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Welcome To Lyme Disease – Where’s THAT Manual

Posted Apr 28 2012 12:14am

I was so impressed by my dear friend’s organizational system, when I accompanied her to her final chemotherapy session. She had a notebook, her calendar, her water bottle. She was set. Ready. Go.

Granted, she has a very organized, scientific-minded brain, so she is hard wired for it, but still. She told me that she got a manual of sorts when she got a diagnosis of cancer. It taught her how to stay organized and get ready for treatment.

Wow. A manual. Something to help me get organized to deal with the upcoming treatments. An organization behind my illness. A following that hosts walks, and makes ribbons and host shopping days in honor of my illness. Hmmmm. . think that will ever happen?

I’m a little bit envious of the welcome wagon that exists within so many illnesses. I’ve met some great people who have helped me, I’ve helped others and I’ve got so many more to help. But a “Lyme Welcome Wagon,” complete with a manual on how to navigate the difficult terrain? I don’t think that’s out there.

So, I ask myself, “What do I wish I would have had, that I didn’t have?”

Lyme Welcome Wagon Manual:

1.) A list of doctors to see and the recommended order to see them.
2.) A nurse at the first doctor’s office visit to make all your other appointments for you.
3.) A notebook with a list of support groups, supportive websites, educational resources that I can check out as I feel ready.
4.) A list of attorneys that can help with a longterm disability or social security disability attorneys that have a history of winning claims for people with invisible illness.
5.) Emotional and financial resources for the family.
6.) Contact with a social worker who actually KNOWS how to help a family with multiple chronic illnesses in multiple members of the family.
7.) Neutral reviews of a variety of treatments that have shown to be successful.
8.) Burrascano’s Guidelines
9.) Websites that offer Pilates instruction, EFT training and other beneficial adjunct supports.
10.) Truth about the psychological manifestations. Tell me that lyme causes serious mental health challenges. Just tell me. It’s not like I don’t already know.
11.) Information on why testing for Lyme is often a big fail.
12.) A book list. Complete reviews.

What chapters would you like to see in that manual? I’m nearly 4 years into this journey, and I still want a manual.

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