MS Maze

I watched a report on this evening’s news which brought to the forefront all my own personal fears regarding health care in America.

The story centered around a twenty-something year old woman from Illinois who fought and won her battle against mouth and throat cancer. She said that when she fought cancer, she believed it to be the battle of a lifetime. Unfortunately, winning that battle only led to another, equally formidable opponent. Though she had health insurance, her share of medical bills has caused her to lose her home, deplete her retirement account and file for bankruptcy. The still growing pile of bills fills a cardboard box and she still requires treatment.

So there she sits, still in her twenties and a cancer survivor. She feels completely hopeless about her financial future. Officially bankrupt, she has no hope of ever fulfilling her financial obligations, becoming a homeowner again or having a decent credit rating. As she put it, “You are all just one cancer diagnosis away from bankruptcy.”

What a sad commentary on our country that hard-working citizens who HAVE health insurance can be ruined by the unfortunate diagnosis of a health problem.

MS patients usually live a near-normal life span. However, we are plagued by a myriad of symptoms, leaving us partially or completely disabled, and unable to work full time. When my COBRA runs out in a couple of months, I will be in a difficult position.

As a hard-working, tax-paying citizen, I stand to lose all because of the unfortunate diagnosis of MS. Only partially disabled, I don’t qualify for disability. Being middle class, I do not qualify for any assistance whatsoever. In the state in which I live, an insurance company must offer me some type of medical coverage, but there is no cap on the price they may charge. My MS medication costs $16,000 annually, and no generic exists.

Meanwhile, doctors insist on tests and repeat tests. Try this medication, then try that one. You are compelled to submit to expensive procedures without knowing in advance whether your insurance company will cover them, partially or at all. Neither can you comparison shop. Months after a procedure you may still receive bills from providers you never saw, with no explanation for the amount due. Ask for an explanation and it’s voice mail hell and collection agency letters for you.

I am just one of the millions of people in America facing a health care crises. It’s time to stop putting our heads in the sand and admit that, as a country, we’ve got it all wrong. The question is, are we going to do something about it? Those of you still healthy…those of you with good insurance policies…how secure do YOU feel?

Share your story with MS MAZE. Register and post your comments, or email: mandycane@comcast.net. We want to hear from you!

Have you heard about that amazing new diet claiming to cure your MS? How about that bee sting cure? Did you read that you should have the fillings removed from your teeth if you want to cure your MS? Surely those special MS mega-vitamins will do the trick. Or you could have all your blood removed and filtered. Buy your tickets now for that overseas clinic where you’ll finally rid yourself of MS with nothing more than a positive attitude!

There are countless scam artists trying to separate desperate people with multiple sclerosis from their money. They take advantage of the confusing maze of MS symptoms to offer you that glimmer of hope that your physician won’t. Be cautious about promises of a cure. Your doctor isn’t enthusiastically offering you a cure for a reason — it simply isn’t here yet. If it sounds too good to be true, IT IS!

That’s not to say that you shouldn’t try to vastly improve your health. There are things you can do in that regard. Speak to your neurologist about the medications currently available to fight MS relapses. Eat right, exercise, get regular rest, don’t get yourself overheated, and take care of other health issues promptly. Also, make the necessary changes in your life to compensate for disabilities. Don’t be afraid to take charge!

This article from the University of Maryland Medical Center offers some good, solid advice about diet, exercise, cooling methods and prevention of influenza. University of Maryland Medical Center/Multiple Sclerosis/Lifestyle Changes

Got a story you’d like to share?

Whether you’ve lived with MS for years or just been diagnosed, you’ve got a story to share. Are you married to someone with MS…do you live with someone with MS…do you have a friend or co-worker who has MS? You’ve got a story to share.

How has MS impacted YOUR life? Even if MS is not part of your life, but you have insight to share, join the discussion.

Register with MS Maze and post your comments. By sharing our personal stories we can help others to see that they are not alone. Let’s help each other navigate this MS Maze.

If you’d rather not post directly, please feel free to email Mandy at: mandycane@comcast.net. I want to hear from you.

Five years ago, I had a well-paying full-time job with benefits including health insurance, 401k, a bonus, paid holidays and sick days, and three weeks paid vacation. I had responsibilities I took seriously, thought nothing of putting in extra hours when required and occasionally traveled for business. I was energetic and enjoyed my work.

Today, I have a part-time, hourly-paid job with no health benefits, no 401k, no paid holidays or sick days, no paid vacation, and no reason for a bonus.

So how did I get from there to here in five years? A few things contributed, but multiple sclerosis is THE reason I find myself in this position.

Don’t get be wrong — my job has a lot going for it. I’m not essential to the day-to-day operation, so when my MS is acting up, my employers don’t mind my absence and I, in turn, carry no guilt. I’m also able to take days off for vacation as I please. I have fewer constraints than my co-workers. I work with understanding and sympathetic people who have made adjustments to accommodate me.

As much as I would love to work full-time again and improve my income, as well as my self-esteem, I can’t. I can’t promise any future employer that I could hold up for 8 hours a day. Or show up every day. I have unpredictable bouts of fatigue and weakness, periodic vertigo, and often cannot drive myself to or from work.

On the other hand, I am not really disabled and, therefore, I can’t bring myself to call it quits and file for disability. I don’t think it’s the best thing for me. So I find myself settling in at a level of employment similar to when I was a teenager. It has not been particularly good for my ego, but it is very important for me to remain part of the working world.

I can only assume that there are many people with MS who are in similar circumstances. Caught halfway between able-bodied and disabled. Caught in an income quagmire and pondering the alternatives — work full-time, pushing yourself to the limit and hoping it all works out, or stick with a part-time situation, or give up altogether and claim your disability. It’s that proverbial rock and hard place.

If you have a similar personal MS employment issue, please share by posting under “comments”, or feel free to email me at: mandycane@comcast.net. I’d love to hear from you.

“So you’re tired — I tossed and turned all night and I’m tired, too.”

One of the most debilitating symptoms of MS can be fatigue.

More than just being sleepy, this is a bone-weary fatigue which can make it all but impossible to function. It does not correlate to how much or how little sleep was had the previous night. It is a powerful body and mind fatigue which is unaffected by a cup of java.  It can turn even minor tasks into major problems and can interfere with the ability to think clearly.

Personally, fatigue is the single worst symptom I experience and the one which has had the greatest impact on my life.  It robs me of my ability to function and exaggerates every other physical symptom.  Oh, I’ve experienced lack of sleep before and I’ve been pretty tired, but this type of fatigue is in a league of its own.

You know it. I know it. It’s common sense. But it doesn’t hurt to remind ourselves once in awhile of this simple fact.

Just because we have MS, doesn’t mean we won’t get something else.

Multiple Sclerosis varies greatly from person to person. Symptoms are ever-changing. You’ve been played a wild card. Understandable, therefore, that a person with MS would ignore symptoms completely, or simply self-diagnosis them as MS related without contacting a physician.

Don’t let MS fool you into complacency. New symptoms could be completely unrelated to MS. One bad break doesn’t protect you from another. MS and Diabetes. MS and Cancer. MS and Lupus. The possibilities are endless.

If you are experiencing new symptoms, give the doctor a call. It could save your life.

Pediatric Multiple Sclerosis

Most people with MS receive that diagnosis between the ages of 35-50. Did you know that between 8,000 and 10,000 of the approximately 400,00 Americans with MS are younger than age 18?

According to an article from the National Multiple Sclerosis Society’s InsideMS magazine, MS has been diagnosed in children before their second birthday, due to the advent of the MRI and its powerful imaging ability.

For an in-depth look at pediatric MS, please read the full story from the NMSS website. You’ll never look at MS the same way again.

Keep a Tall Kitchen Stool Handy

Legs giving you trouble while working in the kitchen? Keep a tall kitchen stool handy. You can sit at a comfortable height while chopping vegetables, keeping an eye on the stove or doing the dishes. Get in the habit of gathering together everything you’ll need in one spot rather than making multiple trips around the kitchen. Grab the stool, have a seat and enjoy your kitchen again. When not in use the stool can be easily put aside.

This is the first adjustment I made after MS entered my and life it’s made a world of difference. Nothing fancy required. Any tall stool will do.

One more way for you to take charge, maintain your independence and work the maze.

It’s a fine line, when a spouse is also a caregiver. When I received a diagnosis of MS, I had NO choice in the matter. The man in my life DID. Imagine the task of having to weigh that issue and actually choose. No, he never hinted at his thought process and, no, he never showed the slightest sign of indecision, but I have to assume there was some wrestling going on there. We were married the following year.

I have Relapsing/Remitting MS, so much of the time the role of supportive spouse is sufficient and I take care to maintain my independence. I want him to think of me as his wife, not his patient.

Sometimes we’re in that middle ground, and I’ll ask him to carry something, or I’ll leave a chore or two undone. We’ve worked out a silent system of sorts. If I leave the laundry basket full of clean clothes at the bottom of the stairs, he’ll pick it up on his way by and so forth. We hum along like a well-oiled machine in this mode.

When we reach that full blown relapse, however, Jake becomes the caregiver. Without much fanfare, he takes over my chores, the driving, the shopping, shuttling me to the doctor. He’ll call my office and let me sleep in. When I shower, I’m aware that he’s got one precautionary ear tuned in for signs of trouble. He’ll load and administer my daily injections when necessary. Several times a day, I’ll hear his voice coming from our home office, “Hey, Babe…how’re you doing out there?”

MS is clearly OUR issue, not mine. While I carry the load of the physical manifestations of MS, Jake carries the load of the on again, off again caregiver and spouse. Together we share the burden of medical and health insurance woes and working our lives around the relapses. It is a challenge we accept and share as a couple. He does what is needed without hesitation or complaint. In return, I show my appreciation whenever and however I can.

Whether it’s your spouse, your parent, your sibling, your child or a friend, be aware of the silent burden of your helper or caregiver. I sometimes keep symptoms and frustrations to myself because I don’t want to complain too much. My guess is that my husband does the same. Show your appreciation. Pay attention to the little things as well as the obvious things that are done on your behalf. Imagine how you would feel should roles be reversed. It’s not so easy to watch someone you love struggle.

Have you hugged your caregiver today?

You’re invited.  Have dinner with Jake.

MS and Urinary Tract Infections

Did you know that 90% of people diagnosed with multiple sclerosis experience urinary tract dysfunction? Did you know that urinary tract infections can mimic all the neurological symptoms of an MS exacerbation? Did you know that in many cases, antibiotics can clear up the infection and reduce those neurological symptoms?

So before you dismiss your symptoms as something you just have to live with, contact your neurologist and inquire about UTI. A simple, painless and inexpensive test can give you the answer you’ve been waiting for.

My own first hand experience on this issue confirms that an exacerbation is not necessarily just another exacerbation. Check it out and get the facts.

For more information, please read:

Urinary Tract Infections May Trigger Relapse in Multiple Sclerosis
Metz LM, McGuinness SD, Harris C
Axone 1998 Jun;19(4):67-70
Multiple Sclerosis Clinic,
Foothills Hospital,
Calgary, AB

“You really shouldn’t use your cane (walker, or wheelchair) because you’ll become too dependent on it.”

People with MS rely on devices such as canes and walkers not only to lean on when putting one foot in front of the other, but also to help maintain balance and coordination, as well as a sense of security while walking.

A cane can greatly improve the exaggerated gait as well, allowing us to look and feel less handicapped. While able to walk short distances, many of us with MS have difficulty standing for more than a few minutes and use of a wheelchair can make or break the day.

During those times when symptoms abate, few would choose to use a cane or a wheelchair. More likely, you’ll see us out there kicking up our heals.

Mobility devices are another way in which we can work the maze and maintain independence.

Get a Handicapped Placard for Your Car

Apply for a handicapped placard for your car. You can download and print the application directly from the Department of Motor Vehicles site in your state, and they are valid throughout all fifty states. Each state has its own regulations, so check it out online or by phone before taking a trip to the DMV.

A physician’s signature will be required. Ask your doctor to sign for a permanent placard. In my state, Virginia, I was able to choose either a handicapped license plate for my car, or the placard which is placed on the rear view mirror. Choosing the placard will enable you to take it with you when you are a passenger in someone else’s vehicle or when traveling out-of-state.

A personal pet peeve of mine is seeing these placards hanging on the rear view mirror while the car is on the road. Please, please, please, remove the placard when driving and keep your view open! You only need to hang it when parking. Also, please don’t lend it out to others. It’s just not right, and it’s against the law.

On another personal note, I choose to use mine only when necessary. When I’m in a remission, I save the treasured handicapped spaces for those who really need them and get myself some much needed exercise in the process. It’s a win, win situation.

When you do need it, however, don’t hesitate to use it. You may feel conspicuous getting out of your car and walking, while appearing to be perfectly healthy to others. Don’t let it bother you. YOU know you need it and only you know what a huge difference it is making in your day. It’s another tool at your disposal to help keep you independent. Take charge and work the maze!

“MS? Oh, that’s not a big deal. My cousin has MS. She doesn’t even take medications and goes skiing, running and hiking.”

While a great many people with MS do go about their daily lives with little or no problem, remember that MS varies greatly from person to person, from benign cases to complete disability.

Naturally, we are thrilled for those who don’t suffer disability and, in fact, find hope in those cases. But dismissing someone’s MS by saying that it’s not a big deal can be hurtful. More likely than not, there is a private struggle and very personal symptoms of which you are unaware. No need to offer pity or sympathy either. Just a little understanding.

Those of us who have multiple sclerosis are very fortunate in a great many ways. There are much worse scenarios in this world and people with MS generally live a near-normal life-span, although with various degrees of disability.

On the flip side, there is an emotional toll due to the roller-coaster nature of the disease, the many unknowns which still exist within the medical profession and the lack of comprehension by the general public. Furthermore, patients face the difficulty of trying to compensate for disabilities which are ever-changing.

What about when I wake up tomorrow? Will I need someone to drive me around? Will a cane do? Should I purchase a wheelchair now? What if my arms don’t work and I can’t propel the chair? Will I be able to shower/shampoo adequately? Will I regain vision in my left eye? And so it goes in the mind of an MS patient.

There is a financial price to be paid as well. Medications currently available for MS can run up to $16,000 annually, and that’s just basics. Add to that medications prescribed for individual symptoms and complications from MS, steroid treatments, neurologist visits, physical therapy and various tests such as the MRI, which can keep tabs on progression. Medical insurance? A complicated issue for another post, but suffice it to say that insurance companies are not lining up to solicit this writer’s business.

What a glorious day, though, when you can get up, walk around, be self-sufficient and independent! Savor that day! Revel in it! Appreciate it! Take charge and use it to its full potential.

Make the choice — every single day — to take on what you can and not dwell on what you can’t. Don’t give up the ship just yet. There’s a LOT more to you than your MS.

Give Yourself a Break with a Shower Chair

Purchase a sturdy shower chair for your tub/shower so that it is available when you need it. You can find them in most drug stores, medical supply stores or online at reasonable prices. A shower chair can make all the difference in the world when you have trouble standing or difficulty with balance. It can be easily stored away or moved aside when not needed.

Give yourself a break and equip your bathroom with grab bars as well. By taking steps to ensure your own safety and well-being you can avoid accidents and injuries. A little pre-planning can keep you independent and, ultimately, you will feel better about yourself.

Visit Mandy’s Closet for more ideas on how to make life easier.

Don’t let your pride stand in your way. Take charge and work through the maze that is multiple sclerosis!