Saturday, June 29, 2013

22. d'Artagnan's Corner: An Overview

Hello my lovely readers,
I feel it is appropriate to share a bit of where I am in my life with you--at least the level of information I'm willing for the entire world to know. It is the internet after all. I am happy to get to know any of you at a more personal level, but it will need to be done privately via email or other means. (See my "About" page for contact information).

So, where to begin? I guess it is safe to tell you that I work as a writing instructor at a university. I love my job. I love working with my students and being allowed to work in a field that I am passionate about. I do research on literature and my focus areas are: LGBT literature, human rights literature, multicultural literature, pop culture, Harry Potter, feminist theory, queer theory, and creative writing. I am currently working on a project on the Harry Potter series studying representations of Post-traumatic Stress Disorder in the stories and exploring how the series can then be used as a form of bibliotherapy (further posts to come on this research). I presented this research at the Midwest Pop Culture Association's annual conference in 2011. Below is a photo of me at the presentation.

(photo (c) J. d'Artagnan Love. No use without permission.)

Along with working full time, I am also in the last leg of a Master's program in psychology. I am working on my thesis research which is about Post-traumatic Stress Disorder and Animal Assisted Therapy (further posts to come on this research). My interest areas in psychology include: cognitive-behavioral therapy, PTSD, Animal-Assisted Interventions, introversion, and the psychology of chronic illness. I am still a baby in this field but I love it! The research is so interesting and I feel like I'm making a difference when I'm doing it.

On top of all that I am a beginning professional photographer. You can view my online photography portfolio here. Photography is so much fun! It is something I've liked doing since I was very little, like, eight or nine years old, and once I had to financial means to do so, I bought myself a professional DSLR camera and have been growing my business ever since.

I also do freelance and creative writing and editing. I currently do not have any freelance writing projects happening. I am focusing more, at the moment, on editing and have a few (paid!) editing gigs that I work on every weekend. I am also working on a novel. I try to write a page a day, but with everything I am juggling, I don't always get that accomplished.

I love, love, love, love animals. My ideal life is one full of animals...which mine is! I have three cats and a dog. Here's their fur-baby-family photo.

(Photo (c) J. d'Artagnan Love. No use without permission)

The grey kitty on the arm of the couch is Pi. She is my first baby. I adopted her at two months old. She is the diva of the house and I often call her "Prissy Princess Pi Pi". The dog is Orlando. He is the newest member of my family. He is a "China Jack" which is a Jack Russell Terrier and Chinese Crested mix. He is the sweetest, sweetest, dog in the world. The black cat on the top right of the couch is "L," yes, just "L." He was named after a character in one of my favorite series of books who is an awesome detective. You can read my review of this series here. L is a total spazz and when he's feeling playful he will climb walls and jump from pieces of furniture like a flying squirrel. Finally, the tortoiseshell kitty next to L is Cherry. Cherry and L are siblings. Cherry is the purrrfect cat--she's sweet, and snuggly, and has the most adorable, squeaky meow! All the cats are going to be four years old in September and Orlando will be two in September. They are my babies!

That all being said, this week was crazy! As you already know, I have EDS which is a chronic and often debilitating genetic disorder. You can read my EDS story here. Work was very busy with different events happening on campus. On top of that, my car took a poop. I drive a '98 Chevy Malibu and it took a poop. The repair is going to cost major money and right now I'm working on paying off some medical debt, and can't afford the repair. I spent the week hitching rides to work. Tuesday, a friend sent me a text saying she was giving away a car she had originally intended to sell, and that I was her first choice. She needed to get the car off her hands as she was moving soon. Wow. Just wow. I could not have been more grateful. So....now I have the Malibu which will only be used for short trips until the repair and a '94 Toyota Tercel (photos to come soon). I am so blessed to have such amazing friends and I really, really, really do have amazing friends.

Anyway, I was supposed to do a photo-shoot this weekend, but all the stress has taken its toll on my body. I'm in pain, have a massive headache, and am super fatigued. Such is the life of EDS. It was a really hard decision to make, but I had to postpone the photo-shoot. I have so much ambition and so many interests and avenues I want to pursue. Luckily, most of these things are EDS friendly such as my research, and painting. Other things aren't so EDS friendly and photography is one of those things. Photo-shoots often require being really active, being outdoors, lugging around heavy equipment, and getting up early on the weekends. I have to be very careful not to over-schedule myself with shoots and to make sure to plan shoots at times when I don't have a lot of other stressors happening. Unfortunately, this was not one of those times and I had to postpone and here I sit, writing this post for you. The day isn't a total loss and thankfully, my client was understanding.

I think that is a long enough post for the day. lol. This is where I am in this crazy-stupid-painful-wonderful thing called life. I hope you are all doing well. Thanks for reading, fremily.

--d'Artagnan


Thursday, June 27, 2013

21. My EDS Journey: Russel David Lewis' Story

My name is Russell David Lewis. All my life, I’ve experienced joint subluxations in every joint, and complete joint dislocations frequently in 36+ joints due to Ehlers Danlos Syndrome – The Hypermobility Type (EDS-HT). At a young age, I had to learn how to relocate my joints. My family, friends, and physicians never understood my pain and joint complications.

Eventually, my pain and joint instabilities prevented me from working. I attempted to apply for disability, and I have recently discovered I should have qualified for disability… However, they instructed me to name one joint or body part that bothered me the most, leading them to believe I was complaining of Arthritis. Hence, the Social Security Administration denied me and I’ve been forced to endure without treatment for several years. Recently, they said my Rheumatologist’s letter detailing how EDS-HT disables me doesn’t relate to the time-period of my 2010 SSDI/SSI hearing, as if I weren’t born with it.

Still, I go to college, so that I may have something to do, and to get away from my father… The joint dislocations severely limit my mobility, and I’m fortunate to have an amazing mother driving me to my classes. I use a cane to move around, since I have knee dislocations while walking; although, it causes joint dislocations in my thumb, hand, fingers, elbow, wrists, hip, and shoulder. If I could afford a handicap ramp and attachment for the car, it would be best for me to use a power wheelchair.

Thank you.

(Image used with permission from Russel David Lewis. No use without permission.)

Tuesday, June 25, 2013

20. Douglas Spotted Eagle

I recently had the honor of doing an email interview with Grammy Award winner, Douglas Spotted Eagle. He spent much of his life in Iowa, although he no longer lives here now, it is amazing to see what Iowans can accomplish. He won a Grammy in 2001 for his production of Gathering of Nations Powwow. He is one of the most well-known flutist in the music industry!

1. What inspires you as a musician?

Just about everything I do inspires me....Today I was flying for 45 minutes above the clouds, suspended from a large amount of nylon and string. The wind sings...and I'm inspired. The wind truly has color (no Disney-silly references please). Inspiration can be found in the students I teach, in their failures, in their successes. I'm inspired by falling in/out of love. I'm inspired by flying my body over the mountains and valleys, seeing the ground rush past my face. I'm inspired by the ocean and by the beauty we find in so many things if we just look for it.

This may sound pithy, but we have the ability to choose how we feel. Choose to be happy; you'll find happiness in just about anything. Choose to be angry... you can find anger in even the most beautiful thing. Inspiration is all around us...



(Image taken from: http://www.freecodesource.com/album-covers/B000006NPS--douglas-spotted-eagle-pray-album-cover.html)
(Above: The cover of his album, "Pray.")

2. How did you get started in the music business?

I was playing in a rock band in high school, and thanks to a stupid prank by an opening act, my band got a gig opening for ZZTop.


(Image from: http://dontfearthemainstream.blogspot.com/2009/02/oscars-vs-grammys.html)
(Above: Douglas Spotted Eagle [left] and Tom Bee [right] at the Grammys in 2001)

3. When you lived here, what did you like about making music in Iowa?

Iowa has a unique personality. The way the corn sounds in the fall when it's dry, the trains going by....and the open views. Wow...the ability to "stand on a can and see clear to Japan." When I was young, this was a joke but seemed so very real. I liked the talent in Iowa. There is a lot of it. I started playing guitar and taking lessons in Valley Junction.


(Image from: http://www.kazaa.com/#/Douglas-Spotted-Eagle/Voices/I-Miss-You-%28Instrumental%29)

(Above: The cover of his album, "Voices.")

4. What advice do you have for other aspiring artists and musicians?

Persevere. It's just that easy and just that hard. Persevere. Don't listen to other musicians that are popular and attempt to emulate them. Sing your own song. People will listen if it's from the heart. It might not be the most popular music at any given moment, but glory is fleeting. The good feeling of doing your own thing lasts forever. Making music isn't about being rich, famous, and iconic. It's about expressing your heart, your collective heart, painting aural pictures with the colors in your mind.



(Image from: http://www.last.fm/music/Douglas+Spotted+Eagle)

5. What are your future plans?

To fall in love with as many experiences as possible. To continue to explore my self, and to love those around me. If I can achieve these things, there will always be stories to put to music.


(Image from: http://www.amazon.com/Douglas-Spotted-Eagle/e/B000APVTAK)

6. How may people contact you if they are interested in booking a show or purchasing a CD?

I can be found at spottedeagle.com, my music is available in most major music stores, iTunes, Amazon, etc.

Thank you for the wonderful interview!

--d'Artagnan

Saturday, June 22, 2013

19. My EDS Journey: Yours Truly

I’ve been a sickly person all of my life. I’ve gone rounds and rounds with doctors since I was five years old. Few have been good experiences. Almost none brought me any answers. My entire life I have dealt with pain, not your typical sore-after-a-workout pain or I-stubbed-my-toe pain but gripping, debilitating, sob-producing, whole-body pain.

Along with this pain, I’ve had recurring and often severe infections: sinus infections, ear infections, bronchitis, pneumonia and more. I’ve dealt with recurring gastrointestinal issues: nausea, vomiting, food sensitivities. I’ve dealt with allergies to nearly everything: penicillin, amoxicillin, neomycin, nickel, weeds, trees, grasses, molds, shellfish, kiwi, latex and the list goes on. I have skin problems: easy bruising, easy tearing, weird scars, petechia and the list goes on.

I was active in sports through junior high and into high school. I rolled and sprained my ankles nearly every season of sport I was in. In 2002 I dislocated my knee cap and that ended my sports ventures. It took about six months of physical therapy to get my patella back in place and this injury never completely healed. I deal with intense knee pain and inflammation to this day, more than 10 years after the original injury.

In 2005 after returning home from a summer in France, my symptoms became much more pronounced. The biggest one that was recognizable was fatigue—bone deep, life-draining, disabling fatigue. I went rounds with three different internists, who if you are familiar with the television series, are essentially “Dr. House.” They told me I had migraines and sent me home with migraine meds. A few years later a family doctor told me I had lupus and began treatment as such, even though my test results for lupus were inconclusive.

Finally, in September 2012, I saw a rheumatologist who recognized the hypermobility of my joints as Benign Hypermobile Joint Syndrome, which is the same as Ehlers-Danlos Syndrome Type 3 (Hypermobile Type). Once I started researching EDS more closely, my life started to make better sense to me. The diagnosis, unlike others, fit perfectly. I need more testing before I will have my exact diagnosis pinned down. I need to be tested for the vascular type of EDS as I demonstrate several criteria for that diagnosis.

Since my diagnosis I have started new anti-inflammatory medication that is helping with pain management. I have also been through a physical therapy program and am working with an occupational therapist to make sure I have the braces, splints, and other supports my body needs to prevent irreparable joint damage. Right now, my big goal is accessing finger splints that are durable and affordable. Below is a picture of my hands. Every joint that is wrapped in blue tape, needs a splint.

(Photo (c) J. d'Artagnan Love. No use without permission)

I am able to live my life with this invisible disability just a shade different from “normal.” Every day is different. Some days I feel great with low pain levels and other days I can barely walk. I have to be careful not to become too stressed and to make sure to get plenty of rest throughout the week to fight off the fatigue and help my body fight off infections. I have to be careful to avoid spending time with people who are sick, to wash my hands frequently, and disinfect my living and work spaces to prevent infection because even the common cold can turn into pneumonia once my body talks hold of it.

There are many emotional adjustments with this as well. I’ve had to learn what my new “normal” is, what I can and can’t tolerate. I've had to grieve the loss of certain things I can not do ever, and things I’ve had to give up. For example, I wanted to join the roller derby team as a ref but there is no way my body will allow me to do that. I love to travel, but I have to be very, very careful about how I travel, where I travel, and when I travel.

EDS has limited me in so many ways, but it has also opened up doors of opportunity. It has given me a new avenue of writing and advocacy. It has allowed me to really think about what I want in my life so that I can let go of the things I just was “sort of interested in” and find ways of doing what I love, even if I have to make some adjustments to how I do those things.

That is my journey thus far, my story, my testament. I will keep you posted on what I learn and how my disease progresses, at least to a level I’m comfortable sharing online for the entire world to see. I am happy to answer questions via email at j (dot) dartagnan (dot) love (at) gmail (dot) com.

d’Artagnan



Tuesday, June 18, 2013

18. My EDS Journey: Dianne Connelly's Story

My Journey of Strength, Faith and Hope
Living with an Invisible Illness

Finding Answers in Maryland

At the age of 38, I should be at the prime of my life. Unfortunately, as health issues have become more debilitating, most days are spent lying in a recliner watching my life pass me by.  Things that I once took for granted such as: working, caring for my children, walking, or just being upright for any length of time, have become daunting tasks.  The normal life that I once knew is long gone, only to be replaced by days filled with pain and fatigue, both physically and emotionally.

Although I experienced symptoms intermittently over the past 15 years, I began to have severe and persistent symptoms three years ago when I had constant neck pain, pressure in my head, swallowing difficulties, numbness/weakness in my extremities, visual disturbances, and balance issues. In 2010, in the midst of seeking medical attention I was diagnosed with thyroid cancer. After undergoing a total thyroidectomy I was cancer-free. The neck pain remained so I sought the help of a local chiropractor. Eight months into treatment, I began to develop severe medical issues. I could barely hold my head up, my body felt twisted, my arms and chest were numb, cold and blue, and a bone began protruding through the back of my throat.  I sought the help of countless doctors telling them that it felt like “my head was falling off,” only to be dismissed or told that the issue that I had was elsewhere.  In the course of a year, I underwent five major surgeries: an emergency Anterior Cervical Discectomy & Fusion (ACDF) of c5-6 for a severely herniated disc that was compressing my spinal cord; emergency thrombolysis  for a Deep Vein Thrombosis (DVT) in my left arm; bilateral removal of my first ribs; and posterior revision & fusion of c5-7. Despite all of these surgeries, every symptom that I complained of (neck pain/weakness, swallowing difficulty, numbness, weakness & temperature changes in all extremities, blurred vision, feeling of cervical instability, spastic muscles, and pressure in my head) continued.  I was referred to Physical Therapy.  I sought the help of a highly skilled therapist at CPTE in Merrimack, NH, John Peterson, and finally received validation for the first time in over a year.  His evaluation revealed that there was in fact, upper cervical instability and he quickly referred me for further evaluation by a specialist.  Unfortunately, every specialist that I went to locally (in NH), at Dartmouth, and in Boston quickly dismissed me.

In the meantime, my condition has progressively worsened to the point of having to spend the majority of my day in a recliner, because it is the only position that supports my head and neck while removing pressure from the base of my skull and spinal cord.  I have to wear a rigid neck brace a majority of the time, because it is difficult to hold my head up.  The recliner has been my “bed” for the past 18 months, because it is the only place that I can sleep while wearing my neck brace. Although there have been many days that I have wanted to just give up, my faith has given me the strength and determination to figure this out and to find a doctor that can help me. After a year of relentless research, I did just that.

In early April, my husband and I packed up our family and headed for The Metropolitan Neurosurgery Group in Bethesda, MD (he also has an office located at DCH in Lanham, MD) to see Dr. Fraser Henderson, a leading authority on Neurosurgery and genetic conditions of the craniocervical junction.  After 2 years of being blown off by countless specialists, all it took was 800 miles, 2 days and MANY prayers to finally get answers and 100% validation for what I have been telling doctors. Upon conducting a thorough exam, undergoing the appropriate diagnostic imaging, and reviewing my medical history, my medical mystery was solved. Dr. Henderson confirmed that I have Craniocervical Instability (my skull is shifting off my spine), Chiari malformation (the bottom of my brain is herniating below my skull opening and restricting my cerebrospinal fluid flow), Postural Orthostatic Tachycardia Syndrome (POTS) –(dysfunction of my central nervous system), Tethered Cord Syndrome (the band that connects my spinal cord to my tailbone has thickened which is causing my spinal cord to be tugged downward), Basilar Invagination (the bone of my c2 vertebrae is poking into my brainstem causing ventral brainstem compression), Foramen Magnum stenosis (the opening of my skull is too narrow which is compressing my brainstem and spinal cord), Deformation of the clivo-axial angle (causing brainstem compression), and Instability of the c4-5 vertebrae.

Dr. Henderson explained that the source of these problems is Ehlers-Danlos syndrome-hypermobility type, a rare connective tissue disorder that causes weak collagen throughout the body.  This leads to laxity of ligaments, muscles, skin and blood vessels.  The fragile skin and unstable joints are the result of faulty collagen, a protein that acts as glue in the body.  There is no cure. It has been estimated that Ehlers-Danlos Syndrome (EDS) affects more than 1 in 5,000 people worldwide, but experts think that's conservative. Only 5% of EDS sufferers are eventually diagnosed with Ehlers-Danlos Syndrome (EDS).  “1 in 10 Americans have hypermobility connective tissue disorders,” according to EDS expert and neurosurgeon, Dr. Fraser Henderson. “That's 30 million people with a hypermobility connective tissue disorder - and we don't know exactly how many of them are afflicted with EDS. Many of them suffer daily with invisible pain and chronic fatigue. Each year in the U.S., 650,000 additional sufferers are undiagnosed or misdiagnosed due to physician oversight or lack of knowledge about the condition.”  EDS causes painful dislocations of the joints and can lead to hematological problems such as DVTs.  The hypermobility and dislocations of the joints can lead to Craniocervical Instability, where the head is wobbly on the spine.  You can think of it like a wet paper bag trying to hold up a bowling ball.  Trying to hold my head upright is exhausting.  Having instability at that level is extremely dangerous as well.  Any sort of fall or car accident could cause paralysis or death.

EDS is a major cause of Chiari Malformation, another overlooked and misunderstood condition that causes severe debilitation. Chiari occurs when a portion of the cerebellum pushes down through the opening at the base of the skull and compresses the brainstem. There is a disruption of the cerebrospinal fluid flow through the skull opening. This results in neck pain, headaches; changes in vision, breathing pattern, balance, coordination, strength and sensation. There is no cure.  Surgery is the only treatment to re-establish normal cerebrospinal fluid flow and stop the progression of neurological damage. There is no known cause or cure for chiari and surgery is the only treatment. Chiari affects an estimated 1 in 1000 people, yet those afflicted with this condition find it extremely difficult to obtain adequate care and knowledgeable physicians. Most cases of Chiari are left undiagnosed, or worse, misdiagnosed as multiple sclerosis, migraine, fibromyalgia, or psychiatric disturbances, a common error that prevents physically ill Chiari patients from getting the kind of help they need and deserve.

The frustration of navigating the arduous medical web is not only exhausting, but demoralizing. I have sought the help of top-notch neurosurgeons and specialists, locally, at Dartmouth, in Boston, and in NY.  Despite clearly articulating my symptoms and providing supporting information about craniocervical instability, Chiari and EDS, most doctors spent less than 10 minutes with me, never examined me, quickly looked at inappropriate imaging, and then dismissed me.  When I challenged them I was met with even more resistance. It was so refreshing to be treated with empathy and respect by Dr. Henderson. He is not only a highly skilled neurosurgeon, but he is truly a genuine and compassionate human being whose passion is to help people that suffer from EDS and Chiari. There needs to be more awareness about EDS and Chiari in the medical community.  When the impairments that EDS and Chiari cause impact the entire body, it would seem like all doctors should be aware of these conditions.  For example, in my case alone, having my neck hyperextended for 5 hours during my thyroidectomy was not the best for EDS and Chiari.  Had the surgeon been aware, other precautions may have been taken.  Since EDS impacts blood vessels, it would help phlebotomists to understand why it is so difficult to draw my blood and it would explain to an anesthesiologist why it took him 19 attempts to start an IV.  More importantly, when an EDS patient has hypermobile joints and Chiari Malformation, nobody should be manipulating their neck.  When Chiari is almost as prevalent as Multiple Sclerosis, you would especially think that Neurologists and Neurosurgeons would understand how it manifests into such a serious neurological problem, not just minimize it as something that causes a headache.  Although I am so grateful to have found Dr. Henderson, I find it absurd that I had to go so far for help.

Even though it took over 15 years to be correctly diagnosed, I feel extremely blessed. Through my research and connecting with people online, so many share similar journeys as me. It has been a very lonely & difficult 2 years fighting to make people believe that this is very real.  I am so grateful to have gone to such a knowledgeable Physical Therapist, who not only took the time to listen to my story and do a thorough evaluation, but he also validated every symptom that I presented and objectively agreed that there was upper cervical instability.  He went the extra step and referred me for prompt medical attention; however his assessment was dismissed as quickly as mine was.  He continued encouraging me to find a specialist that would take me seriously and reminded me that I was right and knew my body best.  He said one of the most poignant things to me in the midst of my anguish as I shared with him how one of the specialists refused to even read his PT report citing that he was a doctor so why would he listen to a PT.  He said, “This isn’t about being right…I would gladly be wrong…this is about helping you as the patient to get the help that you desperately need.”  If only the egos of so many specialists didn’t stand in the way of wanting to help me like John did.

 I am also fortunate to have a PCP who has been on this journey with me for the past 15 yrs.  Although he has never encountered a patient with EDS, Chiari and all of the accompanying issues, he has never discounted my symptoms. So many doctors are quick to label a patient as “anxious” or “psychosomatic” when they can’t find the root cause or quickly dismiss them instead of admitting that they don’t know what is wrong.  As my symptoms have become more debilitating over the past 2 years and I began doing my own research, Dr. (James) Fitzgerald has been 100% supportive in allowing me to advocate for myself.  When I brought him supporting evidence as to why I thought I had EDS, Chiari, POTS, and craniocervical instability, along with the specialists that I wanted to be referred to, he took the time to listen, and humbly admitted that I was teaching him about these conditions. He has always treated me as an equal part of my treatment team and respects my intelligence.

EDS patients are faced with many challenges due to this devastating disorder.  Many challenges are physical, but there is an added burden of emotional and mental stress due to a lack of understanding. I don’t feel like anyone REALLY understands what I am going through. To most people I look perfectly healthy, but most days I smile through the debilitating pain, neurological deficits and exhaustion that EDS causes. "Invisible Illnesses" are the worst to have because not only have I had to fight to get the medical world to believe that all of my symptoms are in fact real, but I have to fight against the scrutiny that comes from having something that isn’t obviously seen by others. Being the overachiever that I am, I tend to push too much and then end up laid up for days.It is emotionally exhausting having to explain my condition and to convince others that I'm not making it up. Being the overachiever that I am, I tend to push too much and then end up laid up for days. Although nobody can truly understand what I'm going through I am blessed to have a husband and kids that love me unconditionally and friends that have been there to listen to my frustrations over the past few years. It can be a very lonely place to be...so for that I am grateful♥from having something that isn't obviously seen by others. It is emotionally exhausting having to explain my condition and to convince others that I'm not making it up. Being the overachiever that I am, I tend to push too much and then end up laid up for days. Although nobody can truly understand what I'm going through I am blessed to have a husband and kids that love me unconditionally and friends that have been there to listen to my frustrations over the past few years. It can be a very lonely place to be...so for that I am grateful♥  People don’t see that side of me though.  Although I have an extremely supportive husband and 2 kids that love me unconditionally, they don’t always understand when I can’t do something. I have 2 small children that need and deserve a mother that can give them what they need.  As I watch my husband having to do the things that I once did after working all day, I feel such guilt.  Not only does he have to take on so much more, but I can’t even contribute to the financial needs of our family anymore, since I had to stop working 2 years ago.  The mountain of medical bills that have accumulated has created such a financial burden and now we have several trips to make to Maryland.  Through this difficult time I have to rely on my faith that everything will work out.

The emotional toll that EDS and Chiari can take on individuals and their families can be life-altering as well. While it is a relief to finally have the diagnoses to confirm why I have been so ill for the past few years, it raises a certain amount of anxiety about what our future holds.  After working so hard to obtain a Master’s degree and to be such a highly motivated individual who thrived on being involved in everything and fulfilling every demand that was placed on me, it is so hard for me to be in a position where I can barely hold my head up and require help for the simplest things.  As a counselor, advocating for others was my passion.  Now I am the one that needs help.

While the road has been long, my journey has just begun. I have 3 major surgeries ahead of me. In June I'll be having the biggest surgery - a brain decompression & craniocervical fusion (fusing my skull to the c2 vertebrae). Then I will eventually need to have my tethered cord released & my c4-5 vertebrae stabilized. If anyone is able to help restore me I know that it is Dr. Henderson.

I now feel strongly about raising awareness about these debilitating conditions, because even if I go through these surgeries and regain functioning, my fight may never be over.  Due to the genetic nature of EDS, I now have to worry about my children possibly having it.  Just from a brief review of medical history, Dr. Henderson suspects that my 7 year old daughter most likely has it.  After all I have endured to get the proper diagnosis and treatment; I will fight to make sure that she never has to suffer the way I have.  When a condition such as EDS or Chiari impacts millions of lives, all medical specialties need to be aware of what to look for, how to properly test and diagnose and who to refer patients to in order to get the help that they need in a timely manner.  Funding for more research is desperately needed as well. It is now my mission to bring awareness to the medical community and to advocate for others so that other families don’t have to experience what I have. 

I hope that my story may help others who have experienced similar symptoms. The best advice that I can give is to trust your intuition.  You truly are the expert on your body.  If you feel like something is wrong, be your own advocate and keep searching until you get answers.  Although it hasn’t been easy, making the trip to Maryland was the best thing I ever could have done.  I am eternally grateful for being led to Dr. Henderson.  Until my surgery at the end of June, it still means that many days will be spent lying in the recliner and trying to make it through each day, but I now have hope!



To learn more about these conditions, visit:




Dianne Connelly, of Merrimack, NH with her children Peyton, age 6 & Aubrie, age 7

Thursday, June 13, 2013

17. Topped Doughnuts

I recently interview Lindsey from Topped Doughnuts, a new bakery in Des Moines. Here is what she has to say about this sweet business.

1. When did Topped Doughnuts get started?
We opened in September of last year. I started developing the concept about a year prior to opening.

(Photo courtesy Topped Doughnuts (c))

2. What do you sell?
We sell fresh, made-from-scratch doughnuts that include gourmet flavors (Red Velvet, Maple Bacon, S’mores, Tiramisu, Coconut Crème Pie, Peanut Butter Cup… etc.) and also the traditional doughnuts people are familiar with.

(Photo courtesy Topped Doughnuts (c))
Topped Doughnuts is a locally owned shop. All of our doughnuts are made from scratch fresh each morning. We also make most of our icings and fillings from scratch. We do make the doughnuts that people are familiar with, but try to set ourselves apart by offering something you can’t get anywhere else.

(Photo courtesy Topped Doughnuts (c))
3. What inspires you in your work?
When I first started I wanted to challenge myself to do something different than anyone else. I would think of desserts and ask family and friends what their favorite desserts were and figure out how to make those into a doughnut.

(Photo courtesy Topped Doughnuts (c))

I have great employees and they are always coming up with ideas of doughnuts to make, most that I never would have thought of. I love the response of our customers when they see our doughnuts because they aren’t like the doughnuts they are used to seeing.

(Photo courtesy Topped Doughnuts (c))

4. What do you like about having a business in Iowa?
I grew up in Ankeny and enjoy all the familiar faces that come into the shop. Shops that sell “gourmet” doughnuts are starting to pop up on the coasts and I am excited to be able to have something like this here in Iowa.

(Photo courtesy Topped Doughnuts (c))

5. How can readers contact you if they are interested in making an order?
We offer online ordering on our website (toppeddoughnuts.com) or they can call us at 515-650-2046 and place an order over the phone. We do require 24 hours notice for orders and a minimum of a dozen doughnuts.

(Photo courtesy Topped Doughnuts (c))

Thanks, Lindsey for the great interview. I can't wait to eat some of your delicious pastries!!

--d'Artagnan

Tuesday, June 11, 2013

16. Kristy Cutsforth

Kristy Cutsforth is a freelance artist from Cedar Falls, Iowa. Her passion lies in painting and she uses a variety of mediums depending on what kind of project she is working on. Her favorite form of artwork is oil painting because, “of the versatility of that type of paint. You can create any color if you have good mixing technique and experience with color theory.”

Kristy’s art is inspired by, “bright, bold color, children's book illustrations and reclaiming old, forgotten images and items.” She started a shop called Rogue Painter that features mischievous, colorful painting that can’t be tied down. Kristy creates hand-painted shoes, purses, and jackets that can be customized with each order. She uses a special acrylic finisher to seal the items so there is no cracking, peeling or fading.



("Home and Garden" painting by Kristy Cutsforth)

Art has been important to Kristy her entire life. “I like the idea of recycling visual history into something relevant and relatable to our current time. It gives my work a sense of nostalgia, but still leaves room for experimentation and abstraction which modernizes the work,” she states. She started drawing when she was just three years old and continued to hone her craft through college.

“I took mail correspondence lessons from the Art Instruction School in Minneapolis for 3 years. I took every art class I could in high school, and that motivated me to pursue art at a collegiate level. I will be graduating with a B.A. in studio art in 2011 from the University of Northern Iowa,” she explained to me.

Her ambition has led her to inspire others to be creative in a painting class she teaches at the Unitarian Universalist Church in Cedar Falls every Wednesday evening at 6:30pm. The lessons are $12/class and she plans to create a range of classes saying, “I plan on having more classes in the future including: a children's painting class, watercolors, and advanced oil painting.”

Kristy hopes to continue expanding her freelance business and she also plans on, “entering more arts and crafts festivals, and entering my work in national juried competitions.” She understands the process of owning her own business: “Its a trial by fire process, but I've learned so much since I started doing freelance this summer. It takes time to grow and expand any business, but being an artist is a valid career. Its not something I need to explain or apologize for. I don't need a teaching degree to fall back on. If you have confidence in what you do, and create quality work, things have a way of working out.”


("Isolation" Painting by Kristy Cutsforth)

Check out Kristy’s Facebook page at:
http://www.facebook.com/pages/Rogue-Painter/156514011036661

If you would like to contact her for commissions or other freelance work her information is below:

www.kristycutsforth.com
Business Phone: (319) 849-8693

Saturday, June 8, 2013

15. Shameless Self Promotion from May 2013

Hello my lovies,
Here is a list of what I've done this month in terms of blogging, photography and other goodies. I admit, this is shameless self-promotion, but in today's world this is a necessary evil! 

--d'Artagnan

Posts on Living in Iowa (with links to the posts)
4. The Push-Up Brawlers
5. The Comfort Kings
6. Said Photography
7. EDS Basics
8. Airen McNally
9. May is Ehlers-Danlos Awareness Month Part 1 2013
10. EDS Awareness Month Part 2
11. Ede's and the Angry Pickle Deli

The Latest on  Studio d'Artagnan (with links to the posts)
10. Spring Photos 2013

14. Film Recommendations from May 2013

Hello Fremily (my word for friends that are like family),
I haven't had much time for watching movies this month--at least not as many as I usually do. Here are films that I saw, some for the first time and some for the hundredth, that I love and recommend.

1. Dark Shadows


I loved this! It has some gory points so if you  have a weak stomach, watch with caution. The story line was great and the characters were lovable. Tim Burton is hit or miss for me, but this one was a hit.

2. Moneyball


I re-watched this film to get ready for baseball season (Go White Sox!). Although the plot moves slowly at points, I really like this film.

3. Cinderella


A childhood favorite of mine, Cinderella was randomly on TV when I was flipping through the channels one evening. I hesitate to watch films from my childhood thinking that they won't hold the same magic for me now that I'm an adult. Cinderella was not one of those films. I'm still a sucker for this animated classic.

That's it for this month! What have you been watching?

d'Artagnan

Thursday, June 6, 2013

13. On the Bookshelf May 2013

The following books were reviewed on my blog The Write Reader. Check them out if you are interested! 

1. Dark World: Into the Shadows with the Lead Investigator of the Ghost Adventures Crew. By Zak Bagans and Kelly Crigger. I read this book because I am a fan of the television series Ghost Adventures on the Travel Channel. This nonfiction work goes behind the scenes of the show. Read the review here.


2. The Hunger Games series. By Suzanne Collins. I try to keep up with the latest best sellers, I really do! I tend to fall behind but eventually the books get read. I read the Hunger Games series because my best friend insisted that I would love them. She was right. She is always right about these things. That's what best friends are for. Read the review here.


Those were all the review I accomplished this month. I am slowly but surely, as stated in my welcome post, figuring out what my "new normal" is in terms of balancing everything in my life with my diagnosis of EDS. I am confident that in June, I'll have even more regular reviews posted as reading is one of those activities I can do that won't cause a flare up of symptoms. Love to you all my loyal and fabulous readers, you. 

d'Artagnan






Tuesday, June 4, 2013

12. EDS Awareness Month Part 3

Here are the last group of factoids for EDS Awareness month! 
--d'Artagnan