Rain Delay...

Photo: Double rainbow taken on the eve of Yom Kippur. Rest of post follows below...

Rain Delay continued...

Yes, I'm a bit behind (again!) on my blog, but hope to be up and running again soon. I'm also having a bit of technical difficulties with the picture and text...so sorry for the two separate posts!

However, I just had to share this photo with you all. This rainbow appeared on the eve of Yom Kippur. It stretched the entire sky, a COMPLETE rainbow creating an arch across the sky. Look closely at the photo, and you will also see that it was a DOUBLE rainbow. These are not common occurrences in our area. I felt God's presence and hope it is a sign of a good year in the book of life...

I have discovered that the way I position my computer while sitting in my recliner is one of the biggest triggers for my neck pain. So, I've been spending time on the computer as little as possible, until we find a better set up.

Dad and Abbie are working hard to come up with a solution and with their thinking caps and a bit of creativity I think we are on our way to a solution, but are waiting on some things we ordered to arrive.

In the meantime, please bear with me!

On the Lyme front, I had to discontinue to Malarone for a week or so. When I increased to two tablets daily (from one), I started having too many side effects--nausea, loss of appetite, upset stomach and extreme lethargy. We gave my body a week's rest, and restarted the Malarone--even MORE slowly this time around. So, I'm working my way back up. When I am taking it I DO see a change in my symptoms--less neck pain, better sleep, less ANS agitation, but I also find that it does make me very, very exhausted and weak. But, the benefits, at this point, as long as we take things slowly, outweigh the cons of not pushing forward with treatment. If I do, in fact have Babeisosis, this could contribute to some of the fatigue, as the bacteria is dying off.

I have lots to update on when I am back in the swing of blogging...but for now, I'm leaving you with this photo.

Lyme Log: Peeking Out From My Turtle Shell

"I believe that no matter what the weave on this side of the cloth looks like, God's creating something beautiful on the other side."
--from "Coping with Chronic Illness: Overc0ming Powerlessness"

On August 2nd I had my most recent consult with my Lyme doctor.

So far, my Lyme doctor has been very cautious about deciding whether or not I truly do have Lyme. As you may remember, my original test results were 'suspicious but inconclusive.' During this phone consult, after discussing how I am feeling on the antibioitics (miserable!), how difficult it is for me to increase my dose, and other symptoms my Lyme doc said that he was feeling pretty confident that I DO have Lyme. While still daunting to hear, this in many ways, made me feel more confident about the treatment path we have chosen.

I will try to sum this up for both the medically-minded and non-medically minded...hopefully there will be information for both here! (I have several Lyme Buddies, as well as POTSPals currently pursuing the Lyme diagnosis, friends who are super-medically minded and those who are not (Dad? Are you reading? Just teasing you!)

WHAT we decided: The Next Step in Treatment (the short version)

1. Stay at the dose of minocycline that I am currently at: One 50 mg pill two times a week.

2. Start an empirical trial of the anti-maleria drug, Maleron, to treat a possible co-infection called Babesiosis.

WHY and more details:

Often, when we are bitten by a tick, it can carry other tick-borne illnesses, not just the bacteria for Lyme disease. These other illnesses are called co-infections. The antibiotic that I am currently taking, minocycline, is very effective in treating Lyme as well as all of the other co-infections EXCEPT one called Babesiosis.

Maleron, the anti-maleria drug, is used to treat Babesisosis. At this point, my testing does not show any evidence of babesia, but upon further discussion of my symptoms we decided that it would be worth trying Maleron.

It has taken me quite a while to reach the dose of 2x a week for the minocycline--and it still makes me sick and I am still 'herxing' most of the time (having increased symtpoms). So, we will stay at this dose while adding in the Maleron.

According to my Lyme doctor, Babesiosis can also make a person very, very sick. He has had many patients who weren't improving on the antibiotics much, and when he added in the Maleron, they began to see some steady improvement, without much herxing. So far, during his five years of using this drug, it has been well-tolerated by his patients (knock on wood, he always says!)

Babesiosis has many of the same non-specific symptoms that Lyme does, such as fatigue, muscle aches, etc, so it is difficult to distinguish between the two. We discussed how lousy I feel--how I feel sick ALL of the time, am homebound/bedridden/recliner bound, how it is so difficult to even describe how sick I feel. I often feel too sick to do anything but lie there and think about how sick I feel...too sick to rest, too sick to sleep, too sick to watch TV, too sick to do anything.

He just 'got it' and said, YES, what you are describing is what my patients describe, especially those who sometimes end up having the co-infection of Babesiosis. He said that it produces this 'incredible feeling that you can't describe'. He said that people realize how sick Lyme can make a person, but don't realize how awful Babesiosis can make a person feel. I also spoke to him about my level of cognitive difficulties--the inability to read at all and he said this is very common for Lyme patients.

So, after I have been at this dose of minocycline for a couple more weeks, I will add in the Maleron at a very teeny tiny dose (since I am so sensitive to meds!). I teased him about how I always defy the odds when it comes to meds b/c I always have some unexpected bizarre reaction--he patiently acknowledged that it's not my fault that I am sick and my body is so sensitive! Each time I speak with him I feel more and more confident in him and also feel that he really 'gets' how I feel and how my body works.

I will start with the pediatric dose of Maleron (which is 1/4 of an adult dose) and increase as I am able to a full adult dose. After a month we'll run labwork and touch base as to where to go from there...

Back to my turtle shell...

Blessings,

Emily

Photos: My beloved gladiolas! I had a 'good moment' and we managed to get this picture of me with the gladiolas that are almost as tall as I am! I, of course had to sit back down right away! This batch has come back on it's own for the past couple of years! Spectacular! We've enjoyed fresh cut gladiolas in the house for several weeks this summer.

The Gift of Family (and a Gift from them too!)

I am awed.
I am amazed.
I am overwhelmed.
I am humbled.
I am blessed.
By your generosity.
By your kindness.
By your compassion.
By your thoughtfulness.
By your love.

THANK YOU to my "Iowa family"!

I just recently received my 30th birthday album. It is absolutely beautiful and I will cherish it FOREVER! I must feel well enough to bring it to Iowa for you all to see the final product! (Or, more realistically, make sure I send it along with Dad and Abbie on their next trip to visit!).

You all worked so hard on your pages! How wonderful it is to have a page from EVERY family, including a page with Grandma, Joe and Tom! I thank you for all of the time, energy and effort you each found to put into your pages. I don't know how you found any 'extra' time with all of your own busy family lives! What an amazing team effort!

I love seeing how each of you designed your page--each family's own personal flair! Also, it has been over eight years since I have been to Iowa to see you all. Many of the cousins have married and had children since then. The cousins I DID see 'back then' have grown and changed so much. And, many of the spouses and babies I have never met. I LOVE pictures so much, and I love being able to see all of the faces of the family in one book--those of you I know and all of those who have joined the family since I was last out for a visit.

Also, I loved the black and white pictures of Dad and the rest of you growing up, pictures of grandma and especially, the fun pictures some of you found of me 'growing up in Iowa' with the cousins! Some of them are a riot! They are so much fun! Rob, did you know your Mom put a picture of you in there with your headgear on? Did she get your permission first? I know Jay is thrilled with one of the pictures Jeanette chose! But, I loved it!

Abbie and my step-sister, Meredith, assembled the album. Perfection! They did an amazing job putting all of the pages together, creating a beautiful album of our whole family. I am so grateful to them for taking on a task that was not orginally theirs, with such grace and kindness, to create such a wonderful final product. Abbie and Meredith--You went above and beyond the call of duty!

Thank you to my friend Jeannine for planting the seed that started what became this album.

I am sorry that you all went through so much stress waiting for me to receive this album. In some ways I see it as serendipitous that I got it after I committed to doing the family newsletter. I had NO idea this wonderful gift was in process from all of you! This way, when I committed to doing the newsletter, there was no sense of 'obligation', just an absolute desire to keep our family connected and honor Grandma. So, this actually made receiving the gift even sweeter. My only sadness is that Grandma did not know I had it in my hands before she died.

I am filled with gratitude. The album brings me such joy. I do not know how I can ever thank you all enough for executing this project and creating for me a gift that touched me so deeply. Grandma truly created a family of love.

With love, blessings and gratitude,

Emily

Happy Birthday Asher Noam: The BIG Five!

Happy Birthday to Asher! He's the big five today! Here are a few pictures from this past year of life of our wild child, vilde chai, Lord Asher, lovebug, cuddlebug, sack of potatoes, and most recently, superhero.

We celebrated with a Frosty Paws and a new stuffed toy...

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!