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

 

Dizzy Blonde

Dizzy

For the last year or so I’ve been battling with intermittent dizziness. Sometimes to the extent that I couldn’t stand.
I never know when the dizziness will hit or how long it will last. It’s been quite a challenge. When the neurologist reviewed my brain MRI, she couldn’t find a reason for the intermittent dizziness, so she sent me the “dizzy doctor” – a neurotologist.

My primary care physician was concerned that I might have Ménière’s disease. When I saw the dizzy doctor, I told him of my PCP’s concerns.

He asked me a million questions. One of the questions was about migraines. I told him I used to have migraine headaches years ago, and I now have ocular migraines. An ocular migraine is where you have visual disturbances without the headache.

Since I have ocular migraines, the doctor said I was much more likely to develop vestibular migraines. I had never heard of vestibular migraines, but he explained that they affect balance and cause dizziness.

He started me on a migraine diet, but wanted to do some more testing. After the testing, because there were some abnormal results in one of the tests, he sent me for an MRI of the brain with the internal auditory canals (IACs).

The MRI came back normal. No tumor on the auditory nerve, so that’s good. I go back to see the dizzy doctor in a month or so and we’ll see what his final diagnosis is, but I would bet he says I’m having vestibular migraines.

I’ve been a nurse forever and this was the first I’d ever heard of vestibular migraines, but I’ve never been one to do things the easy way.

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!

Disney World with Mobility Disabilities

Epcot

 

If you have a mobility disability, Disney World can still be fun. It takes a little pre-planning, and maintaining realistic expectations, but it’s still worth the effort.

 

I’ve gone to WDW many times over the last 20 years or so, and have had a disability since the first time. For several years, I was able to push myself and walk the parks, wait in line, etc, but I always went to the room early and left my family in the parks.

As my illnesses progressed, I got to the point of either needing a wheelchair or an ECV. Since I can’t use my hands to push the wheelchair myself, I chose the ECV. I chose the scooter for two reasons. One, I didn’t want my husband to have to push me all of the parks, and two, when I get tired I usually go back to the room early and leave the guys to enjoy the parks. If I used a wheelchair, I would be unable to go to the room by myself.

The first few years I rented an ECV. It makes a huge difference. Without the scooter, I wouldn’t be able to enjoy the parks at all. In fact, I wouldn’t make it from the bus drop off to the gate. More recently, my disability has progressed to the point that I need a scooter much more often than just in in Disney, so we purchased one.

Disney works very hard to accommodate those of us with disabilities, but they are also striving to make it equitable. In the past, if the regular queue did not accommodate a wheelchair or an ECV, they would send the user in the exit line or through the fast pass line. Now, you are given a return time that equals the wait in the regular line unless you have a fast pass for the attraction. However, most of the newer attractions have queues that a wheelchair or an ECV will easily fit through.

Those with disabilities that prevent them from waiting in lines must get a DAS or Disability Access Services card. For more information on the DAS card, click here.

If you have a mobility disorder and choose to use a scooter, there are a few things you should know. You may rent a scooter in the park as long as they have them in stock. However, you may also rent from an off-site vendor and have the scooter delivered to your room so you will have it for places other than the WDW parks. A list of several vendors is at the end of this article.

For those using Disney transportation, most of the rented scooters will work with the bus systems. If you’re staying offsite and driving to the parks, you can rent one that break sdown into multiple pieces. The one I own breaks into four pieces and easily managed. When using Magical Express, my husband breaks it down, and it’s stored beneath the bus.

If you plan to use an ECV, it’s a good idea to decide before you go whether you want to rent in the parks or from one of the vendors. The vendors will deliver the scooter to your bell desk and have it waiting for you when you arrive, but you do need to make reservations ahead of time.

Whether you rent offsite or in the parks, take some time to drive it around in a less-populated area to familiarize yourself with the scooter. They aren’t quite as simple to operate as they look and not all handle the same way. The ECV I had the first year felt like I was driving a tank. I had to make wide turns, and it was impossible to manuever in tight places. The following years, I found a brand that I felt was easier to manage and stuck with it. In fact, when I purchased my own, I bought that same brand.

Until you are very comfortable with the vehicle, it’s a good idea to keep it in the lowest setting. Mine usually stays in turtle mode or slightly above that. Even in turtle mode, I find it goes too fast for the traffic oftentimes. I find most of the time I have it set on the slowest speed and don’t fully depress the accelerator.

It’s also very important to watch for those who make sudden stops or step out in front of you. When driving an ECV you tend to become a little invisible. Possibly because you are lower than most people’s line of sight. I’m often lagging behind my family quite a bit because people step in front of me or I get caught up in traffic. It takes patience to navigate a crowded park in a motorized vehicle without running over anyone.

Realistically, even if you go during a slower time of year, you won’t be able to do everything and ride every ride if you’re using a mobility device. Everything takes more time and is a little more work when you’re using a wheelchair, walker, or ECV. When you’re planning your trip, decide which attractions are the most important and make sure you do those. Then if you have time, add in the ones that aren’t on the top of your list.

You may also need to watch for other ECV users. On a recent trip to Disney World, I had to stop suddenly (causing those behind me to run into me) because two women were on ECVs they’d rented at the park going full-speed and heading right for me. If I hadn’t stopped, the first one would’ve slammed head-0n into me and the woman behind her would’ve hit her.

Which brings me to another point. If you read some of the Disney blogs you will find many people who make very hateful comments about ECV users. Some are justified because the commenter has had someone run over him,b ut many are just grumbling. When you are first contemplating renting an ECV these comments can be quite daunting.

In reality, I’ve encountered very few people who are rude to me when I’m using a scooter. In fact, I can probably count them on one hand. One woman dragged her child across me because she didn’t see me (remember the invisibility I warned you about?) and became angry because she thought I had run into her child, and I’ve had a few people give me dirty looks and sigh.

However, the majority of those visiting the parks are very nice and have treated me quite well. On our last visit, I pulled up to the ECV boarding area to leave the park when the line was very long in the regular queue. The attendant told me he could get me on the bus that was pulling up, but I declined since I hadn’t been waiting but a few minutes and many people in line had been waiting quite a while. As they boarded, a man came up and apologized that the bus driver didn’t see me. He was chaperoning a large group of teens and even offered to make them all disembark the bus so the driver could load me on it.

If you are contemplating visiting Disney using a scooter, don’t allow some of the hateful comments you read online to deter you. Rent the scooter and enjoy your trip. It’s definately worth it to see the look on your child or grandchild’s face when you walk into the park and see the castle for the first time.

Scooter and Wheelchair Rentals:

Apple

Buena Vista

Yellow

Scooterbug

Walker Mobility

Disney

 

 

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!

Disabilities in Disney World

Disney World

There has been much discussion on the DisDining Blog on her Top 10 Bad Behaviors on a Disney World Vacation. Her number 6 urges park goers to watch out for strollers, wheelchairs, and scooters and not cut them off because none of these can stop quickly.

Many of the people have made some remarks about those who use scooter and/or wheelchairs. These comments show a lack of understanding about invisible diseases like Lupus, Rheumatoid Arthritis, Psoriatic Arthritis, Multiple Sclerosis, Heart Disease, severe Peripheral Neuropathy, and many, many more.

The comments ranged from frustrated to cruel. Here are a few examples:

there are privileges for people in wheel chairs at Disney also. One year we had to use it for our daughter when she had rods put in her back. BUT the number of rude people in wheel chairs and parents pushing strollers is huge. I could bet that 80% of the people who use them don’t really need them at all. Most are overweight and that is their excuse for using one.

One pet peeve of mine is scooters going to the front of the line. I am fine with it obviously if you are handicapped and you truly cant stand in line but a person who has a scooter because they are overweight or have a sore ankle and brings 5 or 6 people with them to the front of the line and then get off the scooter and walk onto the ride. Its fine to have a scooter to get around the park to cut down on the amount of time you are on your feet but if you can walk on your own then wait in line like everybody else.

#6 – this is a two way street! I won’t cut them off, but most of these people upset me every day on my trip because they are using wheelchairs when they don’t need to or they are constantly cutting me off!

The fat ppl who rent the motor scooters ans practically hit and run ur children. Also obesity is not a handicap and an excuse to cut the line. A bunch of excited four year olds should get first crack at pirates or the mansion over someone who ate too many fries to walk

I have to agree with most, however im not a 100% in agreement with #6 as I read on a lot of people also feel the same way. If I see a family walking with a stroller I will stop and stop my children so the rest of the family with the stroller can stay together that’s not a problem for me. My problem is the scooters and the wheel chairs . If some one is in a wheelchair or scooter for a medical reason fine its the over weight people and the lazy people that don’t feel like walking all day that drive me crazy . So stay back at the pool. I don’t mean to sound mean but some people use the wheelchairs and scooters to hold bags and to cart young tired children around or they are too heavy to walk . Now, aunt gertie lets little Bobby drive the scooter in circles while waiting for his family to come off space mountain and running everyone in sight over. And instead of saying oh im sorry they think its cute lil Bobby is driving a scooter. like I said before stay back at the hotel lil Bobby im sure will tell you all about his trip to magic kingdom in the morning.

The over-reaching think I see, is many of these people believe those who rent scooters and don’t look ill, are just fat and lazy.

I do realize some of the people making these comments do not want to understand chronic, invisible illness and nothing anyone says will make a difference, but there are some people who honestly don’t understand invisible illnesses and think if someone looks healthy, they are. After all, most of us with chronic illnesses strive to look our best when we go out in public. We actually put on make-up, dress decent, and try to appear normal.

In this post, I’m going to focus on autoimmune diseases in general. Future posts I will delve into the individual diseases and the symptoms caused be each one. Hopefully some of my friends who suffer from various diseases will allow me to share their photos.

Below, I’ve shared some of my photos. This is something I rarely do, but I thought it was important. I don’t look ill, in spite of having more than one autoimmune disease.

The first photo is before I developed the autoimmune diseases. Second is several years after a very bad flare necessitating prednisone for many years. The third photo is more current. I’ve been off prednisone except in short bursts for several years.

In the middle photo, it’s obvious that I’m quite heavy, and in the last photo, I’m still heavy. It’s something I’m working on, but it’s difficult when mobility is limited. The point of the photos is, while I look obese in the last ones, I don’t look ill.

Most people with autoimmune diseases look just fine. We don’t have missing limbs, limbs in casts (unless we’ve had recent surgery or a flare causing problems in a specific joint). In fact, to look us most people would never know we had a chronic illness.

I’ve shared these photos to show how chronic illness has changed me. Before I developed RA, I was very active: went to the gym three days a week, took Tae Kwon Do three nights a week, and played football, volleyball, went bowling, dancing, etc on the weekends – in addition to practicing Tae Kwon Do. I was young, energetic, and healthy.

Fast forward a few years. The middle picture shows what immobility and prednisone can do to the body. This photo was taken after I’d been on prednisone for many years. I didn’t like the changes in my body, but there was little I could do. 

Finally, my physician found the right combination of medications and I’m no longer on prednisone except in short bursts. I am still overweight. It’s a long road to return to a healthy weight.

My diseases have progressed to the point that I now must use a scooter to go any distance. I haven’t been able to go to Disney World or Disneyland for several years without the use of a scooter. If I’m going to a large store, I have to use one also.

People look at me like I’m “fat and lazy” and use the scooter because I don’t want to walk. This couldn’t be any farther from the truth. I would love to be that energetic girl who went non-stop once again, but unfortunately I cannot. For many years when we went to theme parks, I pushed myself and refused to use a wheelchair or scooter, but these diseases don’t stand still – even with medications the disease progresses. Not like it would without the medications, however. 

Most autoimmune diseases cause the following symptoms:

Fatigue – unlike normal fatigue, the deep, bone-aching, intense fatigue isn’t relieved by rest. Many times those with autoimmune diseases wake up feeling even more tired than when they went to bed. Many times we cannot do the things we really want to do. It’s frustrating for us, then when others get angry or upset with us over it, it multiplies the symptoms.

Muscle and Joint Pain – This can range from burning and aching to feeling like someone has a jackhammer destroying the joints – which in the case of Rheumatoid Arthritis and Psoriatic Arthritis – is kind of true since the body’s immune system is destroying the joint. The pain may also move. One day it may be the feet, the next the hand. It can also move hour to hour. Many times it’s a generalized achiness. 

Fever – at times people with autoimmune disorders will have an elevated temperature. With some AIs (autoimmune) it can be a low-grade, but in others, the fever may go quite high.

Hair loss – The hair loss can be caused by the disease or by the medications to treat the illness.

Flu-like symptoms – All AIs cause generalized malaise, or ill-feeling. Think about how you felt the last time you had the flu. People with an autoimmune disease feel like this most of the time. 

Brain-fog – This symptoms comes and goes, but it causes the person with the autoimmune to feel a little disoriented. It can be caused by the disease or the medications.

Depression – Finding out you have a debilitating, chronic illness that you will deal with for the rest of your life is depressing. Then you add medications that can cause depression to the mix and most with autoimmune diseases suffer some degree of depression. 

Isolation – while this is not a direct symptom of the disease or medications, it is a result of not being able to fully participate in life. We do go on vacations, to family get-togethers, etc as much as possible, but for the most part, we spend a great deal of time alone.

The next time you see someone using a wheelchair or scooter, even if they can “obviously” walk, keep in mind, while they may walk a little ways, walking the entire park, store, mall, etc may be overwhelming due to the fatigue and pain.

Try to imagine living your life with a bad case of the flu. Every. Single. Day. You ache all over, feel exhausted, and have fever, dizziness, and nausea at times.

Most people who get the flu go to bed, take medication, and put life on hold until they recover. Those with chronic illnesses don’t get that luxury. We must push on for our families, and because we want to be a part of life. Being absent from life adds to the feelings of depression and isolation.

Before you make the harsh comments, stop a minute and think about those who have invisible diseases. The comments about us just being “fat and lazy” do hurt. We would trade places and walk the parks, stores, etc at any time. However, we would never wish this illness on you or anyone else.