Meet the Member
by Melanie Bassett

• Emily (Dancinglight)
• Rachel
• Gayla (Dawg Tired)

Emily (Dancinglight)

Emily (DancingLight) and Melissa (Sunfish) are very close friends. I meant to feature both in the summer issue of Dysautonomia News but, my life took a turn when a liver became available for my brother awaiting a transplant. My apologies for not publishing “Sunfish and Emily” together.

As I transcribed Emily's questionnaire, there was so much energy in the pages that I found myself typing faster. Em is 31 years old. Her occupation is to focus on healing, being a “patient” patient. She has a snuggle buddy, who is a Wheaten Terrier named Asher. Asher is also known as Lovebug, Asher Dasher, Goofy Doofy and Asher Noam.

Emily’s favorite childhood memories include attending a Friends School for two years, dancing and dance camp, getting her first puppy and going to the beach in Emerald Isle, NC every summer.

Her late grandmother, her parents, friends and the people she has met at DINET inspire her. Emily compliments us by saying that we show such amazing strength, grace and generosity. Emily, you are an inspiration. I believe with your attitude, energy and persistence, you will overcome.

I will let Emily continue from here in first person, as she writes so well. You will see for yourself when you visit her blog!

I became sick one month and one day after my graduation from Davidson College in 1998, thus I just recently marked my ninth anniversary of ‘getting sick’. Over the years I have been misdiagnosed several times. After initially being diagnosed with chronic fatigue syndrome, I was then diagnosed with neurally mediated hypotension after a positive tilt test (it took me a whole nine minutes to pass out!). Even with these diagnoses I continued to pursue answers, as I wasn’t improving or taken seriously. In the years that followed I was diagnosed with POTS and Ehlers-Danlos (Hypermobility Type). Later, I learned that I had been misdiagnosed with EDS and was correctly diagnosed with neurally mediated hypotension and postural orthostatic tachycardia syndrome, as well as chronic fatigue syndrome.

After gallbladder surgery in January 2005, my health took a dramatic turn for the worse (and I wasn’t exactly in top shape before the surgery!). My doctors were left completely puzzled by my autonomic nervous system dysfunction. After exploring more possibilities (i.e. cervical stenosis, chiari, etc.), we (me, my doctors, and my family) took a huge leap of faith and began treating me for possible chronic Lyme disease. Because I have been refractory to all other available treatments for ANS dysfunction and because of the degree of my neurological symptoms, my ANS specialist suspected that something more was going on to cause such extreme symptoms.

So far, treatment for Lyme has been very difficult, but I am beginning to see progress in my ability to do a bit more, sleep better, and be in less pain. My ANS symptoms have also become less extreme. I am moving at a tortoise pace, and must look for the subtlest of changes to hold on to hope that I will continue to improve. A big marker of my improvement for me came this summer when I was able to enjoy a plethora of visitors—which I could not have done even a year ago.

I chose the forum name DancingLight because I wanted my name to be more about who I was and not about illness—because, as Christopher Reeve said, “I’m still me.” I asked a spiritual counselor what words came to mind for me and he said ‘light.’ I began dancing at age 3 ½, continuing to dance all the way through college right up until I became sick. Not being able to dance has been one of the most difficult losses for me. However, Martha Graham once said, “Dance is the hidden language of the soul.” I’ve realized that I can still dance in my soul, even if my body cannot. So I feel my spirit to be a DancingLight. That is what I want to be unto this world.

As a little girl, I attended a Friends School where we often sang the tune, “This little light of mine, I’m gonna let it shine, let it shine, let it shine, let it shine.” DINET has been a life-changing force in my life for the past three years. I cannot imagine my life without DINET and the friends that I have made because of it.

Although I do not get to post much on DINET these days, I hope that my past posts have and will continue to be a source of light to those who read them—that someone will suffer less because they solved their ‘puzzle’ sooner, that someone will find comfort in my words, or hope in my story. I hope that this little dancing light of mine shines.

Since my surgery, I have been completely homebound and unable to engage in many activities that nourish me physically, emotionally, spiritually, creatively and intellectually. I live at home with my mom, who must do all of the household chores, meal preparation, etc. because I am not able to do any of these things. My dad and stepmom live about 20 minutes away, so close family surrounds me.

I am passionate about so many things, and long for the day I can engage in more of my passions! Right now, I am most focused on healing and spending as many moments of precious energy with friends and family (in person, on the phone, or via email). I listen to books on tape and a LOT of music, while I cuddle with Asher. I’m finding my way back to knitting, delving deeper and deeper into my Jewish faith, and taking precious moments of clarity to write on my blog, which is my latest passion. Writing nourishes me in a way I have not been nourished in a long time—as I love the tangible finished product, and I love writing and creating—with the ultimate goal of using writing as a way to connect with others. I want to portray with honesty what it is like to live with chronic illness, specifically Dysautonomia and Lyme. Check my blog out at www.adancinglight.blogspot.com!

I look every day at the print in my room that reads, “Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all” (Emily Dickinson). I truly believe that for the first time in the entire nine years of being sick we are finally on the ‘right track’. I am blessed with amazing doctors, family and friends who support me through this all. I feel a new ‘stirring’ inside of my tortoise shell of joy, hope, and healing that I have not felt for many years.

Rachel

Rachel Lundy is twenty-seven years old and lives in Georgia. She joined DINET in January of 2005 and is one of our moderators. On the day she joined the DINET forum, Rachel had “brain fog” and just used her real name. She sometimes regrets not picking a fun user name. (Not to worry Rachel, your avatar makes up for it!!!!!!!!!!) Rachel has several nicknames including Rache, Rae, Rah, Amazon, Queen, and Miss Rachel.

Rachel has been diagnosed with POTS and NCS. The symptoms started when she was around age ten. She had random bouts of nausea and shortness of breath. It became clear that something was wrong when she was fourteen. Up to that point, Rachel had been a year-round competitive swimmer, so it was a surprise when she appeared to develop exercise induced asthma. Extreme fatigue, fainting and tachycardia soon followed the asthma.

Rachel was diagnosed with neurocardiogenic syncope at age fifteen. POTS was added to her diagnosis when she was sixteen. Rachel’s health improved when she was seventeen, and she remained at a functional level until she was twenty-four. At that point, Rachel’s health declined, and she eventually became disabled.

Now to the fun part:

Rachel has a wonderful husband named Will. They met in college, became good friends, eventually started dating, and were married in 2002. Will is one her greatest blessings. In 2005, God blessed them with a son, William. He makes her smile every day. He is a well-behaved toddler who loves to read books with his mom.

Rachel, Will and little William moved in with Rachel's parents a year ago. Rachel’s parents help with daily activities and caring for William. William is living every child's dream: Opa and Nana right at his fingertips dishing out lots of attention.

Rachel enjoys making/writing cards and reading. She sends cards to friends, those who need encouragement, someone who is sick, or “just because.” On good days she loves to crochet and scrapbook. On bad days she watches I Dream of Jeannie or Baby Einstein with William. William dances when the Jeannie music starts.

Although Rachel is unable to work, she graduated with degrees in Biblical Studies and Christian Education. She worked for a year after graduating as a part-time in-home caregiver for a woman with MS. It was a wonderful job, but she had to quit due to her own physical limitations. Recently, she started a personal website for family and friends. It is called Cranberry Tea Time.

Rachel's response when I asked of her favorite childhood memories is as follows:

My favorite childhood memories center around Christmas. My family spent many Christmases at my Oma and Opa's house. My father and his family are from Germany, so Christmas at his parents' house was full of German traditions. Oma and Opa worked hard to make the evening a delight for all. Sometimes my Tante Hanna would fly over from Germany and be there as well. When we went to Oma and Opa's house on Christmas Eve, we weren't allowed to see the Christmas tree at first. We all went to the back room, which was lit by candles, where we ate a traditional German meal. We had knackwurst (which we kids called "crunchy hot dogs"), potato salad, rolls, deviled eggs, and pickles. After dinner the adults would clean up while the cousins would gather outside the living room door anxiously awaiting the arrival of Kristkindel. Before long we would hear a bell ringing in the living room, signaling the arrival of Kristkindel. Excitedly we would rush into the living room, which was aglow with candles and the lights of the Christmas tree. The Christmas tree was covered in ornaments, chocolate candies, and tinsel. Below the tree a sparkling winter village lay, and all around the room there were beautiful presents. Everyone would take a seat and we would listen to German Christmas music. It was hard to sit still for this part as a young child when all I wanted to do was open my presents. However, as I got older I learned to appreciate this time very much - the company, the decorations, and the time to quietly reflect on the true meaning of Christmas. As all of us cousins got older, we also tried to sing along with the German Christmas carols. This was a lot of fun, but it wasn't always the prettiest sound as none of us spoke German very well!

After the music, we would take turns passing out the gifts and thanking one another. The rest of the evening was spent visiting, eating various German cookies and treats, and simply enjoying the holiday with family.

Rachel’s holiday reflections get me in the mood for Christmas!!!

There are many people who inspire Rachel, one of whom is her husband, Will. He cares for her and William tenderly and faithfully. Will's faithfulness, love and devotion leave Rachel grateful to the Lord for the blessing of such a wonderful husband.

Rachel’s DINET friends inspire her as well. She sees what they endure and the grace with which they endure. Rachel is encouraged and thankful for what she has, and it helps her to “keep on keeping on.” She also looks to the heroes written about in the Bible, such as Esther, Ruth, The Proverbs 31 Woman, and Paul. Jesus inspires Rachel the most; he never ceases to amaze her.

In closing, Rachel would like to share the following with us:

“Life with dysautonomia is hard, but in Jesus I have found hope, strength, and a reason to carry on. He sustains and carries me through. Despite the challenges I face, I have been greatly blessed. I am thankful for the blessings of life, my family, my friends, and my faith. I am thankful for all of you, my DINET friends. I appreciate all of you, the things we've learned together, the advice we've given and received, and the warm company we have found on the board. I am so glad to be a part of DINET.”

Rachel, you are a blessing to all of us here at DINET. Thank you.

Gayla

Gayla is forty-eight years old. After many years of dysautonomia symptoms and people thinking she was lazy or that it was all in her head, Gayla was diagnosed in 2002 with Neurocardiogenic syncope, sick sinus syndrome, chronic fatigue syndrome and fibromyalgia.

Gayla’s forum username is “Dawg Tired.” She uses this name because it describes how she feels. Her family consists of a “fantastic hubby,” “an outstanding son”, and “2 wonderful sisters.” Her husband is a Preacher, so Gayla's occupation is that of a Preacher's wife. When she is not caring for others, Gayla is occupied with two fur kids of the feline variety, Hector and Callie. She enjoys reading and watching the birds in her yard in Missouri.

Gayla joined DINET in January 2004. Her posts often include fun pictures of birds, cats, trees, flowers, her family and home. I even saw one with sheep!

When asked about her favorite childhood memory, Gayla remembered swimming with her dad. She learned to swim at a very young age because, growing up in the Arkansas Ozarks, she always lived near lakes and rivers. She and still loves the area.

When Gayla was eight years old, a friend and her (the friend’s) mother were killed in a car accident. She remembers everyone standing around crying, “ Joy never really lived.” At that point she resolved to live every moment of everyday, and to make the most of it.

One of Gayla’s life long dreams has been to go to Montana. In the year 2000, she married a wonderful man who always wanted to live in the Rocky Mountains. They spent two and a half years living there until Gayla became ill. At that time, they felt they needed to live closer to family, friends and doctors.

When you look at Gayla's photo, you may have noticed that she is in a cemetery. Rick, “her fantastic hubby,” and she are busy mapping and photographing the cemetery at the little country church where he preaches.

I love the little quote that Gayla has on her posts- “I've reached the snapdragon stage of life....Part of me has snapped and the rest of me is draggin”!!!!! I can relate!

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