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.

Potty People Parking

When I was a little kid, I thought that the universal handicapped symbol was a person sitting on the toilet. It made sense to me that someone who needed to go the bathroom required a parking space close to the building. Now, I have my own tag that matches the parking spaces and I wish that my only problem was having an urgent need to get to a restroom. Being a "potty person" isn't all that great.

It seems that whenever I pull into my special spot, there is a senior citizen glaring at me. "How dare she park in that spot? She isn't even old." To make matters worse, I no longer drive so my young aide jumps out of the car and goes to the trunk to get out my wheelchair. Only when they see me being lifted out of the car and into my chair to they stop staring. I make it obvious that I have been watching them watch me and I hope that they feel badly now.

It used to be even worse for me when I was still driving and using a cane or a walker. Back then, people would do more than just stare. Old men would bang on my window until I rolled it down and then they would inform me that I was parking in a handicap spot and that was illegal. When I showed them my parking tag, they told me that it must not be mine. The first time this happened to me, I was rather upset. The second time, I was angry. I told the old coot that that ad was indeed mine. I had filled out the proper paperwork, had it signed by my doctor and paid my money to the DMV. The reason that I had the tag was between me and my physician and it was none of his damn business what the reason was.

When I was still walking, I needed to park close because big box stores and the grocery store require a lot of walking. I couldn't count on being able to use one of the store's electric carts. They would either all be in use, not be charged or I would have to go through the same confrontation I had for a parking space. Now that I'm on wheels, I need the extra room that a handicap spot provides. There's a reason they have those blue hatch marks between spaces and my pet peeve is when someone parks it in that extra space. You would think that a fellow "potty person" would be a little more thoughtful.

You and I have seen people parking in handicap spots who seem to be perfectly fine, and perhaps they are. However, many with handicap tags have them for a reason and able-bodied people should respect that. Please let the "potty people" have their parking spaces. We have enough other problems to handle.

No Weigh

When you go to the doctor's office, the nurse asks you to step up on the scale so she can get your weight. When I go to the doctor's office, the nurse asks me to step up on the scale and I tell her that I can't. This always perplexes them, although I doubt that I am the first person to have this problem. They usually have a walker surrounding the scale to help someone who is unsteady on their feet, but that's it. Occasionally, a nurse will actually say aloud that I am too big for the pediatric scale in their office. (that's the one that is part of the table) Realizing that there is no way that I can be weighed in their office, they ask me if I know how much I weigh. I provide them with a number, but it is now three or four years old. That just wasn't good enough for administering chemotherapy. I had to get weighed.

So, the doctor wrote me a prescription for me to go to the hospital and be weighed. I was told just to go to the main registration desk, show them the prescription and it would be taken care of. Knowing how things work in the real world, I was skeptical. Unfortunately, I was also right. The woman at the reception desk had no idea what I was asking for and told me that she didn't think they did that. She then suggested that I try down in the emergency room. My aide pushed me all the way down to the emergency room where we were again told that they didn't do that there. This person even added that she didn't remember ever getting that request in the 20 years she had worked at the hospital. We were sent back to the registration desk. This time the person at the desk give us a phone number that my doctor's office could call to arrange for me to be weighed. I had my aide make the phone call because I knew that my patience was wearing thin. I am thankful that that office was sympathetic to our plight, promised they would get it taken care of and told us not to leave until we had gotten what we came there for. We ended up returning to the emergency room, but this time someone met us and brought us back to a room with a hospital bed that had a scale. My aide transferred me to the bed, the nurses weighed me, I was transferred back to my chair and then wheeled out the door. All that it only took a hour of my time and a little of what was left of my dignity.

I resent being treated like a second class citizen because I can't stand. For medical personnel, very few are empathetic to my situation. They view and treat me like a problem that they don't want to deal with, not separating the person from their condition. I don't want to be difficult. I just want the same care that any patient deserves. Wouldn't it be more productive if staff brought up problems they were having dealing with the disabled to their supervisors? With the population living longer and a giant bunch of aging baby boomers, limited mobility problems like mine will become more common. Healthcare should lead the way in accommodations instead of bringing up the rear. I hope that someday when I go to the doctor's office someone will say "we can get your weight right here." It sounds simple enough.

Aging Gracefully

People who were diagnosed with MS 20 years ago or more were told to lie down and wait for death. Funny thing is many of those people are still around. Some of them are actually better off than I am without the benefit of the disease modifying medications that I have taken from the beginning. Just more evidence that this disease varies widely from person to person.

The one thing that these veterans with MS and I have in common is that we've had to deal with issues that most people do not have to face until old age. For example, I was only 30 years old when I had to use a four-point cane after an acute exacerbation. Later, I had a walker and then a wheelchair. I had to learn to think of these objects as tools and not symbols of my declining condition. The same acceptance process was necessary with my bladder issues. I needed to make the decision that it was preferable to wear paper underwear to staying home where I would always have access to a bathroom. People often tell me about a parent or grandparent who doesn't want to make the kinds of accommodations that I already have. While I understand their desire to stay independent, they ultimately become a prisoner of their own stubbornness. Plus, I don't feel badly for someone in there 80s who is having difficulty walking or controlling their bodily functions. I've already been through all those things and you don't find be complaining (except on my blog).

I even read an article in the MS Society's Magazine several years ago about this very subject. The article told me what I already knew, people who have lived with MS are better prepared to deal with the natural process of aging. Taking that into consideration, I really am "differently abled."

Summertime, But the Living’s Not Easy

Summer is definitely here with its long, sunny days. There was a time when you would find me worshiping the sun and basting with suntan oil, but no more. Having MS makes me very sensitive to the sun and especially the heat. When I overheat, I'm a mess. I turn beet red, I become floppy and very tired. Basically, the heat makes all my symptoms worse. Some experts even call it "a pseudo-exacerbation." All I know is that it is something I try to avoid.

One symptom in particular that the heat definitely affects is fatigue. It is very difficult to explain what MS fatigue is like. For myself, I got a preview of it when I had mono back in high school. I remember simple tasks like taking a shower being absolutely exhausting. With MS fatigue, I can have a good night's sleep, wake up and have breakfast, then all I want to do is go back to bed and take a nap. Even the Federal government acknowledges this fatigue and accepts it as a justification on disability applications. There are medications like Ritalin that can be taken to combat the symptom, but most people don't like how jittery it makes them feel and how hard they crash afterwards.

Fatigue can be a very isolating symptom. It's hard to explain to other people and it limits your participation in everyday life. You're always concerned when you have a scheduled event that you may not have the energy for it. There are strategies that you can use to conserve energy and make sure that you're awake for the meeting, party, dinner etc., but they don't always work. Sometimes, the only thing that will make you feel better is to lie down but that makes you feel guilty like you are letting everybody down including yourself. It can also make you feel angry, but anger and guilt don't change what is. You have MS and it makes you tired; that's the reality.

So, my reality for this summer and subsequent ones is to stay indoors in the air conditioning. I will go out when I have to and I won't beat myself up when I need to take a nap. After all, making accommodations is what my life with MS is all about.

To read more about MS fatigue, go to http://www.nationalmssociety.org/multimedia-library/brochures/managing-specific-issues/download.aspx?id=54

Not So Fine Motor Skills

I purchased a new cordless phone for the house last week. Once I brought it home, I had to have someone charge the phone and set the system up. Then, I had to actually read the manual and program the phone with my frequently called numbers. This would probably be a fairly simple task for most people, but it just wasn't that easy for me. I read through the manual and needed to keep going back to it when I started using the phone. To make matters worse, my fingers had difficulty pressing the right buttons. I had created a list of the numbers and names for the phone's directory, but I had to input them slowly to avoid making mistakes. I have a bad tendency to invert numbers, so the whole phone number thing is a constant challenge to me. I often copy down phone numbers only to find that the number I wrote down is the wrong one. My adaption to this problem is to always repeat the number back to the person with whom I am speaking.

Cognitive difficulties combined with hands and fingers that no longer work very well is a bad combination. At least on the cordless phone, the buttons are fairly big. With many technologies becoming smaller and smaller, I feel left out. I have difficulty using many cell phones and my MP 3 player has a scroll function that I can barely feel with the decreased sensation in my fingertips. I even am finding it harder these days to enjoy my PlayStation because of the little buttons. I do own a Nintendo DS that uses a touch screen instead of buttons and I have even tried a Wii, only to find that my hand-eye coordination is worse than ever too. I guess that I shouldn't be surprised.

The thing is that I am a technology junkie. I love my toys and I am frustrated by my diminishing dexterity. I have a digital camera that would be considered ancient by most, but I am still using it because it is big and so are its control buttons. I have looked at some of the new, fancier cameras out there and they are far too tiny for me to use. I may need to buy a Fisher Price model when mine breaks down or becomes obsolete. I hope that when inventors are trying to make something smaller and better, they stop and consider people like me who want to keep "in touch" with technology.

Going Green

I am reading "Living Well with Montel" by talk-show host, Montel Williams. Most people know that he was diagnosed with MS in 1999, but his disease and mine are very different. His symptoms are invisible ones such as pain and numbness and mine are very visible, i.e. I can't walk. Anyway, I wanted to see what he had to say about healthy living and its affect on chronic diseases. I find myself in this mode fairly often where I decide that the conventional medical treatment isn't doing enough for me and I need to explore complementary medicine.

Montel holds a mirror up to me and my fellow Americans and says that we have two major problems, poor eating habits and a sedentary lifestyle. Unfortunately, he's right. I know that for me personally, I don't eat well and never have. I'm not a big fan of vegetables, especially anything orange. As for the sedentary lifestyle, of course I'm not walking 5 miles a day, but some days I'm pretty lazy about exercising my upper body. The good thing about the program in the book is that it's all about taking baby steps, changing bad habits slowly.

I decided to try a recipe for a smoothie in the book designed to get more fruits and vegetables into my diet. A smarter person would have started off halving the recipe, but not me. If Montel could do it, so could Lydia. I would be drinking myself to better health. My aide wrote down the ingredients we would need and off we went to the grocery store. We needed two bananas, three oranges (and this is the best part), one head of romaine lettuce. You're probably already salivating. We brought home these precious, life-changing ingredients, cut them up, shoved them in the blender, added water and let the machine rip. Needless to say, the end result did not look very appetizing. It was algae green and smelled odd, but that was not going to stop me. We poured a small glass of the elixir, I took a deep breath and then a big gulp. I instantly made a face before I could say, "it's not that bad."

Now, Montel says that this is a great way to get veggies into your children and they will love it. I think a parent might be charged with child abuse. The only reason that I didn't spitting the goop out was the cost of the ingredients. Also, I'm an adult technically and we don't behave that way. I understand that my perception of what tastes good is biased by my love of fat, sugar and salt. After I tried the drink, I was really craving a double cheeseburger, French fries and a tall chocolate shake to get the nasty taste out of my mouth. I don't think that it could've been much worse if I had used Brussels sprouts instead of the lettuce.

If you are to go into my refrigerator right now, you will find a big jug full of a dense green liquid. I have drunk several tall glasses of it, but I think it's multiplying in the container. It hasn't given me more energy or greater sense of well being, only gas. My body must not be only programmed for things that are good for it. Oddly enough, I haven't been able to convince anyone else to try it and I'm a bit worried that it will clog the sink. Maybe it will make good fertilizer?

I Am NOT One of Jerry’s Kids

I guess it's what I get for trying to be good. The other day, a woman asked me why I was in a wheelchair and I told her I had MS. Then she said to me, "Oh, you're one of Jerry's kids. I watched that telethon every year." I just smiled weakly and said nothing. It makes me tired having to explain myself and my condition all the time. Sometimes, I can understand why people with disabilities would rather just stay home and out of sight. At least at home, people I interact with know me and my situation. We take for granted things that might seem strange to an outsider.

I can vaguely remember a time when I was fairly unfamiliar with the medical acronyms myself. In fact when I was told I had MS, I thought about the kids and the telethon briefly, but decided that wasn't the right disease. I remembered that MD stood for muscular dystrophy. For a while, I told people that I had multiple sclerosis so they wouldn't confuse it with the telethon disease. However, when I had to fill out what I had on a form I would put MS because I wasn't sure how to spell "sclerosis." It's really not a good idea to give difficult names like Alzheimer's and multiple sclerosis to diseases that include cognitive dysfunction. We're confused enough already without having to be in a medical spelling bee. Fortunately, there's spell check because there are some days when I spell a word and can't decide if it's correct or not. It makes you appreciate the complexities of the simple task like writing down a word.

Well, my train of thought has totally derailed but that's the way it goes for me in the late afternoon. Blame it on my disease, my age, the alignment of the planets, whatever, but remember you won't be seeing me with Jerry Lewis anytime soon.

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.

Good Humor

I have never quite understood the phrase "at least you haven't lost your sense of humor." How would I lose my sense of humor in the first place? It's not something tangible like a set of keys. To me the phrase also implies that you are basically messed up both physically and mentally, but you can still laugh at yourself. People usually use the phrase after I've said something that makes them a little uncomfortable like "hey, I may be crippled, but at least I get the best parking spaces."

Somehow as my disease progressed, my sarcasm began to be perceived as humor. Now I'm told that I have such a good attitude, when I used to be told not to be so negative. Only people who knew me before my disabled detour recognize the acerbic, sharp wit that has always been a part of me. They know when I am really not feeling well because I can't get out the one-liners. My husband and I are particularly good at bantering back and forth and to the casual observer it sometimes seems that he is being overly mean to me. The truth is it would be wierd if he stopped doing it just because I have MS. So much of our lives has been turned upside down that at least we have this one thing that is still the way it was before.

The fact that I can find humor in my situation means that I am creative, twisted or a combination of both. I like to describe what comes out of my mouth as the result of "selective tourette syndrome." With all the scarring on my brain, who's to say that I always know what is and isn't appropriate. I do know that I won't be doing standup comedy anytime soon. (if I have to explain that, it doesn't seem as funny)

Talking the Talk with Speech Recognition Software

There is a type of assistive technology that I use most every day. It is easy to use and relatively affordable. I am referring to speech recognition software that I began using back in 2002. At the time, I could still type fairly well but I knew from experience that my fine motor skills could be affected during an MS exacerbation (attack). I requested the software and a microphone from my employer as a "reasonable accommodation." My motto has always been that crisis management doesn't mean you wait until a crisis to figure out how you'll manage it. In other words, I began using the software before I needed to use the software and I'm glad I used that strategy because now I am very proficient talking to my computer.

Using speech recognition software reminds me of the old days of using a computer. The adage back then was that the computer was only as intelligent as the person using it. The same holds true for speech recognition. The software just tries to put down the sounds it hears, making its best guess. It can't interpret mumbling or stammering and it certainly can't make babbling or rambling logical. Patience is more than a virtue when using speech recognition; it's a necessity. If I start yelling into my microphone "that's not what I said" or begin to swear, my rantings will appear up on the screen.

Here is my advice for making speech recognition software work for you. First, don't look at the screen when you're dictating. You'll find yourself using an unnatural speech pattern and the quality of the recognition will be poor. You're better off to dictate in sentences or even paragraphs and then go back and edit. Secondly, take the time to train your software to learn your speech patterns. Things such as a regional accent or colloquialisms make it necessary for your computer to understand how you talk. Finally, and most importantly, manually proofread your text before you send it off by e-mail, send it for publication etc.

Like it or not, computers have become an important part of our everyday lives. Speech recognition software enables someone like me to stay connected to the world without dependency on my fine motor skills. I certainly would never have attempted this blog without it. So, if you are using Microsoft Vista, check out the Ease of Access section under the control panel and there you'll find a sophisticated speech recognition program for you to try. All you need is a microphone and a bit of persistence, then you too can start shouting at your computer.

Learn more about speech recognition software

https://www.mymsmyway.com/tech_connect.html

http://www.microsoft.com/enable/training/windowsvista/sr.aspx

Someone To Watch Over Me

I can't do much for myself anymore. You name it and I can't do it. When I wake up in the morning, I need assistance with getting out of bed, showering, dressing, grooming and even getting my pants down to go to the bathroom. During the week, I pay a young woman to come in and help me between 10:00 and 3:00 while my husband is at work. I had been going to an adult daycare, but I actually got kicked out because I was too physically disabled. Most of the clients there were in their 70s and 80s. They were ambulatory and in the early stages of Alzheimer's or dementia. It certainly wasn't my first choice for care, but it was a helpful backup and a few days ago I could've used one.

My usual keeper was struck down with a stomach virus and couldn't come to work for me. This certainly put me in a jam because the people I know who aren't working are either older or they have MS like me. Neither of those two groups are up to the lifting required to help me. Even when I was going to daycare, I had to give them a week's notice so they would have adequate staffing. People like me are not allowed to be spontaneous; we need a plan for everything.

I started thinking that there must be a better way for me to stay at home and be independent. Since there are no original ideas left out there in the world, it turns out that other people have been thinking about this problem too. The Japanese are working to develop robot caregivers for the elderly and the physically disabled. You've probably seen the creepy-looking Asimo from Honda, but there is also a creature called Twendy One. Thus far, the company responsible for Twendy One has spent seven years and billions of dollars on research and development. The makers of Twendy One in particular even demonstrated their creation helping a man from the bed into a wheelchair. Sounds cold, right?

Well, there's still a long way to go. I watched the footage on You Tube and there is no way that the human is really disabled. He put his hands on top of the robot's hands and that was enough to lift him up and pitted him into the wheelchair. I assure you that such transfers are much uglier than that. For me personally, I have to be lifted from under my armpits. A hug is best. Beyond the technical difficulties is the issue of cost. The current price tag estimate for this piece of technology is $200,000. If I could afford that, I could have around the clock paid human caregivers.

I won't be putting my order in for a robot anytime soon. This is what bothers me about new assistive technology. What good is a wonderful new tool like a caregiver robot, a power wheelchair that climbs stairs ($30,000), a track lift system that can help with transfers and many other items if nobody can afford them? My health insurance, which is pretty typical, has a yearly allowance of $1000 for durable medical equipment. Even Medicare, if it approves the equipment, only pays 80%. Obviously, companies aren't spending all this money without expecting a return on their investment, so somebody will be able to afford these devices. Maybe the hospital or nursing home of the future will be staffed with robots? Let's just hope that it doesn't end up like "I, Robot."

Watch Twendy One: http://www.youtube.com/watch?v=GNorXg7vITc

 

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.