Ehlers-Danlos Syndrome Awareness Month

 Photo by the fabulous Krista @ Hove Photography! 

Photo by the fabulous Krista @ Hove Photography! 

Getting Used to a New Normal...

I'm late to the game this year. May is Ehlers-Danlos Syndrome Awareness Month, and even though it's my first year with an official diagnosis, I've found myself without much time to sit down and think about what I wanted to write to help bring awareness to this rare (or at least rarely diagnosed) genetic condition. 

First, let me start by saying that, broadly, Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders that impacts skin, joints, blood vessel walls, the digestive system, and basically most every other part of the body as well. The defining characteristic of all types of Ehlers-Danlos Syndrome is a genetic defect in how our bodies produce and repair collagen. Which, before knowing what I know now, wouldn't have sounded like that big of a deal really. And I would have been very wrong. 

Collagen is found everywhere in the body, and therefore, nearly every system of the body is impacted in some way. And because of the wide variety of systems that are impacted, no two people with EDS have exactly the same symptoms, making the syndrome incredibly hard to diagnose. The average amount of time for a person to be diagnosed with EDS from the time they first begin discussing the seemingly unrelated symptoms with their doctor(s) is twelve years. Let me repeat; TWELVE YEARS. I've been lucky in that way. While I've had many (many!) years of odd and uncomfortable symptoms, from the time my health started to nosedive a little more drastically to the time I was diagnosed was less than a year. So in that respect, I feel very fortunate. I certainly went through many years though where I was essentially told that there was nothing wrong with me, or that perhaps I was just tired because I was a mom (*insert giant eye roll cuz overt sexism*). Having a diagnosis now at least allows me to plan, as best I can. 

There are currently 13 known sub-types of EDS. I have been diagnosed with the most common sub-type; EDS Hypermobility type (or hEDS). Common symptoms of this particular sub-type of EDS include extreme joint hypermobility (and here I thought being flexible was a good thing), chronic joint pain, chronic fatigue, frequent dislocations and partial dislocations, easy scarring, easy skin tearing, poor wound healing, digestive issues (I'll leave that broad, but it's rough), and a whole host of other things, including comorbidities such as Mast Cell Activation Syndrome and Postural Orthostatic Tachychardia Syndrome (which is super fun, let me tell you). 

Now for the bad news. This is a genetic condition. There is no cure (no seriously). Taking collagen supplements won't help because my body produces faulty collagen. Eating a different diet might be good for me, but it won't cure EDS. Exercising, in some cases, can be downright harmful, so I have to be very careful how I get my physical activity, and really listen to my body. More bad news... This is a degenerative condition. While no two individuals with EDS have the same journey, it's not being negative or overly pessimistic to say that, over time, my health will continue to get worse. My best hope is to use the best practices currently available (physical therapy, occupational therapy, regular massage, regular low to no impact exercise, knowing my limitations with physical activity, etc.) to slow the decline as much as possible, and do what I can to maintain as good of a quality of life as I can, for as long as I can. I'm really working hard on it (which in and of itself is exhausting). 

I don't say any of this to get sympathy, and DEFINITELY don't mistake this for an invitation to give me suggestions on what herbs I should be taking (my treatment plan is something my doctors and I work hard on together, and I'm not inviting anyone else to the party), but I want to spread the word about this rare and often misunderstood condition, because the more I learn about EDS, the more I think it's not quite as rare as it seems, and it could be just that it's rarely diagnosed. Awareness is key to more research, and better outcomes for those of us living with EDS. 

If you'd like to learn more about EDS, here are some excellent resources: 

  • Hands-down, THE best explanation of EDS I've found that's in plain language. This is something I've sent family and friends to help them get a better understanding of what EDS is and the impact that it has: https://slingsandarrowsofoutrageousfortune.wordpress.com/eds101/
  • The Ehlers-Danlos Society, which provides a wealth of resources for both patients and their doctors and other providers: https://www.ehlers-danlos.com/awareness-2018/
  • The Facebook support group. Which I know sounds weird, but let me tell you, there are SOOOOO many weird things that happen to your body when you have EDS that it can be immensely helpful to talk with folks who really get what you're going through: https://www.facebook.com/groups/152615741473177/

If this is something you too are living with, just know that there are people out there going through the same thing. Find those people, because we help each other get through the really tough days. If a loved one of yours has EDS, do everything you can to educate yourself about this condition, so that you can be a loving support for them, and make sure you have someone to talk with as well!

And lastly, if you've made it to the end, thank you. This is a tough journey to be on, and the more awareness we can raise, the better. Please share, and get the word out, both in Ehlers-Danlos Syndrome Awareness Month, and any month of the year. 

--Sam 

The Rad Photographers Retreat 2018

 
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My second year attending the rad retreat

After attending the 2017 Rad Retreat, I COULD NOT WAIT to go back in 2018, and I couldn't have been happier I did! First, let's talk details... 

WHAT IS THE RAD PHOTOGRAPHERS RETREAT? 

The Rad Photographers Retreat is a ladies only retreat for super kickass photographers, organized by the lovely Christine Dopp from Natural Intuition Photography. Christine, along with some rad co-conspirators, puts together a retreat (now 3 years running) that includes opportunities to connect and relax with other creatives, guest speakers and mentors from the photography (and related) industries, morning yoga, chair massages, professional hair & makeup (which this year we used for some fun bathtub boudoir photos!), a personal chef cooking us A-M-A-Z-I-N-G meals every day, and to top it all off, the most gorgeous styled shoot anyone ever did see! Plus a comfort package giveaway, some bubbly (or a Montana Mule or two), and the best company a girl could ask for! 

So how was attending the rad retreat for the second year in a row? 

Before I dive in, if you'd like to check out my post on last year's retreat, here it is! 

Okay, so last year when I attended the retreat for the first time, I was in a place of deep, DEEP stress and a crippling lack of self-care. I was working myself to death (nearly literally), wasn't appropriately balancing my time with family, and was honestly pretty freaking depressed (can't imagine why). I really credit last year's retreat with helping to snap me out of that pattern of behavior, and for being the first step towards taking better care of myself emotionally, scheduling in valuable rest time, and for making it abundantly clear how much I need a community of creative women in my life. Nothing wrong with dudes, I'm pretty fond of them in fact, but I firmly believe that no one lifts women up like other women or makes you feel sane and supported like other women. 

I was in a much different (better!) place for this year's retreat, and it worked out well that there were so many lady photographers there who are also moms, and many who also have full-time jobs, because it really felt great to be with a group of people who just GET IT. Like really get it. They get the struggle to balance conflicting priorities. They get the desire to continue to show commitment to your full-time job (if you have one) and the desire to continue to be World's Best Mom (even though none of us really can be). And it was also lovely to get the perspective of so many photographers who are doing photography full-time, and to have that reminder that every full-time job, whether you work for yourself or someone else, comes with unique challenges and opportunities, and that even being a full-time photographer does not suddenly make working for a living this magical, easy thing to do. (Capitalism, man... The struggle is real.)

It was also really awesome to see the contrast between last year and this year. For one, I was in a much different mental space between the two years, but for two, the group dynamics were different, in ways that just made me so appreciative of both groups of ladies! The first year, I felt like the group opened up to each other pretty much immediately. We cracked jokes, we laughed until we cried, we legit actually cried (whew, some of those 'face your fears' Q&A sessions are TOUGH you guys, but in the best of ways) and we played Cards Against Humanity until midnight on our last night. Now, this year, it took the group a little longer to open up, we were all feeling pretty shy to begin with, but as we got to know each other, there were so many opportunities for truly deep connection, reflection, and conversation. The group dynamic was a little quieter this year, but I felt like we really connected, and the trust and camaraderie that was established over just a few days was so amazing! Our last day there, after we finished headshots, we even ended up doing boudoir bathtub photo shoots for each other (because when there is a bathtub that amazing, you MUST find a good photo op - oh, and I'll be posting most of those photos in a separate blog post, since I'm having a hard time narrowing down my favorites!) 

The most amazing thing about both years is the open sharing of ideas, techniques, and best practices between everyone, and how that helps each attendee learn, grow, and evolve in their business, and with their passion for photography (which you really see come to life during the styled shoot, which I will post in more detail in a separate blog entry!). That and all of the time for self-care, reflection, and joy that is hard to come by back in the 'real world'. 

I am so thankful to have been able to attend this awesome retreat two years running, and am really looking forward to returning next year!  

WHAT freaking awesome PEOPLE WERE INVOLVED IN making THE RAD RETREAT 2018 so MAGICal? 

OMG, so many! 

First, hats off to Christine Dopp, of Natural Intuition Photography, for birthing this idea and bringing it into being 3 years running! She did such an amazing job on this! 

Second, here is a list of the vendors involved that all pitched in to rock this retreat like no one's business! 

Guest Speakers: 

  • Laura from Laura Zastrow Photography discussed the client experience, as well as finding the light in any situation and off-camera flash techniques 
  • Ren from Studio 29 Photography discussed Instagram strategy and getting published 
  • Angela Scheffer-Mondloch from Saffron Avenue Design discussed brand style, defining your brand style, and how to keep your style on-brand to attract your ideal clients 
  • Ashley from Midwestern Bride discussed planning styled shoots, and what collaborating vendors look for when working with a photographer on a styled shoot, as well as how to approach vendors to collaborate

Breakfast & Lunch: 

Dinners: 

Styled Shoot: 

Goodie Boxes: 

AND IT WOULDN'T BE A BLOG POST WITHOUT SHARING SOME PICS... 

So here you are; Enjoy! And if you're a lady photographer, definitely go to this retreat next year!  

--Sam 

 

A Trip to Portland, OR

 
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An excellent choice for my first full week vacation in more than six years...

Seriously, SIX years since I last took a full week off. I'd ask what's wrong with me, but I already know the answer, I'm a bit of a workaholic. <insert shocked face emoji here>

But... Nonetheless, I could not be more thrilled with our choice of city for my first vacation longer than a weekend in forever! We went to Portland, OR and stayed in the most amazingly gorgeous AirBnB (thanks Mike + Felicity!) We walked around downtown, went to Powell's and browsed the books, checked out the Portland Art Museum (who had an AWESOME Laika exhibit on claymation!), and visited the Planetarium at OMSI! 

We also had plenty of time for relaxing and reading and drawing, which was pretty freakin' sweet. 

Also, So. Much. Food. 

Enjoy the photos! 

--Sam 

 

Winter Mix Tape: 2017-2018 Edition

 
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A little mix to get you through the winter...

  1. Guided by Voices: Things I will Keep
  2. Rogue Wave: Bird on a Wire
  3. Joni Mitchell: Come in From the Cold
  4. Jagwar Ma: Uncertainty
  5. Stereo MC's: Connected
  6. Wolf Parade: Shine a Light
  7. Laura Veirs: Secret Someones
  8. Iron & Wine: Cinder and Smoke
  9. Sea Wolf: Whirlpool
  10. Broken Social Scene: Anthems for a Seventeen Year Old Girl
  11. OK Go: I Want You So Bad I Can't Breathe
  12. Say Hi: November Was White, December Was Grey
  13. Lord Huron: Meet Me in the Woods
  14. The Black Keys: Everlasting Light
  15. Wintersleep: Laser Beams
  16. Pete Yorn: Strange Condition
  17. The National: Anyone's Ghost
  18. Fleet Foxes: White Winter Hymnal
  19. Nada Surf: Icebox

Play Time: 1 hour, 17 minutes 

 

Stranger Things and Childhood Memories

 
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Working out the puzzle of creating lasting childhood memories 

As a mom who not only runs a small business, but also has a full time (okay, more than full time) day job, it can be an uphill battle to make sure I'm spending enough quality time with Ben. Not just movies and meals (though those things are fun and important too), but really creating some good childhood memories for him. 

I was talking with my Dad about this the other day, and it seems to me that the childhood memories that really stand out for me, the good ones anyway, are the things that were out of the ordinary. The strange but harmless situations in childhood that seemed so special that they've always held a place in my heart and in my mind. 

Like the times my Mom and I drove cross-country to the Teton mountains each summer for a retreat and stopped at every roadside attraction along the way. Or the time my Dad and Stepmom decided on a whim to take my Stepbrother and I for a walk to the park, at midnight, in the rain, in downtown Dayton, OH, and let us play in the mud and on the park for 30 minutes or so and then walked us back home. Or holding a 'seance' with pre-teen friends at a sleepover with a ouija board  and some candles after watching 'Hello Mary Lou: Prom Night II', a most ridiculous horror movie. Or the time Dad spent a spring break with me in my senior year driving around to different historical sites and museums in Ohio and reading (re-reading for him) and comparing notes on The Frontiersman. 

Sure, you remember the really bad stuff, and the normal nice stuff is there too (like hugs and lunches and such), but some of my absolutely favorite childhood memories are special things like that, and I want to give Ben those types of memories too, so this past Saturday, on a whim, I took him to House on the Rock (which was also my first time visiting even though I've lived in Madison 11 years now). I took him to a special place for lunch, and then we went and explored the House on the Rock attraction (the whole 9 yards, all of the exhibits, the gardens, etc.) It was weird as hell. If you haven't been there, and you live in Wisconsin, you should check it out, if for no other reason than to experience the weirdness.

Strange things make for strong memories, and I think Ben is going to remember touring this weird place with me when he's older. Maybe he'll think of it fondly, the way I think of visiting weird or unique places with my parents. I hope I can help him create some lasting memories, the kind you speak of with happiness (and not in a therapy session, though I'm sure he'll have some of those too because being a parent doesn't come with a manual and we're all screwing it up sometimes). 

What sorts of memories do you really want to make with your kids? Are there any special locations or experiences you really want them to have? Books you really want them to read? Music you'd love for them to listen to? Go out and make it happen, one experience at a time, and I'm going to try and do the same. 

--Sam 

 

 

I'm So Tired...

 
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...I haven't slept a wink

I used to listen to the Beatles' song "I'm so tired" on repeat when I was up with Ben (3-7 times a night) for the first two years of his life. It was oddly comforting. 

I go through periods in my life where I experience fairly extreme fatigue. In fact, I don't think I've felt "well-rested" since before Y2K. Now is one of those periods. I've been so exhausted lately, it's hard to keep my eyes open even while I'm walking, and it takes real effort not to fall asleep in the middle of conversations. Hence why I missed a blog post last week, and have been MIA on Instagram.

Being this tired has me musing about how it can be so easy, particularly on Social Media, to pretend like life is really glamorous, and that we're all really successful and happy and awesome all of the time. Well, I just want to be honest with you all and say that, just like every other human on the planet, life is not always easy or glamorous in my experience. It's hard, messy, complicated, weird, beautiful, fierce, and delicate, all at once, and I don't always feel successful or happy even. It's a white-flag-waving kind of week (or month or whatever), the kind that makes you say "Enough! Enough!" and maybe cry a little (and maybe eat too much chocolate, I dunno, you do you), and so it's time to just be real. 

So, with that in mind, here I am. Life is not glamorous or easy, and I'm not feeling particularly successful right in this moment. I'm breaking out, I'm exhausted, my health is not amazing at the present time, and I feel vulnerable and on edge. 

Life isn't a perfect 280 characters on Twitter, it's not an amazingly curated snapshot on Instagram, it's not a well-liked post on Facebook; It just is what it is, and the best thing, I think, we can do for one another, besides the basics like being kind, not murdering people, and disavowing racists and nazis, is to be honest when things are hard instead of always feeling the need to pretend they're perfect. They're not perfect. I'm letting you off the hook, blog readers. My life isn't perfect, yours isn't either, and it's totally okay to be honest about that.  

Go forth, my friends, and let someone else off the hook today by being real, and imperfect. I bet they need it. 

--Sam