Category Archives: Uncategorized

The Morning After

I used the bio-mat last night. Dreamy. Slept well.

But here’s the kicker. My little guy heard me laughing in the kitchen. The teenager was IN THE SAME ROOM with me.

Direct quote: “You don’t laugh, mom. And you NEVER laugh when you are in the same room with HIM.”

And then, I started singing songs from A Chorus Line.

I’m going to say yes to the bio-mat.

If you can’t see the Light At The End of The Tunnel

Find the light within.

Methylation Study

I’ve been studying methylation. The work of Amy Yasko is amazing, and really resonates me with me. I had a nutreval done for both the boys and I got very discouraged by the docs we were seeing. They just prescribe the nutrients that are missing or have low values for. But, this mama keeps pressing. WHY are they so low? This must be a more complex issue.  Instead of it being a puzzle, it is more like a chess game.

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But they discount me and send me home with an expensive pile of supplements that have folic acid and B6 and at least one kid gets toxic. When I call the doc to discuss, he tells me that folic acid is water soluable and isn’t a problem, even if the body can’t use it. Ben Lynch, who studies and works with methylation believes differently. So, once again, I feel rudder-less.

I’ve found some lovely folks to study with. We are going through Amy Yasko’s books, chapter by chapter. I am overwhelmed.

Visit Dr. Amy’s forum. There’s lots of folks there can help you.

This is a complex world. But I’m determined to find my way around it.  And use the information to keep getting us stronger.

Super Freak. Super Freak.

I’ve made a decision to be that mom.  You know.  The one with the hand sanitizer in her mag-lite holder on her belt.  The mom who opens the automatic doors with her elbow, flushes the toilet with her foot and uses the paper towel from the trip to the bathroom to push the elevator button.

Yes.  That is I.  I am her.  And for the next year, I am committed to boosting my little guy’s immune system like never before.

Today I even said, “We aren’t freaks, we have wacky immune systems.”  That works.

Welcome To Lyme Disease – Where’s THAT Manual

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.

It’s Spring. I missed the mark. And there is still light.

So, I’m back online. But I’m trying to moderate myself. It’s hard not to have a computer/internet addiction when you don’t do much in the outside world.

I haven’t been blogging anywhere, really. Yet, there are people who are very curious about what we are doing for treatment these days. And then it hit me. I’m not blogging about our journey with photon therapy. And few people have.

So I guess this is my shout out. Do you think I should be documenting our journey? This is what we are using:

PE-1

This is the most well known blog about photon treatment for lyme.

Six Goofy Kids

I’d like to have a list of other blogs, but there aren’t many that I know of. If you know any, please share. And I’ll see if I can pull off some documentation of our journey.

The Great Lenten Internet Break

I did it. I gave up the internet for Lent. And it is hard. I’m writing/reading/blogging more. And on Mondays I get to jump on the internet and do some essential business, including posting.

The calming of the chaos and restricting the constant “being available” to everyone is teaching me big things, already. And some of those things are deeply unpleasant. When I stay busy and over connected, I am disconnected from the truth about how complex the health issues of my kids truly are. And, at the same time, I have to be faced to face with he lack of power and control I lack around fixing them and making them well. I see my impatience in every moment.

I am not powerless. I have the chance to act, and I do. But sometimes, I act too frequently. Processing everything that is going on via internet boards, facebook groups, etc. doesn’t give me back any of that power or give me any more control. This is my life, even if I stay too busy to focus on it.

Maybe it is more important just to observe. Watch. Listen. Trust.

It’s rough here in the quiet.