My Chronic Life

While I was looking for a video about using a terrible word that it now a common word, used by many, I found this video which I had seen on television before. This is a video made by a woman who has Autism and is unable to speak. Her video says so much though. It is about how people with disabilities as viewed as “non-persons”.

Amanda is able to tell us how she feels in a way that can only make us want to become advocates if we are not already. She is proud, intelligent and able to educate us by her “voice” that is so strong and powerful.

Please take the time to view the video in it’s entirety.

The sad passing of Bernie Mac who was not only a man who made people laugh in stand up comedy, on TV, especially on the Bernie Mac show and was an acclaimed actor in movies such as Oceans Eleven, Head of State and Transformers made people aware of a chronic illness called Sarcoidosis.

This disease usually begins in the lungs or lymph nodes. It is an inflammatory disease which causes tiny lumps of cells or granulomas to form. These can grow along with other granulomas in various organs of the body and damage the organs.

Besides the lungs and lymph nodes, the eyes, skin, liver, heart and spleen can be damaged. The disease can be mild, even stop producing symptoms or can get worse in time and permanently damage organs.

There is no known cause but the belief is that it is an autoimmune reaction to chemicals, pollen or other inhaled substances. It can also be genetic.

Diagnosis is determined by locating the lumps or granulomas. This is done by x-ray, MRI, PET Scan or other means. Treatment is usually Prednisone, immune suppressants and/or treatments for the organs that are damaged such as eye drops or inhalers.

Unless it affects the skin, Sarcoidosis is an invisible chronic illness. Although Bernie Mac’s publicist denies that this was the cause of his death, the knowledge of this disease can help others.

Learning about a rare invisible chronic illness makes it important for us to be involved with Invisible Illness Week being held on September 8 - 14. Even if you are not affected by a chronic illness, nearly 1 in 2 Americans live with a chronic condition and 96% of illness is invisible. Blog about it and then take part in the activities for this important week.

Do you think that Disney needs a Disability Adviser? I do and I want to be one!

Most of you know that I am a Disney addict. I’ve been to Disney World at least 300 times. We live close by are Disney Vacation Club owners so we go quite often. Since being diagnosed with Myasthenia Gravis, I have to use a scooter to get around. I can’t walk long distances any more.

I’ve come to learn that although Disney makes most things accessible to people with disabilities there is always room for improvement. I entered a contest where I can take part in my dream job for the day and win some spending cash too.

Will you help by voting for my video here? You can vote every day until September 25th. Thanks in advance!

Michal Savage has reached an all time low by going on a rant about Autism. I’ve posted about this on my other blog Brain Foggles but I want to reach as large an audience as possible with this information. Please do all you can to share this, to write to the advertisers to tell them to drop their ads for Michael Savage’s radio show, Savage Nation, and to ask your local radio stations to drop his show.

Here’s a bit of what I’m writing about so you can see for yourself:

How do you feel about support groups that are centered around a specific illness or health problem? I run a support group for people with chronic illnesses which hasn’t been meeting for a few months due to my being too sick to take charge of things.

I’ll be starting it up again in September and I’m looking for ideas to keep the group positive. I don’t want it to be a pity part but a group where we can find solutions to our problems or at least feel heard and understood. What ends up happening sometimes though is that we have several very lonely people in the group who don’t get out much. The group is their time to socialize which is fine, but it’s also their time to complain.

I can sympathize but I can’t let them control the group and have other people just listening. I’m not good at getting the conversation turned around to another topic. So we usually end up listening and I end up getting worried that the other members are getting annoyed. Our meetings go on too long also because of this. This is difficult for me as I’m there early to set up and then have to stay to clean up. I’m exhausted on meeting days.

Any advice or suggestions? If you are a member of a support group or run one, please let me know some of your ideas.

Hubby is walking away from me with a look of disgust on his face. He just finished telling me that I need to get to bed early. He knows that I’m worried about my appointment tomorrow with the Kidney specialist. He knows I didn’t sleep last night at all and so I slept in today plus took a nap. He knows I’ve been sitting at the computer too long this evening.

I know he’s right on every count, but do I listen? I’m here posting on my blog instead of getting ready for bed. I’m as stubborn as an ox, a ram, a donkey.

But being stubborn when you have chronic autoimmune diseases and complications is a good thing. It keeps me from giving up when times are tough. It keeps me searching for good doctors when I know the doctor I have isn’t helping me. It keeps me researching my symptoms and being assertive with my medical care.

Those of us who are in the chronic illness group need to be stubborn at times.