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.

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 Clinical Trial

 

Rheumatoid Arthritis Clinical Trial Seeking Participants

Rheumatoid Arthritis is a chronic inflammatory disorder affecting small joints in the hands and feet that affects about 1.5 million people in the United States today.

There is a clinical study available to those with Rheumatoid Arthritis, where the purpose of the study is to compare the proposed biosimilar study drug rituximab (GP2013) against a standard approved treatment rituximab (Rituxan®) to see if the study drug is as safe and effective in treating rheumatoid arthritis.

RA Card

More about the study:

  • The study drug (GP2013 and Rituximab) is administered by IV Injection (IV).
  • At least 174 people have already taken this drug in clinical trials

If you are interested, the full study details and eligibility criteria are listed here.

Eligibility Criteria:

Participants must:

  • be at least 18 years old
  • have been diagnosed with rheumatoid arthritis for at least 6 months
  • have had inadequate response or intolerance to DMARDs (disease-modifying anti-rheumatic drugs) and 1 – 3 anti-TNF (tumor necrosis factor) therapies
  • have received methotrexate for at least 4 months with 25 mg/week as the maximal dose

Participants must not:

  • have significant liver disease, or congestive heart failure
  • be taking a high potency of opioid analgesics (e.g. methadone, hydromorphone, morphine)

Please complete the online questionnaire to check if you’re eligible for the trial.

If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.

“My Relationship to CureClick” (full-disclosure link): http://curec.lk/1Gb4toG

Please note: Comments are user-generated and may not be factually accurate. Please click here for information on the trial.

New Clinical Trial for RA #RA Click To Tweet

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