MS. This is the guy who diagnosed me so he knows how long we've been playing this game. Perhaps he's gotten tired of it too? After all, we treated me aggressively from the very beginning but this disease keeps fighting back. One project that I have not abandoned is keeping up with the current research. Amazing breakthroughs are being made in MS treatment and I need to believe that there will be something new and effective out there for me.

I also guess that I need to carry on with this blog because I've discovered that some people are actually reading it. My message is simple and direct; MS sucks, it's hard to explain, life goes on. If that's helpful to people then perhaps I'm not that useless after all.

Chronic Complaint

Everyone rallied around me when I had my first MS attack and subsequent diagnosis. There were cards, flowers, food, phone calls and visits. Best of all, I got better. I did my physical therapy, occupational therapy and managed to almost get back to the way I was before I went into the hospital. It was a rough time, but now I knew what was wrong with me and I had the tools to keep things under control, or so I thought.

Over time, I learned what relapsing-remitting MS meant. It could come back whenever and however it wanted. Also, even with medication it's still gotten progressively worse. Having a chronic disease like MS is not like a typical illness or injury; it is not just one incident, but an ongoing problem. For me, there have been times when it has been really bad, but even when I have had an exacerbation and recovered somewhat, it's never as good as it was before I had the attack. This is extremely difficult for me, but it is also hard on my friends and family.

People are willing and able to help out for a set amount of time, but an ongoing commitment is another story. For example when I've been very sick, people have brought food to the house for me and my husband, but no one brings anything ordinarily. Even when things are "normal" around here, Doug needs to do all the cooking and cleaning in addition to caring for me and on top of working full time. Our situation is very isolating at times. It is inevitable as a couple ages that one spouse will become the caregiver for the other, but not when they are still in their forties.

So, I am left with a dilemma. On the one hand, I want to be known and remembered for more than my disease but I also want people to stay in touch and check in every once in a while to see how I'm doing. As I said recently to a longtime friend of mine "the novelty of my illness ended long ago." Although my reality has been permanently altered, the majority of my friends, family and acquaintances have moved on to other things. After all, I will be living with MS for a long time to come.

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.

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.

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.

Summer MuSings

It's summer vacation season and even though I am on a "permanent vacation," I still seem to slow down in the summer. The idea of writing a cohesive blog entry does not appeal to me, so I will give you some random thoughts then I have been pondering lately.

• Can a paraplegic be a standup comic? Could they sue for discrimination?
  
• There are too many active words in our culture and I feel left out. A person is supposed to "stand up for themselves," or "stand on their own two feet." Then there is that song, "You'll Never Walk Alone." Walk alone? How about walk at all?
  
• Why do people insist on talking to me very loudly and slowly? Yes, my legs don't work but my hearing and cognitive ability are just fine.
  
• If I asked my doctor about every prescription I see advertised, he wouldn't have time to actually examine me.
  
• Why do the frail and elderly always try and help open a door when the perfectly fit people parade around as if they don't even see the person in the wheelchair?
  
• Why does a fertilized egg left over from a fertility treatment have more of a right to life than I do? That's basically what opponents of stem cell research are saying.
  
• Is it fair that people with MS often have to choose their drug therapy based on what they can afford? Shouldn't every one be able to access the drugs that benefit them the most? Does that make me a crazy liberal for thinking that?
  
• Should I feel guilty about wearing disposable, paper underwear? Will the environmentalists insist that I wear cloth diapers?
  
• Daycare for children may be expensive, but daycare for adults is often nonexistent.
  
• A pessimist is never disappointed.