News

Thank you for supporting EDS Wisconsin in whatever way you can–and there are many. Your support through monetary contributions, event attendance, social media presence, supporting patients through mentorship and listening, following our blog, and even just by having an awareness of our experience with EDS has allowed EDS Wisconsin to make an impact in 2018.

We wanted to let you know what EDS Wisconsin achieved as a result of YOUR generous contributions and unwavering support.

Of all the events that took place in 2018, we were most thrilled to hold the First Annual Meagan’s HOPE Memorial Walk for Suicide Prevention and EDS Awareness. This event had 186 participants and for an event in its first year, we could not believe we were so blessed to have this many people in attendance.

One of the most important tools and major hurdles for EDS patients is genetic testing. In 2018, we developed a relationship with Director Christina Zaleski and Dr. Juan Dong at PreventionGenetics. We were able to tour their state-of-the -art facility, and work with them to help make their new 45-gene panel available to more patients! Afterwards, we had the tools  to help patients get the testing they need.

We hosted over FORTY support groups for patients with EDS and related conditions throughout Wisconsin – in Wausau, Milwaukee, Madison, LaCrosse, and Appleton/Green Bay. These groups and the support they provide continue to grow and help individuals in need. EDS Wisconsin also provides online support group meetings for those who live outside these areas or struggle to leave their homes. We have also connected kids and teens by having TWO support groups for them, something we are thankful we will be able to continue thanks to the ongoing support and financial contributions of our volunteers, sponsors and donors! These support groups are so important as the  feedback we received showed an overwhelming majority felt they had ZERO support prior to attending our support group meetings. 

EDS Wisconsin  strives to provide education that address the specific needs of our community. Since our inception, we have hosted and/or participated in :

  • 5 Tips for Managing Persistent Pain with Dr Linda S Bluestein, MD
  • Managing Your Pain with Dr Linda S. Bluestein, MD
  • Conquering Appointment Anxiety for Medically Complex Patients
  • Frequently Asked Questions on Genetic Testing with PreventionGenetics
  • Trivia Challenge 2018
  • Assisted the Chicago Support Group with educating medical students at the University of Illinois – Chicago
  • “My Personal Experience with Mast Cell Activation Syndrome” (available on YouTube)
  • How to Make a Medical Binder with Backpack Health
  • How to Make May EDS Awareness Month (available on YouTube).

Both Meagan’s Walk and the 2019 Trivia Challenge are right around the corner. These incredible fundraising events Strengthen Connections within our community, while providing the valuable financial resources and support we need to keep this organization on track to achieve its vision of a better Wisconsin, where EDS and related conditions are better understood, treated, and supported!

Your contributions have made it possible for us to provide support group print materials and supplies, support group leader training, supplemental grants for 2 children and 3 adults to attend conferences related to pain and EDS, have provided food to a family where both parents had surgery within a week of each other – the second one was due to an accident. We helped one patient pay for medication when it would have otherwise been impossible, improving quality of life for a member of our EDS family.

Looking forward, we are developing a support group leader training and education program because we believe it is so important to have quality, support groups in as many areas as possible, and that our support group leaders also need to receive the support they need.

We have begun working on a program to provide education about EDS and related conditions to medical professionals. This program will be piloted in the Fox Valley area in honor of our fallen member Lisa Klatkiewicz. Find out more about this initiative at Meagan’s Walk 2019

We will continue to regularly feature blog posts by Stephanie Vander Pas who shares not only about EDS itself, but about her experiences and events that connect us all. Stephanie’s candid writing provides readers with an insight into what it is like to be living with EDS, at the same time her words build strong, human connections, even with those who do not have EDS. Thank you Stephanie for sharing our thoughts and feelings, and for being our voice.

We are so excited to be working with over 70 amazing, dedicated, passionate and motivated volunteers who take valuable time out of their lives to help progress the mission and vision of EDS Wisconsin! When you see or talk to one of our volunteers, make sure you tell them thank you. Many of our volunteers also live with EDS which makes volunteering especially challenging sometimes. As a result, EDS Wisconsin is implementing a Buddy System to ensure that our Volunteers get the support that they need.

We have an incredible amount of gratitude to the medical professionals who have learned about EDS themselves and are educating both patients and peers as we move toward a future with improved quality of life for EDS patients--or maybe even a cure. These medical professionals are incredible and we are so thankful to know and work with them.

The mission of EDS Wisconsin is to provide support, resources and education to both patients AND medical providers. Our generous supporters and volunteers make all of this possible. We firmly believe our work will continue to make all goals achievable and contribute to the overall improvement of living with EDS and related conditions in Wisconsin.

From the very bottom of our hearts, thank you for your support of all we do as we work to improve peoples lives daily.

Tammy, Stephanie, & The Entire EDS Wisconsin Team

As a kid you’re taught that you go to the doctor when you are sick and they will make you better. As I grew up I realized that rather than making me better, they were making me feel crazy. The horrible stomach aches, anxiety, severe aches and pains, exhaustion, the list goes on and on. It was all in my head and I thought I was actually losing my mind. As it turns out… I was a zebra. It started when I was about 3 years old. My parents went out and my brother was babysitting me. We were jumping on the couch and that’s when my elbow dislocated. It was the first time in a while that my mom had really gotten a night out to enjoy herself and here she gets a call that I need to go to the ER. They popped it back in and I got ice cream. Everything was fine. Little did I know, that was the start of everything. I had a pretty great childhood, my mom always went out of the way to make sure I was happy and doing what I loved. I was a baton twirler until about 6 or 7 and then I was a figure skater. I had a lot of great party tricks like doing the splits, contorting my body in every way imaginable, turning my hand completely around, dislocating my shoulders on purpose, and showing my “double jointed” hands off. I was a pretty healthy kid and the only thing I could really complain about was “growing pains”. I went to physical therapy for my knee a few times to help the pains. After a while figure skating became difficult and I started to complain about my hips. Around my pre-teen years, I got my diagnosis. It wasn’t official but after a handful of doctors misdiagnosing my hip pain and a failed exploratory hip surgery, a wonderful Rheumatologist brought up Marfan’s syndrome and Ehlers-Danlos Syndrome. Basically he said I was hypermobile and that I could hyper-extend and bend in ways that normal people can’t. I didn’t look into it much. I finally found a great doctor who found multiple tears in and around both of my hips. I’m sure figure skating did a number on them. I ended up having two more very extensive hip surgeries before my sophomore year of high school. I completely forgot that I was even diagnosed with anything and went about Junior and Senior year and on to college. That’s when it hit me. I kept it to myself for a while but I began noticing that I would tire out more than the average student. Of course I lived in the freshman Hall on the fourth floor but I just seemed to struggle getting up to that floor more than anyone I knew. I wasn’t athletic but I was in decent shape so it shouldn’t have wiped me out that much. I had a lot of problems with my feet for a while and that soon moved to my hands, my back, my knees, and then my hips again. I got through my first year of college and onto my second and I started thinking that it had something more to do with thyroid than anything. I left the university and took online classes so that I could work full time (in the back of my mind I knew that walking across campus was getting too much for me to handle as well). This is when the chronic illness hit me hard. I remember going to the doctor for my thyroid and even though my thyroid antibody numbers were outrageous there was nothing she could do at the moment. She said those numbers say that I could have a thyroid issue in the future but I don’t have an issue right now. It’s like a warning sign. That day I got a speeding ticket on the way to my doctor’s appointment and when I got home I bawled my eyes out because I just didn’t feel good. At that point I was probably sleeping a total of 12 hours a day between sleeping and naps. I slept because I was exhausted and I slept to escape the pain. My mom being the saint she is, was on the phone with me during this meltdown and brought up that diagnosis from a long time ago. Ehlers Danlos. We hung up and I began to research online. I will never ever forget that night. As I sat on the couch watching videos of people with Ehlers-Danlos and reading articles… For the first time, I felt like I was understood. I wasn’t alone. I wasn’t a hypochondriac. These were real things and valid things that were happening to me. It was terrifying but for the first time, I had a community. That was almost two years ago and since then my condition has rapidly progressed. I’m trying new medications and after many doctors denying me treatment due to its rare and understudied nature…and saying my condition wasn’t real, I finally found a doctor that understands EDS. I am slowly making progress but I did just get another setback. I went to another doctor’s appointment but this time he referred me to a hip preservation specialist. I had no idea what to expect but her specialty is avoiding surgery and preserving as long as possible. After some X-rays and what felt like forever to get an appointment, she might with me and said that I will probably need surgery again. To those of you who don’t know, the pre-surgery hip tests are almost as traumatic as the surgery itself. I decided I’d get the test over with now and then let myself process the surgery and wait about a year. That’s where I’m at now. What is life like? Well…Flare-ups are happening more and more. Now that I got my hip test results back and found out that I tore both of my labrums again… it’s like my hips heard the diagnosis and decided to cause even more pain. It’s a never-ending cycle. My ribs dislocated a few times in the past year and my shoulder has dislocated twice within the last 60 days. When I go to the grocery store I get anxiety about having to park far away because I know my energy is going to be spent before I even get to the produce section. I used to love going shopping for clothes and now I know when I try on jeans or shirts something is going to pop. I love going out to eat but after work I’m exhausted and all I want to do is lay on the couch and fall asleep. On the inside my body is on fire and my joints are filled with boiling water. On the outside I am a working professional, meeting with clients and hiding behind a smile. That’s my EDS. When I go to bed at night, I try to focus on where the pain is and if it’s any different than during the day. I try to think if that pain point popped at any point during the day and if it may be subluxed or bruised. When I wake up in the morning I take a deep breath and from the toes up, do a quick assessment. Is anything dislocated or feeling out of place? Did I wake up with a flare up? How should I get out of bed to make this as painless as possible? Is my shoulder unstable…because if I push myself up on my shoulder then it’s going to try to dislocate. If I wake up feeling good I tend to overdo it. Because my condition has progressed quickly, I’m not able to predict when my flare-ups happen as well as I should be able to. I could be feeling fine and then all of a sudden I need to sit down because I’m dizzy and my body is on fire. I could be fine and then reach for a pen and then my shoulder dislocates. This condition makes you feel isolated because on the outside, you look like a completely normal functioning human being. It’s hard for people to understand that you can go from not being able to get out of bed one day and then being able to exercise and workout the next day. I am trying to be more vocal and open up about my condition. It’s not a death sentence… it’s just requiring some rearranging in my life. And most importantly I am still the same Katie… But soon you may (once in a while) see this Katie with a cane… Some days you may see her with a back brace…. Some days her hand will be wrapped up or her shoulder in a sling… But you will hopefully always see a smile.. Chronic pain is horrible but I’m not numb and I can still feel. I’m alive and I’m breathing and every day I am doing the best that I can.

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.

I am a day late, but hopefully still worth the read. We have just wrapped the end of EDS Awareness Month and throughout it, so many wonderful things happened–especially as EDS Wisconsin launched #KnowEDS, an opportunity for us to educate our communities, the state, the country, and maybe even the world on the Ehlers-Danlos syndromes. I’m not here to write about the campaign, though, even though it is the most important thing we are doing right now. I am here to write about all of the thank you messages we should be sending after EDS Awareness Month. These are the people who have made and will continue to make living with EDS better and in particularly severe cases, POSSIBLE.

  • To our parents: thank you for raising children fighting a battle you often did not even have a name for. Thank you for taking us to appointment after appointment and never giving up on a diagnosis. Thank you for staying up with us when we were crying from the pain our doctors told you were just growing pains even when we sobbed a lot more than you believed growing pains should cause. Thank you for never giving up on us. Thank you for believing we can do anything even with challenges and for showing up to all the events to raise awareness. Thank you for telling your friends about EDS and explaining to the family members who do not understand why your child or children is in constant pain, telling them it is real, making them believe us. We would not and could not be here without you.

    My Mom

  • To those EDS patients we have lost: I have already written about your losses and what they mean to us, how they affect us all, but I want to reiterate what that means. You are so much of the reason so many of us are working as hard as we are. We will take your loss and use it for education. You are not truly lost, because your message is living on through all of us. We are carrying you in our hearts and through our words. You were brave and strong in life and your educational message makes other brave and strong in their lives.
  • To the doctors who fight for us: Thank you for believing us. Thank you for learning about things if you do not already know when we present with symptoms. Thank you for talking to your colleagues and educating them about a condition that makes our lives incredibly challenging. Your fight for proper medication, proper treatment, and proper access to everything we need–that gives us hope–and for some of us, hope is all we have.
  • To our non-EDS friends: Thank you for being there even when you don’t understand. Thank you for trying to understand. Thank you for showing up. Thank you for understanding when we cancel plans or relocating those plans so we can stay on the couch. We need you so much. Thank you for not being upset when we are sometimes envious you don’t have EDS. Thank for knowing that doesn’t mean we don’t love you or need you. It just means we are human and sometimes we wish we had a different life without the stresses we have and you love us enough not to hate us for that–and that makes you incredible.
  • To our EDS activists: Thank you for beginning this revolution before some of us even knew we had EDS. You have changed medicine. You have changed lives. You have inspired us to write and speak and lead and educate.
  • To the children with EDS: Thank you for being brave. You are so strong. You cannot possibly know how strong you are. We all do, because we were you and now when we look back, we realize what it took to survive our childhood. It affected our mental health to be in pain all the time. It affected us not to be able to do what our friends did. Please know that you are very fortunate to have a diagnosis and it will change your entire life versus what happened to us. It won’t cure you. You will still struggle and that is still scary, but your monster has a name and your parents are educated allies we wish we could have had. When you need us, any of us, any time, we are here. We will listen. You are not alone. Not ever.

    EDS Kids

  • To our therapists: Thank you for reminding us that even though our pain is real, it affects our mental health. Mental health is as important as physical health. Thank you for helping us know that. I will never forget when I told my therapist I worried my pain was all in my head and he said “Of course it is. That’s where you feel pain. That doesn’t make it fake.” You are a critical part of our care team. We need you as much as we need any other physician.
  • To our spouses and partners: Thank you for never seeing us as a list of conditions. Thank you for loving who we are as human beings. We need you to help us fight this battle. Most of us didn’t know if we would ever find someone who could handle what was happening to our bodies. When we did, it was life-changing. You are sometimes in more pain than us because you love us so much, our pain makes you hurt. We know you hurt. We know you wish you could move our pain to you and that means a lot more than you know. Thank you for wishing that. Thank you for being that. You are the strength we need on the days we do not have it.
  • To every EDS patient: Thank you for being you and being strong. Remember how many people love and support you. Remember there is hope. Remember you are not alone. Remember so many of us are fighting this battle by your side and we will be there to get you help when or if you need it. Thank you for opening yourself enough to share your struggles. That alone makes you far stronger than you can even imagine. Thank you for being a warrior. We are proud of you.

I am sure there are so many more people I could thank here, but for now, these are the folks I think most important to acknowledge. Please know what it means for you to be in our lives. We love and appreciate you all.

We are strong, but only because we do not fight alone.

 

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!

It’s funny whenever I find myself taking a break from writing, it’s usually because I’m doing the same thing to blog readers as I do to those in my own life–pretending everything is going so well I don’t have anything to say. If any of you know me in real life, the idea of me having nothing to say is, in itself, hilarious. Yet, here I sit, at my desk, in my wheelchair, a dog on my lap, a TENS machine at its highest power attached to my back and I’m still not really sure how to write this blog post.

Essex likes to be cozy

In the world of chronic illness and chronic pain, we all learn to tell healthy and able-bodied people we’re doing “fine” pretty much all the time. We do this for a variety of reasons, including, but not limited to:

  • Our medical conditions are complicated and explaining what is going on would take longer than anyone wants to spend on hearing how we’re doing
  • People generally don’t want to hear when things are getting worse
  • Pity isn’t something we thrive on and we know at some point, it runs out
  • Many people just simply aren’t sure how to react to hearing how we’re doing

I’ve been telling even myself I’m “fine” for the better part of the last several months, even as I fought off a severe infection that required multiple emergency room visits in which physicians did not understand my condition and in which I was time and time again not given the necessary antibiotics to fight the infection. I woke up one morning with a fever of 104 degrees, feeling like I was naked on an iceberg, and shaking so hard I couldn’t even type out a message on my phone. That day was our second trip to the emergency room. Even then, I didn’t get IV antibiotics.

I didn’t get them until the doctor who generally treats the pain caused by my EDS saw me for a regular appointment and realized how incredibly sick I still was even after 9 days on antibiotics. I was tachycardic. I had a fever. My kidneys were so infected the pain in my back was far more severe than even on a normal day. As he looked me over, he called the emergency room down the street and instructed them on my condition, telling them exactly how serious this was.

He also looked at all the blood work from all my previous ER trips…and then from all my trips to all the doctors over the last six years, which is when he noticed a commonality. I had alarmingly low levels of a necessary enzyme in my blood consistently for six years. These levels had been flagged in my blood work every time it had been drawn for all these years and are indicative of a condition found in 1 in 100,000-300,000 people. It is a metabolic bone disorder that cause almost all of the things he and I had been trying to figure out for years. You see, I have incredibly curved long bones in my legs. I developed scoliosis in adulthood. I lost my baby teeth before preschool. My pain responds to almost nothing. These are all MAJOR indicators of Hypophosphotasia, marked by these clinical symptoms, and below normal levels of alkaline phosphotase in the blood. He was the first doctor to notice this. Normally, in his words, because it is even less known than EDS, they look only for extremely high levels of ALP, a marker for kidney failure.

He immediately consulted genetics as I was sent to the emergency room for treatment for the infection, which is now finally gone. I received a message the following Sunday night from him (seriously, he is THAT dedicated a physician) letting me know genetics agreed with him that it is extremely likely I have this condition and would be contacting me. Genetics says it is either this condition or another metabolic bone disorder, but by some stroke of luck, a company offers free testing for this condition, so currently, my spit is at a lab after my husband mailed it for me, because I was just too anxious.

How have I handled all of this? Well, I stopped using my mobility aids and have been acting like I’m a completely healthy and able-bodied person through incredible amounts of pain. I have tried to convince myself it’s not possible I have another condition doctors missed for years, especially one that was IN MY BLOODWORK by acting healthy and “fine.” That caught up to me today, in the middle of a grocery store aisle when I dropped something on the ground and realized I couldn’t bend far enough to pick it up. By the time I got home, I could barely leave the couch and had to use my wheelchair the rest of the day, mostly through tears and anger.

I’ve resolved to accept my reality no matter what it is. In fact, it could be good news to know exactly what is going on with my body and why I have had these struggles that do not necessarily line up specifically with EDS. I’ve also resolved to stop saying I’m fine when I’m not. I’ve resolved to stop trying to convince myself I’m fine when I’m not.

It’s a REALLY good idea to work on your mindset. You can work towards a positive attitude. You cannot trick your body in to having different DNA than it does. Sometimes, like I have written before, accepting your limits is okay. Sometimes, when someone asks how you are doing, it’s okay to say, “I’m in a lot of pain today, but my husband and I had a great dinner date last night” or “Thank you so much for asking; I’ve been having a really hard time with my health lately and I need someone to talk to.”

So, I’m not fine, but by accepting that, I think I will be much sooner.

I post a lot online. For some people, it’s probably annoying or way too much. For others who share my condition or have family members who share my condition, it’s probably comfort. For others, they probably just don’t feel much of anything about it. Honestly, I don’t much care where you fall on that spectrum–and I don’t mean that in a rude way. I do it for two groups of people: myself and the people who need the words I write. Everyone else knows how to avoid reading them.

I wear makeup to the emergency room…I don’t know. Sue me.

I was in the hospital most of yesterday. It’s not the first time that’s ever happened. My husband couldn’t be there with me, because he had to be at work. I have some complicated issues with my ovaries and uterus that are causing intense pain and major symptoms in my life that frankly, none of you want to hear about.

Here’s the problem, though. I hear this all the time. I get told this all the time. It’s one of the comments I read the most on my Instagram posts and blog and other internet formats. “How are you ALWAYS happy and positive?”

I am absolutely, in no uncertain terms ALWAYS happy or positive. In fact, if you asked my husband, he would probably laugh so hard at you about that he would end up on the floor. Not only am I just NOT ALWAYS happy, I have clinical depression and severe anxiety. I am medicated for both and despite medication, I still feel them. I work with a psychiatrist and I talk about how I feel and I have yet to make it through a therapy session without crying and saying “not fair” at least once.

So, how am I smiling frequently? Are my positive posts lies? Am I always sad and crying?

No, that’s not the case either. I genuinely believe I was put on this earth with this chronic, incurable condition to help other people. I have a positive attitude about it a lot of the time. I have moments when I scream and yell and cry and use words that are not appropriate for a blog or for children…but I also have moments when I read the words other people comment on the work I’ve done with EDS Wisconsin or the posts I’ve done myself and I remember what I can do with the situation I’m in. I remember there are young kids looking at me and thinking about what’s going to happen to them when they get older and I hope what they’re thinking is that it’s going to be okay. I hope they notice that I have a wonderful husband and a supportive family and two adorable dogs and I served in elected office starting when I was only 20 years old and they realize that even if they’re sick, they can still have fulfilling life. I hope they forgive themselves for the moments they are angry at the world for giving them EDS but also find joy in their uniqueness.

I mean, look at her face. She can brighten any day.

I’m different from most other people. I’m different not just because I’m sick. I’m different because I can write and I know every word to every Taylor Swift song ever written and I can paint tiny artwork on my fingernails. I’m different because my mother tells me I’m the only person she’s ever known who’s actually uniquely talented at coloring. I’m different because I have a tattoo of my dog’s crazy big ears on my left shoulder and a tattoo in memory of my wonderful grandfather on my right wrist. I just also happen to have really crappy collagen that means I sometimes use a wheelchair or the most blinged-out crutches you have every seen.

I am not always positive. EDS is not even a little bit fair. I wouldn’t change my life for anything; I love who I am–and I can feel that way while also knowing I wouldn’t wish EDS on anyone else in the world. I may not always be positive, but I am positive I wouldn’t want to be anyone, but the Taylor Swift-loving, puppy-cuddling, has way too many bottles of nail polish person I am.

I’m just me. Positive, negative, me.

If you read this and if you are in my shoes, please remember what I always say about self-pity and sadness:

It’s okay to visit…as long as you don’t unpack and live there.

This morning, just after midnight, we lost a member of our EDS Wisconsin dazzle. If you’re new to reading the blog or unfamiliar with groups of EDS patients, we call ourselves a dazzle, because a group of zebras is called a dazzle and we are called zebras.

Since I got this message on my drive to the office this morning, I haven’t known exactly what to say except that we needed to say something. As the writer of the group, I’m often asked what we should say when something like this happens. I’ve been told since I was a little kid my power over words was impressive, it could help people, it could change things.

The problem is, there aren’t words that make this any better. I cannot write anything in this blog that will take any of the sting away from losing a beautiful young woman at only 30 years old. Nobody wants to admit their selfishness when someone else’s life is gone, but in the moment, the immediate moment I heard she’d passed, all I could think was, “that’s only two years older than me” and I cried to myself in my car as I drove the rest of the way to the office. I cried for her, imagining the pain she had in those final days. I cried more for her family and friends, because at least in my belief system, she is at peace now–something she struggled to find due to the complications. Finally, in the most horrifically selfish admission, I cried for myself. I cried thinking about my absolute terror at the idea something related to having EDS could mean I only get two more years with my husband and my dogs–I cried more later when I read her obituary and about how much she adored her dog, because it was another trait we share. I cried because some days I am just so tired of people I know and love hurting and feeling like nothing I ever do is going to be enough.

I don’t want to write this blog as though she and I are close personal friends. It would be a disservice to her memory. We interacted online as so many do in the EDS community. I remember finding her faith comforting because I share that faith. I remember wondering if I could help and how. I wonder that to myself all the time, usually when I’m feeling like I’m not doing enough, because we lose EDS patients in the world every single day.

I think when you exist in a chronic illness community the way so many of us do, we find a way to connect to people. We feel like they are part of our families no matter how little time we spend with them, because in some cases, their DNA is more similar than the people we are actually related to us. They share our experiences. They share our struggles. They understand our emotional and physical pain and sometimes, they are the best sounding board for us. So, when we lose a member of our chronic illness family, we grieve them, because grief is human and we might be chronically ill, but we are human.

There aren’t words to adequately express grief. Grief is too complicated to be put in to words, but pretending we don’t feel grief is not healthy. Pretending losing a young, beautiful woman with EDS doesn’t also terrify us is not healthy. Accepting the truth about this grieving process means we don’t delay too long what is truly important–fighting for the people we have lost–and I believe at the end of the day, every single EDS patient we’ve lost would want that from us. They would want us to brainstorm ways to help their doctors be more informed. They would want us to get together and remember fond memories about them while also discussing how to teach patients who share their condition to advocate for themselves because in their passing we found a passion for even more advocacy. They would want to help patients with their passing, I truly believe that.

I hate the saying “she lost her fight with [fill in the blank disease]” because it is absolute nonsense. No human being has ever lost a battle against a disease. Instead, they found peace from it. Whether it’s EDS, Cancer, Parkinson’s, or any other condition, I refuse to ever treat another human being as having been too weak to win. Living with these conditions for any length of time is victory. Impacting the world is victory. When peace comes to our victorious friends, we will take the torch and we will keep fighting, because we will never let someone pass in vain. We will continue our work and we will continue our fight and we will remember that we cannot lose, either.

And then we will cry, because we lost a member of our family today and it’s normal to cry when you lose someone in your family.

Thank you for reading my words while you were here, Lisa. Thank you for loving dogs like I do. Thank you for fighting this battle alongside me. Thank you for allowing us to continue your fight. We will not stop. I’ll give my dogs an extra squeeze for you tonight. You won.

Lisa and l shared a deep love for our dogs. Here is my littlest baby, who has gotten lots of love since we lost our zebra friend.

Together we are stronger!