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Archive for the ‘MS’ Category

Disastrous Diagnosis: Part 1 of a Patient Perspective Series

In MS, Multiple Sclerosis on January 25, 2011 at 8:46 am

Being a chronically-ill patient for the past year has taught me something about the medical establishment–it’s extremely flawed. In a several-part series I’ll share my patient perspective as I wind through the convoluted maze of medical tests and treatments. With this series, I hope to shed light on the experiences sick individuals endure, in order to encourage more compassion and patience in medical professionals. Every doctor should get sick, just to see what it’s like to be a patient.

At 35 years old, I had a complete physical and I remember exactly what the doctor said: “You’re an extremely healthy woman. You’ll live to a ripe old age.” I even joked with him, “Unless I get run over by a truck first.”

Ouch. Why did I say that?

At 39, the 18-wheeler hit.

That Halloween, I sprained my ankle while trick-or-treating with my kids.

The next morning, I couldn’t feel my foot.

I called my orthopedist. He had operated on my ankle when I broke it figure skating several years prior. I still had a few screws in my tibia, so I thought maybe a nerve got caught in the hardware. Or something related to the old injury.

The receptionist scoffed when I asked to be seen the following day. “I can get you an appointment in two weeks,” she said.

“But you don’t understand,” I moaned. “I. Can’t. Feel. My. Foot.”

“Two weeks at 12:45. Does that work or not?”

I hung up.

I figured it will just go away—or rather, come back—in a few days.

But a few days later I sprained my ankle again. The next morning, I couldn’t feel my other foot—the foot I didn’t even injure. I knew something was very wrong.

I tried to ignore the problem. Deny it. I went about my day as usual. I took my daughter to school. I shopped for groceries. I worked. I cooked dinner. Both feet were still numb.

My fear and frustration came to a head on Thanksgiving. I was noticeably limping and I had been in discomfort for a few weeks. I wasn’t sleeping well. And with the numbness also came pain, which no one could understand. “If it’s numb, how can it be painful?” my husband innocently asked.

I exploded.

I had been tossing butter and pasta for my children, since neither ate turkey. I threw the bowls across the kitchen, broken ceramic and spaghetti everywhere—on the tile, the cabinets, the fridge. My poor family looked terrified. Little did they know I was terrified enough for all of us.

I made the mistake of going to the first neurologist who answered the phone. But maybe I had no choice. The first two offices did not return my calls.

By early December, added to the numbness and pain in my feet was difficulty urinating, constipation, blurred vision and weakness after a hot bath. The doctor I saw should have immediately seen the symptoms of Multiple Sclerosis. He mentioned every other problem first—small-tissue nerve damage, spinal cord trauma and chiari malformation.

He ordered MRIs of the brain and c-spine (neck). I was directed to an open MRI facility so I could tilt my head to my chest during the scan and hopefully recreate the electric buzzing sensation that moved through my arms when I lowered my head. (Another tell-tale MS symptom.)

My doctor neglected to tell me I needed a blood test prior to the MRI scan. I traveled an hour to the radiology office only to be sent home with an appointment for the following week.

The first MRIs were inconclusive. I later learned this was because the open MRI is not very strong. The results specifically said, “demyelinization cannot be ruled out” but my doctor decided to ignore that notation on the report. He never mentioned it. All he had to do was send me for a second MRI on a stronger machine. Instead, I had more tests in his office.

I was poked and prodded with electrified needles which determined my nerve roots were functioning normally. The doctor found some minor carpal tunnel issues, but as a writer, I expected that. Otherwise, he was stymied.

I pleaded for some kind of answer. I told him I had two young daughters whom I could no longer walk to school. “Why can’t you walk them to school?” he asked. I was incredulous. “I told you on day one—I cannot feel my feet!” I told him I had been an athlete. An avid tennis player. A competitive figure skater. I wanted to coach my daughter’s soccer team. I began to cry. “I just want to run around with my kids,” I sobbed.

“I’ll come back when you calm down,” he said, and walked out of the room.

It took two months for the doctor to finally order a stronger brain MRI, and only at my insistence, after a friend read my original MRI report with the “demyelinization” note.

The next day, the doctor called. He said, “Well, just in case this is MS I want to schedule you for a spinal tap and a course of IV steroids.”

I was baffled. “I don’t understand,” I said. “If it’s not MS, then what is it?”

“Well,” he conceded, “I think it is MS.”

This neurologist’s ultra-conservative methods wasted two months and thousands of dollars in inadequate, arguably unnecessary tests. I received 5 days of IV steroids exactly three months after my symptoms first manifested. The steroids did nothing to ameliorate my suffering. But, my hair started falling out in clumps two months later.

Next up in this series…
Am I a Disease or a Person?

Pecans’ Powerful Nutritional Punch (plus a recipe)

In MS, Multiple Sclerosis, Recipes on June 16, 2010 at 9:14 pm

Eating whole, unprocessed foods is a smart idea for those of us with MS. Did you know that pecans provide a powerful nutritional punch to your diet? Studies show they can protect the nervous system, reduce cholesterol and prevent heart disease. (Too bad they don’t cure MS.)

Pecans contain more than 19 vitamins and minerals, including vitamin A, vitamin E, folic acid, calcium, magnesium, phosphorus, potassium, several B vitamins and zinc. They contain very little saturated fat.

Pecans are great on their own as a snack, but how can you incorporate them into a meal?

That’s easy. It’s time for pecan sauce!

3/4 cup pecans
1 cup water
1/2 tsp salt

Toast 3/4 cup pecans in a toaster oven. You’ll know they’re done when they’re fragrant. (Keep an eye on them. Shouldn’t be more than 2 or 3 minutes on a middle toast setting.)

In a small food processor (like the Cuisinart Mini-Prep), grind the nuts until they form a nut butter. (You’ll need to scrape down the sides occasionally.) Then, while still processing, slowly pour 1 cup water through the holes in the processor lid. Add 1/2 tsp salt and process a few more seconds.

That’s the sauce.

Pecan sauce is especially good with mushrooms. It tastes like the best cream of mushroom sauce you’ve ever had, except there’s not one drop of cream in it!

Sautee 1 or 2 chopped shallots in a dab of your preferred cooking oil until translucent, then add one pint of sliced white button mushrooms. Sautee until the mushrooms are slightly browned and have released some of their moisture. Add the pecan sauce to the pan and bring to a simmer.

Guess what? You’re done. (That was easy!)

The sauce can be ladled over rice with vegetables, chicken, turkey, or lean pork. You’ll be licking the plate clean, I guarantee it!

Got any good pecan recipes to share?

How to Talk to Someone with MS, Part 2

In MS, Multiple Sclerosis on June 16, 2010 at 6:08 pm

“You’d never know she had it!”

How many times have you heard that phrase in relation to someone with MS? I’m going on a million…and counting. Every time I encounter someone new who learns that I have MS, they say, “Oh, my sister-in-law has MS and you’d never know it.” They may even continue with, “And you look good, too.”

Why do they say that?

Well, most people do not know what to say to someone who is chronically ill, so you have to excuse them. They mean well, but they have no idea what an MS patient endures.

MS is sometimes an invisible disease. Other people cannot see pain, fatigue, blurred vision, or loss of memory. If you’re not walking with a cane or in a wheelchair, everyone may assume you’re fine. So although they may say “you’d never know she had it,” they need to be reassured that of course, the person with MS definitely knows they have it.

External appearance has nothing to do with the internal symptoms we face or the daily accommodations we make in order to lead a fulfilling life–pacing ourselves because of fatigue, staying cool in hot weather, taking injections, altering our diet. Having MS means your life is never the same again. That doesn’t mean that life isn’t good, it just means that life becomes different.

In MS and Your Feelings, Allison Shadday writes that many people don’t know how to respond kindly to news of an illness, so they instinctively say the first thing that comes to mind. But hearing that you or another with MS “looks good” actually demoralizes our experience. If we are repeatedly told that we look good, we may feel that speaking about our symptoms is just complaining, and we may cease to understand how we feel about being sick.

If I look good shouldn’t I feel good? Why am I complaining? Maybe I shouldn’t say anything at all.

Acknowledging your symptoms is of great importance. You must understand your physical limitations and emotional pain regarding being ill and communicate that effectively with friends, loved ones, caregivers and doctors. If there’s no problem, there’s no solution, right?

So perhaps when someone says “you’d never know you had it!” you can remind them that “well I know!” and steer the conversation toward a place that’s comfortable for you. If you need help, ask for it. No one will know unless you say so. After all, you look good!

Something That Gives You Hope Cannot Be Crazy

In MS, Multiple Sclerosis, Physical Therapy on June 1, 2010 at 9:26 pm

Some folks think I’ve dove off the deep end lately, and I’m not talking about a dip in the swimming pool.

For the past two weeks, I’ve been following the MS Recovery Diet. This means no red meat, no gluten or yeast, no dairy, no eggs, no legumes. Just lean protein, nuts (that aren’t legumes), seeds, rice and [gluten-free] grains, fruit and veggies. Hey, it’s a healthy way to live, regardless of MS.

But the stares I get when I refuse birthday cake? Incredulous! And then there’s the gentle coaxing: aww, c’mon, just have one little piece, it can’t hurt. It’s like I’m the devil for passing up devil’s food. Give up chocolate cake, are you crazy?

Well, I’m here to say that which giveth thou hope does not maketh thou nutso. (I think it sounds better in bible-speak, don’t you? Like I’m a real authority.)

Now, changing my diet does not mean I’m tossing my Copaxone. Or stopping PT. If altering my diet is something I can do to make myself feel better, then I ask, whyeth not? Heck, if a study reported that wearing ketchup on your head would ease symptoms, I’d have red, drippy hair 24-7. With a side of fries.

So I’m experimenting with alternative, complementary therapies. Reiki. Acupuncture. Yoga. Meditation. There are scores of things we can do to help ease our symptoms and live life to the fulleth.

You may say I’m a dreamer, but I’m not the only one. What kind of “crazy” things have you done?

“I am Stephanie. And I am not my body.”

In MS, Multiple Sclerosis on May 23, 2010 at 9:56 pm

Whenever I start feeling sorry for myself, I turn to NieNie.

Do you know NieNie?

That’s a nickname for StephaNie Nielson.

NieNie began a blog in 2005 that, on the surface, might seem ordinary–a mom being a mom. But there was something special about NieNie, in the way she expressed sheer pleasure in the mundane tasks of motherhood, like snapping a photo of her kitchen sink clogged with Cheerios. And laughing about it. NieNie reminded me to have more fun as a mom.

Fast forward to August 2008 when NieNie and her husband were in a plane crash. She was in a coma for three months and suffered burns all over her body, including her face. She’s in constant pain and even minor tasks–like zipping up her daughter’s parka in the freezing cold–can become struggles.

But NieNie is thankful for her life–and she knows her new life holds more meaning and purpose. I’m Jewish, not Mormon like NieNie, but her message is powerful and applicable to anyone who is going through a rough time in life, especially those of us living with a chronic illness.

I offer to you NieNie, in her own words.

How to Talk to Someone with MS

In MS, Multiple Sclerosis on April 28, 2010 at 11:59 pm

It’s amazing when you receive an MS diagnosis–friends and family rally to your side and you receive dozens of phone calls from people wishing you well. Of course, they have only the best intentions, but you may start to record your responses because all the conversations take the same course:

“How are you feeling?” says Aunt Sophie, your neighbor Angela, your college roommate Lisa.

“Not so great,” you blather, hating to lie by saying, “Fabulous! Like I can run a marathon!”

“Oh, I’m so sorry to hear that,” replies your Uncle Larry, your book club leader Jenn, your cousin Steve.

“Thank you,” you say–and you really mean it.

“Well, you’ve just got to stay positive,” says the chorus of reassurance.

“Yes, I know.”

“When does the doctor think you’ll get better?”

“MS takes a different course for everyone, so he can’t say.”

“Well, you’ve just got to stay positive,” they repeat.

“Yes, I know.”

“Hey, I have a neighbor/niece/in-law/lady at the dry cleaner/friend-of-a-friend’s sister’s cousin’s ex-wife who has MS and she’s doing great. You’d never know she had it. And she’s willing to talk to you.”

“Thank you, I’ll think about that,” you say, noting this is the 27th offer you’ve received to talk about MS.

So let’s stop the conversation there.

Folks, the person with newly diagnosed MS wants to talk about anything but MS. Sure, it’s helpful to have an MS mentor–and chances are, your MS’er has already reached out to someone. But the MS patient doesn’t want to speak to every person that comes forward. A small support group or one confidant is probably enough. We’re not keen on calling Phoebe’s French Cleaners and asking for Millie to shoot the breeze while she starches collars.

We have MS. That’s a fact.

But we also have a rich, full lives: occupations, spouses, children, pets, religions, hobbies, adventures, loves, dreams.

We’d like to talk about life. Not MS. Because MS does not define us.

So if you have a family member or friend recently diagnosed with MS, take note. Please don’t call once a week with the standard, “How are you feeling?” routine. Call just to talk.

It’s great to hear your voice.

Phun at Physical Therapy

In Humor, MS, Multiple Sclerosis, Physical Therapy, PT on April 25, 2010 at 8:53 pm

Ah, PT. It stands for Physical Therapy, but in my world, it’s Personal Training because I consider myself an athlete training for victory rather than an MS patient gaining strength to walk. So from here on in, we’ll refer to my therapist as my trainer. And I suggest you do the same. Got it?

OK, so onto my second visit with the handsome trainer. At the first visit he evaluated me, so now the real work begins. He escorts me on his arm and I feel like I’m going to the prom–a prom where Nike shorts and a sweat-wicking T-shirt are appropriate attire.

He explains that MS patients have a fixed reservoir or pool of energy for a day. Since he isn’t familiar with my energy threshold, he’ll take it easy on me. I tell him my reservoir is a baby pool, the plastic kind you fill with a hose in the backyard. We laugh. And then he takes the joke further, asking me if it’s the size of a teacup, and I say, maybe not, I think it’s the puddle in the saucer.

I ride the exercise bike for three minutes and I still have some oomph, so he tells me to go for five. A few feet in front of me is an elderly lady I’ve seen before, stretching a giant rubber band.

The five minutes are up and my prom date/trainer escorts me to the exercise table. I pass the woman and say hello. She practially screams, “Lookin’ good! Lookin’ good!” I feel good.

We reach the table and I hear another trainer ask the woman, “Do you want me to turn the TV toward you? Turn up the volume?”

“No, dear,” she replies. “I’m not watching it. I’m blind.”

I laugh so hard I nearly pee the exercise table with a pool of energy.

Carol Burnett and the Three Gratefuls

In MS, Multiple Sclerosis on April 19, 2010 at 8:03 pm

Anyone else grow up in the 70’s on a steady diet of TV dinners and TV? Swanson’s and Carol Burnett, that’s the good stuff.

While digging into my salisbury steak all those years ago, I witnessed one of the most hilarious moments in TV history: the Went with the Wind spoof. Carol’s Starlett O’Hara descended the stairway in a velvet curtain dress, brass rod and gold tassels still attached. (“I saw it in the window and just couldn’t resist it.”) Starlett mustered up all her courage and held onto the railing, each step full of grace–as much grace as one can have while wearing window adornments. A bit imbalanced by the cumersome dress, she nonetheless reached Ratt Butler with her pride intact and her man overcome with emotion.

That’s me and the stairs these days. Sans the green velvet. And Harvey Korman. But there’s plenty of laughs–coming from me. How funny that such a simple act as going downstairs has morhped into a major production.

I stare down the 14 steps to my family waiting patiently below. My body feels heavy even though I don’t have a curtain strapped across my shoulders, and I muster up all my courage to descend with pride. But I need to hold onto the railing with both hands, and I wobble so much I sometimes resort to taking a bumpy ride to the bottom on my butt instead.

Graceful? Not quite. But it gets the job done. And there’s good fortune waiting for me in the foyer–a family ready for Mommy to go out instead of linger in bed.

The past few months have been rough ones, getting the MS diagnosis and then slowly letting the reality seep in. The daily shots remind me this is something I’ll have to deal with for the rest of my life. If that wasn’t enough, I’ve got two feet that feel trapped in blocks of ice. I pray that global warming is real.

Recalling Carol’s variety show always lifted my spirits. So this week I read Carol Burnett’s new autobiography This Time Together: Laughter and Reflection and learned that every night she counts her “three gratefuls”–three things for which she is thankful.

I’m alive. One grateful.

I have a healthy and supportive family. Two gratefuls.

I’ve got my sense of humor intact. Three gratefuls.

If I could add a fourth today, it would be for Carol.

And salisbury steak.

(Sorry, I skipped lunch and I’m hungry!)

The Extraordinary Life

In MS, Multiple Sclerosis on April 13, 2010 at 2:54 pm

Did you ever feel as though your life were meant to be extraordinary?

That something special was going to happen in your future? A belief that nags at you, somewhere beneath the skin, someplace you can’t scratch?

As a child, you blew dandelions seeds across the lawn, watching one puff rise higher than the others, hoping it was the seed that would carry your wish to whomever made these things come true, never knowing it sprouted, days later, as another dandelion in the backyard.

Maybe you dreamed of becoming a doctor. Or a lawyer. Or maybe those were never your dreams at all, forced upon you by parents trapped in assembly line jobs.

A movie star, perhaps? Was that what you wanted? Singer? Musician? Winning awards? Topping the charts?

Did you want to be a CEO? Invent something the world could not live without?

Perhaps, over time, your wants became simpler, like a good cup of coffee every morning with your spouse, predictable, comfortable in your well-worn slippers. A house with a fireplace. Now that would be cozy. An outdoor pool. Plus someone to take care of it. A nice car, but not a minivan. Two or three children with scrubbed-clean faces and good grades.

Yes, you slathered Calamine lotion on your skin and spread Scott’s turf builder on the grass.

Maybe ordinary could be extraordinary to you.

Or maybe you’re like me. You thought you would do something extraordinary or be something extraordinary, but you never knew just what extraordinary was. It had no definition. It was floating out there, somewhere, waiting to be caught.

But now I know.

I have Multiple Sclerosis.

So this is how it’s going to be, huh, life? Now I have to be extraordinarily brave and strong to overcome a lifelong, incurable disease? Great. This wasn’t the extraordinary that I had been hoping for.

But if you’re gonna give me a lawn full of dandelions, life, then watch me clip ’em and stick ’em in water. They’ll keep growing back, I know, but hell, I’ve got a cupboard full of crystal vases that need filling.