Oh Happy Day!

At the end of April, Ted, Erin and their 10-month old daughter, Aislinn, made their first trip to the east coast all the way from California. Aislinn did pretty well with her first big plane ride!



Yummy! These wicker coasters sure do taste good! :) Someone is definitely teething! Isn't she soooo cute?? It was so much fun to meet her in person--only the second friend who's child I've gotten to meet. What a blessing! I can't wait to see her again at Christmas time when they are home again!

I have known Ted since the 9th grade, so when he walked up to the door carrying this little girl on his hip, I had a brief moment of shock! But, once I saw him as a daddy to little Aislinn it was just amazing. He and Erin are absolutely wonderful parents with her--and Erin is a super trooper right now while Ted finishes up his dissertation. Watching Aislinn's bright eyes, happy face, and alert personality (and fascination with the ceiling fan) were testaments to how much and how well she is loved.

Finally, we managed to catch Aislinn without something in her mouth! Here's a pic of the the three of them. I can't say we got to catch up on much going on in our 'adult' lives but we certainly stayed entertained by Miss Aislinn. I learned that her current favorite daily activity is: Petting plants and trees!

Pure Happiness!!! Aislinn hung out on my lap with me in the recliner for a good 45 minutes. I have missed so much being around little children and she really made my day! She spent most of the time stuffing her face with Rice Puffs cereal which we set on my tummy in little bits at a time. Each time I open and close the recliner we're still finding rice puffs popping out!

And aren't we cute in our matching outfits? And we didn't even plan that!

As we said goodbye, Ted said to Aislinn 'Wave goodbye to Aunt Emily!' Oh, did that melt my heart. If I can't have my own children I want to be 'Auntie Em' to all of my friend's kids!

Ted, if you're reading: I'm thinking about you as you work on this last stretch of your dissertation. Sending you Super Computer-sized homework batteries!

Much love to the three of you and can't wait to see you again! Thanks for always making time for me on your short visits home. And, Erin, thank you for welcoming me into your life.

Long Time No See: Deb, Erika, Renee, Kate, Jess and Sarah

"Make new friends, but keep the old;
Some are Silver and the other Gold"
--Favorite song from my days at a Friend's School--

Finally, the pictures I promised from the visits! Here's me and Erika, me and Renee, and Deb. Sadly I did not take pics on the days that Kate, Jess, and Sarah visited! Next time I will (which means they'd better come back! haha. Y'all come back now, ya hear?).

Grief and Gratitude....

"There was a boy, and very strange and shattered boy. They say he wandered very far, very far, over land and sea. A little child, but very wise was he. And then, one day, one magic day he passed my way, and while we spoke of many things, fools and kings, this he said to me:

The greatest thing you ever learn is just to love and be loved in return."

-From the Song 'Nature Boy'-

Contrary to what may be becoming popular belief, I have not dropped off of the face of the earth (or at least not completely!).

I just wanted to get a long overdue blog written with a bit of an update to let you all know that I am thinking of you, missing you, receiving your emails, and wishing so much I had energy to be in touch more. Your emails and calls are NOT going into a black hole...they are appreciated so much. I feel such gratitude for your emails, yet such grief that I cannot respond to so many of them. I literally lie in bed when I do not feel well and write emails in my head to y'all!

I was so overwhelmed by the response from so many folks to my holiday letter, including many with whom I had lost touch. I have YET to get back to some of you who responded--John, Heather K., Britt, Caroline, Mackenzie, Tess, Julie, Sean, Renu...and I'm sure I'm missing someone! I am so sorry! (Erika, you would NOT be happy to know that I have not kept my inbox under 'control')

I really can't believe that it is the middle of April already (although you wouldn't know if from the weather we are having). I'm still wearing flannel PJs!

Here's the scoop on what's going on:

For me, I've been quite 'busy' given my 'awake' time each day and the need for long recovery periods after any 'outing' to the doctor or having a visitor.

1. VISITORS, VISITORS, VISITORS! 2007 seems to be filled with the blessing of lots of visitors--some of whom I have not seen for many years. My friend, Sarah, said, "Is something in the water this year?!" I continue to be incredibly grateful for the faithful friends and family in my life, and also incredibly thankful to those with whom I've gotten to re-connect. I feel overwhelmed by the abundance. I am also so thankful that folks are willing to take the extra time and energy to travel the distance to come to visit, or take time out of their quick visits home to see family to stop over for an afternoon visit during my 'awake' time.

So far this year I have seen high school friend, Sarah and her family. I got to spend time with her husband, Bob, and meet her stepson, Kyle. Because I had missed their wedding in December they had planned to come dressed in all of their wedding attire! The weather turned out to be crummy and snowy, so they decided against the idea--bringing instead their wedding album and a votive candle from the reception so that I could dine in style during lunch with them. I was incredibly touched by their thoughtfulness and generosity. The votive holders they used at their wedding reception were designed with a butterfly on them in honor of my inability to be there and my love of butterflies. Sarah has been such a faithful and loving friend through all of this. I really enjoyed spending time with all three of them and meeting Kyle.

Three other high school classmates stopped over for visits while in town to see their parents: Kate, Jess and Deb. I had not seen any of them since 1998 (other than a brief visit with Kate at our reunion in 2004)!!! Seeing all three of them was so amazing--at once like putting on a comfy old sweatshirt and connecting as if we had seen each other yesterday. And, to see us all as 'grown-ups' now compared to seeing them last when we were still in college was fantastic--but also made me feel a bit old!

I felt a bit as if the last time we were all together (probably at some get-together when we were home over a holiday) we were in so many ways still girls and to re-unite as women was really quite remarkable. We lost touch mostly just because of lost email addresses, moves, marriages and babies, my illness keeping me from being able to keep in touch as much as I like with folks, etc.

I've known Jess since fourth grade and Kate and Deb since seventh grade when we all became part of a 'group of eight girls' who were friends all through high school. We spent so much time together, essentially growing up together...so it was easy to quickly feel right at home together and for them to feel right back at home in my house where Jess used to freely open the pantry cabinet and search for what was available to snack on!

I got to see Kate four months pregnant with her second child (and am hoping she'll be back to town to show off her larger pregnant belly!), catch up with Jess for the first time in 9 years, as well as meet her little daughter Zoey (who her mom brought over for a quick visit). For the most part I've not met any of my friend's children, some of their spouses, or even been to their weddings...so getting to see Kate pregnant and meet Jess's little one was great fun. (I was quickly reminded how little energy I have as I watched Zoey exhaust me in 20 minutes flat with her talking and running non-stop). I had a bit of a freak out moment hearing Jess be called 'mommy' by this adorable little girl who loves Elmo, Elmo and Elmo! I didn't get to meet Kate's little one, Alex, as he was napping and we opted for 'girl time' together instead. Hopefully next time I will get to meet him!

This past Friday, I saw another dear high school friend, Deb. I was so excited to see her I somehow managed a 2 1/2 hour visit. I've now spent the rest of the weekend in my tortoise shell. I must have used up every ounce of adrenaline. Seeing Deb was a most joyful visit and I'm already on her case about when she will get another break from her fast-paced job as a PT (Congratulations Deb on now having a Doctorate in Physical Therapy! :)) to come home for another visit, as after nine years we have a LOT of catching up to do! I still remember the day I met her in music class in seventh grade, after which we became fast and close friends. After completley losing touch for several years, seeing her again and being with her brought me to tears. She showed up carrying a pink gift bag with a gorgeous purple journal inside, which is the same exact color as my bedroom! I teased her about the pink and purple and she said, 'Well, I always remembered you were pretty girly!' Some things never change! Deb, are you noting the colors of my blog--pink and purple are still my favorites!

Seeing these women--whom I had not kept up with very well--happy and healthy brings great joy to me. For me, because we grew up together and spent so many lunch hours, band trips, threatre rehearsals, math studying, not to mention HOURS and HOURS gabbing on the phone, they'll always be a part of my heart and I care deeply that they are doing well.

Former caregivers, Erika and Renee, both made it to State College for visits also. Erika squeezed in a visit over her spring break from grad school for an overnight, and Renee stopped by while in town for a cattle show (my farm girl Renee!). Asher was so happy to see Erika he chose to sleep in HER room and not with me! It's amazing how these women came into my life as caregivers and became friends. I'm sad that Erika has moved so far away for grad school, meaning our visits will be few and far between...

I did not get Thank yous out to all of you...so this blog is my thanks to you for bringing me such joy! And the gift of great conversation!

Next week, another high school friend, Ted, his wife, Erin and their daughter, Aislinn, will be in town. I can't wait to see them and to meet little Aislinn for the first time.

After their visit, I will be seeing three Davidson friends! First Marla, over Mother's day weekend, in all her pregnant glory. She said she'd better get here before baby number two arrived or Lord only knew when she'd be able to get away again. She'll be sojourning from Tennessee and this will be our first time seeing each other since Davidson graduation 9 years ago. In mid-June, Loralea, former 'roomie' and close friend, will be flying up from South Carolina, also six months prego to celebrate her graduation from her masters program as well as one more girls only weekend before she becomes a mommy. Then, in June, I am also looking forward to my annual visit with Carrie and possibly her husband, Sam, too.

These visits sustain me, as do your emails and calls. The only bummer is that each visit results in a serious 'crash' afterwards. I find this incredibly frustrating. I do not believe there should be such a consequence for JOY!

Everyone is amazingly accommodating to my limited and inflexible schedule. I'm really only 'awake' from about 1-3, so this is when I try to squeeze in anything and everything that needs to get done.

After visitors leave, it's a double-edged sword. I feel gratitude that I was able to see them. I feel grief that I don't feel 'well' during their visits. I also grieve that the visits must be so time-limited and that by evening I will be curled up in a ball sick as a dog. Luckily, all the visits have been spaced out fairly well and I was able to see each person. I almost had to cancel on Kate I had been herxing so badly, but thankfully, got enough of a 'window' to see her. I'll do pretty much anything to see someone, even if it means paying a very high price later. The hardest part for me is knowing that for me a visit with a friend IS my day, whereas for her it is just a small part of her day, her weekend home. For me, it is my whole weekend. I feel grief that I can't be out in the world the way I want to be. I feel such gratitude to see my friends thriving, yet I admit to a tad bit of selfishness when I say that I grieve that I cannot be out living my life also.

Aaaahhhh, but enough philosophizing for one blog entry, eh?

2. 'DOCTORING'. Also on the schedule is lots of 'doctoring', going to 'ologists', etc. etc. Fun, fun! On these exciting journeys outside of my house I get to notice the buildings popping up that I didn't know were even there before! That is certainly a sign that I am not leaving the house often enough AND that our town is growing much too quickly into disgusting urban sprawl--ugh!

I have two appts. down and three to go (all this week), plus regular treatments for something every two weeks. This is more than I have left the house in months! Nothing major has been going on out of the 'ordinary' for me, but a few things have cropped up and so far all docs have been going to bat for me on stuff. They find me 'unique and puzzling,' but nonetheless, are sticking by me. I do think something MUST be in the water this year for the latter to be the case!

3. HOW AM I FEELING? Many of you have been asking for an update from me as to how I am feeling and how I am doing. Have any of you noticed how much I avoid answering this question???!!! It's such a hard one to answer.

At the end of this month I will have reached ONE year of continuous Lyme treatment on antibiotics, without needing to stop. I have also added in two other drugs to treat the Lyme, Malarone and most recently, Plaquenil. This time around I have been able to pace myself so that, while the herxes (periods when the Lyme toxins/die-off are at their worst) are HORRENDOUS, I can sense when I need to slow down or back off so that I do not end up in the ER. Thanks be to God. The best and closest comparison I can find is that the Lyme treatment is much like chemo in the sense that you feel like you are going to die while all the Lyme is dying off. I spend the time just trying to survive.

Last month I experienced my first real 'window' of light out of a herx reaction. It came just when I thought I couldn't endure this treatment anymore. I also reached my 100th dose of minocycline! I started last April at one dose per week and am now up to four doses per week. During this 'window' I was able to notice a bit more energy, less pain, and more cognitive clarity. It's definitely at a tortoise pace, but I do think we are finally moving forward. Patience, patience, patience.

The reason I don't often say how I am really doing? Because I still feel horrible all of the time! And I am tired of sounding like a broken record. I'm grateful to be more stable and to be able to have these visitors--yet I get so sad that having them come makes me sick afterwards. I long for a day when I feel 'human' and when each outing, even if to the doctor, is not so grueling. I still feel 'sick' every moment of every day. Thank goodness for that iPod to listen to for hours on end curled up in bed recuperating!

I don't have any trouble keeping 'busy' as I only have about one hour in the day to do things that need to get done, including email and such, so as you can imagine things pile up pretty quickly. Most of my energy goes to activities of daily living--by the time I eat, dress, bathe, etc. there is little time left for much else. I use the time after lunch to try to get what I can done--but it must be done in a reclining position! By evening, after dinner and my bath, I rest a long while and then am sometimes able to either watch a TV show or listen to a book on tape for a bit. I need a lot of recuperating time and sleeping time.

4. MELISSA. The joys have been plentiful this year, but so have the sorrows. Since finding DINET, my support forum, in 2004 I have met so many new friends--and even though we have never met in person, the lessons they have taught me about compassion, love and generosity, are amazing. They are truly friends--such an unexpected thing from what can be an impersonal internet world.

Melissa, my dearest friend that I have met through DINET, has been struggling and fighting for her life for the past few months, most of which have been spent in the hospital with recurrent sepsis infections that they are unable to figure out how to prevent from returning repeatedly. For the past couple of years she's been my 'person' (Grey's Anatomy anyone?) to check in with on an almost daily basis via gmail chat, phone messages, or on 'lucky days' when we are both awake at the same time, a phone call. We met because we both struggle with Autonomic Nervous System issues, but soon found out we had just about everything else in common too--we're two peas in a pod! I've come to love her so much as a friend, even though we've never met. If anyone has Harry Potter magic figured out, please get me there via instantaneous travel NOW! And, please, please hold her in your thoughts and prayers. Through the whole experience, we've continued to grow closer and I have also continued to be amazed by the folks who support us on DINET. I've met such amazing people on this site. Since becoming sick, I've not been able to go out and meet new friends...so Melissa and I quickly became the new friend each other so needed...and we could 'get' each other on the 'sick stuff'. Melissa is a woman of incredible faith, hope, love, courage, and grace and watching her suffer like this has been one of the most difficult experiences of my life.

A note of THANKS to all of you on DINET who email me regularly and watch out for me. Your emails mean so much to me...and I wish, as you know, that I could respond to every single one of them.

5. MOM is officially counting down to the end of her days as professor. By mother's day weekend she will be free of grading papers, preparing syllabi and lectures, schlepping the one hour commute, and all that jazz! She's ready to tackle 'fun reading', catch up on movies, and putter in the yard!

6. DAD is going to bop me over the head for putting this in here, BUT, I'm so proud of him! He had a big year this year award-wise for his latest book and now a university award as a Faculty Scholar for his lifetime contributions to his field. Go Dad!

He even had an appearance on Anderson Cooper 360! Years ago he was asked to be on Oprah and he turned it down! Now, why did he turn it down you ask? Because he said, "Who's Oprah?"!!! Who's Oprah??? Ohmygoodness Dad. So, when he found out he was going to be on Anderson Cooper he called and said, 'This is better than Oprah. Turn on Anderson Cooper.' Well, it was pretty darned cool (except that his story didn't air until the VERY end of the program) but it wasn't Oprah (sorry Dad!). He did quite well, but in his opinion he looked 'fat and like he had no eyes'. I don't think that's what people were paying attention to though--they wanted his wealth of knowledge, right? :)

7. ASHER. Anyone interested in adopting a neurotic dog?

Wrapping up:

As always, I keep saying that I am going to keep up with my blog. I keep getting derailed. I feel that I promise I will do this and that and my body just keeps not cooperating. However, I do feel this is a promise I must make a better effort to keep--not only to you--but to myself because I do really enjoy it when I am able to write and post pictures. Plus it would be a LOT easier to read if it wasn't so darned long each time around!

So, hopefully after all the 'doctoring' is over and before the next set of visitors, I will get to post a few pictures!!!

Right now, I'm needing to spend a lot of time in between 'activities' recuperating in my tortoise shell...

Thank you for understanding that I still need lots of time in hibernation mode! And, as Melissa would say, if you've made it to the end of these ramblings...CONGRATULATIONS!

Love,
Emily

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.