Sunday, July 25, 2010

Life isn't Fair

Lyme Disease Awareness Press Kit Assembly

For the most part I act like life is hunky dory. It's not really an act, it is how I choose to live. I have a chronic illness that is not recognized by the Infectious Disease Society of America, IDSA. Sounds strange I know, but it is true and it makes life difficult to say the least.

How can they say that chronic Lyme disease isn't a real disease when there are thousands of us out there suffering from it and more being diagnosed everyday? I don't know, it's political and controversial. Are we suffering for someones political agenda? So someone can make money off a patent? Because insurance companies don't want to pay for chronic/long term treatment?

What ever the reason is, the reality is I'm sick and so are thousands of my friends. We can no longer work, we move home with our parents, we can't pay our bills, we are in and out of the emergency room on a regular basis, we struggle just to be present in our lives everyday and some of us die.

I'm lucky. I'm not as sick as many of my fellow Lymies are. Why? Who knows, just luck or maybe genetics no one knows for sure. Not being "as sick", doesn't mean I am well though. I can't work, I take naps almost daily, my cognitive function isn't always there, I get confused, exhausted, irritable. Maybe it sounds normal, but this is to debilitating degrees.

When I need a nap it isn't because I'm a little tired, I literally can no longer function. If I get confused, I can't think or talk coherently. I have pains in my body that would send most people straight to the emergency room. I'm use to these things now. I no longer think that I am dying like you probably would if you had to spend a day in my body.

I have good and bad days. I spend a lot of my good days working on Lyme disease awareness projects. I don't want others to have to go through what I have been through and what I am still going through.

If I had known about Lyme disease and had been diagnosed early on, I wouldn't be in the position I am in now. I want to do everything I can to spread Lyme disease awareness so fewer people become chronically ill with this very real illness that "doesn't exist".

Today I had planned to have a crafty day. I really wanted to get some sewing done. It was a good day though and I have been working on Lyme disease press kits to send out to celebrities and talk shows for over a month now. I finally had all the pieces and I just needed the motivation to put them all together. Today was the day. I'm proud of what I got done. I can't wait to send all the kits out. They look great and are very compelling.

Please take the time to learn a little bit about Lyme disease by watching this trailer for the movie Under Our Skin. You never know, you might see yourself or a loved one in these lives.
The link is kinda weird it starts playing here then redirects you to the snagflims site, it's worth it.

Watch more free documentarie
For further information about Lyme disease visit-


  1. Right on the money, Ash. Well said

  2. I'm impressed with all that you've done, the kits look great and the sewing projects are first class.

  3. I think it's great that you're doing what you can given your circumstances. Keep it up.

  4. Beautifully written. It's an honor to work with, and know you.

  5. Living with adversity is always hard and unless you or a loved one are effected by a disease or disability it is difficult to appreciate the everyday struggles faced by people like yourself.
    I had no idea just how limiting life in a wheelchair could be until my brother in-law became a quadriplegic after suffering a C5 spinal cord injury. Newly married with a 1 yr/old daughter, his life, his family's and even my life was changed forever. Like your struggle to raise awareness about Lyme disease, we have all found the lack of treatments available for spinal cord injuries here in Australia to be overly frustrating.
    I hope your efforts are successful and that you can instigate change for those in your position who suffer with Lyme Disease.


  6. Linda from Facebook. I want the wallet.

  7. Laura Beaver UscherJanuary 18, 2011 at 7:29 PM

    I love ur outlook...


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