I couldn’t have said that any better, thank you so much Mary and Cam, and thank you also Johanna for all you do!
Registration and Event information can be found here.
I couldn’t have said that any better, thank you so much Mary and Cam, and thank you also Johanna for all you do!
Registration and Event information can be found here.
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 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’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.
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.
What are mast cells and how do they affect pain, brain fog, fatigue, allergies, anaphylaxis and even autism?
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.
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
Postural Orthostatic Tachycardic Syndrome (POTS)
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.
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.
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.
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.
Want to join me in supporting a good cause? This #GivingTuesday I’m raising money for EDS Wisconsin through our fiscal sponsor Chronic Pain Partners. On Giving Tuesday, Nov 27 Facebook and PayPal will match a total of $7 Million in donations.
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Thank you for your support.
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!