Anniversaries: Turtles, Butterflies and The Number 8

On June 18, I marked the eight year anniversary of getting sick. We know the EXACT day that I got sick.

We never know quite how to 'mark' this date.

This year, we decided to 'celebrate' with a sparkling non-alcoholic beverage and toast to this being THE year of hope and healing. I've already passed through my 20's with this illness, and am really hoping that my thirties are going to be full of healing. Also, eight just happens to be my very favorite number, so I'm hoping that will bring a little luck along with it!

I see the next year as a time of 'cacooning' or 'hibernation'. Both turtles and butterflies seem to emerge over and over in my imagery and in my life. Both speak to me and my journey.

The Turtle: I feel like a Turtle because I must take things VERY slowly. And I must be very PATIENT. So much of what I am learning during these eight years is about patience. I'm reminded by many that the path to healing is NOT a race...and to be the tortoise, and not the hare through the Lyme treatment. Years ago, I began writing a 'book' about my illness experiences and I titled it "From Turtle to Swan." I long ago, set that writing aside for another time, but it is ironic that years later the image of the turtle has resurfaced for me. I feel this is a time to hibernate in my shell, as a turtle does, and let my body have the time it needs to heal. I must let go, surrender and leave the antibiotics to work their way through years of damage to my body from the Lyme spirochetes. I must not keep poking my head out to say, 'Am I better yet?', 'Are the antibiotics working yet?', 'Should I be better yet?', 'Should I be moving 'faster' on the treatment course?'. I need, instead, to give my body TIME to heal, and in the meantime, stay patient and protected in my shell. I feel very much like this part of the Lyme treatment is ENDURING the treatment process and doing that best to survive that while the Lyme dies off. That is why, I feel like I need to hibernate a bit...so if you notice I am more quiet than usual...I'm putting all of my energy into healing so that I can poke my head out of the shell and see the world anew.

The Butterfly: Many of you know, as my 30th birthday approached, I made the butterfly my symbol of hope for this decade. Right now, I may be a turtle, but I feel that when I 'emerge' from my shell I will want to be a butterfly! :) The turtle reminds me how to APPROACH the journey and the butterfly reminds me of the BEAUTY of the journey. And like the turtle, the butterfly must be in a cacoon before it emerges with wings, ready to fly. I always think of Heimlich in 'A Bug's Life'--the caterpiller who wants to be a butterfly! And at the end, he pops out of his cacoon with these little bitty wings on his big body. "Look!" he says, "I'm a beautiful butterfly!" So, right now, I'm a turtle who's a wanna-be butterfly. But, I feel my wings growing little by little.

I find myself, at this moment, although weak in body, strong emotionally and spiritually. I hope that I can hold onto this through the process of treatment.

I hold onto the beautiful words that my dear 'Mommy Bev'--mother figure, friend and fellow Lymie--wrote to me: You might be a turtle presently but with the "kiss" of those antibiotics it is my belief that you will eventually lose that cumbersome shell and sprout those wings to match the ones already in your soul.

Blessings,
Emily

Photo: African Violets blooming, blooming, blooming! I received these as a gift from some of my Mom's colleagues after my gallbladder surgery in January 2005 and they are just this summer, for the first time, blooming again. Gorgeous!

Round Two: The Tortoise and the Hare...

"Do you remember the story of The Tortoise and the Hare?" my Lyme doctor said to me last week. "Well, I want you to be the tortoise, not the hare!"

So, what does this mean in terms of where I'm at with the Lyme treatment?

As you all know, the first round of antibiotics made me so sick that I ended up heading to the emergency room by ambulance for dehydration. I probably just increased the dosage of doxycycline too quickly, had too much 'die-off' of Lyme bacteria, and overloaded my 'sensitive' system.

After stabalizing me with some new meds--and the passage of time, we started antibiotic treatment again.

I am now at dose number 10 of minocycline. I started at the end of April. We started with ONE dose per WEEK, and I am gradually working to decrease the intervals between doses. Right now, I am taking one dose every five days.

The first day after I take a dose of the mino, I feel like a 'wet dishrag'--extreme exhaustion, weakness, tachycardia, achiness, joint pain, sweats, brain fog, etc. By the time I am ready for the next dose, things have settled down a bit. The goal is to be able to tolerate treatment, and not overload my system like I did last time...

My reaction to the antibiotics is consistent with what is called a 'herxheimer reaction', so we have hope that we are on the right track.

I'm feeling cautiously optimistic. During the period that I was off of the antibiotics (after my system had stabalized), I started to have some 'windows' of cognitive clarity where I could do more email or talk on the phone. I had a bit more energy and felt a bit more 'human', which was exciting.

The Swahili saying that my friend Ted taught me remains my motto: Slowly, slowly, that is the way. Quickly, quickly, it gets you nowhere.

Blessings,
Emily

Photo: Taken from our living room window the other day. This bunny didn't even notice me open the window and shoot several pictures of her!

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.

Antibiotics: The First Go Around

Modified from update sent via email January 29th, 2006 to family and friends....

It has been ages since I have sent out an update. I've been waiting to have some 'news' to share. It's been a busy couple of months...and this update is a bit long! Sorry!

Most developments have happened on the medical front--so I'll sum that up first. (For those of you who are not medically minded just skip over this part!). As most of you know, we travelled to NY in November to see a Lyme doctor.

In short--we have decided to take a leap of faith (as my doctor says) and treat me as if I have Lyme disease. I am getting ready to start high doses of antibiotics.

I feel a mix of emotions: Excited that we finally have some direction for treatment. Terrified about how I will tolerate treatment and whether I will respond to treatment. Frustrated that we didn't think of Lyme as a possibility sooner. Uncertain whether this is the right direction or not. Hopeful that we are at the beginning of finding answers and healing. Grateful that I now have two amazing doctors helping me.

The visit and testing with the Lyme doctor were very extensive, however Lyme testing is a very murky area of medicine. The tests are inadequate and difficult to go on. My test results from the first round came back 'suspicious but inconclusive' according to the Lyme doctor. We then did some repeat testing and got another positive result--making it less likely that the earlier positive was a fluke. However, my 'positive' is not super-strong. I have some bands on the Western Blot, and a reactive Elisa.

In the meantime, I had several MRIs done to rule out a possible anatomical cause for my POTS, such as cervical stenosis or Chiari malformation. These came back clear, which made my main specialist lean more towards Lyme disease. I was able to have a long phone consult with him this month. He uses a wellness scale--and rates me a 20/100. Yikes! In patients like me, who have been unresponsive to all of the treatments available for the POTS, he feels that there is usually something else going on such as the anatomical abnormalities that the MRIs ruled out. Given my level of neurological symptoms (cognitive problems, pain, etc), he felt that Lyme was a possibility. He has had a few other patients who did intensive antibiotic treatment and responded to it.

Typically, my doctor feels that within three months of seeing a patient for the first time, he is able to find something that works to some degree, whether it be PT or meds or eliminating dairy from her diet. It is not an endless trial and failure of meds and other techniques, as I have had over the years. He did not feel, at this point, that there were other medical conditions to look into or rule out. Some doctors believe that any patient with a multi-system illness such as Fibromyalgia, Chronic Fatigue Syndrome, POTS, etc. deserve a shot at long-term antibiotics if they haven't responded to other methods of treatment.

After our conversation, my POTS doctor called the Lyme doctor and they agreed that treating me for Lyme was the next best step. So, while we cannot gaurantee for sure whether or not I have Lyme...we are taking a big leap of faith to treat me as if I do. I am trying very hard to let go and trust in this! Not knowing for sure is so hard!

I have two friends who I met through my support group who are walking me through the Lyme process step by step. I have been so blessed to have them holding my hand and cheering me on every step of the way. I am always amazed by the kindness of others who have travelled the path of illness and reach out to try to make the path of those who follow a bit easier.

Okay...the medical part is over!!! In other news...

I cannot believe that it is the end of January already! We have had such a mild winter--I like the sunny days, but I would like a little more snow! (shhhh....don\'t tell my mom I said that!)

Asher is still wild, but we met with a trainer who helped us with some techniques to see if we can better manage his anxiety. So far, he's been a bit better on the anxiety meter!

The holidays were a hard one for our family, as my 91 year old grandmother (my dad's mom) died in early January. I was very close to her and it was very hard not to be able to be there for the funeral and be with my relatives in Iowa. Grandma always amazed me with her kindness, love, gratitude and goodness. I loved her so much and have so many wonderful memories of my conversations and visits with her.

I had a LOT of visitors for the over the holiday. Unfortunately, I was feeling super-duper lousy...but everyone popped by for little visits anyways which was so kind since I wasn't great company! I saw high school friends Jeannine, Angela, Sarah and Ted (and his wife, Erin).

Ted and Erin brought me the fourth Harry Potter book on cd (which they listened to driving cross-country) and it is 23 cds! So, that should keep me busy for a while. I'm finishing up a mystery right now, Blacklist by Sarah Peretsky, which I am enjoying and getting ready to listen to Friends, Lovers and Chocolate by Alexandar McCall Smith. After that, I'm ready for some good book suggestions--ones you think would be good on tape! I'm thinking of tackling some of the ones my friend Marla-the-reader has recommended as well as some others folks have suggested. It's just so hard to choose!

Otherwise, I haven't felt well enough for much else--not too much email and no movies. I have been able to some knitting which I always enjoy. I've been a bit consumed by the medical stuff and dealing with the death of my grandmother. Mom's getting into the groove of her semester--only two more after this one until retirement! And, I am getting in the groove with a new caregiver, Fay. I really miss Erika, but Fay is great too. Each person is so different.

Well, I know this is a bit long...but I haven't caught up with many of you for quite a while. I owe so many of you a 'real' email my inbox looks like a train wreck...I'm sorry! I hope that your 2006 is off to a wonderful start!

Lots of love and blessings,
Emily

Photo: 'Lord Asher' hanging out in one of his favorite spots--on the ottoman (which he things is HIS). Also, he's looking quite handsome in his penguin bandana after a trip to the groomer.