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.

 

 

Chronic Kidney Disease and Autoimmune Diseases

Chronic Kidney Disease and Autoimmune Diseases

Kidney
Image courtesy of hywards at FreeDigitalPhotos.net

Chronic Kidney Disease affects thirty million people. Think about that number. It’s equivalent to 9% of the population of the United States. Many more people are at risk of developing CKD.

The causes are varied, but the leading causes are hypertension (high blood pressure) and diabetes. For those who have autoimmune diseases, the causes can range from the disease itself (for example, Lupus Nephritis), to comorbid conditions (coexisting diseases) like hypertension or diabetes to the treatment for the autoimmune disease.

Types of Kidney Disease

There are two types of kidney disease. Chronic (CKD) and Acute. In this post, we are concentrating on CKD because that type of kidney disease has long-term consequences. Acute Kidney disease is treated in a hospital setting as an emergency.

Prevention

One in three adults is at risk for developing chronic kidney disease. This insidious disease can develop without the victim realizing it. If you have diabetes or hypertension, work with your doctor to keep those diseases under good control. Hypertension or high blood pressure damages the small blood vessels in the kidneys. It’s the second leading cause of chronic kidney disease. Diabetes is the leading cause.

For those who have autoimmune diseases, limit the anti-inflammatory drugs such as naproxen, ibuprofen, etc to the prescribed amount. These drugs are eliminated through the kidneys. Overuse of the drugs can lead to CKD.

Work with your physician to identify CKD early. Have routine blood pressure, blood glucose and/or A1C testing to identify these risk factors in addition to the autoimmune disease. This can be done by urine testing for ACR (Albumin Creatinin Ration) and blood testing for GFR (glomerular filtration rate).

Symptoms of CKD

Many of the symptoms of CKD are the same as those of Autoimmune diseases so they can be easy to ignore thinking they’re part of the same stuff you deal with off and on.

The symptoms include:

Image courtesy of photostock at FreeDigitalPhotos.net
Image courtesy of photostock at FreeDigitalPhotos.net
  • Fatigue and weakness
  • Difficult and/or painful urination
  • Foamy or frothy urine 1Lupus Foundation of American – www.lupus.org
  • Pink, dark urine (this is an indication of blood in the urine)
  • Increased thirst
  • Increased need to urinate especially at night
  • Swelling – puffy eyes, swollen face, abdomen, ankles, feet
  • Unusual weight gain – related to fluid retention.2National Kidney Foundation – www.kidney.org

Lupus nephritis

Approximately 40% of those with Lupus will develop Lupus Nephritis (or glomerulonephritis). In Lupus Nephritis, the nephrons (parts of the kidney that filter the blood become inflamed and the kidneys can no longer eliminate the toxins. They begin to build up in the bloodstream. The patient begins swell or gains unexplained weight.

CKD and Heart Disease

Heart disease is very common in CKD. If you have CKD, learn about heart disease and preventing it. Many of the same diseases that cause CKD also cause heart disease.

While the link between heart and kidney disease isn’t completely clear, it has been shown that damage to either organ affects the other one. If you develop CKD, you are much more prone to developing heart disease. 3National Kidney Foundation – www.kidney.org4National Institute of Diabetes and Digestive and Kidney Diseases – www.niddk.nih.gov

Heart disease is the leading cause of death in Chronic Kidney patients at all stages. In addition to normal cardiac risk factors, those with CKD have unique risk factors.

  • Protein in the urine (proteinuria or albuminuria)
  • Elevated phosphorus levels in the blood – in CKD the body is often unable to eliminate the excess phosphorus found in some food. As this build up in the bloodstream, it can cause de-calcification of the bones and hardening of the arteries.
  • Elevated calcium levels – Calcium and parathytroid often go hand in hand. When the calcium levels are too high, it can cause calcium deposits in the arteries.
  • High levels of parathyroid hormone (PTH) – Often in CKD the parathyroid gland produces too much of the hormone and causes elevated calcium levels.
  • Electrolyte imbalances (especially potassium) – Potassium levels must be kept within strict ranges. In CKD the kidneys are often unable to eliminate excess potassium resulting hyperkalemia (elevated potassium). Hyperkalemia or hypokalemia(low potassium) can result in the cardiac arrest (heart failure).
  • Fluid overload – When the kidneys aren’t working correctly, they fail to filter and excrete excess fluid. Excess fluid in the bloodstream places extra strain on the heart and causes elevated blood pressure)
  • Anemia – When a patient is anemic, their level of red blood cells becomes low. the red blood cells carry oxygen to the various organs including the heart muscle.
  • Malnutrition
  • Inflammation 5Davita Dialysis Centers – www.davita.com
Image courtesy of cooldesign at FreeDigitalPhotos.net
Image courtesy of cooldesign at FreeDigitalPhotos.net

In conclusion:

For more information on kidney disease, please visit the National Kidney Foundation – http://www.kidney.org

The NKF has local chapters that offer free screenings and education on kidney failure. The website contains a wealth of information on kidney disease and transplantation. They offer free memberships to the organization and online communities for those on dialysis or who have been diagnosed with CKD.

The NKF also provides information on clinical trials and how to find one that might be right for you.

Your kidneys are essential to your overall health. Know your numbers: glucose, blood pressure, and glomerular filtration rate. Know the symptoms of kidney failure, and don’t assume that any symptoms you’re experiencing are caused by your autoimmune disease. The earlier you catch kidney failure, the better the outcomes.

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

 

Disabled or Not? Part Two

In my last post, I discussed how someone can look fine, yet be profoundly disabled. I shared my story of living with autoimmune diseases for many years.

Church

Today, I would like to discuss what those disabilities cannot do. They cannot:

  • Steal my faith or my joy. Yes, I have days where I get down because of the changes in my life. However, I still have joy. The Bible tells us we’ll have troubles. Jesus never promised that our lives on earth would be pain-free, but He does promise to walk through the valleys with us. “I will never leave you, nor forsake you.” Since my trust is in Christ, my joy rests in him also.
  • Rob me of laughter. I choose to laugh every day. My husband cannot go a day without making a joke. Even in troubled times, we laugh together. No matter the situation, we can find a sliver of happiness and laughter.
  • Snatch love from me. I know people who’ve had spouses leave them over their diseases, and I’m not making light of that, but disabilities cannot steal the love of my family. Mostly, it cannot steal the love of my Lord. He’s promised to love me forever. In fact, “love” is one of the most used words in the Bible. Disabilities cannot steal my love for others. Jesus commanded us to love others – including our enemies. Having multiple health issues isn’t an excuse to not love others. Hurting and feeling bad doesn’t give me a pass on reaching out in love.
  • Change who I am. Health issues may change the things I can do. I may spend more time sleeping, and more time recovering from activities, but they cannot change who I am. My inner being. The part of me God created, illness cannot change.

Yes, I’ve lost much because of my chronic illnesses, but I’ve also gained much.

  • Patience – waiting for medical procedures and insurance is teaching me patience. While I’m still not nearly as patient as I should be, I’m learning.
  • Understanding – As nurse, when I first became ill, it gave me more empathy toward my patients. Now, I try to have more empathy towards those who don’t understand. When I have friends who make hurtful comments, I remind myself that they don’t understand what I’m going through. At times, my understanding flies out the window, but I’m trying to be more understanding and forgiving of others.
  • To be still. I used to stay on the go day and night. Being still was foreign to me. I didn’t know how to sit quietly and just be still. I didn’t want to be alone with my thoughts. Now, I’m learning to sit still and listen, but I’m better. God tells us to be still and listen to Him. I’m still working on sitting quietly and just listening to Him but having a chronic illness is teaching me to sit still.

I’ve been guilty of saying, “I have no life anymore.” Yet, nothing could be further from the truth. I have an incredible life. It’s changed drastically over the years, and I can no longer do many of the things I used to do, but I still have a good life.

Years ago we went on a cruise, and I chose shore excursions like climbing the Dunn’s River Falls or parasailing. ParasailingDunn's River Falls

Now, if we go on a cruise or a trip, I choose things that are easier. We took an Alaska cruise, and we didn’t go on any shore excursions. I used my scooter, and we explored the towns. While we didn’t spend long at any stop because I tire easily, we still had fun. Alaska

We spent a lot of time watching out our balcony windows and saw many beautiful sights like whales and icebergs.

IMG_1198 IMG_1648

My life has changed, but it is still a good one. God has richly blessed me in many ways. My prayer for you, if you find yourself with a chronic illness, is that you would look outside of the disabilities and see the good, beautiful parts of life that are left. The sunsets, the flowers that bloom in your neighborhood, the sound of the birds calling to each other in the trees – – find joy in the small things.

Happy New Year!

 

Happy New Year!

Happy New Year!

Happy New Year! I hope if your home is snow covered you’re staying warm.

I took this photo in Telluride last February. It was fun to watch the skiers, but I felt a longing for the life I used to live. The one before autoimmune diseases when I could run and play.

As the new year rolled around, I decided to focus on the good things in my life instead of the changes. You see, I’m very blessed. In spite of limitations and disabilities that are frustrating, I have a good, full life.

So often I focus on what I don’t have. For me, it’s rarely the beautiful new home, the new car, diamonds, etc. I often focus on the abilities I no longer have. Before I got sick, I earned my black belt in Tae Kwon Do. When I’m having a bad day, I tend to focus on what might have been had I gotten sick.

I loved sparring and won several tournaments, but I started getting ill right before I earned my black belt. By the time I received it, I could no longer compete. In fact, I could no longer practice. It caused too much pain.

This year, however, I plan to focus on my abilities. What I can accomplish in spite of my disability. My life has changed, but I still have a good, blessed life. It’s time to focus on the blessings. I have a good life and instead of lamenting what might have been, I want to focus on what is.

Will you join me in focusing on what you can do this year? I would love to hear your stories and how you’re changing your focus and making the this year the best ever!

You Know You Have an Autoimmune Disease When:

Woman

You know you have an autoimmune disease when:

  1. You wake up feeling more tired than when you went to bed the night before. Tired
  2. You take more meds than your 90-year-old granny.Pill bottles
  3. Your house looks like a medical supply store. You have shower seats, grab bars, wheelchairs, scooters, walkers, canes, etc because some days you’re lucky enough to only need the cane, but other days you need the wheelchair.Wheelchair
  4. You get wonderful advice from total strangers. Like: Have you tried: (insert whatever fad is in style right now, Aleve, exercising more, prayer, etc.; If you had more faith, you would be healed. My brother, aunt, mother, uncle, etc had that and did (insert wild advice here like drinking pickle juice or taking vinegar every morning.Pointy Finger
  5. After paying for your meds every month, you’re too broke to have fun…not that you have the energy to do anything fun.Meds/money
  6. People give you dirty looks or even make hateful comments when you park in a disabled parking space because “you don’t look sick”.file0001548736253
  7. You’re convinced blister packs are the work of the devil. file000237973770
  8. Brain fog is very real. It causes you to do some weird things like forgetting to turn off the stove. Miss appointments, etc.file000894312228
  9. When you rent a mobility scooter at a theme park, you get strange looks and the occasional eye roll.Scooter
  10. You have a love/hate relationship with steroids. They make you feel better, but they cause incredible hunger and weight gain.Ape
  11. Your hands swell and turn red with a flare making you nice and colorful.Hand
  12. If you had a ribbon on your social media profile for each disease you’ve been diagnosed with, there would be no room for your photo.file0001328197195
  13. You’ve learned to overcome that irrational fear and become an expert at giving yourself shots. file000381741411
  14. Most of your friends are now online friends who have the same or similar illnesses because they understand you.Giraffe

New Feature

Boy in sidecar

 

New Feature

I’ve added a new feature here at GimpyGal. Downloadable forms you can complete and take to your physician’s office. So far, I only have one – Autoimmune Profile. It has check boxes to assess Pain, fatigue, swelling, fever, etc. and it has text boxes where you can document questions, etc.

This document is a weekly document to help you and your physician evaluate the effectiveness of your treatment regimen.

Just click on the “Documents” link to view and/or download the available documents.

As time goes on, I will add other documents. If you have a specific request, please feel free to contact me.

Depression and Suicidal Thoughts

_DSC0293-2 - Copy

 

Depression and Suicidal Thoughts

 

With the recent death of actor Robin Williams, I felt it was important to interrupt my series on Rheumatoid Arthritis to talk about depression.

Studies show between 15 and 60% of people dealing with chronic illness, experience clinical depression. However, I believe at different times in the course of the disease, most people who deal with chronic illness and autoimmune diseases face some degree of depression. The diseases attack the body and once we learn what our “new normal” is for life, something changes, and we must accept a revised version of normal. This can lead to depression.

Depression is not a sign of weakness. Depression is not a sign you don’t have enough faith in God. Depression is not something you just push through and deal with.

Depression is a very serious sign that something is wrong and you need help to deal with it. In our “pull yourself up by the bootstraps world” we have difficulty understanding this insidious thief. It robs our joy, and steals our happiness, yet many times we don’t understand why.

Dealing with chronic illness day in day out is wearisome. Fatigue, coupled with pain, and flu-like symptoms takes a toll on the body and mind. If you’re experiencing depression symptoms along with your disease symptoms, please do not ignore them.

Symptoms of Depression Include:
  • Feeling sad, empty
  • Difficulty concentrating or making decisions
  • Loss of interest
  • Increased fatigue
  • Feelings of guilt, worthlessness, helplessness
  • Feelings of hopelessness
  • Irritability
  • Restlessness
  • Fixating on past failures
  • Insomnia
  • Sleeping too much
  • Persistent anxiety
  • Overeating or loss of appetite
  • Frequent thoughts of death
  • Suicide attempts
Warning Signs of Suicide in Depressed Persons:
  • A sudden switch from being sad to suddenly calm or even happy
  • Frequently talking or thinking about death
  • Depression that worsenings
  • Putting affairs in order
  • Tempting fate by risky behavior
  • Losing interest in things the person once cared for
  • Saying things like “It would be better if I weren’t here” or wanting out
  • Making comments about feeling worthless, or hopeless
  • Visiting those the person cares about

Depression must be taken very seriously. The risk of suicide with depression is high and anyone who expresses suicidal thoughts should be taken seriously. Call 1-800-SUICIDE (1-800-784-2433) or 1-800-TALK (1-800-273-8255) or the Deaf hotline at 1-800-799-4TTY (1-800-799-4889).

 

References:

http://www.lupus.org/answers/entry/can-lupus-cause-depression

http://www.webmd.com/depression/guide/detecting-depression

http://www.mayoclinic.org/diseases-conditions/depression/basics/symptoms/con-20032977