Wednesday, July 30, 2014

Site Move!!!

This Site is Moving!!!

I've recently changed to a self-hosted WordPress site for the Gimpy blog.

You can find it here: http://gimpygal.com/

Please come join me for more information on Autoimmune Diseases!



Tuesday, July 29, 2014

Disabilities in 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.

#3 - totally! If I'm one of first people on the bus, I won't even bother sitting down when I know that the bus will be completely packed. What's the point? There are always little kids/handicap/elders that will need a seat.
#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.



Before I developed RA
After Having RA for Many years
A couple of years ago.

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.
















Monday, July 7, 2014

Top Ten Things Not to Say....


Top Ten Things Not to Say

to Someone with an Autoimmune Disease

I compiled this top ten list with the help of others who suffer with various autoimmune diseases. My goal is to educate others on life with an autoimmune disease. Most people who make the comments listed below, do so out of genuine concern.

Autoimmune diseases are not easily understood, even by those of us who suffer with them. As a result, it's very difficult for those who do not have one of these diseases to understand what we deal with. 

I hope after reading this top ten, you'll have a better understanding of the disease and how it affects us.

10. Did you hurt yourself?

Many times those who ask this question may not realize the person has an autoimmune disease, but it is discouraging to hear that question from friends and family members who know you have a disease that affects the joints. It's hard enough to use a cane, wheelchair, or an ECV without hearing questions like this one.

The person asking the question is probably genuinely concerned, but since Rheumatoid Arthritis, Lupus, Psoriatic Arthritis, and many other autoimmune diseases tend to be invisible, those who suffer from them often feel judged by others. 

It is difficult to explain to someone that there is no injury, but the overwhelming fatigue and joint pain have made the assistive device necessary.

9. Have you tried Aleve, Tylenol, or any other over the counter medication?

We have. They aren't strong enough to touch our symptoms. Most of us are on prescription-strength anti-inflammatory medications along with many other drugs to try to control our diseases.

8. Have you thought about trying the Paleo, Atkins, gluten-free, etc - diet? 

Many times we have tried these diets at the urging of our families and friends. We all have someone who cares about us and tells us to try this or that diet, and we'll be cured because their friend was. While I wish the cure was something as simple as changing my diet, the truth is, it doesn't work. 

While a healthy diet and lifestyle will promote optimum health with these diseases, it won't cure them. Many people with autoimmune diseases do find some measure of relief from different diets, and I know of some who, with diet modification, can go off of their medications, but they are in the minority.


7. If you'll try this supplement, etc, it will cure your autoimmune disease.

The truth is, many of us have tried several of those "cures" to no avail. Unfortunately, there is no cure for the autoimmune diseases. When our immune system goes into overdrive and decides to attack us, there is nothing that will cure it - only medications that will control it. 
 

6.  If you'll just work-out harder, it will cure your arthritis.

How I wish this statement was true. Unfortunately, it won't. It may make the muscles stronger and better support the joints, if we don't work out to the point we damage or stress the joint. However, during a flare, the joints are inflamed and painful. Working out at this point will put too much stress on the joint.

5. Why are you in a wheelchair or scooter? You can walk.

I've read comments similar to this on many websites talking about theme parks. Some of the park goers become angry when someone who can walk, rents an ECV. While we can walk, and do want to walk part of the time, there is no way someone with an advanced autoimmune disease could walk the entire park. Fatigue and pain coupled with an unsteady balance and frequent falls makes walking the theme park dangerous for many with autoimmune diseases. 

Often people with autoimmune diseases struggle to walk the parks rather than have people make comments. This is detrimental to the person with the autoimmune disease and those around him/her. If that person falls, they may trip someone else injuring themselves and a bystander.

I honestly believe many people who make rude comments about those who use scooters in the parks, do so because they don't understand how devastating an autoimmune disease is, even though the person does not appear ill. 

Many who suffer from autoimmune diseases also deal with weight issues. Part of the problem is decreased activity. prednisone, a drug frequently used with autoimmune diseases, causes weight gain. So the person may look like a healthy, but overweight person who is using a scooter, but in reality, they may have a severe illness.
Out for Blood

4. Do you still have that? I thought you'd be over it by now.

Unfortunately, we've all heard this one. Yes, we still have the disease, and no we're not going to get over it. It's something we will deal with for the rest of our lives. 

Because the diseases tend to wax and wane over time, the sufferer may have more symptoms at one time, then have a period where symptoms are minimal. To the casual observer, it appears the person "gets better". When the person with the autoimmune disease has a bad flare, it's understandable why others are surprised that they continue to have this disease. 

3. You know, I have a little arthritis myself.

The arthritis associated with autoimmune diseases doesn't just affect our joints. It's a systemic diseases that can affect blood, organs, etc. It causes severe fatigue. A fatigue that is difficult for most to understand. 

The person with an autoimmune disease often wakes in the morning more tired than before he/she went to bed. The fatigue is made worse by the body-wide inflammation. 

When the person with autoimmune disease says they are too tired to do something, he/she means the fatigue is overwhelming, and it's impossible to complete the task. 

 2. Why are you parking in a handicapped spot?

If we waste all of our energy walking from the parking lot to the store, even if we use the motorized cart, we may not have enough energy to finish the shopping trip. Most of us don't use the reserved parking on our good days, but the bad days, we wouldn't make it without it.

While the person with an autoimmune disease doesn't look ill, they are. The fatigue and joint pain overwhelm at times making a handicapped spot the only option.

1. But you don't look sick.

Well-meaning people often say this to those who suffer from autoimmune diseases. While it's true, we don't look sick, we are still ill. It's an illness that will affect us for the rest of our lives and we are just trying to learn to deal with it the best way we know how. 

The majority of people who make this comment do so because they have a hard time reconciling the fact that a healthy-appearing person can be so illMost aren't being hateful or mean when they say this, but are trying to understand.

Hopefully after reading this list, you will have a better understand of what the person with an invisible, autoimmune disease must deal with.

 

Sunday, May 18, 2014

Join Me for World Autoimmune Arthritis Day!


World Autoimmune Arthritis Day is May 20, 2014. The goal of WAAD is to promote awareness of autoimmune arthritis and to educate.

I will host a chat on Educating Others on Invisible Illnesses

Often in our daily lives, we encounter those who don't understand invisible illnesses and often make rude remarks. This discussion will explore ways to cope with those hurtful remarks while educating others on invisible illnesses.

The chat will be at 10:00 A.M. Central Time and I would love to have you join me! There are also many other speakers I know you would love to hear.

To join the chat or attend any of the other session, you must register at World Autoimmune Arthritis Day.  There is a $7.00 charge to attend the session, but there are many sessions to choose from. 

I hope to see you at the conference. It begins on 5/19/2014 and goes through 5/20/2014.

Sunday, April 27, 2014

Scammer or Truly Disabled?

 A recent blog post on DisDining.com (http://www.disneydining.com/top-ten-behaviors-avoid-disney-vacation/) discussed the top ten things not to do in Disney World. While the blog post did not discuss scooter or wheelchair use, many of the commenters did.

I read over and over how people hated to see those who don't need a scooter or wheelchair using one in Disney World just to cut the line.

First of all, Disney generally send scooters through the regular queue, but if they cannot go through the regular line, the scooter will be sent elsewhere to wait. Many times the handicapped person and all in their party are waiting longer than the regular line. A few times the wait is shorter.

My question for those who made the derogatory remarks, How do you know the person is scamming? One woman stated she saw a couple who were sharing a scooter so they were obviously faking it. Perhaps one has heart disease and the other has disabling arthritis. It's possible they could each walk some distance, but cannot walk the entire park.

A couple of other people commented that almost everyone who uses a scooter is obese and lazy. My question for these people: How do you know? Maybe they are obese because of limited mobility. Perhaps they've been on high dose steroids for a long period which cause weight gain?
 
I've heard people complain about those who use handicapped parking permits and aren't "disabled". While there are people who may not need it, how many have invisible disabilities and are doing well just to go to the grocery store?
 
Many illnesses are not obvious, but they are no less disabilities. Multiple Sclerosis, Rheumatoid Arthritis, Lupus, Psoriatic Arthritis, heart disease, and even severe osteoarthritis are a few . Just because someone doesn't appear disabled, doesn't mean they aren't.
 
I realize many disabilities are invisible and many do not realize how devastating an illness like Lupus can be. Perhaps the next time you see someone who "obviously isn't disabled" you'll think about the invisible illnesses and give the person the benefit of the doubt.
 
 



Monday, January 20, 2014

Multiple Sclerosis



Multiple Sclerosis, an inflammatory autoimmune disease, causes a disruption in nerve function. The above illustration shows normal a normal nerve firing.

With MS, the myelin sheath covering the nerve axon becomes disrupted in patches (demyelination) exposing the axon below. When this happens, the nerve can no longer function correctly. 

The cause for MS, like many other autoimmune diseases, is not known. Patients are thought to have a genetic predisposition for the disorder that is triggered by something - perhaps a virus.

MS has four different classifications.
  • Relapsing-remitting is the most common form affecting 80% to 85% of MS patients. This form of the disease is characterized by exacerbations, neurological improvement, and periods of stability.
  • Primary-progressive is characterized by steady worsening over time with only occasional plateaus. This form affects only 10% to 15% of MS patients.
  • Progressive-relapsing MS has a steady pattern of worsening with exacerbations. It affects fewer than 5% of MS patients.
  • Secondary-progressive MS is characterized by a steady worsening between disease exacerbations. It eventually affects 50% to 60% of those with relapsing-remitting MS. 
The symptoms of MS can vary from patient to patient depending on where the lesions are and the extent of the disease. Some of the more common symptoms include:
  • Blurry vision
  • Double vision
  • Eye pain
  • Blindness
  • Color blindness
  • Muscle Weakness
  • Nerve pain
  • Tingling, numbness
  • Incontinence, frequency
  • Constipation

Many of these symptoms are found in other diseases also, so it is very important to work with your neurologist to get an accurate diagnosis. Once you have a diagnosis, the neurologist will work with you to find the best disease modifying drug for your condition. 

Some of these medications include:
  • Betaseron - injection
  • Avonex - injection
  • Extavia injection
  • Rebif - injection
  • Copaxone - injection
  • Tysabri - IV
  • Novantrone - IV
  • Gilenya - The first oral medication approved by the FDA in 2010
Links to informative websites:
  • http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001747/
  • http://www.webmd.com/multiple-sclerosis/default.htm
  • http://www.nationalmssociety.org/index.aspx
  • http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/basics/definition/CON-20026689

Sunday, December 29, 2013

Service Dogs



 Service Dogs

 
Most people thing of guide dogs for the blind when they hear "service dog". However, many people benefit from having a service dog.
 
Those with autoimmune diseases may need a service dog to retrieve dropped items, provide emotional support, provide mobility for those in wheelchairs, and many other tasks.
 
If you think a service dog is right for you, there are some things you should know. First of all, you must be healthy enough to care for the dog. He will need regular vet visits, food, fresh water, etc. If you're unable to provide these things, then someone in the home will need to care for the animal.
 
You will need to determine if you can train your own dog or if you would rather obtain an animal from a group like Canine Companions for Independence. CCI doesn't charge for their dogs. They are provided by donations. You can read about their organization on their website.
 
If you decide to train your own dog, you should first enroll in a basic obedience class. If there is a PetSmart in your community, they offer basic obedience and most will help you with advanced obedience. Our local PetSmart trainer will assist with training on some basic assisting behaviors.
 
For those communities where there isn't a PetSmart, try a local community college or ask at a local pet store if they know of anyone who provides basic obedience training.
 
Dana L. Marshall has some great advice and books on website. If you're thinking of self-training your dog, I strongly suggest reading the information on her website.
 
Assistance Dogs International provides standards for service dogs. They have a copy of the test they require members of ADI to administer before placing a service dog in a home. If you train your dog to their standards and your dog can pass this test, your dog is NOT considered certified by ADI.
 
Federal Law provides access for those with service animals. You are not required to have a certification. There are many companies that try to sell certifications without ever seeing the dog, but they are just asking for your money and are not necessary. A copy of the law may be found here.
 
Once your dog is trained, you may take him anywhere the public is generally allowed. Staff may only ask you two questions: 1. Is the dog a service animal required because of a disability, and 2. what work or task has the dog been trained to perform.

The staff may not ask you what your disability is, or ask you to show a certification of training. They also may not ask you to have the dog demonstrate his ability to perform the task.

You may download the PDF from the ADA site or Amazon sells cards that outline the law that you may give or show to anyone who questions you about the service animal.

In conclusion, if you feel you would benefit from a service dog, review the sites above, then decide whether you want to apply for a trained dog, or put in the work to train an animal to fit your needs.

If you have a service dog, I would love to hear more about you and your animal.