You won't "get it" until you get it and I hope that you don't

It's hard living with a disease that effects my life in so many ways. It's even harder when it seems as though the legitimacy of my my experience is questioned along with the way I handle it. I often feel as though people think I should be doing something different with my life right now or that if they were me they'd go about it in a different way, that somehow they'd be tougher, stronger, more resilient.

I understand this because they aren't in my shoes, they can't possibly know. When viewed from a place of health it is much easier to imagine how hard you would fight if you were sick or tired or ill. The reality of what I experience can not be known by them. The many little struggles and battles that I fight just to be where I am today can never be know by someone who hasn't walked in my shoes. You won't get it until you get it and I hope you don't. I really hope you don't.

I also hope that those who have a loved one with Lyme Disease or any other chronic illness would take the time to try to understand that person's unique journey and trust that at any given time we're all doing our personal best.

Below is a link to a letter written by Elizabeth Chalker who is VERY sick with Lyme Disease. Her pain and suffering is much worse then my own. I have experienced many of the things she speaks about, to a lesser extent, and want to share this letter with you. She expresses her self better then I imagine I can. Please take the time to read it and know that I have come a long way this last year and am always working toward my personal best. I couldn't imagine doing anything less.

http://www.publichealthalert.org/Articles/miscellaneous/Chalker-Understand.htm

A Look Inside

This video helped me to understand what is happening inside my body and why Lyme Disease can cause such a wide variety of symptoms.

Lyme Disease Awareness Month

May is Lyme Disease Awareness month and to participate I will be posting more information then usual about Lyme Disease. I will share both general information and my personal journey. I have two goals in doing this. The first is to educate and share knowledge. If my sharing can help just one person in any way then it will be worth it. I especially hope that this information will be useful to you so that you can protect yourself and your family from experiencing what I have been through, rephrase, what I am experiencing. The second goal I have is really more of a hope. I hope that sharing my story in will increase your understanding of what is happening for me and how it affects my life including my relationship with you.

I do not intend to complain or drone on about how bad my situation is. I have come to a place where I have accepted, for the most part, what is happening and I'm simply trying to make the best of an unfortunate situation. I also understand that my experience with Lyme is nothing compared to the pain and suffering many others deal with on a daily basis.

I just want to practice my love of education and participate in spreading awareness about Lyme Disease. Please understand that some of the information I share may be considered controversial. I'm not interested in arguing with anyone or debating my experience. I am however, willing to talk with you, answer your questions, and try to explain what I can. I just want to share what I have learned and I hope you will be able to see that it comes from a place of concern and caring. If I said nothing and someday one of you became sick with Lyme I would regret not sharing what I can. If I had really understood more about Lyme I might have gone to see a doctor much sooner and things might be different today.

To kick off Lyme Awareness Month I'd like to share this video from you tube. It gives a general overview of Lyme Disease. Thanks For watching and I encourage you to spread the word this month. I hope you have a happy and healthy May and enjoy the wonderful weather that is sure to come.

Thanks for your time, love, patience, and understanding. I love you all.

Yard Sale Success

Last weekend Janine, Jeff, and I had our round two yard sale fundraiser for Lyme Disease Treatment. It was a big success and a lot of work! Between the 2 sales we must have had 15-20 people donate items. Everyone was so generous with the quality and size of their donations. Janine's backyard looked like a genuine thrift store, with a little bit of everything you could imagine. On top of it we had a bake sale. It was a lot of work, but it felt good to know that we were all helping each other to get the treatment we need. Lyme literate doctors don't take insurance and most things need to be paid for up front and out of pocket.

Thanks to the generous donations and Janine's obsessive purging :-) we raised over $700 this time around making our grand total around $1300! That's amazing for a yard sale. Thank you to Janine and Jeff who worked so very hard even as their bodies were begging them to stop, to Rachel for asking again and again how she could help, to Sean and Linda and their kids for their generosity and loving support, to friends like Ambrosia, Leanna, Josh, Jim, and many others who delivered donations of awesome things. Thank you also to Asia who diligently worked the bake sale and sold a lot of cookies. And a big thank you to my husband who is there for me no matter what. I couldn't do this without his love, support, strong arms, and awesome truck. We could not have done this with out the support from each of you.

With my part of the money from the first go round I was able to pay for a doctors apt. with my LLMD. The money from this second adventure in yard sale land will help to pay for refills of my many supplements and herbs and hopefully will last long enough to pay for some of my next Dr. visit in June. I have also been receiving donations from wonderful friends through the donate button at the top of the page and have used those to pay for lab work and medicine. THANK YOU THANK YOU THANK YOU! The love and support I have received form my community has put a warmth in my heart, a smile on my face, and relieved some of the worry of paying for health care on a limited income. I'm not sure exactly how Janine and Jeff are using their part of the money but I do know that they can now afford to pay for their first visit with a LLMD!!! Horray.

I'm still tired and resting from our weekend adventure and I know Jeff and Janine are as well. It takes a while to rebound from such efforts and I appreciate your understanding and patience with me.

Thanks again from the bottom of my heart.

Doctor's Apt.

Yesterday i had another visit with my Lyme Literate Dr. She was happy to hear that I'm doing well on the Salt/Vit. C protocol as well as the liquid oxygen. She said sometimes people who are more sensitive respond better to the natural approaches then to the antibiotics. However, she also said that just because I am feeling better these days doesn't mean that I am actually getting better, but that there's a trade off and sometimes being able to live and enjoy life is better then suffering through the harsh antibiotic treatments. sShe's willing to gamble with the natural stuff a bit longer because she likes how well I feel.

My CD-57 test results went down again from 60, 69, 59, to 45. She said that sometimes you'll feel better long before your immune system recovers which is what this test is checking for. She said that for now we're going to basically ignore the results and go with how I feel unless we get another really low one when I return in 2 months. So wish me luck with this salt thing. I really hope it is working because while it's nice having more energy these days I'd really like to be done with all of this and be able to work, play, and live like I used to. I'll take the energy for now if that's the best I can get and I'll keep on keeping on. So the short version is things are the same except I'm going to add the Cat's Claw back in as an additional method of antibiotic.

WOLF School

Last week I had the perfect opportunity to return to WOLF School as a naturalist. I had 15 really cool kids from a Montesorri school come and visit. We had the camp to ourselves, it was really nice. On Monday I took them and their many awesome parents on a short hike into the redwoods and to the rhododendron garden at Monte Toyon. They really enjoyed getting inside the hollow redwood tree, seeing banana slugs, and learning about the albino redwoods. It was an early day for me and a long day, and I had fun getting back out there on the trail and playing with kids. I was so tired by the end of the evening I almost had a total melt down. I just don't have the endurance to move around that much these days.
Then, on Tuesday I met them at Natural Bridges State Park Beach. We collected beach treasures, made sand creatures with interesting adaptations, went on a solo hike, made friends with poison oak - a lot of poison oak, and visited the tide pools. That was a lot of walking for me and my knee started to hurt. I was grateful when it was over, but also would have loved to spend a whole week with those kids, they were really neat lil ones.
It was really nice to be out there doing what I love. I wish I could be doing it all the time, but after two days it was clear that I'm not quite ready to head back for reals. I will be however helping out with running a program in May. That should be easier because I won't need to be on the trails which will help me to conserve my energy. I hope the weather is really awesome when I go back. Camp Rocks!

Donate Button

Check out my cool new donate button over to the right -->
My wonderful friend Jeff did the behind the scenes work so that you can directly donate to my Lyme Treatment Fund. Thank you Jeff!

This couldn't come at a better time. I've run out of short term disability money and am not strong enough quite yet to go back to work. I'm working hard to get social security disability until I can go back to work with out killing myself, but the system has a lot of red tape and it's taking a long time. So in the meantime, I'm working on fundraising with my good friends Janine and Jeff who also have Lyme Disease to help us all ease the burden of Lyme related expenses.

We're having two Lyme Awareness yard sale fundraisers and looking into getting a band to play a benefit concert. May is Lyme Disease Awareness month and we're looking into hosting an information/fundraising both at the Saturday Market in San Lorenzo Park sometime in May.

Here are some ways you can help us:

- donate directly by clicking the donate button at the top of the page.
Any amount is helpful, even $5 makes a difference.
(there is also a button on Jeff and Janine's page at http://cruzjones.blogspot.com)

- donate your unwanted items to our yard sale fundraiser

- stop by our yard sale fundraiser this weekend Sat. March 26th to say hi and learn
more about Lyme Disease

- share this blog with your network


- cash in your recycling or that change jar you have laying around and donate it

- call or stop by and say hi

Thanks again to everyone who has supported us in the past and continue to offer support in so many important ways. We are lucky to have such a great community to help us get through this.

THANK YOU