Asher Goes to School! (For work AND play!)

Asher's latest favorite activity (until the school year ended on June 12th) was being a 'school visitor' (he's even wearing the authentic sticker!). Many days, our neighbor, Anne, would stop over to pick up Asher and take him to the nearby elementary school where she walked each day to pick up her daughter, Alexandra. It's as if he learned that Anne 'might' be coming to get him around 2:30 each day and would begin anticipating the possibility of her impending arrival. I really think he was disappointed on the days he didn't get to go to school! He loves the kids and the mile walk (total to and from) always left him exhausted! All that socializing wears one out, eh?

Our neighbors, Anne, her husband, Scott, and their children Alexandra and Hunter have recently become closer and closer to us. Anne knows my 'awake' times, she senses when I don't feel well and need a rest, she helps us with Asher, she has the greatest dry sense of humor, and she even walks in the door without knocking! Now that's what I call a true neighbor. It's wonderful! Alexandra gives me lots of love and will get a post of her own with cute pics! This family is a true blessing in our lives.

Oh, but this blog entry is about Asher, right? So, on with it. Here's a picture of him with Anne on his way back from school. I'm sure he'll be as excited as Alexandra is when school is back in session this fall!



Now onto the REAL school that Asher attends.

As many of you know, Asher has extreme anxiety surrounding my illness. His incessant barking, and sometimes almost aggressive behavior towards caregivers or those who try to enter my room, became increasingly worse after the trauma of my Gallbladder surgery in January 2005. Asher saw the ambulances, the IV poles, heard the cries for help over the intercom in the middle of the night and he became, on a new level, my protector. But, instead of knowing how to protect in a helpful way, it manifested as uncontrollable anxiety.

Despite trying various trainers, training techniques (from a citronella bark collar to reward-based training to Tabasco sauce to coins in a can and even several medications, including Prozac (!!)), we had gotten to a point of wondering whether or not we would be able to keep Asher. We have had him for over five years now, so making this decision is heartbreaking.

We have been given many different opinions on what to do. Currently, we are using a trainer who came highly recommended to us. People said to us, "Don't give up on him until you see John." So, that is what we did, and that is what we are doing.

John uses the 'old-fashioned' method of training--meaning the 'ol choke chain and no treats method. At first, when I saw him choke Asher to get him out of a state of panic I thought I was going to throw-up and burst into tears all at the same time. We have been told over and over, however, that what we are doing is NOT cruel. It's hard and difficult work, and Mom has to do most of it.

But, if we can keep him, it will be worth it. Every penny of it.

When my mom first met with John and talked about Asher, John assured her that he COULD stay with us. We will have to work hard and be diligent. He can learn to change his 'job description' and be a protector in a more healthy and less stressful way.

He's improving every day. And backsliding some days too. (Which is sounding vaguely familiar to my friend, Marla's, accounts of potty-training her three-year old!)

The other day when my friend Angela was here to visit she got up and saw Asher calmly resting outside with mom. He did not bark or jump up on her. Ang is NOT a dog person, yet she burst out, 'He's so cute!' I said, 'Did you just say that?' And she said, 'Well, he's usually jumping up and down and so wild that I can't even see what he really looks like. But he's really cute!' So, I guess we're getting there bit by bit.

John said that a price cannot be put on the bond that Asher and I have. He is right. And I pray that we will be able to keep this dog, whom Anne has nicknamed 'Goofy Doofy'.

Blessings,

Emily

Photos: Asher wearing his 'School visitor' sticker and waiting for Anne to arrive. She didn't come that day though! Anne returning from school with Asher.

Reflections On and a Moving Response To My "Anniversary Post"

"There are a thousand thousand reasons to live this life, every one of them sufficient."

--from the book Gilead (am I really quoting this book again? I guess it was worth listening to?)--

After I posted my latest blog entry I was a bit scared. Had I said too much? Had I been too honest? Should I have sugar-coated more? Should I continue to sugar-coat in the future? My parents pain was so evident that they could not even acknowledge my blog entry. Creating pain for others is NOT my goal. But, being honest about chronic illness IS my goal. So, I may be more honest now...because 'filtering' what I say may not be helping any of us in the end. I tend to be a 'sugar-coater'--because I want to 'protect' others as well as myself. A couple of years ago, I admitted that I had been sugar-coating my emails to my specialist as to how I was doing--and he immediately responded that sugar-coating was going to get neither of us anywhere.

I was relieved to receive quite a few responses, many overwhelming me with love. And that all my friends and family hadn't gone running. One sentence is all it takes to let me know you're reading and loving me through this. It's a lot to take--it's too much to take for me most days. So, I do what my friend, Steph, says to do--spread it out! Tell some friends some things and others other things! I received messages that reminded me to dare not write back, messages that made me laugh, and messages that offered me Iowa hugs--oh how I long to be embraced by my Iowa family.

Most moving was an entry from a woman who I was friends with in high school. She and I reconnected at our ten-year high school reunion, after which the you-know-what hit the fan for me health-wise and we lost touch again. I couldn't believe that this friend who I feel incredibly connected to, but really have seen very little of, was moved to write an entry on her blog about my experience. It moved me to tears. And it captures what I think so many people feel when they are faced with a friend or loved one who is sick or dying. I remember Tess asking me at our reunion, 'Will you be okay,' and her eyes longed for me to say, 'yes'. All I could say was 'I don't know.' She moved me then, two and a half years ago, and she overwhelmed me this day. Her honesty and openness may strike a chord with many of you--either those on the side of illness or those watching a loved one who is sick.

It is my hope that by sharing my experiences, someone will suffer less because they found an answer sooner or had support sooner than I did. I hope too that my journey not only helps others who are chronically ill, but those who are not and those who are caregivers. Someday, I believe, there will be answers for Dysautonomia and Lyme, and others will benefit from those of us who came before them. Yes, there are a thousand reasons to live this life--and sometimes they are different than we ever imagined. But remembering that each life matters is, well, what matters.

Thank you to those of you who read my entries. I know they are difficult sometimes. My heart was broken when I realized that my story moves Tess to tears.

Here is the entry posted on her blog the day she received my email about my anniversary and read my post. Her blog is www.archwords.blogspot.com and I have put it in my 'links' section. Tess is an exquisite writer--and has been since our days in high school (Tess, you took up all the space in Aclivity! hahaha). I only wish I could write like her! Watch for her to publish a novel one of these days. And read her blog for its honest look at life in the Midwest, writing, and parenting.


From Archwords, a blog by Tess...

Tuesday, June 19, 2007

"Thank You for Your Great Effort"

This morning, I received an email update from a high school friend. In all honesty, sometimes it is hard to read her emails and her blog. A month after she graduated from college, Emily became mysteriously ill, and she has battled a serious illness for the past 9 years.

Today I read her blog post about her 9-year anniversary of becoming sick. I link to it here because it’s beautifully written. It’s also very sad. I’m absorbed in my daily life of family and work, and her blog posts about illness and pain seem to come from a different world. It’s hard to believe that our lives have diverged so sharply since high school.

Her posts make me cry. Reading them, I feel mixed emotions: guilt that I have things that she longs for (a child, a husband, work, the ability to move without pain); renewed gratitude for the blessings of my life that are, all too often, invisible to me; sadness that someone I would have described in high school as sunny or bubbly is now suffering so deeply; joy at her connection to beloved friends and family; a sense awe at her faith; and humble gratitude that she has shared her journey with the people who care about her.

It’s not easy reading about Emily’s physical pain and her spiritual struggles. Part of me wants to follow a Spirituality-Lite kind of thinking: What a great reminder for me to count my blessings! But it strikes me as horrid to turn another human being into a simple story that reflects only on me, something to ponder before I drink my coffee and then forget about as I move on with my day. Another part of me wants to respond shallowly: Thanks for the update! Hang in there! But instead of those distancing responses, I’ve been trying this morning to articulate something deeper.

In Writing Down the Bones, Natalie Goldberg tells the story of Shunryu Suzuki, founder of the San Francisco Zen Center. Suzuki was lying on his deathbed when an old friend visited. Suzuki said simply to his friend, “I don’t want to die.” His friend bowed his head and replied, “Thank you for your great effort.”

Now this story illustrates part of what drives me crazy about Zen Buddhism. I want the dying man’s friend to take his hand and say, “It will be okay” or “You’ll be at peace soon.” I mean, the man is dying—why not try to make him more comfortable or distract him? When I first read the story, I felt scared, and I wanted to push that feeling away. I skipped ahead to the next chapter.
But I found myself thinking of this story after I read Emily’s posts about her illness. In the story, the dying man says how he feels, and his friend is present with him. The friend accepts the dying man’s words, without trying to minimize them or push them away. In the face of death, that reaction seems inadequate. But sometimes, telling and accepting the truth is all you have. I can’t fix a friend’s constant pain, and that makes me feel crazy. I want to help. I can’t help.

In her blog, Emily describes facing, under extreme conditions, the task we all have: making the most of what we’re given as we face an uncertain life. She is saying both I don’t want to live this way and I am living this way. The scared part of me—the part that flatly refuses to consider that severe illness could happen to me or anyone in my family, the part that denies how hard this must be for her—wants to either push her story away or turn it into a simple, easily-contained lesson. Instead, I thank her for her great effort in telling the truth.






Photos: Flowers from my friend Angela in honor of my mom's retirement and also 'just because I was feeling down'. She visited on Saturday, before my anniversary. Fresh flowers are one of my greatest joys--and she completely surprised us! :) BTW, Ang--the flowers pictured are the ones you were afraid wouldn't bloom--they did and they are fabulous!

Marking my Nine Year Anniversary...

"Into Your arms I entrust my spirit and my healing while I sleep and while I wake. And with my spirit and my body also, as long as You are with me, I will not fear."

I have recited this prayer almost daily for the past several years after discovering it (and modifying it a bit) in a book called "Jewish Paths towards Healing and Wholeness". Many days I pray it over and over again as a form of meditation.

Today, I mark my nine year anniversary of getting sick.

I mark it this year, as I do every year with mixed emotions, and my coined phrase of 'grief and gratitude'.

When I first got sick nine years ago at age 22--one month and one day after graduating from Davidson--I never anticipated that I would still be sick nine years later. My thirties certainly felt VERY far away! I felt that I had so much time--so much time to get better and still get on with my life, marriage, family, career, schooling.

Now, I find myself continuously redefining my dreams, redefining what getting better means, and redefining what a life will be for me. Suddenly at 31 I don't feel like I have all of the time in the world to get better without losing so much more time. I'm having trouble not being 'in a hurry', not losing patience, and holding onto hope when it's needed the most. At the end of the day, I try to remember Steven Spielberg's favorite ending: HOPE, but some days this is more difficult than others to achieve. For the first time, I've found myself really struggling to say 'this IS a life, it's just a different path...'

Since turning 30 and watching a couple more anniversaries go by, I have struggled as I watch my friends settle into careers, marriages, new homes, and having babies. While I joyfully embrace my friends' joys and accomplishments (I wouldn't wish anything but happiness for them), I admit to a bit of sadness and coveting on my end of things. This has been my greatest challenge of late: to be happy for them, to grieve my losses, and to find value in my own life.

When I read the book Gilead (which I could hardly get through...Blach!), the writer of the book spoke to me deeply on one front. She said that the commandment "Though shalt not covet" is one that is impossible to keep. This very spiritual novel reassured me that I was human to covet, human to want these things that I thought would be mine, human to covet being out in the world like my friends and family.

Some days I try to imagine what it was like to move freely in my body and I can still just grasp what that feels like, but it is almost as if I have been sick so long that this ability to feel that muscle memory, or even cognitive memory, is fading. Just the other day I spoke with a friend who also danced and now also has POTS--we both spoke of dancing to Enya. The last dance I choreographed was to her song Ebudae and I often try to imagine what it would feel like to dance again.

I continue to struggle to find ways to feel full in my own life, as most days I am too sick to engage in activities that nourish me creatively, intellectually, emotionally, spiritually, physically and socially. Aaahh, but this is another topic for another day for another post!

Lest I end this post sounding as if life is a complete downer on this anniversary...there is also much to be grateful for. This brings me to another Jewish prayer recited each morning upon waking:

"I gratefully thank You, Oh Gracious One, for restoring my soul to me."

I understand that this time is NOT 'lost' time. I understand that I have learned more spiritually and emotionally than I might ever have learned in my lifetime if it weren't for this illness. I have learned so much and am always eternally grateful to those who support me with love and kindness, especially my parents.

I am also grateful that as I mark this anniversary we can truly say that I am in a better place physically than I was a year ago at this time. It's very slow (tortoise pace), but it is there if I watch for those subtle changes in pain or sleep or energy. This gives me a better sense of peace that we may be on the right track medically. The pace is a bit scary though--I may not have been too far off when on my 30th birthday I labelled this a 'decade of healing'.

Does my 'grateful section' of this post seem shorter than my section on grief? This is for two reasons: First, I have been grieving more lately and experiencing a 'dark night of the soul' more deeply. Secondly, I hope that my gratitude has already, and will continue to come through in my other posts which tend to focus on the 'ups' in my life. I hope my other entries reveal that even when I grieve, I cherish life and sustaining love.

Perhaps as my friend Marla said in an email to me about my journey: "I'm reminded of a line in an Anne Frank movie I saw once (Mary Steenbergen played Miep Gies, the Dutchwoman who befriended the family): "Every day more [of waiting and hiding] is just one day less of it." It's a rather profound way of looking at things that must be endured."

Perhaps each day of enduring this difficult Lyme treatment IS one less day of being sick. I do hope so and pray so. In the meantime, I grieve my losses and joyfully embrace my blessings. I work every day to make my life a blessing, and will continue to do so, illness or not.

Blessings,

Emily

Photos: Our redbud tree in early spring. Our irises in full-bloom in June.

Marla Visits! Our B and B Officially Opens!

Over Mother's Day weekend, college friend and former roomie, Marla, arrived for a 'girl's only weekend'. We had not seen each other since our graduation from Davidson NINE years ago!

When she arrived we began jabbering as if we had just seen each other yesterday. It was an amazing visit that exceeded any expectations I might have had. We had the most wonderful discussions about life, motherhood (and the impending birth of baby number two), and spirituality. The emotional intimacy of the weekend was beautiful, as was the blessing of seeing her in person and having the presence of her in our home. Being with her in person again felt so wonderful and solidified even more an already strong friendship that continues to grow with time.

We spent the weekend being very low-key--which was, I think, a great Mother's Day treat for Marla who is quite tired in her six-month of pregnancy and chasing her little three-year old Owen around. Mom, of course, provided us with plenty of good food to accompany our conversations!

I did remarkably well energy-wise and my ANS stayed calm enough to let me get some sleep while she was here. In fact, I think so far, this is the most I have been able to visit with anyone up to this point since before my Gallbladder surgery in 2005. We got a lot of talk time in (along with a lot of rest time!). I 'crashed' afterwards as expected, but did not have the level of symptoms that I usually do and was able to sleep quite a bit of the week afterwards, rather than be stuck in an 'autonomic storm' of sleeplessness, pain, shakes, heart pounding, sweats, etc.

The price I paid in health was worth it, hands down.

Thank you Marla for the blessing of your visit! And no waiting nine years again to see each other, okay???

Blessings,

Emily

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