Saturday, December 21, 2013

31. Things I Learned in 2013

As 2013 is coming to a close I've been reflecting on what I learned over the past year. I'm always prone to nostalgia around the new year and I've found this to be an important part of my growth as an adult. The following is a list of important things I learned in 2013 (in no particular order).


  • I learned to drive a manual. Scratch that. I re-learned to drive a manual. I begged family members to teach me the art of driving a stick shift when I was in my late teens early twenties. My brother would occasionally cave and take me to the high school parking lot for an hour here and there but I was never allowed to leave the parking lot. That was the end of my stick shift driving lessons. Enter July 2013 and a fabulous car deal I couldn't pass up. A friend, who plans on moving soon, needed to unload her vehicle and was giving it to me and my roommate....for free. The catch? It's a manual. I managed to get the car home and then with lots of practice around my quiet neighborhood and the clinic parking lot across the street, I painstakingly re-taught myself how to drive a manual. I can now drive the car through downtown traffic without a hitch. *Pats self on back* It felt good to do this....really good. It was like a big ol' f-, well, you know, to those who wouldn't teach me in my younger days. I turned out to be pretty darn skilled at it if I do say so myself. 

  • I learned how to design a psychological study and obtain IRB (internal review board) approval. I'm at the stage in my thesis work where I have begun collecting data. It is an accomplishment in itself to be at this stage as making one's way through the IRB process can be complicated and slow. Thankfully, my coursework prepared me well enough that my initial study design only needed a few revisions for approval. I hope that with enough data this could become a publishable piece. *fingers crossed*

  • I learned that L-Kitty is one of the most dynamic animals I've ever known. He's right up there with Dublin (my friend's cat who feared no one and loved everyone) and Skip (the quarter horse I've known since the day he was born). L-Kitty can win hearts and make enemies like no cat I've ever met. For example, when my roommate moved in around January, his first reaction to L-Kitty was "you should really find a new home for him." L-Kitty is my problem child, yes. He's also brilliant, and sweet, and perceptive. By December of this year the roommate actually asked, "Can L be my cat?" The roommate has been won over by my feline and now expresses his love and devotion to L. L-kitty meows at me non-stop when one of his kitty sisters is in trouble. Examples include when Pi was accidentally shut in the closet, or when Cherry's claw got stuck in the screen door. L was the first to sound the alarm when I injured my knee and is the most tolerant of Orlando (my dog). He really is a special (and irritating, destructive, and exasperating) boy. 


  • I learned, and continue to learn, the cumbersome process of buying a new vehicle. My goal is to purchase a new (or new-to-me) car by June 2014. My current transportation should hold out until then and in the meantime I am learning about bank loans, APR, and trade-ins. I'm learning how to assess a vehicle for quality and how to talk down a dealer. The process can be overwhelming but I am making my way through it. 

  • I learned what I am up against with EDS. It isn't pretty. A big obstacle to a good quality of life for people with Ehlers-Danlos Syndrome (EDS) is the medical community. Yes, you can read that again if you need to. What infuriates me about living with this disorder is that 99% of the doctors and medical professionals I've encountered don't know it exists, and if they do know it exists, they poo-pooh and dismiss it as though it's not really anything to treat or care about. EDS is a scary disease making every part of a person's body fragile including organs. The vast majority of research being done about EDS is happening in the UK and researchers there actually discourage people with EDS from becoming organ donors because our organs would be no good to the people receiving them. If they are no good for "normal bodied" individuals, what does that mean for us? What good are they to us and why do doctors in the US remain so ignorant about it all? "Infuriating" is the only word I can use to describe my experiences with medical professionals. There is one doctor in Iowa who specializes in and treats connective tissue disorders. One. It is estimated that 1.5 million people in the US have some form of EDS and in Iowa, there is one doctor who will treat it. One! This learning process will not end for me because EDS (being a genetic disorder) will never go away. The reality is scary but there you have it. 

That covers the major lessons of 2013. What does your list look like?

--d'Artagnan

Saturday, September 21, 2013

30. Fall in the Valley

It is fall here in the Cedar Valley. Fall tends to represent a time for renewal and fresh starts. I think this is because of the connection my brain makes to going back to school. The summer went by so fast. I can't claim it to be the best summer I've ever had, but it wasn't the worst either.

Perusing Art This Summer
I was sick this summer quite a lot. I had two rounds of bronchitis and bronchitis generally costs me 6-12 weeks of recovery time. I had planned to attend a wedding in July and was unable to due to illness.

"Cave to Canvas" by Rene Gruau

I had planned to attend the Iowa Irish fest and was unable to due to illness.

"Golden Apples of the Sun" by Mo Kelly

I had planned to attend my 10 year high school reunion and was unable to due to illness.

"Waterfall" by Amy Genser

I had planned to attend Cedar Valley Pride Fest and was unable to due to illness.

"Elements-Fire" by Cassiopeia Arts

Are you catching on to the pattern here? All of my summer plans were a bust thanks to my body. Right now I'm through the worst of the bronchitis symptoms, but I have to be very careful still as fall allergies can wreck havoc on my immunity. My pain levels this week settled into something more manageable and my biggest problem right now is my right knee. My knee cap just does not want to stay in its groove.

To avoid falling into a pit of resentment and self-pity regarding my summer, I found myself surfing the web and looking at art. I'm not sure why exactly, but doing this made me feel like my summer was less of waste.

Thesis Work
My thesis work is coming along slowly but surely. I made it through the first round of approvals and the next hoop I have to jump through is the IRB process. Once my IRB application is approved, I can move forward and actually start collecting data.

I'll be researching the impact introducing a therapy dog into CBT sessions may have on treatment outcomes for veterans with PTSD. My committee seems to believe that this will be a publishable study upon completion so I have my fingers, toes, and everything crossed that I will get approval soon to move forward with the work.

Looking Forward and Turning the Page
A phrase that has consistently cropped up in my life lately is "turn the page." I've thought about the phrase a lot and spoken with many friends about what the phrase means to them. For me, the phrase, in part, means to turn the page on this summer.

This summer felt so much more like existing than living. Each day I seemed to only focus on how I was going to manage to get through the day without breaking. Living with chronic illness and chronic pain can do that to a person. It can turn you inside out in a way. Rather than think about what to look forward to in a day, I've been thinking about how to avoid the pain the day may bring. I let pain and illness take control and make decisions for me. EDS became this strange entity this summer that not only caused me problems physically, but broke me down mentally as well. Time to turn the page.

I am hopeful that with fall being one of my favorite times of year, I'll be able to sweep the cobwebs out of  my brain and sit in the proverbial driver's seat once again. Wish me luck.

--d'Artagnan

Tuesday, July 16, 2013

29. Basye's Misty Valley Farm

Recently I had the privilege of interviewing Ryan Basye of Misty Valley Farms. The farm is located in Dysart, Iowa and they farm everything organically. They raise and sell chickens, eggs, and other produce.



(Photos of the farm)



“Our farm is very small, with most of our 13 acres in pasture land with a creek running through it. We have a large kitchen garden and several laying hens. We do everything organically. Nothing man-made is used for fertilizer or fed to our animals, including GMO grains. We get our chicken feed from a local farmer that grows much of his own feed grains,” Ryan explained.



When we raise the broiler chickens, they are rotated everyday on to fresh grass. This allows them to eat food that has fresh omega 3 fatty acids (very important) as well as any bugs they might find. Conventionally-raised chickens will have very few omega 3's even if they have flax seed in their diet,” Ryan tells me.


(organically raised chickens)

Ryan is inspired to farm organically for the health of the community. He grew up in Iowa and loves it here: “It's home and I love being here.”


(Hoar frost on the farm)

When asked what he loves most about his work he replied, “Knowing where our food comes from and how it was raised. I feel a lot better not having to buy meat and most veggies for my family from a grocery store where the food could be from 1,000's of miles away and grown with dangerous chemicals. I also feel great that I can provide the same food for my customers that don't get the same opportunity to grow their own food.”



To purchase from Misty Valley Farm contact Ryan at
319-476-3781 or
rybasye@yahoo.com

Thursday, July 11, 2013

28. My EDS Journey: Amber Lenius' Story

My EDS Journey

I got to my appointment 25 minutes early.  It'd been scheduled six months prior and I had driven 3 hours to get there.

I was too nervous to go in, so I rode the elevators. Eventually I meandered into the clinic. It was huge, holding offices for all the pediatric geneticists and their varied academic specialties. I sat in front of a giant fish tank and waited.

The office was busy. Loud. Filled with so many families. I wondered how many of them were facing life-changing news too. I wondered if they were scared. I wondered how it would feel to be sitting here with one of my kids. I wondered if I would ever have to. (Please, please no)

"Amber?" a pretty, blonde nurse called me over. Six months pregnant with a freshly broken tailbone, I waddled after her. Pulse 134, BP 150/95. She checked twice just to make sure. "Are you nervous?" "Yeah, kinda". (Get me out of here)

Dr. Trapane and her nurse, Anne, came in soon. They were so nice, so professional, I knew I came to the right place. We talked about my history. All of it. My entire family's history. All of it. She felt my hands and took my Beighton Score. Velvety soft and 9/9. She asked about my pain, my injuries. I told her how I can't go upstairs and my hips pop out of place. And my knees. And my ankles. And all of my fingers. And my jaw. And my shoulders. She looked at my flat feet and I told her about my plantar fasciitis. She listened to my heart murmur and I told her about my blood pressure and heart rate issues. She looked at my eyes and I mentioned how I can't even read my own t-shirt without glasses on.

 She looked in my eyes and I told her how no one knew what was wrong with me. How I'd been tested for everything from Lyme disease to multiple sclerosis and it all came back negative. I told her I was scared that I'd die and no one would know why. She told me she knew exactly what was wrong. That it was Hypermobility Ehlers Danlos Syndrome, that I wasn't crazy, that I wouldn't die. She told me there was no cure, but there were things they could do to help me. Anne gave me piles of papers and talked to me for almost an hour, answered my questions.

When I got to my car, I couldn't stop crying. I'd been sick for so long and finally here was an answer. It wasn't a very happy answer, but it was an answer. (I'm infected by your genetics.)

It's been almost a year and I'm still struggling with reality. I hate my crutch, I hate my wheelchair, I hate my pile of supplements, my braces, my orthotics. I hate the uncertainty and the way I can't plan anything anymore, but must plan everything. I hate EDS with every genetically-flawed fiber of my being, but I love my life regardless. My kids are healthy. My partner thinks my crutch is a good weapon and jokes about learning crutch-fu. They all love me even when my body aches in a way that makes labor seem desirable. At least that pain has a purpose. Maybe this pain does too. Maybe it's meant to teach me not to take the little things for granted.

And so I won't. Each day is beautiful in its own way and I'm grateful to have been given so many of them. EDS has shown me how to live in the moment and I'm so grateful for that. Having a chronic illness is difficult, but I won’t let it define my life. I > EDS.

(Photo (c) Amber Lenius. No use without permission)


Tuesday, July 9, 2013

27. Keri Brecht Photography

Keri Brecht is a photographer who has been interested in her art for as long as she can remember. “I don't think there's an actual point at which I ‘began’ photography...for as long as I can remember, I've always viewed the world through a critical and artistic lens, so to speak,” she told me in a personal interview.


(Keri Brecht and one of her cameras)

Keri’s photography blows me away. I love her sense of balance and color. Her talents rest in her innate sense of perspective. She states, “Photography is one of many methods we use to share the beauties of the world. It tells stories and depicts people, places, and situations that the majority of the world might not ever experience, except through some photographer's lens. It is that means of self-expression and storytelling that fuels my passion for photography.”



Keri finds her inspiration in life itself, from the “smallest grain of sand” she says, “to the beautiful, colorful wares of a Guatemalan artisan. When viewed from a unique, appreciative viewpoint, anything can make a powerful photographic statement” She currently lives in Guatemala where she works as a nanny but was raised in Iowa and calls it home.


(Photo of a hot air balloon ride)

She values the story behind every photograph as well as its aesthetic value. Keri told me that she believes in “in the beauty of natural light, and of minimally edited photos. It's not how pretty a picture is, it is the story it tells that is most important and profound. Someday I hope to become a photo journalist or foreign correspondent so that I may use my passion to bring beauty, culture, and information to the world.”



“Right now, I am working on my personal mission to explore and share the many places and stories around the world. Currently, I am in Guatemala, working as a nanny. I continue to share my experiences here through my photography, just as I did back home in Iowa. I am writing about my travels as well in my blog: http://keri-around-the-world.tumblr.com/.”



She hopes to continue to travel in the future and take beautiful photos along the way. As she explained to me, “In a few years' time, I hope to have moved on to another international locale, from which I can continue to use my photography to explore and investigate that place's culture, sites, and secrets.”



She is also available to do photos and freelance work for anyone interested. ”I am currently working on self-inspired, freelance projects. However, I also do family, baby, and senior photos upon request. If you would like to contact me regarding any freelance writing, photography, or portrait projects, you can reach me at keri.brecht@gmail.com, or through my facebook page, Keri Brecht Photography.”



Keri is an inspiration to me as a photographer and as a person, in general. Her vibrant smile, energy and passion for the arts reminds me of why I do what I do!

To contact Keri, see below.
http://www.keri-around-the-world.tumblr.com
http://keriaroundtheworld.blogspot.com/
Facebook: Keri Brecht Photography

Saturday, July 6, 2013

26. d'Artagnan's Corner: Freedom from Self-Judgement

Freedom from  Self-Judgement
This Independence Day I tried to think about what I am learning to have freedom from this year. I've talked to several people about the topic and everyone has such interesting answers! The freedom I am learning to experience is freedom from self-judgement and criticism. I'm learning a new level of self-love and self-acceptance since my EDS diagnosis. The diagnosis has been a blessing in that way, I suppose.

Here's an example: I generally get irritated when I sleep late into the morning, even on my days off. This morning I overslept. I slept until 11am! Typically, I would be rife with self judgement and remonstrating myself for being so "lazy," "sick," "un-motivated" and "immature." How I came to associate those words and feelings with oversleeping is fuel for a separate post entirely. Today, after oversleeping, I took a step back from the judgement and thought to myself: what is the harm in sleeping late, really? Why have I labeled this so negatively? Who gets to determine how late I sleep on a day off? The answers were empowering. My body needs the rest. No harm comes from sleeping in an a day off. The labels come from outside perspectives that should have no bearing on how I live my best life. Only I get to determine how I spend my time and what I do to care for myself. Then I realized it was FUN to sleep late, and FUN to have crazy dreams into the morning and I don't have to feel bad or apologize for that. Progress made in baby steps.

Tummy Trouble! 
This week started out normally health-wise but Monday night I ended up sick which started a new leg in my EDS journey. Monday after dinner, it felt like my stomach was just not digesting. Food was just sitting there, hanging out, not doing what it was supposed to be doing. Bothered by these deviant tenants, my system decided to give the food an eviction notice and I ended up sick Monday night.

I didn't have a fever or any other symptoms; my tummy just did not want to digest any food. So, I went to my online EDS groups for advice. As of now, the signs are pointing to gastroparesis, but I can't say that for sure. The symptoms fit, but I'm not a doctor, so I don't for sure know what is going on with my system.

What I do know is that what seems to work in getting my digestive system back in balance is eating teeny meals of semi-solid foods: mashed potatoes, cottage cheese, yogurt, applesauce, mashed bananas, etc. Doing this was helping with my tummy problems, but I was getting so, so, so tired from being malnourished. My online EDS friends suggested I supplement with Ensure shakes. Once I started doing that, the fatigue went back to normal levels.

I've been doing this since Tuesday and I think my system is slowly getting back into balance. I had my first solid meal last night at a restaurant with my Boo. I was able to digest it, but still had that overly full, slightly nauseous feeling this morning. So, I'm doing Ensure today until I'm able to eat solid food again. I feel good about it even though I'm not totally back to my normal status. Progress is progress and even the smallest baby step is worth being thankful for.

Other Miscellany
This week my strawberry plant produced some of the first strawberries of this growing season!



I had to switch to container gardens this year. I tried to maintain a plot in a community garden last year but it was too much. So I compromised this year and planted a garden in containers on my deck. Here are my pretties.



My new-to-me car is registered, insured and drivable! Here's a photo of the car, the latest member of my family. Her name is Champ.



I had a good 4th of July. Because of my tummy trouble, I took it pretty easy. I took the dog for a walk around my neighborhood which was very quiet. The fireworks aren't happening until tonight (Saturday) so there wasn't much going on around town, even on the 4th. I topped off the day nerding out with a Harry Potter movie marathon. How was your holiday?

d'Artagnan

Thursday, July 4, 2013

25. Film Recommendations from June 2013

Hello Fremily,
I still 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. Men in Black 3



I saw this movie in the theaters last year and it cracked me up. I watched it again on DVD recently and it still cracked me up. That's a sign of a good flick to me because I am a tough crowd--it takes a lot to make me laugh!

2. Flushed Away



I love this animated film. I seem to watch every time I'm feeling under the weather. 

What movies would you recommend that you have seen lately? 

d'Artagnan

Tuesday, July 2, 2013

24. On the Bookshelf June 2013

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


1. Insomnia by Stephen King. A friend of mine recommended this book because I'm not well read in King's body of work. You can read my review here.



2. The Crush by Sandra Brown. This is the first in my stack of "beach trash/beach reads" (for a definition of the previous term, read my review!). I purchased this giant stack of beach reads to widen my reading horizons and to be less of book snob, to put it bluntly. You can read my review here.


3. Women, Food and God by Geneen Roth. I read this book because a friend highly recommended it. You can read my review here.




What have you been reading lately?

d'Artagnan

Monday, July 1, 2013

23. Shameless Self-Promotion June 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)
12. EDS Awareness Month Part 3
13. On the Bookshelf May 2013
14. Film Recommendations from May 2013
15. Shameless Self Promotion May 2013
16. Kristy Cutsforth
17. Topped Doughnuts
18. My EDS Journey: Dianne Connelly's Story
19. My EDS Journey: Yours Truly
20. Douglas Spotted Eagle 
21. My EDS Journey: Russel David Lewis
22. d'Artagnan's Corner: An Overview

The Latest on  Studio d'Artagnan (with links to the posts)
11. Teddy 1 Year
12. My and Madasyn Plus Mommy

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