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I said something tonight I bet people all over America say routinely on Sunday nights. I said, “I’m not ready to Monday tomorrow.” It’s a quirky statement usually meant to imply the weekend needed more hours to do all the fun things people love about weekends, not working, sleeping in, staying in comfortable clothes, being with family, or going places you aren’t able to go when you are obligated to be at work.

What did I mean tonight? My pain all weekend has been absolutely excessive. When I say excessive–I mean, normal people would absolutely not go to work, describe it as a 9.5 on the pain scale, use every tool in the pain toolbox kind of pain. I mean, I literally do not know if my body is going to wake up at all prepared to handle the things I need to do tomorrow.

When I woke up in immense pain today, it was okay. I could stay in bed longer. I could keep the same clothes on longer. I could get a hot bath at 10am while my husband walked the dogs and eat leftovers for lunch, just enough I wouldn’t get sick from the pain meds I needed today. When the pain got worse this afternoon, I could curl up with my dogs on the couch and binge watch something on Netflix while eating a Blow Pop because hard candy calms my nausea. I could relax while my husband cooked dinner even though I prefer to cook for him, because he knew I was in too much pain to cook.

Essex and Mama spent a lot of time cuddling this weekend. Thankfully, she and her sister are very good at taking care of their dog mama.

Tomorrow, Monday, if I wake up in immense pain–an alarm is going to go off. I might be lucky enough to hit snooze, but I need to make a 90 minute drive tomorrow, which means putting pressure on my spine, the part of my body that causes me the most discomfort. I’ll have to put on nice clothes and enough makeup that hopefully customers who see me can’t tell I’m in pain, even though I’ll have to use my wheelchair. They’ll probably ask about it–I’ll have to resist the temptation to respond with sarcasm, because truthfully when you’re in immense pain, it’s VERY hard to stay in a good mood–or not be frustrated with able-bodied people who aren’t sharing in that pain.

Here’s the thing, though. I’ll do it, because I do it all the time. If you don’t have EDS or a chronic pain condition, you probably can’t even fathom this. If you do, you aren’t surprised by this. You do the same thing all the time. It’s less of a “look better, feel better” concept and more of a “fake it til you make it” reality, because if we stayed in bed every day our pain rose above a 5 on the pain scale, most of us would have bedsores.

I’m working on being aware of how my pain affects my mood. I’m working on how to make my pain better. It’s hard when you have tried as much as I have. It’s harder when you think about those 25 years a doctor didn’t tell you what was wrong and all the damage you could have prevented. It’s challenging not to wonder if dreading morning alarms would happen less often if we had known when I was in kindergarten instead of when I was old enough to teach it.

So, my friends, if you’re reading this and you’re worried about whether or not you’re ready to Monday–or if your body can even handle Monday, you are and it can. You are so, so strong. No matter what it takes to get through the day, whether that’s taking an extra five seconds before responding to a question or promising yourself a hot bath after the day, you will get through it, because we always do.

Today is the International Day of the Zebra. If you have EDS or follow those who have EDS closely, you probably know we identify with the zebra. This stems from the major issue we have getting diagnosed due to our symptoms mimicking SO MANY other, more common, less serious conditions and an old adage taught in medical school:

“When you hear hoof beats, think horses–NOT zebras.”

The problem is zebras exist, they have hoof beats, and they need to be seen. They need to be diagnosed. BUT, that’s not the point of my blog today. If you are reading this blog or follow this website, you already know that. What I’m writing in this blog is more about the issue that stems from this condition and the way it presents.

Here is a short, not complete list of the symptoms of EDS (Source: ehlers-danlos.com/The Ehlers-Danlos Society):

Joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis

Soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.

In addition to having EDS, many EDS patients have additional conditions called comorbid conditions. Here are just a few you might encounter:

Mast Cell Activation Disorder
Gastroparesis
Postural Orthostatic Tachycardic Syndrome (POTS)
Chronic Fatigue
Anxiety
Sleep Disorders
Cervico-cranial instability

So, if you’ve recently been diagnosed with EDS, you have a LOT to look forward to (I need to get a sarcasm font, because I use sarcasm A LOT and it’s hard to tell, but in this case, this is obvious sarcasm). My sister was diagnosed this past summer. We were very expectant of this diagnosis shortly after my diagnosis, but very similarly to me, about her mid-20’s, she has had an onset of symptom after symptom. Just like most EDS patients, she is now navigating a sea of doctors–some of whom know A LOT about EDS and some of whom know very little about EDS.

Two Zebras

Like most EDS patients, she will have to see many doctors yet to determine which of the other conditions she has. She lives all the way on the East Coast, so I can’t help her find doctors or be as much of a resource as I’d like.I don’t like to think about it, actually. I wanted to be the only one of my siblings with it–not because I wanted to spotlight, but because I know how truly challenging this condition can be.

AND STILL, my own sister, who has the SAME connective tissue condition I do, looks nothing like me when you see us side-by-side medically. While we both have chronic pain, it is in different areas and in different severity for each of us. She has major issues with her hands and fingers that make it challenging for her to work with a computer; I am fortunate to still have lesser damage in this area. I use a wheelchair more of the time than I am ambulatory; she is not yet using any mobility device. We share some symptoms like chronic migraines and anxiety, but still, at the end of the day, aside from the things that lead to a diagnosis, we do NOT look exactly the same in our EDS battle.

The Ehlers-Danlos Society released a video today. You can find it <a href=”http://”>HERE.
While the video itself is great, there was one quote that stuck out to me.
“No two zebras have identical stripes.”

I have noticed a tendency among those with this condition to worry too much about where they fall in terms of their severity and whether or not they “count” when it comes to our community. Working together to understand the symptoms we share and the resources available is helpful. Determining whether or not someone else’s pain is valid based on a scale of your own symptoms benefits nobody. If you feel you are less severe than another patient, you are valid. If you feel you are more severe than another patient, THEY are still valid. Most importantly, remember that we are all more than patients; we are human beings–and that matters more than any of the rest of it.

Since my diagnosis, some of my symptoms have improved thanks to intervention. I understand what POTS is and in general, I can keep it in check well enough it does not affect my daily life as much as it is before I even knew it was a real condition. Other parts of my condition have gotten dramatically worse. My spine is more curved than ever and I now use a wheelchair much of the time due to the irreversible damage to my spine and legs. I now have to park in handicap spaces and worry about judgment from others when I don’t use my chair. If you are a child newly diagnosed whose symptoms are much less mild than mine due to your age and early intervention, don’t feel less valid–feel grateful that people are beginning to listen and understand and diagnose. Early intervention is absolutely the key to staying on top of how much EDS damages our joints.

Let’s all love each other regardless of what our stripes look like. Let’s help each other no matter what symptoms we see or know or share. Let’s understand that EDS is a condition that exists on a wide spectrum and affects people differently, but what we know without question is that coping with the reality that there is currently no cure is MUCH easier when we have others in our life who understand that same need to accept reality.

Love a zebra today. Love a zebra every day, really. We could use it.

Also, Two Zebras

If you have a chronic pain condition, you probably know just how much work it is to exist. I read one of those internet memes the other day that had me thinking. It said something like,

“No, you’re wrong. I’m not faking being sick. I’m faking being well.”

It made me laugh for a second. If you have EDS and have ever parked in a handicapped parking space without needing a wheelchair, you have probably had at least one person tell you not to park there. I have been accused by multiple people of seeking attention or pretending things are worse than they really are.

After I laughed, though, I started crying. You see, my pain has been absolutely out of control lately. I started a new job just under two months ago and my doctors and I already decided I can’t physically handle it. I have pushed myself every single day to get to my office and do my work, smiling and greeting people through pain, all the while my medications getting less and less effective and my wheelchair becoming more and more necessary. I used to come home after work at night and be able to enjoy myself. Now, less than six months in to my marriage, I find myself coming home from work and wanting to do nothing but lay in bed and watch TV because my body hurts so much. I work primarily in an office. I sit primarily behind a desk. Most people who see my at my job would never even guess that I get home and often choke back tears asking my husband to work knots out of my muscles and then cry as he has to push on the really painful spots because that’s the only way to get rid of them.

I quit my job. It broke my heart. I am not someone who quits a job after two months, but I know I cannot do it and I need to accept that, but I am still overcome with guilt thinking of what inconvenience I have caused others. I am someone guilty of measuring my value by my productivity and I do not feel productive.

I was back home over this past weekend for a family funeral. We lost a wonderful man. It was absolutely devastating–and the first time my extended family really saw me in my wheelchair. It was the first time my parents saw what happens to me after a full day of activity now. It was the first time people close to me realized how truly exhausting it is just to exist in a body that doesn’t work right. Between the emotional and physical pain, I am still tired almost a week later.

Why am I writing this post that seems like me just whining about how hard it’s been to be me lately (even though I promise you I actually do like being me)?

Because it can be lonely here and it should not have to be.

I am making a conscious choice to share these massive struggles with you, because I’ve read the struggles of others lately and I do not want them to feel alone. I want to remind the world that just because someone has pretty makeup on and a cute outfit doesn’t mean they aren’t in incredible pain–in fact, that makeup and clothing might be their best effort to hide it. I want the others who are currently in pain that feels out of control to know there are others who are laying in bed wishing they could go do something and feeling guilty for holding others back.

I am 28 years old and I cried on my mother’s lap this weekend about wishing I had a normal body.

Kids with EDS feel that way, too. They need to know it’s okay to feel that way sometimes. They need to know not to live there. They need to know sadness and grief over their condition is natural, but isolation is dangerous. They need to cry to a parent or a friend instead of hiding their pain until they cannot bear it anymore. We lose chronic pain patients to suicide because their mental health becomes too great a burden as they wish and hope for a “normal body” and have no outlet for those emotions.

I have made many mistakes in the last few months. I have overlooked the struggles of others while enduring my own. We must all work to see pain in ourselves and pain in others. We must avoid the loneliness and isolation of chronic pain and chronic illness. We must allow our emotions to have an outlet before they take control. When you lose another thing in your life because of this crappy condition, you are allowed to be angry. You are allowed to be sad. Your life, though, it is still beautiful. You are still wonderful. I think you will find in recognizing others’ pain, you may find relief and comfort for yours.

I may not be able to do the jobs I hoped I could do. I had dreams I can no longer achieve due to my physical limitations, but I also have new dreams I wouldn’t have if I didn’t have EDS. I’m going to work on those for a while. I’m going to remind myself of all the beautiful people in the world who don’t care if I look pretty and say I hurt; they believe me anyway (and want to know the name of my eyeshadow palette so they can look pretty through the pain, too).

Remember: I am here. We are here. Stay here.


Hello, guys! It has been a very, VERY long time since I have written here. There are many reasons in my life why I haven’t been able to share with you for a while, including that my husband and I moved, got a new dog, and started new jobs. For those of you who know me personally, you probably are not surprised I have taken a break from blogging. For those of you who don’t, I’m sorry for the gap there has been in my writing. Please know I have missed being here, missed the chance to share with you, and missed what working with EDS Wisconsin means. Please know that my work here matters so much to me.

We grew by four paws this fall!

So, what brought me back to share four days before my favorite holiday? Pain. I want to write to you, for you, and truthfully almost WITH you because I am in pain. 

Most of us with EDS spent a long time being told nothing was wrong with us. We were given a laundry list of things that would make us “better.” For many of us, there was a phrase that sounded something like “it’s all in your head.” For me, it was 13 years from the first time my mom begged a doctor to explain what was happening to me until the day a doctor actually did. 

This creates a huge problem for us. We take offense then, later, when someone suggests we might need psychiatric treatment. It makes sense, right? You spent most of your life being told you’re crazy, someone finally tells you that you actually have something wrong with your body, and then they suggest you see a SHRINK? Why on earth would you need psychiatric help if your disease is real? Why would you need someone to “fix your head” if the problem is ACTUALLY in your body. 

Well, I have one, huge, giant newsflash for you:

Having an incurable, genetic condition that causes severe chronic pain and usually comes with other conditions with their own symptoms–that causes psychiatric symptoms in itself. You don’t need psychiatric help because you are imagining your pain. You need psychiatric help because you ARE NOT imagining your pain.

I work with a great psychiatrist. I started working with a new one recently because of some trauma I’ve experienced. I knew I needed more help than I was getting where I was going before, so I asked my doctor for a referral to psychiatry. I will never forget explaining EDS to him the first time I met him, though, and the experience I’d had in my childhood with my pain and the doctors and the whole “it’s in your head” thing.

Of course it’s in your head. That’s where we feel pain. That’s how we feel pain. Without your head, you couldn’t have pain at all.”

I have never, in my life, felt such validation. I think those words are burned in to my brain now. I wish I could go back and hug 13-year old Stephanie against my chest and tell her those words in her ear. I wish I could hug her as she begged her mom to find a doctor who would make the pain stop and not one who would just tell her she’s fat. 

There is no cure for EDS. That doesn’t mean you won’t get “better.” It does mean it will always be a part of your life. For some, like me, that means using a wheelchair when I’m only 27. For some, it means not being able to work outside the home. It may mean co-morbid conditions that making eating, drinking, and just existing in the outside world a challenge. For some, all those years of being told it wasn’t real can cause very, very real psychiatric conditions. That does not negate the very real physical part of the condition. It does mean you need help.

I was recently diagnosed with Post-Traumatic Stress Disorder. I’m not going to write about the incident leading to that diagnosis. It’s not relevant to my blog and I’m still learning to cope with it. What I do want to tell you is this:

-My EDS pain is as well-managed as it can be, but for an EDS patient, it is poorly managed. Because of the nature of my pain, I have not responded well to many treatments and we’ve resorted to wheelchairs and other ways to reduce how much I use my body because there simply has been no other successful means of handling my pain.
-When my stress levels are worse, that pain gets EVEN WORSE than it already is. If I rejected the psychiatric help I need, I can’t even imagine what kind of pain I would be in.
-I also find a lot of value in just having someone to talk to who isn’t in my life every single day about the reality of living with EDS. A psychiatrist, psychologist, school counselor, or any mental health professional can let you talk about everything in your life that’s bothering you without it becoming a self-centered nightmare like it would if you spent an hour with a friend in the same way. 
-I highly recommend signing a disclosure agreement that lets your pain doctor work with your psychiatrist. My experience having these two work together has improved my quality of life. I’m not your doctor–but these people would be. Let them help you.

At the end of the day, my point is this: stop being offended at the suggestion of mental health care after an EDS diagnosis. Nobody is saying you are crazy.  I’ve written about the “mental whiplash” of thinking you are imagining it and then finding out you have EDS before; any person who has experienced that PROBABLY needs help from a mental health provider.

I reject the notion that it makes you weak to need mental health assistance. In fact, the day I called the clinic and said, “I really need help and I need it as soon as you can give it to me” took some of the greatest strength I possess. There is so much strength in acknowledging your weakness. 

Every EDS patient is amazingly strong. Don’t you dare let anyone tell you otherwise–but also, don’t let that strength scare you away from asking for help.

A HUGE thank you to all of our donors, it is because of you that we are able to achieve our mission of providing support and resources to doctors and patients throughout Wisconsin in 2018. 

To date, we have created six in-person support groups throughout Wisconsin; further, we’ve provided resource materials to many doctors and patients in need and were able to provide grant monies to two teens to attend a pain conference. Additionally, we held a very successful Meagan’s HOPE Memorial Walk for EDS Awareness and Suicide Prevention which brought 186 individuals together in one place in 2018, traveled to Chicago as EDS panelists for medical students, began working on a leadership program with national organizations, made lots of connections between patients and providers, and have many exciting events currently being planned. 

It is EDS Wisconsin’s greatest honor and pleasure to thank each and every one of you from the bottom of our hearts on behalf of everyone who either has EDS or has been affected by EDS!

Together we are making a difference. Thank you!

  • Advanced Tele-Genetic Counseling
  • Aspirus Family Medicine
  • Chrysalis Massage
  • Concrete Creations of Wisconsin, Inc
  • Culver’s of Rhinelander
  • Digicopy
  • EDS Awareness
  • Fishing Hot Spots
  • Original Pancake House
  • People’s State Bank
  • Prevention Genetics
  • Priority Physical Therapy
  • Silver Ring Splint
  • Soleil Beads
  • The Caring Tree Children’s Center
  • Tools of Marketing
  • University of Wisconsin School of Medicine
  • Wisconsin Integrative Pain Specialists 
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Racing Hearts Day 5k Trail Run/Walk proceeds will benefit programs, education and research efforts at Aurora Medical Center Grafton’s Dysautonomia Center. Help us raise awareness for this “silent” disease, and fund new research. More information here.



I know it has been a LONG time since I’ve written here, but for good reason. I got MARRIED! Despite having a double ear infection AND tonsillitis on top of all the joy that is EDS, marrying the person who has proven to be the greatest possible teammate in this battle against chronic illness was truly the most incredible day of my life. I really needed to take some time to enjoy the wedding and honeymoon and get back in to our lives before I could start to write again, but now, I need to write here because a few things have been happening I think folks who follow EDS Wisconsin can understand.

Despite being happier and more emotionally stable than I have ever been, my body has not been. I had some additional tests run earlier this summer on my legs that did not exactly give me the answers I wanted to hear. Then, I followed up with my doctor and asked what had been on my mind more than anything. I really haven’t been able to get around all that well. Using my crutches and cane hurt my spine. When I don’t use them, it hurts my legs. My doctor said something to me that’s stuck with me. She said, “I think you already know the answer to this, but you just need me to say it to you because I’m a doctor and it won’t be true until you hear it.” I’ve known I need a wheelchair when things are bad for a really long time, and despite writing here and often offering advice to you all, I do not exactly take it all that well.

The next week, I was responsible. I followed up with my psychologist. We talked about how it felt. We talked about what it meant. We talked about dealing with the social ramifications of being a wheelchair user who is not completely immobile. We talked about the tremendous difference it makes in my mind to have the wheelchair instead of the crutches or the cane–especially when I already don’t use them as much as I should. Then, came the insurance company asking me if it was even medically necessary to have one. At that moment, I knew, for the first time, I had to come to terms with my reality. I cannot stay in the workforce if I do not have a wheelchair to help me. I simply do not have the strength or pain capacity to handle what it is doing to me to work on my feet.

I had a wheelchair in my garage. It was an extra chair that isn’t exactly fitted right and certainly not a long-term solution. I kept it there, gathering cobwebs just in case of emergency. I kept it there because I worried I would need it someday. It had been almost a month and because insurance is complicated, I still hadn’t been approved for my own chair–but working had just gotten to the point I couldn’t do it anymore. SO, I didn’t what I never thought I would. I cleared off the cobwebs on the chair. I got a memory foam seat cushion and a bag for the back of it to carry the things I need for a day. Then, I took it to work, where I work with college students every single day. These young people can be unforgiving, judgmental, and challenging.

Here’s what happened: nothing. Nobody said anything at all. It didn’t cause me any problems socially. I was able to get through a day of work with much less pain than I normally do. My staff helped clear things out of the way to make our office more accessible. The college students I see every day didn’t see me any differently than ever before. Neither my staff nor my boss thought I was less valuable than before. I got home at the end of that first day in tears because I was so mad at myself for not doing it sooner.

I can’t say I’ve had this experience everywhere. In truth, older people struggle more with my disability than my generation. I don’t know if they always know how to handle that I look young and healthy when I’m not. They’re often the ones who make comments to me about handicap parking spaces or my decision to use a scooter in a grocery store even though I know people will look at me funny. I wish I had a chance to sit down with every person who did this to me and explain to them the 13 full years of my life I hurt this much and didn’t actually know why. I wish I could tell them about the surgeries I had in high school that were supposed to “fix” my legs but never did. I wish I could tell them that my high school threatened not to let me graduate because I couldn’t take a traditional gym class and wouldn’t let me march with my marching band because I was in a wheelchair from my surgeries–even though I sat first chair in the band and music was my favorite part of my education. I wish I could tell them that even though they might be judging me or assuming I’m not disabled, I am going to continue being as visible as I can for all the kids who are still out there who don’t know what is happening to them–and who might, right now, not be with their marching band, either.

I resent when people say you can do anything you set your mind to–or that if you just believe enough in yourself you can achieve anything. That’s not true. Limits do exist–and that’s OKAY. Accepting my limits is not easy–and society telling me not to is unhealthy. I believe in myself and my ability to be successful, but I also know I need a wheelchair sometimes and that my body has limits able-bodied people my age don’t understand. Life isn’t an inspirational poster all the time. Sometimes, it’s about taking the hard stuff and seeing the good in it. It’s about seeing how the bad things that happened because it took a long time to learn about your EDS–those things are now the ways you’re helping other people. I’ll take that over winning a marathon every day.

Together we are stronger!