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A great friend I met through EDS Wisconsin asked me today if I’ve ever written about how it feels to never really “be able” to have an emergency. If you’re reading this and you don’t have EDS, you probably are wondering what we mean. For example, if we had a gaping head wound and were taken by ambulance to the local emergency room, of course we would be having an emergency—so how exactly can we say we are not “able” to have an emergency?

Here’s the thing about life with a condition like EDS. A normal day for us can often include symptoms severe enough, if we were healthy, someone from our family would probably put us in the backseat of a car surrounded by pillows and take us to the hospital for immediate attention. Just yesterday, as I was playing with my two dogs, who you both know I love as much as just about anything in the world, I dislocated a shoulder. I heard it before I felt it, because I have grown so accustomed to this particular joint moving. I went to my bathroom and moved my body around enough to put it as close to the right location as I could. I had already taken the dose of painkillers I was allowed to take for the afternoon with my NSAIDS, so aside from the bag of frozen mixed vegetables I grabbed from the freezer for some icing, there really was not anything else I was able to do.

They’re skeptical of photos before cake, but they’re still worth a rough game of fetch.

Here is what would have happened had I gone to the emergency room. First, I would have had to explain to every person who came into the room that I have EDS, usually spelling it out for them. Last time I was in the emergency room, the DOCTOR (yes, a physician, an MD), said to me, “You have Maylers-Danyos Syndrome? That’s a new one. I’ve never heard of that.” I was in tremendous pain from what turned out to be a severe kidney infection (which took two more trips to the ER to get diagnosed, but I digress), so I thought perhaps in a state of pain, I hadn’t annunciated well. I annunciated and spelled out, “E-H-L-E-R-S…” and so on. He still had no idea what I was talking about. Next, they would have taken an x-ray of my shoulder. By this point, I would have relocated it well enough for it not to show on the x-ray. Because they’ve never heard of EDS, they would tell me it is unlikely I even dislocated it in the first place. They would offer me a higher dose of ibuprofen (yes, no actual painkillers) and advise me I may have pulled some muscles in the area. Usually at this point they say something like, “If you have this rare condition, you are probably seeing a specialist, so if you have a problem, follow up with them.” It has usually been hours by now, because I was triaged long after the screaming baby and the people with conditions they have heard of. My husband has drained his phone battery from playing games and trying to entertain me through the pain. Then, we’ll get another bill from another trip to another doctor who didn’t help me.

The last time I was in the ER multiple times, it took a routine visit to my pain management specialist for him to realize how truly sick I was. By this point, my fever was maintaining at 103-104 for more than  three weeks, but I had been given oral antibiotics with no culture for a kidney infection on my second trip after being told on my first visit that my extreme abdominal pain was caused by an ovarian cyst (that had not burst) smaller than the width of a dime. I was no longer in my hometown and in a system more equipped to handle my condition, but I only felt safe, because he called the ER. He walked them through both of the conditions I have. Aside from EDS, I have a rare metabolic bone disorder called Hypophosphatasia that leaves me incredibly susceptible to infection due to poor creation of white blood cells. Without an appropriate culture of my infection, it was extremely unlikely the antibiotics would be effective. I typically get 10-15 bacterial infections each year requiring antibiotics. My doctor told me if I did not agree to go to the ER, he would call the ambulance to take me because I was tachycardic from this infection and fever. I required significant amounts of fluids from dehydration and IV antibiotics, in addition to beginning a course of oral antibiotics to follow up on the infection. Without those specific instructions from a physician, it is likely I would have had the same experience. I am blessed to be articulate and skilled at advocating for myself and yet, I still do not have the same experiences in emergency rooms and urgent care as those without my conditions, because doctors simply are unprepared to handle someone as complex as me.

This post is for every EDS patient who has ever had a severe injury and decided a trip to the ER would be a waste of time and money for no reason but the lack of understanding. This post is a reminder why so many of us are fighting to educate physicians about EDS. This is for the parents sitting next to their children in those emergency rooms who do not yet have a diagnosis who end up separated from their babies, so someone can ask if they feel safe at home. It is better now than it was when I was a child and I believe the work we are doing today will mean it will be even better when your children are adults. This doesn’t make it fair or easy, but it does make the effort worth it.

You are not alone. We are all in this together.

FOR IMMEDIATE RELEASE: 04/20/19

Angela Braun 

(715) 370-1736

2nd Annual Meagan’s HOPE Memorial Walk and Roll

Ehlers Danlos syndromes Awareness & Suicide Prevention

Wausau, WI: On Saturday, May 4, 2019 at 1 PM EDS Wisconsin, Inc. and the Braun Family are hosting the Second Annual Meagan’s HOPE Memorial Walk and Roll for Ehlers Danlos syndromes Awareness & Suicide Prevention at Weston’s Kennedy Park. In its first year 186 people came to this event from across the country. The family hopes to double that number this year. The public and media are encouraged to attend. Prior to the walk, speeches will be done by Tammy Kosbab of EDS Wisconsin, Dr. Linda S. Bluestein, M.D. of Wisconsin Integrative Pain Specialists, Licensed Professional Counselor Trena Loomans of The Caring Tree Children’s Counseling Center, and others. A special announcement will be made prior to the one mile walk and roll.

Ehlers Danlos syndromes (EDS) are a group of heritable connective tissue disorders that impact individuals of all ages & genders. Frequently misdiagnosed as Fibromyalgia, Chronic Fatigue Syndrome, or various psychosomatic illnesses, EDS affects nearly every body system since connective tissue is what holds the body together like glue. Many of those who have EDS experience daily pain, excessive fatigue, increased bleeding, and they have overly flexible joints which can lead to joint dislocations, as well as many other seemingly unrelated symptoms. Support and resources for medical professionals and patients affected by EDS remains limited. Sadly, EDS frequently goes undiagnosed for many years causing patients and medical professionals unnecessary suffering. Diagnosis is validating and empowering for patients, their loved ones and medical professionals! Early diagnosis enables proper treatment strategies, fewer unnecessary medical visits, and prevents injury.

Born December 12, 1987, Meagan Rae Braun was a kind, caring, loving individual with a most beautiful, gentle soul. She grew up in Medford, WI and then resided in Weston. Meagan was an outstanding mother of two young children who truly enjoyed helping others while continually seeking knowledge, truth, peace and harmony. Even so, behind her beautiful smile, Meagan suffered with multisystemic illnesses including EDS, hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hyperPOTS), allergies, sensitivities, and more. Frustrated with limited treatment options for her health, in addition to battling postpartum depression, Meagan lost all hope resulting in her death from suicide on April 24th, 2017. This annual event is held in honor of Meagan’s gracious spirit.

The mission of the not-for-profit organization EDS Wisconsin is to provide support and resources to Wisconsin patients and medical professionals about Ehlers-Danlos Syndromes and related conditions via education and research. Together with the Braun Family, this Walk is an opportunity to increase awareness, support, resources, and education for those affected by EDS and to prevent suicide. There will be t-shirts, lanyards, balloons and rock painting for participants.

This event is proudly supported and sponsored by Wisconsin Integrative Pain Specialists, The Caring Tree Children’s Counseling Center, Gray Law Firm, Chrysalis Massage & Consulting, Burkhardt Physical Therapy Center, Natalie Helen Photography, Black River Hemp Company, Evolve Counseling, Sport & Spine Physical Therapy, Tools of Marketing, and Mariah Liisa Design. We are fiscally sponsored by EDS Awareness aka Chronic Pain Partners.

Please join us at Weston’s Kennedy Park on Saturday, May 4, 2018. Registration begins at 11:30 am. Donations can be mailed to EDS Wisconsin, Inc. PO Box 485, Sun Prairie, WI 53590.

Sincerely, The Braun Family

 

 

THANK YOU TO THESE GENEROUS SPONSORS FOR BRINGING AWARENESS AND HOPE TO OUR COMMUNITY!

When you get diagnosed with strep throat, you don’t go home to the internet and hope and pray you can find someone else who has been through what you’ve been through. You don’t worry about explaining to your family why you’re different than others. You don’t hope your work understands why you might need some time off. Everyone knows what strep throat is. When someone tells you their doctor said they have it, you know they’re heading home with an antibiotic for their full 24-hour period away from others to keep from spreading germs. You let them know you can handle things at the office while they’re at home getting some extra rest, eating lots of popsicles, and waiting for the magic medicine to get rid of the tickle and the white spots in the back of your throat.

When you get diagnosed with Ehlers-Danlos Syndrome, though, people don’t nod and understand immediately. They wait for you to explain it to them, which can be frustrating when you aren’t even quite sure yourself what exactly the condition is or means for your future. Without fail, someone will ask you in those first few months, “is it fatal? Are you going to make it?” When you explain to them that the condition itself isn’t fatal and the few symptoms that can be usually can be prevented with proper diagnosis, they breathe a sigh of relief. They look at you and tell you something like, “Thank God it’s not cancer.”

I’m going to tell you something in this blog post I’ve told maybe five people on earth. There were moments in those first few months when I resented cancer patients. I resented them for having a disease people understood. I resented them for having a condition strangers would give money to research. I resented them for either going into remission or not making it when I knew I’d be struggling the rest of my life–a sort of chronic illness limbo where you never get better, but “hey, at least it’s not cancer.”

Let me also tell you something, THIS IS INSANE. Okay, but it’s also human. It’s human to wish other people could understand and have sympathy. It’s human to want people to feel an ounce of what you feel. It’s even human to become angry at other people for getting attention for their condition when you were almost screaming at your doctors for half your life before they finally believed something was wrong with you. You have to move past that. You have to be able to see the insanity and forgive yourself for those feelings. Tammy said at our event this weekend that self-forgiveness was an important step in being able to forgive others and she couldn’t be more right. If you can forgive yourself for resenting a cancer patient, you can forgive someone else for not understanding a condition whose name they heard the first time from your mouth only minutes before.

Here’s the other truth, though, you won’t really learn to live with this fully until you make room in your life for people living with it, too. Nobody else REALLY can get it and it isn’t fair for you to expect them to. I think of it this way, I work in an office. I work on a computer most of the day and with customers the other part of the day. If a carpenter asked me to empathize with him about his job, I couldn’t do it. I have no idea what it’s like to build a house. I can’t even begin to comprehend the nature of that profession–and it would be insane for him to think I could. I can talk to him. I can ask questions and do what I can to help him, but if he REALLY needs someone to help him through the hardest days in his job, he needs someone who has done it. He needs someone who DOES it. Having EDS isn’t all that different and it isn’t even that much more complicated.

Confession time: I SUCK at this. I get really angry a lot of the time at people for not understanding what’s happening to me. I can’t even tell you how often I’ve made snarky comments back at someone who has said something to me about using a handicap parking space when I’m “young and pretty and ‘fill in the blank with other not sick word’.” Now, I’m not saying people should do this to me, because they shouldn’t. I have a handicap placard from the state and parking in that space is my right. I need the space even more when I’m NOT using my cane or crutches because my body is working ten times harder without help–and I don’t need some judgmental person who doesn’t even know what EDS stands for telling me I’m not disabled enough to park there, BUT, I have an opportunity to prevent them from saying it to the next person. I have a chance to help another “young, pretty, whatever” disabled person not have to explain that she has a condition they haven’t heard of and walking hurts too much to park anywhere else. A few people mentioned this to me, so today, I worked on a small business card I can give people when this happens. I know I’m still going to be angry. I should be angry. It’s not right and it’s not fair. BUT, if I can be pleasant and simply hand them a card and tell them to have a nice day with a concise message on it explaining what EDS is and that not every disability looks like the symbol on the parking sign, I’ll probably leave that situation better than they do?

Now, when someone who didn’t understand said this to me, I got even angrier. This weekend, though, I was able to attend my first in-person support group with so many of the people I’ve met through this group. I know they’ve been there. I know they’ve seen doctors who didn’t see the condition. I know they’ve had people in their lives not understand. When one of them offered the suggestion, it seemed valid and reasonable because I knew they GOT it.

My EDS friends don’t replace my actual doctors. They can’t fix all my symptoms. They can take my call when I’m home from work and devastated because my body literally hurts so much I can’t sit at my own desk. They can tell me which doctor and where was the most help for them on a specific issue. They can laugh with me when I want to sit on the floor instead of a chair because my body likes it better–and when I say I want to sit there, they don’t ask ten more times. They can become my allies in a battle for answers and doctors and cures and empathy. They can become my refuge from the judgment of those who can never understand what it is to be in our situation–and help me not to judge them in return.

They will do that for you, too. I promise. If there is any ONE thing I have learned about EDS patients since my diagnosis, it is that their passion for helping others far exceeds any physical deficit they may have. Find them. Ask them. Make them your people. I promise you you’re not ACTUALLY alone no matter how much it feels that way.

Plus, some people who don’t have EDS will still love and support you no matter what–like my amazing office staff in their EDS shirts.

Together we are stronger!