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.

 

 

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.

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

Top Adaptation Tips for RA and PsA

Oral Meds

Those who live with Rheumatoid Arthritis, Psoriatic Arthritis, Lupus, Scleroderma, and other life limiting diseases know that daily life can be challenging. When the joints are painful or don’t work, modifications to a daily routine may be necessary.

These are some of the great tips I’ve collected from different people who struggle with these diseases. At the end of each suggestion I will post a link to the items on Amazon.

  1. Use pump bottles in the kitchen and bathroom. Oils, lotions, shampoos, conditioners, body wash, etc are all much easier to use when in a pump dispenser. If your items don’t come in pumps, you can transfer them to a variety of bottles. LINK
  2. An alternative to the pumps, place several rubber bands around the bottles to make them easier to grip. I don’t have a link to these, but when I use the rubber bands, I will wrap probably ten or so around each bottle.
  3. Ask for non-childproof containers at the pharmacy if you don’t have small children at home. If you must use the childproof caps, they make openers that make it easier to take the caps off. There are several different styles. LINK
  4. Use mobility devices like a scooter, walker, cane (I use a gel handled cane that makes it easier to use without causing pain to the hand LINK), or wheelchair as needed. Even if you don’t need a mobility device all of the time, use one when you need it. I started using one in Disney World several years ago. Now, my disease has progressed to the point that I use a scooter any time I will be walking long distances. This is a photo of one I rented many years ago. More recently I’ve bought my own. In the long run, it ended up costing less. If you decide to purchase one, shop around. There are many different styles and models. LINK  Scooter
  5. Grab bars for the shower and toilet will help prevent falls. LINK
  6. An elevated toilet seat with bars will make rising for the toilet easier. LINK
  7. Compression gloves. I use the IMak ones when I’m using my hands quite a bit. They do help a lot. In the winter, I will wear them under my other gloves as liners to help keep my hands warm and decrease the chances of a bad Raynaud’s attack. LINK
  8. A long-handled dust pan helps prevent having to bend over to when sweeping. LINK
  9. When having to reach for things, you can use a reacher-grabber. LINK
  10. If you have limited range of motion, bending can pose a problem. A device to help pull up socks can be a great help. There are several different styles and models to choose from. LINK
  11. Long-handled lotion sponges help spread lotion to the legs, feet, and back. LINK
  12. A foot-washer. LINK. Alternatively you could use a long-handled brush for your back and feet. LINK
  13. A shower chair in order to sit while bathing. This helps conserve energy and at times is a necessity due to pain. LINK.
  14. A shower nozzle on hose helps control water flow when using a shower chair. LINK
  15. A Swiffer sweeper and wep mop are an alternative to sweeping and mopping. LINK
  16. Bed Caddy to hold the things you need next to the bed. LINK.
  17. A stool in the bathroom so you can sit while getting ready.
  18. Extension cords for hair dryers, curling irons, flat irons, etc so the cords will be long enough to use the devices when sitting.
  19. Shower cleaning is made easier using a mop. A sponge mop has a lever that allows you to squeeze out the excess water without using using your hands. LINK.
  20. A steam mop or a combination steam mop/vacuum. LINK.
  21. One of those robot sweepers. They make several types and price ranges. LINK 
  22. A long pillow placed between the legs helps keep the hips in the correct position and will cushion the knees. LINK
  23. Rocker knives and soft-handled utensils in the kitchen help when hands don’t work well. LINK Also the OXO Good Grips makes several different types of utensils, mops, etc with soft grips. LINK
  24. A kitchen stool helps when preparing food when standing is a problem. LINK
  25. Rubber grippers for door knobs. LINK Or lever-type knobs. LINK
  26. Plastic cups, plates, glasses and cups or mugs with handles to help prevent breakage when dropped. You can also get the Tervis tumblers. If you drop them and they break, they will replace them free of charge. LINK
  27. Seat cushions for when your hips ache. LINK and Swivel seat cushions for cars and chairs that require twisting to rise. LINK
  28. Gas cap openers to make it easier to fill your car with gas. LINK
  29. Bottle openers for water, soda, etc. LINK
  30. Non-tie shoes or shoe laces LINK

Do you have any favorite tips or tricks that I haven’t covered? Please share them if you do!

Rheumatoid Arthritis Treatments – NSAIDs

Rheumatoid Arthritis Treatments

Oral Meds

 

 

There are many different treatments for RA. Some of the more common ones include NSAIDs (non-steroidal anti-inflammatory drugs), DMARDs (disease modifying anti-rheumatic drugs), steroids,  and biologics. Today, I’m focusing on NSAIDs

Anti-inflammatory drugs include (generic names used):

  • Ibuprofen
  • Naproxen Sodium
  • Aspirin
  • Celecoxib
  • Sulindac
  • Oxaprozin
  • Salsalate
  • Diflunisal
  • Piroxicam
  • Indomethacin
  • Etodolac
  • Meloxicam
  • Naproxen
  • Nabumetone
  • Diclofenac

NSAIDs work to decrease inflammation. They can work quite well in RA and other inflammatory diseases, however, they should be used in the lowest dose possible to help decrease the risk of side effects.

Side effects of NSAIDs can include:

  • Ulcers
  • Gastrointestinal bleeding
  • Increased bleeding tendency
  • Liver and/or kidney problems
  • High blood pressure
  • Edema

If you are taking NSAIDs for RA, your doctor will want to periodically assess your liver and kidney function. This is done through blood tests and if your liver enzymes or kidney function is not within range, your physician may ask you to stop the medications.

You should report ulcers or gastrointestinal bleeding to your physician right away. Symptoms of ulcer may include stomach pain and nausea. Gastrointestinal bleeding may present with coffee ground emesis, black or tarry stools, pale skin, severe fatigue.

Please consult your physician for any concerns or before initiating NSAID therapy.


http://www.webmd.com/osteoarthritis/guide/anti-inflammatory-drugs

Harrison’s Rheumatology: Editor Anthony S. Fauci

 

Rheumatoid Arthritis Complications

rt hand 5

Rheumatoid Arthritis Complications

 

Rheumatoid Arthritis is an autoimmune disease that can cause widespread complications.

Muscles and Joints: 

Joint deterioration and deformities making it difficult to perform daily tasks, like buttoning a shirt, pulling up a zipper, tying shoes, or even just pulling on clothing.

Carpal tunnel syndrome

Inflammation may cause tendon rupture. This most commonly affects the tendons on the back of the hands.

Cervical myelopathy – a dislocation of the cervical spine which can put pressure on the spinal cord.

Muscles may become weak and patients may have severe muscle spasms. In the photo below, the toes are spasming and pulling downward.

Spasming Toes

Nerves: Peripheral Neuropathy can result in numbness, tingling, and burning tingling in the hands and feet from nerve damage

Blood/Blood Vessels: Many patients with RA develop anemia, and some of the medications used to treat RA can affect other blood components, like the white blood cells. Anemia can lead to dizziness, weakness, and fatigue.  Decreased white count can make the RA patient more prone to infection.

Inflammation of the blood vessels, or vasculitis is a rare complication of RA. It causes thickening, of the blood vessel walls leading to problems with blood flow through the vessels.

Eyes: Scleritis and Episcleritis – inflammation of the blood vessels of the eye – can cause a gritty sensation and redness of the eyes. This can result in corneal damage.

Increased Risk of Infection: Just having RA makes the patient more prone to infection, but also the medications taken can put the person at a higher risk of developing an infection.

Skin: Rheumatoid nodules develop in about one fifth of RA patients. These nodules are usually under the skin and appear on the forearms, heels, fingers, and elbows. They may develop gradually or appear suddenly. These nodules may also occur in the lungs and heart.

Osteoporosis: Loss of bone density is more common in RA patients.

Lung Issues: Chronic lung diseases like interstitial fibrosis, pulmonary hypertension, pleural effusion, and nodules.

Rheumatoid Lung is a group of lung conditions commonly found in RA patients. It includes nodules, fibrosis, and pleural effusions.

These lung issues may present with symptoms of shortness of breath, chest pain, and cough.

Heart: RA patients have an increased risk for developing heart disease, heart attack, stroke, and blood clots. They also have a higher risk for developing pericarditis – inflammation of the sac surrounding the heart and myocarditis – inflammation of the heart muscle.

Cancer: RA patients have an increased risk of developing lymphoma, leukemia, and other cancers. Use of TNF blockers may possibly lead to an increased risk.

Emotional: Living day to day with a chronic, painful illness may lead to depression and anxiety, yet many RA sufferers don’t discuss this with their physicians.

While there are many complications of RA, getting an early diagnosis and following the treatment plan may help lower your risk of developing any of them.

If you have symptoms of any of the complications of this disease, please talk to your physician about it right away. Delaying may lead to worsening of the condition.

 References:

http://www.nhs.uk/Conditions/Rheumatoid-arthritis/Pages/Complications.aspx

http://umm.edu/health/medical/reports/articles/rheumatoid-arthritis

http://www.nytimes.com/health/guides/disease/rheumatoid-arthritis/complications.html

http://www.healthline.com/health/rheumatoid-arthritis-complications#1

http://www.webmd.com/rheumatoid-arthritis/guide/rheumatoid-arthritis-complications

 

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.