More MS news articles for Dec 2001

Starting a scary journey

http://www.tennessean.com/local/archives/01/11/11587875.shtml?Element_ID=11587875

Sunday, 12/23/01
By GAIL KERR
Staff Writer

About the series

One year ago this month, Tennessean local news columnist Gail Kerr was diagnosed with multiple sclerosis. This three-part series chronicles her emotional journey of coming to understand and learning to live with a chronic illness.

It's not just a story about MS. It's a story that anyone who has gone through a medical crisis can relate to: One day you are fine, the next day you are introduced to a whole new, scary world.

Today, Gail writes about starting that frightening journey. Tomorrow, she'll write about learning to understand and live with multiple sclerosis. On Christmas Day, she'll write about getting on with her life.

First of three parts.
(Part 2, Part 3)

Living with the disease multiple sclerosis is not hard. I give myself a shot every day, do what my doctors tell me, and take good care of myself.

Living with fear is the hard part.

Fear that part of my body will stop working. Fear of what's next. Fear of what's coming in one year, five years, five decades. Fear of wheelchairs, and canes and handicapped parking places.

Fear tries every day of my life to eat away at my soul, to depress me, scare me. Make me crazy. And every day, I fight back, hard, with facts and information and hope.

Just like the character played by Martin Sheen on The West Wing, I have relapsing-remitting multiple sclerosis. I was diagnosed one year ago, on Dec. 5, 2000. For me, that is the day that will live in infamy.

MS is misunderstood. Before last December, I misunderstood it, too.

Every single day in Middle Tennessee, people are diagnosed with some sort of disease. Whether it is MS or cancer or arthritis or lupus, we who have walked this road know how much we share emotions, challenges, undoable moments.

All in search of understanding by ourselves, and by the people around us.

This year has been a scary journey filled with belly laughs and deep sobs. It's been a journey of learning things I would have much preferred never to know. I am a different person today than I was before my diagnosis.

But I'm not MS. I'm still Gail. And this is my story.

What happened

It was Wednesday, Nov. 22, the day before Thanksgiving. My husband, Les, and I were driving to Oxford, Miss., to go see Ole Miss play Mississippi State in the annual Egg Bowl.

We were pumped Les hadn't been back to Ole Miss, his alma mater, in years. I had never been there.

It was to be a romantic, getaway weekend to celebrate my job change from the stressful city editor's job to being a columnist. My column had been running for right at a month, and I could not have been happier.

We stopped for gas and a bathroom break. I had been reading a book, Michael Crichton's Airframe. When I looked up, my eyes were blurry. I couldn't read the advertising signs on the gas station walls very well. I mentioned it, and Les said his eyes were bothering him, too. Dust and road grime were causing the problem, we both agreed.

But it didn't get any better. By the time we got to Oxford, my left eye was hurting and my vision was murky. I wear the kind of contact lenses that you toss after two months, and I couldn't remember the last time I had changed them. Probably that was the problem, I thought. Or maybe I needed bifocals. Or it was the sinus infection that was bothering me.

I did what I would do a million times over the next few months: try to find a way to blame something or someone for what was happening.

By game time, the vision in my left eye was deteriorating. But it was a rainy, gray day and I just assumed that was the problem. After the game, back in the hotel room, I picked up my book.

I couldn't read it.

On Friday morning, I covered my right eye and finally took a real look through my left. I knew I was in trouble.

It was like a gray curtain was slowly being lowered over my vision. There was a distinct line. Above it, I could not see a thing. Below it, I could see, but it was blurry.

For the first time, I was scared. While Les waited in a huge McDonald's line to order us some breakfast, I called my primary care doctor on my cell phone to see if I could get in late that day when we got back to town.

They were closed. The nurse on call referred me to the Baptist Hospital walk-in clinic.

The doc-in-the-box was deserted when we pulled in around 5 p.m. I sent Les home, thinking there was no point in him just sitting around waiting for me. I told him I'd call him when I was done. That is the last time I would visit any doctor without him holding my hand and sitting by my side.

The doctor was young. He got the sinus infection right. But he misdiagnosed my eye by 500 miles. He sent me home with some eyedrops. I was relieved, sure everything was going to be fine.

But on Saturday morning, I could not see at all out of my left eye. I could not see light. I could not see a thing except a gray wall.

I was terrified. The word ''blind'' never entered my mind.

I called my ophthalmologist's office, and the on-call nurse called me back with directions from the doctor: Stop using the eyedrops. Come to the office as early as possible, 7 a.m., on Monday.

Getting diagnosed

I've been seeing the same ophthalmologist since I was a kid. He's a kind, older man, Dr. Roy Ezell. He dilated my eyes, looked here and there. When he shined that incredibly bright light in my left eye the one that always makes you tear up and blink I couldn't feel it or see it.

''Gail,'' Dr Roy said, ''you've got optic neuritis. It's a major inflammation of the optic nerve. I have to tell you: This is over my head.''

''What causes it?'' I asked, startled that Dr. Roy couldn't fix it right then and there with a nice little drop or pill.

Dr. Roy told me I'd need to see a neuro-ophthalmologist as soon as possible. And that often, optic neuritis is caused by MS.

MS?! What? What the hell is MS? I was just stunned. My new best friend, Mr. Fear, made himself at home deep in my gut.

I left with an early afternoon appointment with Dr. John Bond III. That he would see me so quickly just made it all scarier and very, very surreal.

I hugged my sweet husband as hard as I could in the hallway. I was weeping, Les was fighting not to.

Dr. Bond repeated the diagnosis of optic neuritis, ordered that I get an MRI, prescribed a three-day home infusion of steroids, sent me to have blood drawn to rule out other diseases, and said it could be MS. Or it could be something else.

Optic neuritis, Dr. Bond said, heals back to 20/20 vision in 80% of patients. Reassuring. But he warned me that many people are left with some damage.

The next morning, I went to Baptist Hospital to have my first MRI. It stands for magnetic resonance imaging and is a remarkable way to diagnose problems in the brain, using magnetic fields to create images. There's no radiation involved because it uses magnets. Dye is often injected in your arm halfway through the procedure, to create a better contrast on the film.

You have to take off all your jewelry and wear no metal. You lie down, flat on your back, arms tucked tightly to your sides, like in the Olympic luge event. Earplugs are stuck in your ears not a confidence-boosting sign. They roll you into a hot dog-shaped cylinder. It is quite confined.

Right above your face is a small mirror, designed so you can watch your feet if you so desire. Why anyone would want to, I'm not sure. You're told to keep your head perfectly still, breathe normally, and not to wiggle.

The attendant asks, ''Are you OK? Are you comfortable?''

''Are you nuts?'' is not the correct answer.

And then it starts. It's like a private performance of Stomp right on top of your forehead. It's as loud as an F-14 taking off, lasts about 45 minutes, and leaves you feeling like your eardrums have been blasted. Worst of all, you don't have any information right then.

In my case, I got information the next day, from Dr. Bond. He called me at home. A sure-fire sign that something is dreadfully wrong is when a specialist calls you personally to give you news. Not a good feeling. Not at all a good feeling.

All I could hear was the ringing in my head. Fear.

Dr. Bond told me the MRI was not normal, that it showed ''multiple white spots'' on my brain. Those spots, he said, can be indicative of multiple sclerosis. He told me I needed to see a neurologist.

More referrals. More calls to the primary care physician. Health care is basically like a race: The first person who gets to the right office, with the right insurance precertification, wins.

I began a love affair with the wonderful layer of people underneath the doctors who make sure I'm taken care of.

The paperwork people, those nurses and clerks who make it all work, really run the health-care system.

But before I could see a neurologist, we had to try to zap my eye back to normal.

Treating my eye

''Home infusion'' sounded like some bizarre sort of jazz.

I didn't know that ''home infusion'' meant having a megadose of steroid bombs dripped into my veins twice a day for three days.

Steroids are commonly used with a ''relapse'' of MS. They don't cure it, or stop permanent damage, but they do make the body come back more quickly than it would by itself.

There are two steps: one, drip a huge dose of intravenous steroids. Then take a ''taper'' of oral steroids over a five- or six-day period, to bring your body slowly off the stuff.

Heroin at least would feel good.

Our home health-care nurse, Camie, was wonderful. Her supervisor, it turned out, went to junior high with me. It was so bizarre that this person who once had a contest with me at a slumber party to see how many Red Hots we could keep in our mouths was now in charge of getting me help.

Camie came to our house and taught us how to mix the IV bag, attach it and start the drip. She put an IV ''port'' in my left arm, unfortunately right in the bend of my elbow.

Another new friend. Goody. Particularly fun to sleep with.

We couldn't get the IV to drip. The pole just wasn't tall enough. Les, a singer, songwriter and band leader, solved the problem with one of his microphone stands. It looked hilarious but worked. It's good to marry a musician.

The good news was that within a few days, the pain in my eye was gone. The bad news was what that dose of steroids does to you.

You WANT to iron. I wrote my Christmas cards in 45 minutes flat. I was hungry, edgy and talked too fast.

Suddenly, I was a high-strung person. One who wanted to clean house.

But it was worth it. Within a couple of weeks, I could see a little light. I pictured little squirrels in my eye, just knitting away to heal that optic nerve.

I started all sorts of foolish tests to try every day. After my shower, for example, I'd stand in the exact same place and see how much I could perceive of the ''SEATTLE'' print that hangs on the bathroom wall. The day I could see yellow sailboats was a very good day. I couldn't tell they were boats, but I could see yellow.

Likewise, the wording on the Weather Channel is the same size every day. I was obsessed with covering my right eye to see what words I could make out on the Weather Channel with my left.

After the home infusion was done, I wanted to go back to work. I had been off a week, writing columns from home. I was scared the column would have to stop, and had even called my boss, Frank Sutherland, to talk about that.

It was a short conversation because I completely broke down.

He made it clear that the paper would give me ''whatever you need. Whatever it takes.''

I vowed after that phone call that I wouldn't let him down. I was going back to work.

I almost backed out the next morning. I started crying in the shower, nearly hysterical. I felt like Jell-O, a big quivering blob of fear. What would people say about me? How would I get to work, since I couldn't drive? And ultimately, how was I going to live with this? What if I never got all my sight back?

Hello, Mr. Fear. Welcome to my shower.

I decided to call in sick.

But I knew that if I called in sick that day, I would call in sick the next day. And the next, and the next and the next. I reached way down deep into my gut, into a place I'd been a few times before. The place you get strength. I got dressed. My husband drove me to work.

My eye took two months to heal. I can read 20/20 with my glasses or contacts in nice, bright light. But as Dr. Bond said, I can't see an elephant on a gray day.

Colors appear washed out when I look at them with just my left eye. Black words on gray paper are invisible to me. My depth perception remains off I will swear the truck coming up on my left is going to hit me. The optic nerve in that eye fires slightly slower than my right eye, so it throws things off.

The worst thing I've done is scrape the right side of my car on a telephone pole that I would have SWORN was far enough away.

The biggest inconvenience is that I do not drive any more at night or on really rainy, messy, gray days.

I can live with that.


Days are filled with lessons and gratitude, as is she is getting on with her life

http://www.tennessean.com/local/archives/01/11/11635737.shtml?Element_ID=11635737

Monday, 12/24/01
By GAIL KERR
Staff Writer

Second of three parts.
(Part 1, Part 3)

The first week back at work was exhausting.

I had been at home for a week after Thanksgiving, after losing the eyesight in my left eye. After a three-day treatment of intravenous steroids, tests and referrals to specialists, I knew it was time to get back to a routine.

But I was constantly leaving to go to other doctor appointments and tests -- the most important of which would determine if I really did have multiple sclerosis. I was so tired, I took a long nap every afternoon. MS causes fatigue, but it wasn't just the disease that made me tired that first week.

It was learning to live with this new thing in my life.

I was referred to Dr. Curtis Hagenau, my fabulous neurologist. The trick to managing this damn disease is finding a good neurologist whom you trust and can communicate with. That's Dr. Hagenau all the way. The other trick is starting a treatment program immediately, and staying on it.

Before I saw him, he sent me to have a second MRI. The first had shown the ''white spots'' that are the sclerosis. The first MRI was frightening because it was so new. The second wasn't as bad, but it still sounded like an encore performance of Stomp on my head.

On Dec. 5, my husband, Les, picked me up at work and we went to see Dr. Hagenau for the big talk. We knew it probably was multiple sclerosis. Still, I held out hope that the doctor would say it was all just a silly mistake, that a simple pill would make it all go away.

No such luck.

Dr. Hagenau took a lengthy medical history. He had me hold my hands straight out. He asked me to walk for him. He looked at my eye and took notes on what I could see at that point (barely a shadow and some light).

Then he took us back to his office, where my MRI was attached to a light machine. That's when I saw the white spots on my brain. It is, he said, MS. Relapsing-remitting multiple sclerosis.

Dr. Hagenau spent a long time with us. He drew several charts to explain how MS works, and told us about the three drugs we would choose from to start treatment.

His nurse, Cindi Hughey -- one of the kindest people I've ever met -- was gentle and said she'd help us get insurance approval after we chose a treatment plan.

They piled us up with brochures and books from the National MS Society, and videos and booklets from the pharmaceutical companies. The doctor told me to stay away from the Internet because lots of bad information floating around on it would just scare me.

He answered our billion questions, was patient and said there was no doubt about it. I had MS.

I made it to the bathroom outside his office before I cried. I cried a lot that day. Les was strong and gave me all he had. It was so hard to tell my mother and sister. It was so hard to tell my bosses here at the paper.

I was so angry. Why couldn't so-and-so have it? He's a jerk! Why me? Why should I get this, when I'm a good person?

Dr. Bond later made me feel better when he told me that there was one thing all MS patients share: ''Only good people get MS.''

I cried until my eyes were swollen, my cheeks raw, and we ran out of Kleenex. I swore and cursed until the dog left the room.

Then I went about getting on with my life.

What MS is

Multiple sclerosis is not fatal. It isn't going to kill me. It isn't contagious.

It isn't hereditary that they know of. It isn't predictable. There is no cure yet. It has nothing to do with Jerry Lewis.

It is a chronic illness. It can be debilitating. Or not.

More than 300,000 people have been diagnosed with MS. The National Multiple Sclerosis Society estimates that 200 people are diagnosed each week, so the grand total is probably much higher than they know.

MS is a disease of the brain and spinal cord -- the central nervous system. For some reason that scientists don't fully understand, MS makes your immune system attack the central nervous system.

It eats away at the myelin, which is sort of the brain's insulation. When the myelin gets eaten away, it forms the white spots -- those are the sclerosis, or lesions. When there are more than one, it is multiple sclerosis.

Think of it as a table lamp, attached to a cord and plugged into the wall. The lamp is the body. The cord is the nerve. The insulation on the cord is the myelin. The plug is the brain.

If you strip the insulation off the lamp cord wiring, and then plug in the lamp, the cord is going to go haywire. The electricity isn't going to the lamp. It's flailing around the air, making the cord jump and act oddly.

When MS eats at the brain myelin, nerves don't fire right. And when the nerve doesn't do what it is supposed to, some part of your body isn't going to work right.

In my case, that was my optic nerve and eye. Others with MS experience numbness or pain in the arms, legs, feet or hands. It can cause paralysis. It can cause tingling in your face. It can cause twitching and extreme pain, falling down, trouble walking. It can make your legs so stiff they don't function. It can cause a burning feeling in the bottoms of your feet. It can cause cognitive problems.

Fatigue is quite common in people with MS. Heat -- even a too-hot shower -- can cause MS symptoms to flare and make you feel exhausted.

Anywhere there is a part of the central nervous system, MS can make it go haywire.

When that happens now and then, it's just a symptom. But when an intense, prolonged episode happens, like with my eye, it is called a relapse, or an exacerbation. Most relapses eventually ''remit,'' and that's why they call it ''relapsing-remitting MS.'' Every time you relapse, the nerves may end up damaged. Like my eye.

What gets damaged may never heal. Some nerves can be severed. There is no known way to regenerate myelin, or nerves. Sometimes the body does it on its own. Sometimes it doesn't.

There's no way to predict when a relapse will happen. There's no way to see it coming. None. That is what makes this disease so frightening.

More women than men have it. Most people get it before they turn 40. (My 40th birthday was Aug. 22.)

The best that researchers can figure is something triggers the genetic code to become MS. Many theories propose that a virus is the trigger. Enormous amounts of money are being spent all over the world to research MS.

Diagnosis of MS used to be just about impossible. In early days, it was diagnosed only at autopsy, when the sclerosis -- dead spots -- on the brain could be seen. Before there were MRIs, MS was diagnosed mostly anecdotally.

If people had more than one episode in which something was not working in their bodies, MS was suspected. Many people were diagnosed as ''possible'' or ''likely'' MS. That's still true today.

The diagnosis comes after a neurologist takes a complete medical history, and documents at least two known relapses. Or, as with my case, an MRI (and sometimes a spinal tap) shows it clearly is MS.

I was lucky. Even five years ago, doctors might have said ''you have optic neuritis,'' given me a round or two of steroids, told me they didn't know what caused it, and sent me on my way. I might very well have been in bad shape before MS was diagnosed.

There are four levels of multiple sclerosis:

ï Relapsing-remitting. This is what I have. It's the most common form of MS. It's what the president on The West Wing has. Basically, you have a relapse (also called attack, exacerbation, flare). Then you get better. Recovery can be partial or total.

ï Secondary-progressive. This is when relapsing-remitting MS gets steadily worse. Attacks become more frequent and more severe, but partial recovery is still possible. Statistics traditionally have shown that about half of those with relapsing-remitting MS will end up with secondary MS within 10 years, and that after 25 years, 90% will end up in the secondary stage. But those statistics are outdated because of the newness of the treatment drugs.

ï Primary-progressive. The symptoms of MS do not get better. From the beginning, the disease is steadily progressive. Some people live for years in this stage before they are diagnosed, because MS symptoms are so tricky and numerous.

ï Progressive-relapsing. This is quite rare. It's when the disease is slowly progressive from the very beginning, but also causes acute and obvious attacks.

How it is treated

In 1890, the life expectancy of someone with MS was five years. In 1970, it was 30 years. Today, people with MS can expect to live out their life to the end of their days. That's because of the new treatment drugs that are available.

Until the 1990s, there was virtually no treatment for MS. There were steroids for the relapses, drugs for fatigue and shaking, and that was about it.

Today, three drugs are approved to treat relapsing-remitting MS. They are called the ABC drugs: Avonex (approved in 1996), Betaseron (1993) and Copaxone (1997). Each one has the same aim: Reduce the frequency of relapse and limit permanent damage. If you don't relapse, you don't have permanent nerve damage.

All three are administered by injection. I flipped out when I realized I'd need to give myself a shot every day. But after I got past that, I was -- and am-- so incredibly grateful for these drugs. Am I lucky I was diagnosed when I was? You bet.

Betaseron and Avonex are both Interferon drugs. Interferon is a naturally occurring protein. Both of those drugs share a common side effect: flulike symptoms.

Avonex is a weekly injection, and the shots are in the muscle. That means the needle is pretty long.

Betaseron requires a subcutaneous shot every other day.

Choosing which drug to start is a big decision, made after consulting with your doctor. The important thing is to pick one. Drug treatment is vital with MS.

Copaxone is the newest of the three, and it is the drug I chose after consulting with my neurologist. It is given with a daily injection in one of seven rotating spots on the body (back of the arms, top of the thighs, hips and stomach). It is also a subcutaneous injection -- into the body fat, just below the skin -- so the needle is small and doesn't hurt. Much.

The side effects are minimal, but there are some. For the first few months, each injection left a large, painful red welt on my body. I looked like I had been stung by a wasp after every shot.

And there's a scary reaction, which I've experienced twice. For about 15 minutes, your heart races, your face turns beet-red and it's difficult to breathe. You think you're having a heart attack. No one knows why it happens, but it's pretty common, and it goes away on its own.

Over the year, the reactions have gotten much better. I still get a small, itchy red spot now and then, or a tiny bruise. Sometimes, my arms or legs stay sore for a day or so. But the scary part is behind me.

Copaxone is sort of a decoy drug. It circulates through your body, and the immune system thinks that it is myelin. Instead of attacking my brain, the immune system attacks the drug. It significantly reduces the number of relapses, and I haven't had another since the one with my eye.

Since it comes in a blue box, I have this image of little guys in blue uniforms with a big C on their chest, marching around my body like Mighty Mouse, hollering, ''Here I come! To save the day!''

The injections felt strange and were mighty daunting at first. I had to breathe slowly, count to three, and pop it. Hesitation was my enemy -- think too much about it, and you freak out. I had to learn to properly store and mix the drug, and how to reach each of the seven spots. You have to be able to squeeze about an inch of fat, and do the shot while you are squeezing it.

To do the back of your arm, for example, you sit sideways in a chair. You rest your arm along the top of the chair and roll it forward, so the fat on the back of your arm is squished up. It's not attractive, but it works.

The first time I tried to inject my left hip was amusing, to say the least. My right arm wasn't long enough to reach around and do the shot while I held the fat with my left hand, so I found an alternative method. Use the bathroom counter. Stand sideways. Squish part of your hip against it so fat comes up. Ask husband: ''Honey? Is that enough fat back there?''

As my husband said, there's not a good answer to that question.

By now, I've learned all the tricks: Ice the spot before and after, take my time mixing the drug. I look at it as a Zen way of starting the day -- a way for me to fight back against MS.

The entire process now takes about 15 minutes, and I've learned to hold the ice pack with one hand while I read the paper with the other.

Copaxone has to be refrigerated, so that's changed the way I travel some. It has to be delivered to the drug store by FedEx, so I had to learn I can't just drop by the pharmacy for a refill.

All in all, treatment is no big deal. In terms of staying healthy, though, it's a very big deal. It's the whole deal at this point.


Days are filled with lessons and gratitude, as is she is getting on with her life

http://www.tennessean.com/local/archives/01/11/11635737.shtml?Element_ID=11635737

Tuesday, 12/25/01
By GAIL KERR
Staff Writer

Last of three parts.
(Part 1, Part 2)

''Let nothing disturb you; nothing frighten you; All things are passing, God never changes.''

That's what is written on the St. Teresa's prayer card that my co-worker Carrie Ferguson gave me just after I was diagnosed with multiple sclerosis. I keep it taped to my computer.

During those first few days, especially at work, I recited it to myself almost as a mantra. People kept saying how strong I was. What a handle I had on it.

I let them think that, and did my crying at night. There were a couple of times, though, just sitting at my desk, my feelings were so overpowering that I sneaked into the bathroom and let her rip, and Carrie's prayer card helped me weather those days.

Some people with MS never tell. They fear the social stigma, or that their employers will treat them differently, like passing over them for a promotion. Or, they are scared. To talk about it makes it real.

I chose to be open about it that's just the reporter in me, I reckon. I was feeling all the things you feel when you grieve: anger, fear, the need to talk about it over and over to process it. Most people reacted with warmth, concern, questions and said the best thing you can say to someone who has been diagnosed with something icky: ''I'm so sorry.''

But there were people who were not like that. Some were just thoughtless; others downright mean. There's a tendency when someone is diagnosed with a disease to tell them what to do, how to live, how to feel. It's a natural reaction it helps those who hear the news feel some power over it: ''Oh, well, I won't get that.''

I got so sick of people saying they knew so-and-so whose so-and-so has MS And it was YEARS before SHE had to use a wheelchair. Thanks so much.

A few people made inappropriate jokes or comments. A few tried to share with me their religious beliefs. One person lectured me about holistic healing, and how if I'd ''just make up my mind, I could beat MS.''

Boy, could she have saved those researchers millions of dollars.

A few people spread my news to people I care about, but hadn't yet had a chance to tell. That hurt.

I had just obtained this strange new thing in my life, needed to own it, but people weren't always respectful of that.

And, Lord, help me, don't get me going on the Internet. My doctor had told me in no uncertain terms to stay away from the Internet, with the exception of the National MS Society and other ''official'' type sites. But that doesn't stop people from offering unsolicited advice from various Web sites.

In days of old, Southerners would give one another casseroles when someone was sick. Now, we take each other Internet sites. Often, they contain bad information.

The best thing I did during those early days was make a telephone call to a stranger, who has since become a friend. A mailing from the Copaxone company featured a profile on a local woman, also in the media, with MS.

I made a blind call, told her my situation, and she became a wonderful soul mate who helped me through the first painful days, encouraged me and gave good, solid tips about how to do the injections.

What I learned about how others react to this kind of news is this: Kind people become kinder, nosy people become nosier, self-centered people become more so. I learned not to care much about anyone except the good people. I've strengthened my boundaries.

I'm healthy. I have not relapsed. I live in fear that I will, but I try not to dwell on it.

Every morning, I open my eyes and thank God that I can see. Then I do a little inventory: ''Good morning, toes. How ya doin' today? OK, feet! Can I feel you? How about the legs and arms? Everybody happy and working today?''

And so forth. I know it's stupid. But, hey, you gotta touch base with all your parts now and then.

I get very tired, very quickly. It's just MS. My hands shake when I'm tired, and sometimes, just because they want to shake. It's just MS. My foot goes numb if I stand too long. It's just MS. Those are all things I can live with. The summer heat was a challenge. I learned to cope.

I get more exercise now than I ever did, including an aquatics class for people with MS. The stronger, more flexible, and more able to balance it is, the better my body will rebound if I relapse.

There are some things I can't do. Ever. Give blood and donate my organs. I try not to take it personally that no one wants that stuff anymore.

Getting to drive again was huge. But being home by dark was a challenge, particularly on short, gray winter days. The paper has been tremendous about helping me, with a cell phone so I'm always able to call for help; with a laptop so I can keep working when I have to go home early; with flexibility that allows me to do what I need.

It was hard for me to learn to ask for help, but good to learn to take it. I've asked myself this question a million times: Would I mind if someone asked ME to do this thing for them? Like give them a lift home? No way would I mind. They don't, either. My friends particularly my husband and my three book-club babes have been incredible about hauling me around after dark.

I learned to ride each wave of grief. Just as each wave of an ocean is different, grief is a series of different feelings. There may be similar waves that come later, but you can't ignore any single one that hits. The ocean is mostly calm these days.

I've learned not to blame everything on MS. If I drink too much wine and have a headache the next day, that's not the MS; that's a hangover.

I've learned not to run in fear when I meet someone who uses a wheelchair or a walker. I may have to use those one day, but I may not. I hope not. Those folks are just using every tool they need to keep living, loving, working and playing. If I have to I will, too.

I've learned to listen hard to my body. When I'm feeling worn out, I take a nap. I take a nap just about every day after work. Sometimes, I take two naps. I go to bed when I start nodding off on the couch, even if it is early. At parties, I sometimes have to sit down.

I've learned how much I treasure my husband, my mother, sister and her family, and how incredibly lucky I am that they love me, are all close by, and understand all this.

Anger, for the most part, has given way to peace. I believe in my future. I believe I will stay healthy. I believe in Copaxone.

Fear is there, yes. But also, hope. Lots and lots of hope.
 

© Copyright 2001 The Tennessean