Up, Up and Away!

Time again to increase my Lyme medications--the focus being on increasing the minocycline (antibiotic).

Since April of 2006 I've made it from one teeny tiny 50 mg pill per week to two days on/one day off/two days on/one day off, etc.

I'm now going for 3 on/1 off/2 on/1 off/2 on/3 on/1 off/2 on/1 off/2 on/ 1 off/3 on, etc. (Oh what a joy this is for my mom, who has to fill my pill packs!)

So, I've just done round one of three days in a row and am herxing miserably. I don't know why those three days in a row knock me out so badly! (To put this in perspective, if you had a sinus infection you might take 2-3 of these pills per day without problem. I'm taking ONE pill 5x/week. Within a year and a half I've taken fewer pills than a teenager with acne might!)

I tried my best to watch the fireworks on TV through my foggy brain, but I don't think I really took in much of the display (which is supposed to be one of the best in the country). I think the fourth of July has been pretty much a disaster every year since I've been sick!

So, it's 165 minos down and ????? to go.

It's up with the mino, and perhaps 'away with me' for a bit, as I hang out in my tortoise shell.

So, if I'm more quiet than usual...it's because I'm focusing on this latest increase in antibiotics.

When I told my friend, Jeannine, that I often hold off increasing my meds because I'm afraid it will make me unavailable to my friends when/if they need me for something...she gave me the what for! So, I'm working harder to focus on treatment and praying that you'll all still be there when I emerge from each round.

I'm making progress slowly but surely. Each time I increase and get through the herx, I feel stronger than I did before. So, I'm trying to say 'Bring it on! This is my way out of this shell eventually!' (So much easier said than done, especially when I'm whining about how badly I feel! haha!)

So, up I go with the mino.
Away into my tortoise shell.
Hopefully to emerge stronger than before.

Blessings,

Emily

Photo: Well, I can't stand a blog entry anymore without a photo, so I'm adding this one a bit late. Today (July 20th) the clouds were perfect against the background of a clear blue sky and the green of the trees. This photo makes me think of flying up, up, up and away to better things.

It's Official TODAY: Mom's RETIRED!

Now that the fiscal year has ended Mom is 'officially' retired, although she finished her last ever batch of grading papers, giving exams and cleaning out her office on May 10th. Most of the celebrating occurred that week--since she hit 'The Trifecta', as my friend Jeannine coined it--birthday, Mother's day and retirement all in one week!

Mom keeps saying "You've already done enough to celebrate my retirement" or "You're making too big a deal out of it, it's not that big of a deal."

Well, I disagree! I am feeling such excitement for my mom as she gets ready to enter a new adventure in life. Along with her, I am also feeling the angst of the transition from career-woman to retiree, the relief in no longer juggling career and care giving, the sadness in losing the connections and social networks provided at the university, and all of the other emotions that go along with such a life change. Mostly though, I feel an excitement for her. And admiration.

For the past few years she has been saying, 'When I retire....' and filling in various things she will have time to do. She's READY for retirement. Should've made her pay a nickel every time she said, "When I retire..." because I'd have quite a chunk of change by now! She's already spent endless hours out puttering in the yard and whipping Asher into shape with long walks. She's longing for days of sitting on the porch reading books and curling up to watch a few good movies. So far, we've been so busy with company she hasn't had much R and R yet!

Not only am I excited for my mom, but I am also proud.

Having two parents with PhDs is, well, humbling. The thought of going on for a PhD makes me feel slightly nauseous, weak at the knees (Wait a minute? Don't I always feel this way?) and well, terrified. I admire both of my parents for finding their passion in Sociology at such a young age and devoting their entire lives to it.

In my mom, I admire that she 'stuck it out', that she persevered pursuing a PhD when few women did. When she tells me the stories of discrimination that she faced I am shocked--and saddened that such discrimination still occurs for women today. In graduate school she was initially given a grant--which would pay for her schooling without her having to do an assistantship. The grant was revoked on the premise that, because she was a woman, she would be unlikely to actually work in her profession! Later, after earning her PhD and beginning her teaching career she was told, upon requesting a raise that, "She had a husband to support her so she did not need a raise."

I admire that she found a passion for Sociology and maintained it for all of these years. I cannot begin to imagine choosing one of the things that I am passionate about and dedicating a lifetime to it. Our days of 'talking shop' will not end just because she is retired, nor will her days of underlining and clipping articles in the paper relating to anything Sociological.

I admire that she and my Dad taught me to be a 'little Sociologist' myself--and I feel proud when I point out something about gender or race or family that I observe and my mom says, 'Wow! I didn't catch that!'. I am incredibly grateful for having a mother who taught me to look at our society; to care about inequality, poverty, gender roles, race, politics, health care, family, marriage, social policy, education, social class, work-family conflict, etc. and to look at how these various factors affect our society.

I admire that, despite having a job that itself was often demoralizing and demeaning, my mom never sacrificed her integrity. She never stopped caring for the students or doing her best to teach them. I admire all teachers who give their lives to expanding the minds of others. She continued, until the end, to be innovative and engage her students in the classroom. She also served as a listening ear to many students over the years, as she believed strongly that faculty should be available not only to teach the students but to help them through a difficult situation. Over the years she helped students who confided in her about pregnancies, drug abuse, cancer, marital problems, abusive relationships, etc.

I admire my mom for being one of the women who set the precedent for my generation; One of the women who fought for my generation to have CHOICE. Because of the women of my mom's generation we have a choice--to work, to stay home, to pursue higher education, to have children, to not have children, to be financially independent, to marry, to not marry, and if married, to leave a bad marriage and take care of ourselves.

She taught me the value of education. My parents saved money on other things (we still have furniture purchased from Goodwill during their days in graduate school!) so that I could go to the college of my choice. My mom has always told me, "Your education is the only thing you will ever have that is yours and yours alone." I just wish part of my education had been taking an actual class from both of my parents!

In all that I admire, I feel sadness that my mom could not pursue her career more deeply; that she could not do the research to be promoted in her years at the university. I wish that teaching itself was as valued as research, but this is not the case! I feel sad that her family obligations kept her from pursuing research and advancement opportunities more intensely.

At the same time, however, I feel incredibly grateful for the sacrifices she DID make. I am who I am because of her. And while she gave up career-time, I got time with her to have her just as 'mom, eating Ritz crackers with PB and Marshmallow cream and telling her about my day at school, rather than always having her as Dr. Mom the Sociologist. Would we have the same loving and close relationship that we do now if she had worked more? Maybe, maybe not. We'll never know. But, I 'Thank You' is hardly enough to express my appreciation for what she did give up for me.

So, CONGRATULATIONS MOM! I love you and I am so proud of you! Thank you for all that you have taught me about being a woman, about sociology, and about life.

I wish you many years filled with new joys, new adventures, new passions, excellent health, loving friends and family, and plenty of time to "play" in the yard, take long walks, read good books, watch movies, travel, volunteer, and take a few naps here and there!

With all my love,

Emily

Photo: Mom and I--taken June 9, 2007.

A Davidson Summer Continues: Loralea Visits

I've been calling this my "Davidson Summer" because within six weeks time, three friends from Davidson planned visits--Marla, Loralea, and Carrie.

Loralea arrived in pregnant glory from South Carolina for a visit June 8-10. I wanted to invite her for a visit to celebrate both the upcoming arrival of her baby as well as her graduation with a Masters Degree in School Counseling--a hard earned degree that she did while still teaching high school math. I know she is enjoying the summer break with NO classes, NO teaching and time to spend with her husband and dog while getting ready for baby.

At Davidson we were freshman and sophomore roommates. Davidson uses the Myers-Briggs test, the four essays you write for college admission, plus an additional survey about yourself to pair you with your freshman roommate. They also work to create a cohesive hall unit. It's pretty amazing what goes into choosing roommates, who often become lifelong friends as Loralea and I did.

It was really great to see Loralea and to have one more all girl's weekend before she has her baby (sex unknown and will be a surprise, which makes it so much fun!). We got in a LOT of talk time, just as I did when Marla was here. Poor Loralea is more of a morning person though, and I'm more of a night person, so I think I kept her up a bit late! I was able to get in several hours on each day she was here to spend time with her. I think I made it past 11 pm! This is something that has not happened since before my gallbladder surgery. Have you noticed that everything hinges on before and after that horrible date in January of 2005???? Yikes!

We, of course, ate good food, hung out, TALKED, and got in our share of hugs. We were definitely known at Davidson for our loving friendship. Marla commented before Loralea's arrival that we'd probably spend the whole weekend stuck in a hug! We didn't, but did catch up on hugs!

During my nap times/sleep times Loralea got in some relaxing time for walks, painting her toenails, lounging on the porch to read a magazine (the weather was perfect), watching a bit of TV, and taking some naps herself! The pace of life here always seems so slow to everyone else and they get lots of down time. For me, when I have visitors, I'm in high gear!

Having friends and family take time out of their busy lives to spend the time and money to travel here is a HUGE blessing that does not go unappreciated. I cannot imagine doing this journey without my friends standing by my side--and coming to visit.

Phone and email can never replace having a friend's presence in our home. Just being together and getting to hug and talk in person is such a special experience. With Loralea's busy schedule I am not sure when we will get to see each other again...so I am incredibly grateful that she came this summer! Maybe someday I'll be well enough to travel to the great state of South Carolina and meet her little one.

Thanks Loralea for a great all girls weekend filled with long talks and the comfort of being with a friend who knows me and loves me for me! (Still loves me after some of those crazy roommate things that happen when we are 18!)

Blessings,

Emily

Photos: Loralea and me outside, Lorlaea lounging on the porch reading a magazine, Loralea posing for a six-month prego 'belly shot', Loralea and me in our kitchen.

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