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diagnosis Archives | Strengthening EDS Connections!

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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.

Tomorrow is my “Diagnosis Day.” This is the day I was diagnosed with Ehlers-Danlos Syndrome, the day my world changed forever, the day I finally put a name to how my body worked. The numbers in this date are etched into my brain the same way your spouse’s birthday might be. 3.14. 3/14. 3-14. No matter your format preference, March 14th remains the date and “mixed” remains the emotion.

I spent 20 minutes crying at my kitchen table tonight hoping my fiance wouldn’t hear me over the sound of my latest Netflix documentary. I cried remembering a 25-year old girl whose outlook on the next day was very different from its eventual outcome. You see, we’d finally found the doctor who could “fix” my legs. We finally found a doctor who could make me better. I’d sent over years of records to the new facility hoping by the time I’d arrived there, they’d have a plan to make me stop falling down, stop needing crutches, stop getting hurt walking around my own office.

Then, 25-year old Hopeful Stephanie arrived and put on a pair of way-too-big UW Badgers shorts and waited on a plastic exam table, patiently enduring a resident prodding, poking, and twisting the already painful legs and knees. And then the words,

“I think I know what’s wrong with you.”

She overheard him in the hallway telling his attending physician his find. She handled them coming back in together. She processed the official diagnosis just sort of staring at them, laughing when she said “Don’t tell me I have EDS” and surprising them with her knowledge of the condition, because a close friend had already backseat-diagnosed her quite some time before. They told her they couldn’t do more for her legs than had already been done surgically. They told her she needed to be referred to pain management and scribbled down the name of a doctor who knows EDS well, told her she could put her clothes back on, and wished her the best of luck.

In those immediate days, Hopeful Stephanie didn’t even think THAT much about reality. She was too busy researching and saying “OH MY GOD THAT MAKES SENSE” over and over again to herself as she read article after article. Hopeful Stephanie thought her new doctor would have all the answers.

I refer to myself in the third person above because that’s not really me anymore. I don’t mean that I’ve lost hope or that I’m somehow dark and depressed, because I’m not, but I am incurable–and incurable makes you a different person. Once you’ve processed that you are never going to be completely better, you aren’t who you were before. You change how you see things, you measure things against your condition.

My life is on a timeline, BEDS (Before EDS) and WEDS (With EDS), with March 14, 2016 exactly at the center and none of it makes sense because I’ve had this condition since the day I came into the world.

I want to tell you that even though I haven’t gotten “better” and there are truthfully things about my health that are much, much worse now than they were the day Hopeful Stephanie became me–my life is still better in the WEDS phase.

Here’s why:

  • I understand my body and its limitations. Most people will tell you I’m really bad at actually observing them, but I do understand them.
  • Doctors have a diagnosis in writing on my medical file. They know it isn’t in my head. I don’t feel crazy seeing doctor after doctor and being told I’m fine. I don’t have to worry with every injury that my parent or spouse will be accused of abusing me–which was a very real side effect of growing up as an undiagnosed EDS kid.
  • I can make informed decisions about having biological children. EDS is genetic and it does have a 50% carry rate. It’s nobody’s business how this affects my reproductive decisions, but knowing means I have the information I need–and so does my partner.
  • I have access to more treatments. Without a diagnosis, I was not getting the treatments I needed. Now I get a chance to try lots of things to see how we can manage my life with EDS.
  • I get to advocate and be one of so many loud voices for the EDS community and use my passion for advocacy combined with my chronic illness to do all I can to help make a difference in the world.

I spent more than 13 years of my life not understanding my body. A lot of EDS patients wait A LOT longer than I did. My therapist told me recently that perhaps I’m so passionate about advocating for others because I don’t feel like I got what I needed in those 13 years–and she couldn’t be more right.

I’m still going to cry tomorrow. Acceptance, as I’ve said before, is not a permanent state of being “okay” with your situation, but instead is learning to make room for the discomfort when you aren’t okay with it. I may not be “okay” tomorrow but without EDS, I’m not me–and whether Hopeful Stephanie likes it or not, I think I’m pretty okay.

Plus, the guy I came home to cry to on Diagnosis Day asked me to marry him since then–and what could be better than being his wife?

Together we are stronger!