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As I sit here rounding out a belated Thanksgiving celebration with my husband’s family, I am reminded of the things about life with EDS that make holidays especially challenging–and these vary from person to person. For me this holiday, I am struggling with significant spinal pain that has me using evenings in hot baths and bed to get relief rather than around the table desperately trying to be interested in a board game I don’t understand.

             My Crew This Thanksgiving

For many of you, these pain limitations are shared. Maybe you have family members who think Thanksgiving is the ideal day to run a 5K and you rely on a mobility aid or simply cannot handle such distances. Maybe your family plays some sort of amateur football game with just enough tackling to dislocate your shoulder or knee, rendering you on the bench and refereeing instead of scoring a touchdown.

Then, there are food restrictions. These can be hard to understand for people who have always been able to eat what they want and exhausting as you try to explain MCAS for the 86th time that day–or just look longingly at someone else’s pie or dinner role.

Maybe you’re surrounded by people pregnant or with babies and you desperately want to be a parent but can’t–and while NEARLY every part of you is happy for them, there’s this tiny part of you wishing you were sharing that experience with them, nagging at you as you smile, your conscious mind begging you not to cry.

And, it would be wrong not to acknowledge our EDS friends who are unable to experience group gatherings due to the severity of their symptoms. It can feel even more isolating on these “special” days.

So, how do we deal with these things? (Because right now, this just sounds like a list of all the things I want to whine about.)

If it’s possible, find someone to be your support system as an individual away from the crowd, who will check in with you with the empathy needed. My husband takes time to check in periodically and also knows the signs of my symptoms flaring without me needing to voice them. He will do what he can to get me to mitigate them when I tend to downplay them in an effort not to take away from a gathering.

Prepare how to handle conversations and decide where your boundaries are. If you are comfortable explaining things, you may want to practice how you will do so. If you don’t want to explain them, remember that you don’t actually have to. Outside those determining your treatment plan, no explanation is necessary. You may find it helpful to prepare how to best draw those boundaries.

If there is a chance you will hit your limit before the natural conclusion of an event, forgive yourself for that and allow yourself the freedom to leave. You owe your mind and body peace far more than you owe a group of people socializing or more time eating. Those who love you and know you best know you are doing what is necessary.

Finally, remember you are uniquely you and just because another EDS patient was able to do more than you does not make you less than them. This Thanksgiving, I’m thankful for all of you, all you show me every day, and surviving another year in this body.

I recently heard a young person (I know; it’s crazy when we stop fitting in this category) use the phrase “doing the most” to describe a person going over the top–and they didn’t mean it in a good way. It’s a little funny when you think about it, though–“doing the most” should really be a good thing. However, I think as EDS and HSD patients, we treat ourselves much the same way when it comes to self-advocacy with doctors and it probably starts with the fact that so many medical professionals treat us exactly the same way. Here’s what I mean–when we push for answers and help by, in a literal sense doing the most, we are seen as pushy hypochondriacs or people who have done a few too many Google searches, maybe people who have self-diagnosed, maybe people whose tests up to now look “normal” and therefore nothing is wrong except what’s in our heads, we judge ourselves just like those young people. We see ourselves with that same negative connotation. The self-degradation sets in like POTS in summer weather with no Gatorade.

Over time, this degradation contributes to medical trauma (medical trauma ultimately the responsibility of a system in which so much advocacy should not be necessary but that’s another topic for another day). It drives us to stop seeking answers and advocating. It pushes us to isolate and over time, we may even begin to believe we are crazy. I heard once the average time of diagnosis from onset of symptoms for an EDS patient was over 22 years (I can’t cite a source here and this has likely changed; don’t come for me). When you think about what 22 years looks like–if that period of time were a human being, they could graduate college. That is a college graduate worth of years feeling crazy and begging for answers from any number of medical professionals who make you feel even more like a crazy person. AND, that’s only on average. Imagine you are the outlier. You are the person who is in your 50’s at time of diagnosis having spend decades collecting traumatic experiences like I collect Taylor Swift merchandise. Trauma doesn’t just change the mind. Trauma changes the body. Society fails to see medical trauma as real trauma so often and we deserve better.

I suppose I have begun to ramble yet again and missed the point entirely, so I’m going to attempt to do something helpful rather than continue down a negative path.  I was fortunate to be surrounded by people who made sure I didn’t stop pushing no matter how discouraged I got. They didn’t let me give up even when I was told for the 857th time if I lost weight I would feel better, even when that turned into an eating disorder and I still didn’t feel any better, even when another orthopedic doctor told me they couldn’t explain why surgeries either needed to be done or had failed. In this way, I learned quickly how to “do the most.” What that meant was when one doctor didn’t have an answer, they weren’t the right doctor–not that nothing was wrong. What that meant was when a doctor spoke to me in a way that had me sobbing in the car on the way home, we called and filed a complaint with the system, even if all that did was put some note in some file somewhere. What that meant was making a list before every appointment of what needed to be done and if it didn’t happen, we moved on. What that meant was making sure when I was ready to give up, nobody else around me was.

In reality, I’m not that good at this myself. I’m a “do as I say” person and I can advocate fiercely for all of you. (I’ll go to the doctor with you if you need.) I think how I have learned to “do the most” is by bringing my husband who has learned the means by which to get me the help I need. He won’t leave a doctor’s office until he asks every question. He keeps detailed records of all my medical bills, every visit, procedure, and prescription. He reminds me all the time that I am not a bother to these professionals AND that even if I am, it is their responsibility to accept that bother. He has helped me exercise when I have needed it and made sure I rest when I would otherwise push my body too far. He will run to get me electrolytes in a POTS episode, made sure I refill my medications, and picked them up whenever necessary. He helped me get my emotional support animal and manages the pet insurance for them as well.

Sometimes, the best way to advocate for ourselves is to accept there are times when we are simply too weary to do so. Sometimes, we do the most by recognizing others love us on our medical battlefields when that trauma causes us to freeze up. All the best intentions and the most lists won’t help when we get flashbacks on every exam table. Wars are not won by a single soldier. You don’t need to win by yourself either and we are all here to back you up.

I have also made progress in my ability to do the most by recognizing my need for mental health assistance. Let me be clear–this is not because my pain or disease are imaginary. This is because living with my pain, disease, and other things in my life is simply too much to handle without that help. I will never forget the psychiatrist to whom I said I had heard my pain was in my head for so long I was convinced it was. He looked me in the eye and said, “of course it is; that’s where we feel pain.” It was this moment of profound insight. He took this sentence I said and changed its meaning in a single sentence. From that moment, whenever I feel my pain is in my head because of a flashback, I giggle a bit and tell myself “of course it is.” I go to therapy every week and I love my therapist. When I saw one I didn’t love, I moved on. My therapist has researched EDS and has another patient with it as well. This has given her immense insight and not only makes her better with me but she says it makes her a better therapist all around. I agree. Don’t be afraid to ask for this professional help either.

I guess what I’m saying at the end of the day–no matter what any young person says, “doing the most” in this part of your life is not only helpful, it is necessary. You deserve the best treatment, the right diagnoses, and a community of people around you who understand and support you. I hope you will use this community to help you find professionals who make doing the most require less of your energy, less exhaustion, and less frustration–and I hope as you have read this, you know even more that you are not alone.

My Advocate

It has been some time since we utilized this blog but as your new president and the previous blogger for the site, I would very much like to return to use of the site for this purpose. In previous years, I have utilized the site to share some thoughts on life with EDS as well as experiences I would like to believe are as close to universal as experiences will ever come in this lifetime. It is my hope as we increase the frequency of these posts, more of our online community will come to visit and make connections through here.

I will begin by saying, I would not be here were it not for this group. I have made connections I will keep for a lifetime that extend far beyond “just” having EDS. I firmly believe each of us can easily begin to see ourselves as so much defined by this condition because there is no single day or hour not impacted by it BUT I also think there is an importance to defining ourselves by the things that make us wonderful and unique and brilliant and beautiful away from this–and even within the EDS community, I have found people who share in what I love and I will be forever grateful for the people who understand what it is like to have EDS and what I call, “AND fill in the blank.” What I would consider one example is, “live with EDS AND love Taylor Swift.” These people are my friends and my EDS family. I hope you will find people who can help you on your EDS journey but also connect with you in a way that fills in your blank.

ANYWAY, (I know I tend to ramble), today’s topic is something that stems from a conversation I had yesterday evening with an amazing support group leader so incredibly dedicated to her Wisconsin region you would be hard-pressed to find another similar. It goes something like this, “nearly all of us tend to see ourselves as mild because we see another person with EDS we perceive to be ‘worse’ than us.” The conversations are along these lines and often with people who don’t even have EDS, “I have mild EDS. Some people with EDS can’t even work.” OR “I have mild EDS. Some people with EDS rely on a wheelchair every day and I can walk.” OR “I have mild POTS. Some people with POTS pass out every day.”

The “thing” is not that we actually are this perceived mild but so much that we don’t want to take away from another’s life with EDS. Instead of looking at how our symptoms improve or worsen day-to-day, we feel a sense of guilt over these things. For example, I work an intense job almost always more than 40 hours a week. At one point in my life, I was working this job, serving on the city council, and attending graduate school all at the same time. During this period, I almost felt like an intruder in the EDS community despite struggling so much with pain there were days I felt like I might die from the pain because there is no way I could fit with people who couldn’t work. Those same people who were unable to work but were still able to raise children likely felt mild compared to those who were unable to raise children and struggled to do much in a day.

Right now, the greatest struggle I have with my EDS is pain. I have never struggled with the fatigue of the condition. I have little concept of what that portion of the condition is like. This does not take away from “fitting” here nor does it mean I need to describe myself as “mild” by comparing myself to others any more than a person who cannot work would need to make themselves feel guilt because I am able to do so–I would never expect such behavior and would feel immense guilt were someone to do so.

You all belong here. You belong here regardless of wherever you perceive yourself to fall on some scale our brains have invented. You can have empathy for differences in situations without taking away from the parts of your own EDS affecting your life. On days you feel better than others, reach out a hand to them. On days you feel worse than others, take that outstretched hand.

A Bad Pain Day

Trigger Warning: Child Abuse, Sexual Abuse, Medical Trauma

Hello, everyone! I know it has been a very long time since I wrote to you here. One of these days, I will be able to tell you the entire story of why I haven’t been able to be as open to the world as I used to be. For now, I will tell you the vulnerability I have always cherished in writing was used to try to fight a battle I didn’t think could possibly hurt me more than EDS does. I didn’t expect what happened after, the publicity, the sudden move away from my home, and ultimately, some really severe PTSD I’m still not quite sure how to handle. For most of my life, I wanted people to know my name and to fight for what I believed in–until my name and fighting for what I believe in almost destroyed my life. I’m doing a lot better now than I had been. I have had a lot of help and support from a lot of people, many of them in this community–and I so appreciate the patience people have had with me as I have tried to navigate venturing back out into the public. My passion has never wavered, but my abilities and my needs have.

May is EDS Awareness Month, as most of you know. I posted a photo in my Snapchat story last night with the caption “Thanks, EDS” and giggled a little with my husband about it. Tammy (our wonderful leader) saw it this morning and mentioned I should share it with you for awareness this month. She was right. The picture is funny if you KNOW you have EDS. Your legs probably look like mine or at least they have looked like mine and they will again. It’s not so funny if you don’t know you have EDS and has the opportunity to educate a lot of people. So, here’s the photo:

Just a Regular EDS Night

I remember growing up and getting hurt many times. It seemed like I was spraining joints more often than I was taking spelling tests. The nearest ER was a frequent stop, so much so I think we had a running joke about a punch card for a free visit after ten stops. Back then, though, I was just a kid, covered in bruises, hurt again. I wasn’t diagnosed with EDS until March of 2016, when I was 25 years old. I always knew what was coming when we went for these visits. I would wait for the worst part. They would ask my mom to leave the room and then ask me questions to make sure I wasn’t being abused at home. Make no mistake about this: recognizing the signs of child abuse is an absolutely critical part of medical care. It was challenging for me because I am the victim of child molestation and I waited 11 years to come forward about it. When they wanted my mom to leave the room to ask me about whether or not she was safe, I was afraid they might figure out the other “thing” or take me away from the person who did keep me safe, the one who kept taking me to doctors no matter how far away the drive, no matter how many of them told her I was fine. I knew she was getting asked questions in the hallway. I knew they were looking for differences in our stories, keeping track of how many times I’d fallen off my bike. I remember even at 13 years old being confused about why she would bring me in covered in these bruises and asking for help if she were trying to hide something.

I wish my mom had known then what we know now and could have advocated for me. When my husband and I go to the ER now, which we still avoid but now only for a lack of knowledge about the more rare of my conditions, Hypophosphatasia, we are able to have them access my electronic medical records to see that I am a patient with Ehlers-Danlos Syndrome. My pain specialist makes himself available for calls about the condition in case they do have questions about the easy bruising. You see, I don’t know where one single one of these bruises came from. My husband is a VERY patient man who would never in a million years lay his hands on me, but I also could literally bump into him when walking across the living room and end up with one of them. I have bruised myself with one of the worst bruises I have ever seen from my own wheelchair, a device meant to limit injury to my person.

Why am I writing this now? I want people who might have legs that look like this to know what to ask their doctors. I want them to know the questions to ask that my mom didn’t know to ask and NOT for lack of trying. We had no idea what EDS was. More than that, though, I want doctors to know what else might cause someone to look like this. I want them to know it is so important to know the signs of abuse, but also to know how to test for conditions that might make me look like this from absolutely nothing abuse-related. I want them to understand this could be caused by the patient’s DNA and a bump into a kitchen counter. None of these bruises hurt when they happened or I would know where they came from.

Maybe the patient who is constantly in the ER with seemingly silly explanations for their injuries, like falling up the stairs (I can’t remember how many times I did that) and also with bruises on them like this also has stretchy skin, hypermobile joints, migraine headaches, and chronic pain. Maybe, that ER doctor could answer their questions or refer them to someone who can before they’re 25 years old and convinced they’re crazy. Maybe that child won’t be afraid about when their mom gets called into the hallway because their mom will already know to tell the physician that since the last visit, they saw another doctor and now they know the child has Ehlers-Danlos Syndrome, which is what is causing the easy bruising and susceptibility to injury–and the medical records will support that and eliminate the trauma of that fear.

The bruises aren’t fun,  but the bruises on our mental health from not knowing for so long are much worse. You can’t see collagen, but there are visible signs of the defective version.

Thank you again for your patience, support, and love. I am blessed to be in a community of people who support each other no matter what. I look forward to writing to you more again.

-Stephanie

PS: To brighten the mood after such a tough topic, here are cute photos of my dogs:

Essex “Boo Boo” Vander Paws

Aura Charlotte Vander Paws

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.

 

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

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!

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