A Rough First Round...

Modified from email sent March 20th, 2006.

Hello My Dear Family, Friends, POTSPals (and now, Lyme Buddies!),

It's been a long while since I have been in touch with many of you and I wanted to get out a little update...

You know when your internet service goes out, the cable goes out or the electricity goes out? You call the company and get a message:

"We are currently experiencing technical difficulties and are working to repair the problem as quickly as possible. We apologize for the inconvenience. Thank you for your patience."

Well, since I didn't get a new body from Harry Hannukah, we are having to work with the body I have and, oh my, are we having technical difficulties! And, I am sorry again for all of the emails and calls I have been unable to return!

I started Lyme treatment with antibiotics, but became so sick on them (think post-surgery last year) that we had to stop them. This is called a herxheimer reaction and in some ways helps us to confirm Lyme disease. As the Lyme bugs die off, they release toxins in the body that make you feel worse.

We (the docs and I) are trying to stabalize my Autonomic Nervous System more before I re-start antibiotics again. It has been a rough start to 2006 and I have been unable to do much of anything other than feel lousy and am in bed a lot. Certainly frustrating. I have very little energy and most of what I do have goes to 'surviving', communicating with docs, or going to the l'hopital to get fluids....

I am armed with the best for the situation:

1. Lots of love from family and friends. Parents who take such good care of me.
2. Lots of Jewish Penicillan (homemade chicken soup) from my Mom
3. Books on tape (when I am able to listen). I just finished Harry Potter and the Order of the Phoenix and am now listening to The Jane Austen Book Club.
4. A gorgeous prayer shawl to comfort me--brought to me by Maxine (massage/PT person) and knitted by women who are part of the Prayer Shawl Ministry
5. LOTS of pajamas to keep me comfy and warm! (I have an obsession with PJs)
6. A comfy bed
7. Kisses and cuddles from Asher
8. Docs who are working super-duper hard for me
9. Music (your suggestions for beautiful music welcome!)
10. All of YOU. Your news brings me such joy--I delight in hearing the details of Payson's first steps or Owen's new words, the details of Carrie's wedding, the adoption of Lianna, Ang's trip to Lake Tahoe--and just the 'stuff' of every day life--both the sorrows and the joys. Thank you.

I wish I had more uplifting news to share...With someone who has been sick with Lyme for as long as I have, treatment will be long and difficult and things unfortunately get worse before they get better.

However, I know of so many 'resurrection' stories of people with Lyme disease, that I want so badly to come out on the other side of this. I want so much to come out of this feeling well enough to come visit all of you! So, while I know it has to get worse, we may also for the first time in 8 years, be on the right track towards healing.

As always, thank you for blessing me with your LOVE and PATIENCE. Know that even during my silences, you are in my heart every day.

Trying to be a patient patient...

Love and Blessings,
Emily

Photo: Crocuses: the first flowers of the year. They bloomed early this year, and still managed to survive a couple sprinklings of snow! Two of my favorite things to do each day (if I am able) are to walk to the mailbox and to take a 'tour' of the yard. I LOVE seeing how it changes every day through the spring, summer and fall.