Mobility Devices: Canes, Walkers, Wheelchairs, Scooters, and the Like

Scooter

Mobility Devices Do I need one?

Deciding when to use a mobility device is often difficult – especially when your physician doesn’t mention it. You may often find yourself questioning as to whether you should continue to push yourself. After all, wouldn’t your rheumatologist suggest using a cane, walker, scooter, etc if you really needed it?

Canes

To determine if you need a cane or not, think about these things. Do you have pain on one side of your body? Weakness on one side? Do you need help with balance? 1http://www.aafp.org/afp/2011/0815/p412.html Or do you hold to furniture and walls as you walk? If you answered “yes” to any of these questions, a cane might help you.

Walkers

Walker

If you have balance issues, you may need a walker. When you’re off balance, a cane usually isn’t enough to keep you upright when walking, but a walker, either one like the one pictured or one with the four wheels may be what you need to help you keep your balance.2http://www.aafp.org/afp/2011/0815/p412.html Also, if you it exhausts you to walk very far, and the more you walk, the higher the risk of stumbling, you might opt for a walker with a seat.

Wheelchair or Mobility Scooter

Scooter

But I can walk? Isn’t it wrong for me to use a wheelchair or a scooter? No! If you have low stamina, difficulty walking distances, or if you have trouble managing a walker or cane, you may need a mobility scooter. This is also a good option for those on oxygen or with chronic joint pain.3https://www.verywell.com/do-you-need-a-mobility-scooter-1094636

When shopping for groceries, walking the mall, going to a museum, or going to a theme park with your family, are you relegated to waiting in the car, or sitting on the sidelines because you can’t walk distances? If so, you might want to think about using a wheelchair or a scooter.

Wheelchairs and scooters can provide incredible freedom for those who have fatigue and pain from autoimmune diseases. Bus systems and taxis must provide space for your scooter or wheelchair, so using public transportation is an available option.

Medicare and some insurances will pay for a scooter if your physician signs off on the paperwork. Most places that sell them can tell you what you need in order to file against Medicare or private insurance.

But My Doctor Didn’t Recommend It…

Remember when dealing with your health and autoimmune diseases, you must become your own advocate. Talk to your doctor about your symptoms. Explain that you think a mobility device would help you.

Of course, you do not have to have your doctor’s permission for a mobility device since they are sold over the counter. However, if you want insurance or Medicare to pay for your mobility devices, or you want to take the cost off on your taxes, then you’ll need to ask your rheumy to sign off.

 

 

You Know You Have a Chronic Debilitating Disease When…

You know you have a chronic, debilitating disease when…

You miss your job and grieve over having to give up your career – often when you’re quite young. Some of us spent our last days in tears because the job was so hard and painful, but we kept pushing because we’ve heard so often that people on disability are “lazy” and other hateful comments. Often from friends.

Nurse

 

You spend all of your disability check on insurance and medicines – many of people with disabilities struggle month to month because the cost of insurance, doctors, and medications bankrupt them. After two years of being disabled (according to the Social Security Administration) the person qualifies for Medicare. Medicare doesn’t pay for any medications, and the person must pay twenty percent out of pocket. Most states don’t require supplemental policies to cover the disabled. Most, however, can obtain Medicare part D to help with the cost of medications, but it’s a guessing game to figure out which policy to choose that won’t leave the person in the lurch on the cost of expensive medications.

 

Your house looks like a medical supply store – for the days when you’re having problems with your knees or hips, you have a walker or a cane. Most of us have both. Some days you chose one, and other days you must choose the other one.

 

And then there are times when neither a walker or cane is enough… Many of us have wheelchairs and electric scooters stowed somewhere. If we go anywhere that involves much walking, the cane or the walker’s just not enough. Then, when we use our scooter in places like Disney, we hear snide remarks about being lazy, because of course, we don’t “look” disabled. What does disabled even look like?

Scooter

 

We spend so much time with doctors, you’d think we would have a great relationship with them… And many of us do with some of our doctors. Two of my many doctors who listen to me and act upon what I tell them. They don’t ignore me. Unfortunately, that’s not always been the case. Before I was diagnosed (which by the way, can take YEARS because the symptoms are nonspecific and often mimic other diseases) I was told to try things like “a high protein diet” for the fatigue that I constantly complained about. It’s hard for us to trust a new doctor. If we’re told we need to see a new specialist, it strikes fear into our hearts because we recall all of the previous times when we had doctors who treated us as though we were lying. I mean who would lie about the symptoms we have?

doctor button

 

We take enough pills to choke a horse – and often times we take pills to counteract the side effects of the pills that we take for our disease. Of course, we can opt not to take the pills for our diseases, but that leads to another set of problems.

Pills

 

Many of our medications are given through an IV, or we must learn to self-inject – next time commercials for Enbrel, Humira, etc come on TV, check out the drug. The lists of side effects are endless, the method of administration isn’t fun, and they cost a small fortune.

shot

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We’ve been xrayed, MRId, and CT scanned from stem to stern…  Since most of these diseases can affect any and every part of us, we’ve been subjected to all sorts of testing. Including spinal punctures, blood tests, nerve conduction tests, etc.

hand xray

 

Nice rash! We develop very weird symptoms. Often, they stump the doctors. We have flu-like symptoms most of the time – fever sometimes as high as 102), our brains are foggy at times preventing us from making good decisions, remembering appointments, etc. We have a pervasive feeling of being unwell. Sometimes the symptoms are actually a sign of an additional disease taking up residence because autoimmune diseases like to come in groups.

rash

 

Some of the diseases affect the spine – but those of us with the diseases that “don’t” affect the spine, know better. We’ve developed multiple disc herniations, etc over the years. Recent studies have shown that we were correct all a long. Many of the Autoimmune Diseases that doctors originally told us won’t affect the spine, recent research has proven they affect the joints and the discs of the spine.

spine

And the top way to know you suffer from a chronic, debilitating disease? You wake up more tired than when you went to bed the night before. Family and friends wonder what your problems because you’re late for church, work, school, etc. Your body is so exhausted, it doesn’t want to move. You feel like you could sleep until the end of time. Then, after you’re up a while, you hit your high point which lasts a couple of hours if you’re lucky.

Tired

 

Open Letter to Women Everywhere About Urine

Toilet without urine

 

Dear Women Everywhere:

Can we talk about public toilets? Especially those in the handicapped stalls? You know, the ones covered in urine?

Ladies Room Sign - hopefully the seat in the handicapped stall is urine free!

Handicapped stalls have grab rails for those who need help getting up and down or to transfer to the toilet from a wheelchair or scooter. It’s gross to open a handicapped stall door and find a seat covered in urine.

Both those who cannot stand without the grab rails and those in wheelchairs cannot hover over the toilet seats. Businesses install handicapped stalls for handicapped women who must sit on the toilet seat.

I understand that most of you are appalled at the thought of your precious little bottoms hitting the seat. I get it. Really I do. In fact, I line the seats with toilet paper or use the provided covers. What I don’t get, will never understand, is why women who ARE NOT handicapped choose to use these stalls. You hover over the seat and urinate all over it. Do you realize the handicapped person must clean up your nasty mess before she can use the facilities?

It never fails when I walk or roll (depending on the day) into a ladies room and open the handicapped stall, I find the seat covered in urine. Some discourteous woman hovered and peed all over the seat leaving a mess I must clean up with only toilet paper or paper towels in my arsenal since I don’t carry bleach everywhere.

Please, in the future, if you must hover and pee, use the regular stall. Save the handicapped ones for people who must sit. Leave the toilet quasi clean for those of us who have no choice but to sit. Or at the very least, clean up your urine.

If you think this only bugs handicapped people, think again. Here’s a link to someone who blogs about urine covered toilets: Pet Peeves: Women Who Leave Urine on Toilet Seats This blogger even includes a nice little photo of a urine covered toilet seat.

Handicapped women have enough trouble getting into a handicapped stall when moms of little ones use them because they’re larger. When you also use the handicapped stall because you can hold onto the grab bars to help you hover, it not only makes a nasty mess, but makes us wait for you to finish your business. Please stop! Think about the handicapped woman who follows you.

In one instance in Disney World, I was so sick of cleaning urine from the handicapped stall, I get loud about it. I stood with my cane (after leaving my wheelchair outside because I needed to move a little) waiting for the handicapped stall. A woman walked out leaving pee all over the seat. I looked inside and while she was still in hearing range, yelled, “THAT’s DISGUSTING!”

I will leave you with this final plea: Please, please, please do not use the handicapped stall if you must hover! I’m not asking you to quit hovering to avoid touching the seat. Just please don’t do it in the handicapped stall. If you must use the handicapped stall, then please clean up after yourself. The next person may not be able to use a regular stall, and if she’s in a hurry, she either sits in your urine, or risks peeing herself while she cleans up your mess.