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 

Sharayu + Ajinkya: A Stylish Pre-Wedding Session in Madison WI

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With the wedding in India just a month away...

Ajinkya + Sharayu are working hard on wedding and travel planning, but wanted to make sure to have some pre-wedding photos taken in Ajinkya's adopted city of Madison before the big day! 

We met on Willy Street by Machinery Row bikes (isn't that an awesome building?!) and walked around the area taking photos by the lake, by some of the neat old buildings, and in front of some gorgeous blossoming trees! Sharayu + Ajinkya were great sports about playing games and having fun while taking photos, and also about making sure I didn't get hit by any cars or bicycles in the busy Willy Street area while we were photographing! Once we were done there, we headed down to the Capital for some photos, just as the sun was getting low. These two were a blast to photograph, and so sweet! I'm so excited for them as they make the final preparations for their journey to India and for their wedding ceremony there! 

Good luck you two! 

--Sam 

 

 
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Benji's Newborn Portraits

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Welcome to Earth, little Benji! We're glad to have you! 

The first thing I noticed about Benji (how flipping adorable is that name?!) is that he loves looking around and taking it all in. He was fascinated by what was happening outside the living room window in his house as we were taking photos. This little guy was so well-behaved and just the sweetest, though since his parents were as sweet as can be, despite the lack of sleep common to all new parents, this comes as no surprise! 

I don't often get to photograph newborns, but I always love how even at such a young age, you can see personality and wonder in the world around these little ones! 

So with that said, welcome to the world, kiddo! I think you're going to like it! 

--Sam 

 
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Erin + Eric: An Intimate Backyard Wedding

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diy Lavender accents, a handmade dress, and some super tasty vegan pizza and cupcakes made this wedding all the more magical

Erin was working in IT at a hospital out in New York when she first met Eric. He was assigned as the Epic support for her hospital. They were long-distance friends for years, until 2016, when they both made their feelings known, and began dating long-distance, and eventually, Erin (and her 2 pups) made the move to Madison! Then, on a romantic weekend getaway in fall of 2017, Eric proposed (Erin obviously said YES) and the wedding planning started! 

For their wedding day, they wanted a small and intimate backyard wedding at their house, with their closest friends and family (and their beloved dog Daisy) celebrating with them! And they wanted their first look to be at the Epic campus in Verona, given how instrumental Epic was in their life together! Then they wanted to eat pizza, drink tasty drinks, and eat cupcakes, and I'd say they knocked all of those goals out of the park! 

It was so awesome to celebrate with Erin + Eric! You could tell when they recited their self-written vows just how much they mean to each other, and how happy they are to be 'officially' starting their life together as a married couple. Also, I LOVE that they had pizza at their wedding, cuz let's be real, who doesn't like pizza? 

Congrats to Erin + Eric, and thanks for letting me celebrate with you! 

--Sam

Here are all the amazing vendors (with links)that helped make their day magical! 

Ceremony & Reception Venue: Their house! 

Officiant: Mark Stuart (Family Friend) 

Wedding Dress: Custom Made Gown by Kate McKay (Bride's BFF)

Wedding Suit: Macy's

Bride's Jewelry : Custom Made by Kate McKay (Bride's BFF)

Groom's Wedding Band: Boone Rings (Etsy)

Bride's Engagement Ring: Raven Fine Jewelry (Etsy)

Bride's Wedding Band: Chalmers Jewelers

Hair & Makeup: Abby Paljieg (Groom's Sister)

Cupcakes: Bloom Bake Shop

Pizza: Roman Candle

 
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Jen + Mike: A Laid-Back Wisconsin Wedding

 
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What do you call a wedding with donuts, confetti, and piñatas?  

Fucking awesome. 

Jen + Mike met on Match.com, and she noticed right away that he was from Michigan, so the joke now is that neither of them was sure if their first few dates were actually dates, or just Michigan Tech alumni meetings! They admit they've come a long way from him thinking she was 'too fancy' to go ice-fishing, and her thinking he'd never be willing to don roller skates (did I mention she skates for the Quad Squad in the local women's flat track roller derby league, the Mad Rollin' Dolls?) 

When it came to planning the wedding, they wanted a laid-back vibe, great food and drinks, and to celebrate with friends, family, and donuts! I'm pretty sure they checked all the boxes! Their dessert food was, of course, donuts, and not just any donuts, but sprinkle donuts, which are my very favorite kind! Jen even had a donut dress she changed into at the reception! Mike's two girls were very involved in the wedding as well, as flower girls, and as an important part of the ceremony, since Jen + Mike were not only joining together as wife and husband, but as a whole family unit. 

Not only were there donuts (can you tell how excited I was?!) but they also had an amazing fajita bar, biodegradable confetti, and piñatas! There was a piñata for the kids filled with candy, and then a piñata for the adults filled with mini bottles of booze! Both went over very well, as you can imagine. ;) Jen was hilarious, walking around with piles of confetti in her dress pockets, and randomly throwing it up in the air to punctuate points in conversations. At one point, Jen + Mike went out for some golden hour pics with Rob and I, and we got the kids to stand around them and throw SO MUCH CONFETTI at them while we took photos. It was amazing! 

Jen + Mike threw a wedding that was fun, colorful, and all them! Congrats to this happy couple and newly formed family! 

--Sam 

Here are the vendors (with links) that helped make their day awesome! 

Ceremony & Reception Venue: Lussier Family Heritage Center

Officiant: Wendy Wilbur (Allie Gator from the Quad Squad) 

Wedding DJ: DJ Milbot (Hammer Abby from the Quad Squad) 

Wedding Coordinator: Shan Sontag (Shantastic McAwesome from the Vaudeville Vixens) 

Hair & Makeup: Brideheads

Donuts: Greenbush Bakery 

Catering: Upstairs Downstairs Catering

 

 

Andrea + Phil: A 10 Year Anniversary Session

 
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Andrea + Phil had a delightful mix of fancy af and punk rock elements for their 10 year anniversary session 

When Andrea contacted me about photographing her 10 year wedding anniversary with Phil, she was clearly a woman with a plan. She wanted a dress that was reminiscent of the wedding dress she wore on 4/19/2008, when she and Phil were married, she wanted Phil in a grey suit, she wanted to hit up special places near the Capitol building and near the Memorial Union Terrace, and she wanted to cap off the celebration with champagne and cupcakes! Needless to say, I was on board immediately

Not finding exactly what she was looking for in the dress department, she ended up making not only her dress (which was really a satin thigh-length, corset-backed sheath dress with a removable tulle skirt) but also the cute faux-fur wrap pictured below, because she is basically a wizard. She came fully prepared too, with a rolling suitcase of goodies, including champagne & cupcakes, toasting glasses, and extra shoes for when the heels got to be too much, plus a little sewing emergency kit for quick fixes on the go. 

We got extremely lucky with weather, and to be honest, given that Thursday morning I was literally shoveling my driveway just to be able to get my car out, I did not think that it was going to be very pleasant out, but it ended up in the upper 40's by the time our session started, and all was well! 

Phil + Andrea were so fun to work with (we are so blessed to work with such amazing couples!) and it was really cool to see how excited they were to celebrate their 10 year anniversary. I wish more folks would get into the spirit like that! After we finished champagne and cupcakes at the Memorial Union Terrace, they dropped me back off at the parking garage, before heading off to dinner, and I will guarantee they were the best dressed couple in whatever restaurant they went to! 

Happiest of 10 year anniversaries to this awesome couple! 

--Sam