The Year in Pictures

Pictures from left to right:

Row 1:

Xmas with Dad and Abbie; Fall in our yard; Thanksgiving Visit with Angela; More Fall!

Row 2:

Mom's last 'first day' of an academic year; Asher Dasher; Me with 'Maid of Honor' bouquet for Carrie's wedding; Picture of bouquet Carrie sent me even though I couldn't be there to stand up for her (Britt did a fantastic job!); Rebekah--caregiver and massage therapist--helping out with gift wrapping!

Row 3:

Sarah and new husband (as of today!), Bob, visiting in July; Me, Erika--friend and former caregiver, and Asher during a summer visit; Maxine (Part of my healing team for over 7 years now--massage therapist, spiritual advisor, and giver of my beloved prayer shawl); Carrie and husband, Sam, during their May visit here; Fay, former caregiver, helping with computer 'stuff'

Row 4:

My view of spring (from a reclining position) as the tree begins to bud; Forsythia in full bloom; Winter bunny; Repeats from Row 1

Row 5:

All repeats, except picture of me and Dad for my 31st Bday

Lyme Log: The Tortoise Turns 31 and Takes a Few Steps Forward!

As always, I'm not keeping up as well as promised with my blog...but here goes! A LOT seems to have happened since my last update. Aaahhh, where to start?

First, you all may remember where I was at last year at this time...on the verge of turning 30 and praying that this would be my decade for healing. Well, turning 31 was MUCH easier than turning 30! Although, I'll admit I'm still not used to being 30 something. I do feel that we have started to see progress and this just might be a decade of healing. It was a much happier birthday this year.

Because of my low energy, we spread it out over a few days! So, I go really spoiled! I felt like I turned 30 all over again, I received so much love and blessings from all of you. THANK YOU!


I recently had a long email exchange with my ANS specialist as well as a phone consult with my Lyme doctor. This upcoming week, I have a phone consult scheduled with my ANS doc.

Medication-wise--I'm working to increase the Minocycline from 2x per week to one 50mg pill every third day. I am 'holding at one pill per day' of the Malarone, while I work to increase the Minocycline. I'm still at baby doses of both, but am about to reach pill number 50 of the Mino! Yippee! And, the good news is, I'm starting to see some teeny tiny steps forward (with a few steps backwards always thrown in, of course).


Last time I wrote, I discussed how much I was struggling, so this time I wanted to share some GOOD news and some changes that I have begun to see since my last post. Finally, in about mid-August, once I reached a maintenance dose on the Minocycline of 2 doses per week and stayed there for a while, I started to see (since I finally wasn't herxing all of the time!) these little changes in my body.

I recently wrote of them to my ANS doc, and he was so excited! And thrilled with the approach that my Lyme doctor is taking with me--slow and steady. It is an incredible blessing to have these two top docs on the same page with one another.

So, here are some of the changes I am beginning to see:

CHANGES IN MY PHYSICAL BODY:

--My neck pain is gradually improving. It is less severe, aggravated a bit less easily, and easier to calm down when it does flare. It is still a constant problem and triggered easily by movement and especially by using the computer. I am more often now able to settle the flares with heat or ice, whereas before, nothing helped. A big change is also that I am beginning to feel more 'give' in my neck, so that lying on my side is becoming easier and less aggravating to my ANS! This is a big change!

--I am now able to tolerate massage! Another 'yeah'! Previously, it seemed no matter what type of body work or how gentle it was, Maxine and I could find nothing to do that did not end up making me feel worse aftewards. As I have gotten farther into the Lyme treatment, I have been able to tolerate increasing amounts of massage. I used to always just feel more neck pain, more sluggish, more foggy, more agitation, etc. Now, the massages often make me feel better, and I think that they help me to clear out the 'die-off' of the Lyme spirochetes. Since I am not able to excercise and get the blood flowing to the areas where the Lyme likes to hide out, the massage really seems to help 'clear things out'. We have noticed that all the connective tissue sites around the joints are sore and feel 'thick', and Lyme 'loves deep connective tissue', as my Lyme doc would say. We hired a new caregiver, who also happens to be a CMT (how lucky am I?), so I am able to get 2 hours of massage a week. Maxine does the upper body b/c she is most experienced with my neck issues. We have found that my neck is still 'off limits' to touch or massage, but we have been able to massage my spine and back and areas we never could before, and as time passes, I tolerate more and more. Rebekah, our caregiver, comes a different day of the week in the evenings (while my mom is teaching) and is able to massage the lower half of my body--this works so well b/c I can take a bath and have my hose off for the massage, which I have never been able to do before. It has been so amazing to really be able to tolerate, enjoy and feel healing benefits from the massage for the first time.

--I now crack my back much, much less (a big relief to all of those who have HEARD the actual cracking!). I do not know if this is a product of being able to massage around the spine or part of the Lyme process, as I know many others with Lyme are 'crackers'. My neck still cracks just as much, but we haven't been able to work there yet.

--I have started to see significant changes in sleep. I am sleeping better. It's not great, but I rarely have the nights of extreme insomnia that I used to have. I have even had some times of sleeping really well and being able to nap well also. This means that I am no longer quite as up on the news, as I no longer spend the entire night awake listening to BBC World News and NPR's morning edition! At this point, I'll take the long desired sleep! I still need a lot of medication to fall and stay asleep--both the Klonopin and Ambien.

--Overall, I think my ANS is beginning to calm down some. When I have a 'storm' or 'spell' it is not as severe and I am usually able to calm it down more quickly. I also have noticed that my forceful heartbeats, while still there, are much less powerful. I still have to work very hard to manage my schedule and how much stimulation I am exposed to (computer, phone, TV, visitors, etc), but it is definitely beginning to improve some. Symptoms are still easily triggered by both good and bad stress. I can also wait out a spell more easily or sometimes shorten it with a bit more Klonopin, whereas in the past, NOTHING would help. I would often spend much of the day unable to tolerate anything, and was only able to lie around and just feel miserable. Now, I am starting to be able to spend more time listening to music, listening to books on tape, and now I can even watch some TV (which, I'll admit is exciting! I got to watch lots of the U.S. Open Tennis and actually enjoy it. HUGE change!). I have been hoping that the farther along we get with the Lyme treatment the more improvements I will see in this department, as the over-active ANS still remains my biggest challenge. The consequences of 'overdoing' are still large and frustrating.

--I am not sure how to describe this improvement. The closest term I can use is that I am less 'hypoglycemic' than I used to be. I used to absolutely HAVE to eat every 2-3 hours and would feel very sick--nauseaus, shaky, dizzy, tachy, etc-- if I did not. Now, I have noticed, that while I still have to be very careful, I have more 'give time' in terms of how quickly I will get symptomatic, and don't get nearly as symptomatic. I do not know why this has changed.

--Overall I seem to be a bit more stable (although it is quite easy to upset the apple cart) and have a bit more stamina when things are stable ( i.e. One week I had three doctor's appts., three days in a row. I did it, and while I was tired, I did not have a major 'storm') I could not have done that even a couple of months ago. I still have many days of feeling like an absolute 'wet dishrag'.

WHAT DO THIS CHANGES REALLY MEAN IN TERMS OF MY FUNCTIONING AND QUALITY OF LIFE?

At this point these changes have not resulted in a higher level of functioning in terms of being able to do more or be upright more or leave the house, but they have translated into an improvement in the QUALITY of the time that I am awake. I do not like to use the word suffer, but I did start to feel like I spent most of my time unable to do anything but feel lousy. Now, I am at least usually able to listen to some music, listen to a book on tape, or watch a little tv. I hope these changes are the building blocks to more changes.

I do not feel as sick as I did, but I still feel lousy all of the time. I have a long ways to go before these changes translate into really feeling 'human' I think.

WHAT CONTINUE TO BE MY BIGGEST CHALLENGES, PHYSICALLY...

One thing that is still incredibly frustrating is that I have had no improvement in the cognitive department--computer time, focus, reading, knitting are still virtually non-existent. I squeeze what I can in on 'good days'. It's hard to know though if the herxing is also causing some of these problems on top of what I already experience. I still never wake up or have moments when I feel 'clear-headed' or 'fresh', I always feel foggy and unfocused.

I still am incredibly pale every day.

The overstimulation of my ANS remains, as always, my biggest problem and the biggest barrier for me in terms of sleep, activities, etc. The consequences of 'overdoing' are frustrating. For example, a visit with a friend, while an absolute JOY for me, often results in hours of waiting for my sysem to calm back down--forceful heartbeats, hear 'flip flops', sweats, pallor, etc.

I also have a symptom that is quite bothersome, causing me to feel a sort of 'air hunger' when I talk, especially when I am on the phone. Of course, I could try talking less, but that's pretty impossible coming from me! :)

As always, I struggle the most with the fatigue, exhaustion and basically a whole body that requires a great deal of careful monitoring and rarely cooperates!

WHAT ARE THE DOCTORS SAYING ABOUT THIS?

Both of my specialists are encouraged and excited about the changes. We haven't had movement in the 'forward direction' for a LONG time. So, however small the changes, we will take them!

In my last discussion with my Lyme doctor, he felt good about our pace and my progress. As always, he reminded me that I have been sick for a very long time, and healing will also take time. I am very prepared for this. He told me it would be one to two years before I really started feeling better, but honestly, I am prepared for longer than that. He reminded me that we have many more options and medications to try--which is so different than where we were at before the Lyme treatment--we were out of options which was very difficult.

In his email to me, my ANS doc was also incredibly encouraged by the changes. He felt that any attempt to be more aggressive in the approach to my treatment would result in a setback, rather than my turtle steps forward.

In response to my struggles with my ANS, etc. he feels that as the Lyme treatment progresses, these issues will continue to improve and settle down. So, we are not making any changes in my medication for the ANS issues. As always, he reminded me that 'patience is the key'.

I will update more on his side of things after our conversation next week, when I hope to get a better feel for things, and answers to some of the questions both I am looking for and many of you have asked me.

HOW I'M FEELING ABOUT ALL OF THIS EMOTIONALLY AND SPIRITUALLY...

I am really hoping this is the right path! I feel much more at peace than I have in the 8 1/2 years that I have been sick. The challenge, is, as always, to stay patient, and let things unfold at their own pace. I asked for a beaded bracelet for my birthday to wear with my Medic Alert tag that says 'Patience!' so I have another daily reminder.

I remember writing my ANS doc around this time last year, as I approached my 30th birthday and how bad of a place I was in spiritually, emotionally and physically. I feel like I am in a much better place in all respects now! After the gallbladder surgery, I really felt that most of the time I was just feeling so incredibly sick all the time, I was really struggling and felt that I was really suffering. (Yesterday, at my check up with my primary care doc he rated me as a 5 out of 100 on a wellness scale post-surgery!) I was also so obsessed with trying to figure out what I was missing or doing wrong. Now, I am much more able to accept this path and be at peace with it. One thing that has helped a LOT (which may seem backwards) is having both of my specialists recognize how sick I really am and not minimize it. This has helped me to let go and know that I have two great docs really paying attention to the reality of the situation and helping me as best they can. It's actually made me feel more hopeful, rather than less! This has helped me to have more peace, contentment and patience with where I am. I'll admit that it is hard sometimes how slowly things are moving, but I feel in such a good place to deal with it right now.

As always, I am kept strong and sustained by my support network of friends, family and DINET folks.

Photo: The birthday girl with my dad. PINK birthday crown courtesy of my favorite Sunfish, Melissa. Dad and Abbie came over for dinner and brought me fresh Sushi! Yum. Earlier in the week, Mom made a meal of all fresh local foods including lamb chops. Also, of course, we had a yummy gluten-free, dairy-free cake which I ate off of all week long! It was a beautiful birthday. I got to talk to many of you on the phone and also enjoyed all of the wonderful cards and gifts you mailed! You bless me so much.

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!

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.