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‘Twas the night before doctors and all through my house…my emotions are stirring, faster than a sought-after mouse.

Okay, so I’m not really going to write this entire blog post that way. It’s not my style and isn’t the message I’m going for, but I’ve taken a break from writing, mostly for personal reasons, and now I want to get back to sharing with you about the world of EDS.

Tomorrow, I go back to my pain management doctor for what seems like the ten millionth time. I’ll be honest when I tell you that pain management seems like the place they send you when they stop actually looking for a way to fix you and start looking for ways to help you mask your symptoms. My pain management doctor is honestly incredible. I don’t think I could say a negative thing about him other than that, like the rest of the medical world, he still hasn’t cured EDS. Despite that, however, I still don’t want to see him tomorrow.

Here’s why:

I haven’t improved since my last appointment.

There. I said it. Now you know. Now I’ve put into words and acknowledged in English the truth I haven’t even wanted to tell myself.

When they ask me tomorrow to reduce my pain to a numeral, I won’t want to, because I don’t measure it that way.

My pain is measured more like, “I hurt so much I couldn’t walk my dog to the mailbox today” or “I hurt so much the only thing I could tonight was take another painkiller and lay in a hot bath tub until my tears wore off all my eye makeup.” My pain is measured in CAN and CANNOT. It is measured in DO and DO NOT. It is measured in braces and canes and crutches. It is measured in tears and pills and puppy cuddles and coloring book pages and hours spent watching Netflix instead of walking my dog or dancing to Taylor Swift in my comfy weekend clothes.

Tomorrow I will have to rate my pain and how much it has changed since my last appointment. Tomorrow I will have to tell my doctor I want to try something else because I can’t do this anymore. Tomorrow I will have to say my pain is averaging a 9 and the CANNOTs and DO NOTs are outweighing their counterparts. Tomorrow I will cry off my eye makeup before 9am, because my doctor will come in at 8.

And then, we’ll come up with a new plan. My doctor will tell me again how strong I really am. My supportive mother-in-law will take notes and ask what else they can do to help me. But, I will keep fighting and not every night will be this scary. I will be thankful for the doctors who fight this hard, the family members who support us, and the people reading these words right now.

And finally, I’ll leave the doctor’s office and get back to my life–like every other appointment before and every other one to come, because that’s what we do. We keep fighting. We keep living. We do this, because otherwise, EDS wins.

Choosing to smile!

I had some glamour shots taken while getting my infusions done–enjoy!

I still remember my first hospital stay after my first surgery. I was 15 and afraid. I woke up from surgery, though, and everything seemed totally fine. All I wanted was Taco Bell. I would have traded anything for Taco Bell. I begged my mother to go get me Taco Bell–and she did, because I was her child, I had just been through a challenging endeavor, and it was a simple request. As far as we both knew I was fine. As soon as she left, my pain levels rose, I began violently throwing up all over my bed and myself, the swelling inside my cast on my leg became too much–and I pushed that call button next to my hospital through terror and tears.

I’ll never forget the nurse who came through the door and moved the curtain around my bed. I was embarrassed. I was “grown up” and I didn’t want to need my mom or help, but I was covered in my own vomit and I couldn’t move at all because it hurt too much. She didn’t even think a thing of it. She didn’t just do her job, though, she held my hand with her other one, which made cleaning me up much more difficult. She stayed by the side of my bed and held that hand, releasing only once so I could remove my arm from my hospital gown. She let me cry about things I was too embarrassed to say before she held my hand–I told her that I had a catheter in and I had my menstrual period and I felt dirty. I told her I was so nauseous I didn’t know what to do. After she finished cleaning me up, she stayed by my bedside until my mother got back, holding that ugly pink tote while I continued to throw up all the red Jell-O I thought I needed after surgery. I know I threw up on her that day. I still remember her pretty pink scrubs and her name being Jennifer. I remember she was pregnant and there is no way the smell of my vomit didn’t bother her. But she stayed there while I threw up and she stayed there and let me cry–and she made me feel comfortable enough to tell her how mortified I was.

I should have seen that as the start of a lifetime full of nurses being the warriors on the battlefield that is my chronic illness. I don’t know that I often have a chance to acknowledge all of the work all of the nurses have done for me in all of my years seeking treatment. It was another ten years of seeing doctors after that first surgery before I got my EDS diagnosis and there were nurses at every doctor’s office and dozens of visits trying to understand what was happening, all of whom played a role in me finally figuring out my life and my body. They were just as much a key component of my diagnosis as any doctor, because I’m not sure without them I would have been strong enough to keep seeing doctors.

Too often, when things are just too bad and I need help, it is an amazing nurse who has to take my phone call. I have tremendous doctors, but that means they see a lot of patients. My nurses have taken many phone calls from me crying that I need help with something. Those same nurses have hunted down my very busy doctors to get prescriptions filled, appointments squeezed into calendars and referrals made for me–none of which would have happened without their loud, booming voices speaking for the patients they represent.

Part of what I’ve sought to do through my work in real life and in the words on this blog is to advocate and speak for the patients who face a lifetime of incurable, chronic illness; what I’m telling you right now is that nurses do this one hundred times better than I do every single day–and often while being vomited on, yelled at, and not getting enough sleep.

This morning, I had my first round of an infusion therapy we are experimenting with for my pain. It is administered entirely by nurses. The first nurse attempted to get the IV in twice. I have wonderful veins for IV placement, but my EDS skin makes it so challenging. After she didn’t get it the second time, I was crying and she apologized so quickly, wanting to find a second nurse. She asked me if I was in pain from the needle pokes. As I choked back the tears and told her it wasn’t her and it wasn’t the needle pokes, but just that I’m so scared and I’m so tired of trying everything and nothing working so this just felt like another failed attempt already, she got another nurse to do the IV, but only so she could hold my other hand while she did it and tell me it was going to be okay. She sat there next to me and let me know that she was going to be there every second I was there making sure I was okay. She is a highly trained medical professional and she still fetched me a soda for comfort, carried my purse because it’s hard on my crutches, and asked me questions about the work I do in the city I live in. She couldn’t cure what’s wrong with me, but she did distract me for moment. When she held my hand as the other nursed inserted the IV into my other arm, I flashed back to being 15 and covered in my own vomit as a nurse took twice as long cleaning me up with one arm so she could make sure I felt safe and secure while she did it.

The nurse today kept her word. Katie checked on me several times throughout the process. She brought me extra pillows and dimmed the lights when it made me tired. She took notes on my side effects and fetched the emergency nausea prescription I have to carry in my purse when the side effects got to be too much. She made sure to offer to slow down my drip when I was uncomfortable.

Katie was a wonderful nurse. I hope she gets the recognition she deserves–but what strikes me is that she isn’t even all that unique. I have encountered dozens, maybe hundreds, of nurses with this level of dedication to their patients. If doctors are the generals on our battlefields, they are our foot soldiers–and I will salute them every single time.

What do you want me to write about next? Thoughts?

I was 26 the first time someone explained to me what FOMO was. I assumed it was a curse word. It turns out, though, it was the “fear of missing out,” this concept that you always worry that any time you aren’t “doing something,” you are missing out on “doing THE thing.” For a person with chronic illness, and especially a young person with chronic illness, FOMO almost seems like an acronym that should make our list of diagnoses…

  • Ehlers-Danlos Syndrome
  • Chronic Pain Syndrome
  • Myofascial Pain Syndrome
  • Fibromyalgia
  • Mast Cell Activation Disorder
  • Fear of Missing Out

I have always been the person who wanted to do everything. I saw my life as an opportunity to achieve everything. I made a to-do list of accomplishments and started checking them off. When I was 25, my health started declining. I got my EDS diagnosis and things started making sense. I thought I would suddenly be better. These last two years, though, my body has paid the price for years of not understanding what was “wrong.” I’ve paid the ultimate price for years of running on knees and ankles that dislocated. I’ve paid for the pain my gym teachers told me was “normal” and to “quit whining.”

Now, I’m 27 and my body is in pain a lot of the time. I see doctors frequently looking for a solution. BUT, I haven’t learned that sometimes it’s necessary to rest. I’m not always good at saying no. I’m not always good at staying home when I want to be out doing something else. If I had a dollar for every time I pushed my body harder than made sense, I’d probably never have to worry about bills for the rest of my days.

Here are the ways I’ve tried to cope with those days when FOMO isn’t just a fear, but a reality:

  • I made friends who understood. I used the internet and found support groups. I reached out through EDS spaces and realized I’m not the only young person feeling this way. I attended the EDS conference in September. There, I made a friend who lives in New York. BUT, she still sends me a text after every time she has  a doctor’s appointment. I still message her to check in. When I’m crying on the couch because I want to be out doing something with friends, I message her and realize she understands completely and without judgments. I’m so thankful for the friends in my life who don’t deal with chronic illness, but these connections who get it, they are absolutely CRITICAL on these days.
  • Acknowledge the frustration but DO NOT live there. If you pretend it doesn’t bother you, that usually makes it worse. Admitting you’re hurting over the unfairness of it is okay, but then, move on.
  • Find something fun and safe to do at home. We enjoy board games and video games as a family as well as play time with our puppy. Individually, I love coloring and painting artwork on my fingernails. Just because you’re at home doesn’t mean you can’t have fun.[contact-form-7 404 "Not Found"]
  • Find ways to enjoy the safe time. I remember looking sadly at a trampoline park with friends. I desperately wanted to jump on those springs more than I wanted anything in the world. I realized quickly, though, that it would take two seconds for me to get hurt there with my friends. Instead, my friends and I find things to do that are completely safe for me. When they want to do things I can’t do, I cope with that reality by finding things I enjoy in that off-time. My fiance and I spend time together and then I can meet up with them for a meal later. You don’t have to miss everything just because you have to miss some things.
  • Don’t push yourself for the sake of others. This is just not worth it. If you want to talk about this, I’ve got about 457 stories to tell you. But, it’s pretty self-explanatory. Take care of yourself. It’s worth it. I promise.
  • Find a good mental health specialist. I can’t tell you enough the value of therapy. It doesn’t make you crazy. Any person who pretends they could deal with endless chronic pain and a condition with no cure like EDS without feeling like they need someone to talk, frankly, is full of it (and you know what it is). I have had so many wonderful therapists help me face my realities. They are absolutely invaluable when it comes to facing this reality. You don’t have to be alone in this.

The FOMO is real. When you have a condition like EDS, sometimes missing out is for your own good. How you face that reality is up to you. You just don’t have to do it alone.

Remember, we aren’t a substitute for your doctors or mental health specialists. ALWAYS talk to them if you are struggling, please.

There are fun, safe things to do at home–like nail art!

As a person who has chronic pain, this list was created with the help of members of the group Ehlers Danlos & Joint Hypermobility on Facebook because I thought it would be helpful to have an easy, one page resource to refer to when my mind was consumed by pain, making me unable to think straight. I even printed a copy for my family to refer to so that they could help me after surgery. Here is the pdf that I use at home.

The way that I think about pain relief is how Dr. Pocinki explained it at the EDS International Consortium in 2016:  He said that if you do one thing that takes away ten percent of your pain, that is good, and if you do five things that each relieve ten percent – now you’re at fifty percent pain relief! I have found this to be true and a helpful perspective to have. I believe it is important to try many different things at one time and to not rely on just one.

***Always check with your doctor. This list is not intended to replace medical advice and is solely a compilation of opinions about things that others have tried for themselves.***
  1. “Epsom salt bath (2 cups Epsom salt, 1 cup baking soda for 45 minutes). Since magnesium is best absorbed through the skin, this helps achy muscles. If you cannot take a bath, soaking your feet in a foot bath with Epsom Salt will also work.”
  2. “Heat and/or ice. One or the other, or alternating.”
  3. “I’m always distracting myself from my pain since I’m no longer taking pain meds.”
  4. Self-hypnosis – Find more information on Alicia Cramer’s Facebook Page. 
  5. “Compile a list of books you want to read. The social website Goodreads you can find your friends and family and find out what they like.” A different member adds “I keep a list of books I want to read on my phone, so when I go to the library, I can be in and out, always have a book to read!”
  6. “YouTube video for  Weil’s 4-7-8 Breathing exercise to help counteract the body’s fight or flight response.”
  7. Prayer
  8. H. says “benadryl can curb panic attacks and relax you (can also put you to sleep of course).
  9. “I also keep lavender spray near my bed, and a sleep Febreeze air thingy too.”
  10. “Nice smelling hand cream by my bed.”
  11. “My TENS unithas been a godsend sometimes for all types of pain. I only wish it weren’t dangerous to use on certain body parts (head / chest) otherwise I’d use it everywhere.”
  12. “Natural anti-inflammatories like Arnica — Arnica Montana.”
  13. Biofeedback — hand warming has been amazing both for reducing stress and decreasing pain. Used to be that one could get a cheap indoor / outdoor thermometer and just use the outdoor probe in the fingers to track it. Sadly I haven’t been able to find one in the stores for several years, but they still sell biofeedback thermometers for this.”
  14. B.W. says “Ucla also has great (FREE) MP3 downloads of mindfulness tracks, they have a whole university program on it”
  15. “Tennis balls for myofascial back pain — a cheaper alternative for back knots for people who are single like me, or for those whose partners either suck at backrubs or work too much or for whatever reason aren’t able to help out. 2 tennis balls properly placed lying on a soft surface like a bed or very plush carpet can really do great for trigger points.” To get the back, put the tennis ball in a pillowcase and lean against a wall.
  16. “Taking magnesium can also be helpful, potassium — sometimes we drink a lot water, and don’t have the electrolytes or other things we need to absorb it. Making sure that we have more than just water in the system.” Another member adds, “Coconut water and Gatorade have electrolytes. Be careful with Coconut water if you have high potassium though.”
  17. “Breathing. Deep breathing can do a lot, and as we get stressed we tend to take shorter breaths and deplete our oxygen. Just 10 deep breaths can help counteract this.”
  18. “The word “nothing” repeated to clear my mind.”
  19. M. says “I’ve been listening to some subliminal message on YouTube about ‘healing’ and it helps me relax and eventually fall asleep. Now I don’t know if this will help me when I’m in the worst of my pain but it’s helped some. The messages are about believing your body is healthy, feeling good, etc. Here is another one.
  20. “Power posing! If you don’t do this already, just 2 minutes can change your cortisol (and testosterone) which can both change your stress and pain.”
  21. “Although easier said than done — not isolating. I always do this when my pain gets bad, and I know it makes things worse. It can be scary because people can lack understanding and can be rejecting when we most need empathy (or they can be condescending with sympathy, rather than empathy). I think that groups like this might be able to help, though, because there might be people who have been there. I think reaching out to someone, anyone, can be helpful.
  22. “Of course we all probably know that there is pain and there are times where it feels like (or there literally is) nothing that’s going to fix it or work enough. And that sucks. But I think hope – having hope is the most important thing.”
  23. “For me getting diagnosed with EDS was really important and having validation. So…hope. Music (for me), love, and letting ourselves live on those days when we feel well enough to do so.”
  24. “Making sure we don’t lose sight of those things that make us us.”
  25. “Remembering we are more than just a diagnosis.”
  26. R. says “What I find interesting is that when my pain tries to take me over from head to toe…oddly enough, my ph balance is off. Prylosac (sp) is good. Weird but works, or h202 therapy. Just a spray for under your tongue.”
  27. K. says “The nerves that perceive pain also feel tickles, joy, sadness. You can,only hold one emotion at a time. Choose JOY!”
  28. W. says, “Distraction. Find a movie that makes you laugh till it hurts or scares the heck out of you, you’ll forget about lots of the pain.”
  29. T. K. says: Watch Why Breathwork Matters by Andrew Weil.  Breathwork is a free and easy practice that can significantly benefit your health. Dr. Weil discusses..Vitamins! Vitamin C helps synthesize collagen, Vitamin D helps with body aches and depression especially in the winter, Magnesium and potassium help muscles aches and spasms.”
  30. B.T. says “permission to rest. One thing that sometimes helps me, often helps me, is to lie down and listen to myself breathe. Focusing on my breath as it goes in and out can redirect your thinking away from the pain. It does take a little practice, but it cannot hurt.”
  31. A. says “when I’m in pain I focus on the idea that pain isn’t the worst thing in the world. It’s a thing, and it’s distracting, but I’ve been through worse. This can lead me to overdo it, so be careful, but I suppose you would call it “meditating on the pain” and I believe that has been shown to be effective. It involves deep breathing, and that’s helpful as well. It also distracts me from blaming myself, which is very helpful. Eating right/ electrolytes and water are helpful but if I mess it up I’m very hard on myself, so that’s not a go-to when I’m already beat up.”
  32. T. K. says “app on my phone with binaural beats. Very relaxing. Anything that can help you focus on something other than ‘tactile’ sense can help relieve pain.”
  33. “I put on music of my pre-teens and teens yesterday… A time when I definitely felt better. It was energizing as it woke up that part of my brain when I was singing and dancing and having fun in my less painful years. I haven’t put my list together but you are all doing a great job with the variety of ideas.”
  34. Essential oils
  35. “I play multiple games of Words With Friends, and several other games to keep my brain busy and occupied.”
  36. “Drink hot tea and honey to relax.”
In case you missed it, here is the printable version.  

I am sure that there are many other things that can help relieve pain that did not make it on this list. Some of the more obvious ones were left off because those are things that I try to do on a daily basis anyways, such as consuming a nutrient rich diet, and getting adequate sleep and exercise.

Do you have something that you do for your pain that would be willing to share? Please post it in the comments section and we may add it to the list permanently.

Disclaimer: EDS Wisconsin, Inc. is not a health care provider and does not provide medical advice or treatment. Information provided by EDS Wisconsin is not a replacement for care from a doctor or other health care provider. Please talk with your health care provider about your personal diagnosis & treatment options. All information is for educational purposes only and is not a substitution for medical care or advice. 

I went in to see my doctor this week when he got me in at the last minute because of some major concerns he’s had about ongoing pain issues in my back, legs, and frankly, my backside. I have a wonderful pain management doctor and I’m so thankful to have the opportunity to work with him, but part of why I wanted to write here was to be able to share some of the raw truth I’ve otherwise written on my own social media posts in an effort to gain a wider audience for what I would consider my bold, unfiltered message of the side effects of this condition. This is the post I shared tonight on my own page. I hope it speaks to some of you. I hope it serves a greater purpose.

This week. What to even say about it?

I usually like to wrap up my doctor visits on social media because I’ve found that it’s helpful for both me and to aid other patients to understand what’s happening, but yesterday I didn’t. Why? Because I crossed the line from being sad about my situation into angry. When I crossed that line, I didn’t know how to tell you about it.

I spent my morning figuring out how to put on winged eyeliner hoping it would convince me not to cry in the exam room, but it didn’t work. Until you’ve had a doctor look at you and tell you he needs to “do some brainstorming,” you just don’t know what it’s like to go to the doctor hoping for an answer and feel just as helpless once you’re there. When he brought in a second specialist to start trying a new technique, I tried to be as open-minded as I could, but the last year and a half of getting worse finally was too much.

I choked out my tears and I told my doctor it was easier when I didn’t know what was wrong with me. I told him I wasn’t sad anymore; I was just angry about how unfair it all was to do everything right and follow all their stupid new rules and still end up in that room begging for help, asking for an answer. I told him I don’t want to do it anymore and I watched as that eyeliner turned into gray liquid and ran onto the plastic top of an exam table.

He’s a good doctor, a great one even. He told me what I needed to hear in that moment when I was completely and totally broken. But he can’t give me back the life I used to have—and that’s what I wanted yesterday, so I was, for lack of a better word, and as he said “scientifically speaking” pissed off.

So, here’s the truth. I try my best to be a role model of the chronically ill with severe chronic pain. I try to keep it together. But sometimes I get pissed off at my body and no matter how cute my outfit is and how great my makeup is, I would trade all of it for DNA that actually works.

But then I came back to town and I saw the people who build me up. I realized my mother-in-law drove all the way to Madison so I didn’t have to go alone. I talked to an old friend who doesn’t see me as any different than before all of this happened. And no matter how “pissed off” I get sometimes, I’m still going to be the girl with too many pictures on social media posting more words than you want to read.

Maybe someday they’ll cure EDS because I annoyed doctors so much they just wanted me to shut up.

Me, deciding to keep going even when that seems too hard. Notice the tattoo on my side. The EDS awareness ribbon surrounding the State of Wisconsin. I had them put a heart around my community–because the love around me is what keeps me going. Hopefully my words keep someone else going.

It’s 10pm or so on a Monday night. I probably shouldn’t be writing this post right now, but when I agreed to write this blog, part of what I wanted to do was be as real and as raw with you as possible, because I can’t be your doctor and I can’t make the medical “stuff” any better. What I can do is be brutally honest with you about the rest of it. What I can do is sit down at my computer when I don’t want to and write what’s actually on my mind. What I can do is post the blunt truth about the reality of this condition and what medical professionals generally don’t understand–and that’s the constant ebb and flow of the acceptance of your reality.

When I was diagnosed, it was this immediately rush of excitement. I finally understood all of the things that had happened to me all my life. I was 25. I had accomplished many things I had set out to do, but still, every day my body ached with a pain I couldn’t explain. Still, I had injuries that didn’t make sense for someone my age with my activity level. Still, I saw doctor after doctor and had test after test–result always coming up “normal” even though I often cried myself to sleep at night because the pain was sometimes so bad I just couldn’t handle it.

And on that day, on that “Diagnosis Day” as I’ve grown to call it, everything stopped. For just a second, my entire world stopped moving. I was alone in a room with a resident and I told him through laughter “don’t tell me I have EDS” because a close friend had told me two years before she knew what it was. He didn’t smile, though. He didn’t laugh. He turned his eyes to those 12×12 inch tiles on the floor and went out into the hallway to find his supervising doctor. He was excited when he got out there. He’d found his rarity. He’d found someone unique. He’d figured out a mystery of a patient who’d had test after test come up normal. He could put words on a chart that would make sense. He would get an A. I would get an incurable diagnosis–and a life that would never again be the same.

I wish I knew his name. I wish I could find him now and explain to him how different it is to be here now, at 10pm writing in my kitchen about this condition that changes everything I do. I wish I could explain to him that while he sees me as a breakthrough, I saw it as explanation and then as a curse. You see, I actually don’t ever see doctors as my enemies–not even the doctors who didn’t diagnose me throughout my life. I see them as the ones who pushed me a little bit harder. I see them as the reason I’m here writing this for you, you who might be reading this for a child who doesn’t yet have a diagnosis but who desperately needs one. I wish I could tell him that I didn’t need him to look at the tiles that day, that I needed him to look me in the eye and tell me that I wouldn’t have a cure, because until a doctor says those words you do, you never see your limits, you keep pushing your body too hard–and when you have EDS, that might mean paying for pushing those limits in pain and injuries. You won’t ever understand what it is to have a condition you’ve never heard of until the day it’s actually in print on your chart, even when the doctors say the words to you, even when you say the words to those you love, even when you write them down the first time–none of them mean anything until an MD etches it down in the permanent record of your life. That’s when it changes. That rush of excitement you have when you finally understand what is different about your body lasts for a period, but then you realize there is no medication to “fix” this, no antibiotic to take for seven days to rid you of this infection. Your DNA is not like a “normal” body and you will have this every day for the rest of your life. That’s when the excitement can become terror, anxiety, or depression. For me, it become all three. At once. It was super fun.

I’m here to tell you that the idea of acceptance, at least for me, comes and goes. Some days, I’m at terms with my reality and I accept that my body has limitations other people my age don’t face. I accept that because of how much EDS affected my lower extremities as a child, I now need a handicap parking permit and I will face the stares and whispers of strangers in a parking lot on a cold, icy winter day when there is zero chance I could safely navigate the entire length of a parking lot. Then there are the days when I refuse to believe it. On those days, I push my body past its limits. I decide that collagen is my enemy and I will conquer it. I decide that every extraordinary person said that limits did not exist and I exceed them instead of recognizing that I can accomplish amazing things well within the safety of what my body can handle. On those days, I cry. I cry over my laptop at night, because I think about how different my body feels. I cry when I think about the naive young girl who thought she could run a half marathon. I cry over the girl who thought the worst challenge in her life would be two leg surgeries in high school. I cry over the future and the things I don’t even understand yet.

But then, I decide life is just too much worth living to stay there. I have always believed those moments are okay. I have always believed that you are allowed to visit those moments of self-pity, as long as you don’t move-in or make it an extended vacation.

Tonight, I’m sitting in my kitchen, wiping up a few tears over my laptop because tomorrow I’m getting up at 5am to go to physical therapy at a hospital again instead of having coffee and relaxing before work. I decided to make those tears mean more than just self-pity, though. I wanted them to mean something for all of you. So, here I am, writing down the raw truth about accepting an incurable condition.

Some days, I do. Some days, I don’t.

But, every day, I live.

My staff had a whole day last EDS Awareness Month to recognize what I deal with. It meant the world.

This is probably the blog I’ve been most interested in writing since I agreed to write here, in this medium, for all of you. I’ve needed to write this here for two reasons:

  1. For those of you who understand and need someone who feels it, too
  2. For those of you who DO NOT understand and needs someone to break it down for you

If I had to list the most frustrating things about having Ehlers-Danlos Syndrome, the first one would be that there is no cure/easy fix. The VERY CLOSE second thing would be that you cannot see at all that I am dealing with this very harsh reality. Unless I have literally dislocated a joint in front of you, you have no idea that I deal with this condition or what I am handling on a daily basis.

A Typical 20-Something Selfie

So, here is me. If you know me personally, you’ve probably seen a few photos like this. I enjoy doing my hair and makeup. I love picking out clothes and finding jewelry to match. I even paint fingernail art, because it calms my anxiety and it’s actually something I taught myself how to do during my many major leg surgeries in high school.

The problem is, that people who don’t know me, also see this person daily. The problem is, when I park in a handicap parking space because I wear braces on both of my legs under my clothes and regularly dislocate the joints that connect my legs to my back, people see a blonde, well-dressed, make-up 20-something–and let me tell, they are NOT quiet about their thoughts on it. I regularly hear from people that I don’t look ill. I regularly hear that I don’t look like “anything is wrong with me.” I read a meme once that said “When you say I don’t look sick, I’m not sure if you’re insulting me or asking what concealer I use.” It made me smile, because for a second it took away the hurt of realizing people are judging me every day without understanding what is happening with my body, without understanding the sort of pain that can come with my multiple chronic conditions.

People with EDS also struggle because we don’t always have consistency in our reliance on mobility aids or our need for assistance. If I had a dime for every time someone made a crack about me “faking it” because I was no longer using a cane or crutches after working my butt off in physical therapy and having a “good day,” I would be a retired 27-year old. Some days, I have visible braces on multiple parts of my body. Some days, I need my crutches. Some days, I use a cane. Some days, I can’t really walk at all and I need to stay home. If you think the inconsistency is become I’m faking it and not because my body is inconsistent, I will happily trade you!

I think the problem is two-fold because sometimes, when I explain the condition, I’m told that if I’m dealing with that, I couldn’t really look nice or put the effort into my appearance. I’m told I couldn’t be working or doing what I’m doing with my life. It becomes a situation where it is impossible to win, because I’m seeking attention if I don’t make the effort to conceal how poor I feel and I don’t feel poorly if I do conceal it.

I enjoy putting together outfits and wearing makeup. For me, when I look better, I feel better–if only psychologically. When my body feels like it is absolutely falling apart and nothing is in my control, I see no harm in still feeling good about how I look.

There is no uniform for the chronically ill. You are NOT required to conform to someone’s expectations of what a “sick” person should look like. You do not need to justify to yourself or anyone that you do not “look sick” enough so therefore, your struggles are not as real or not as valid as those more visible. There is nothing fair about this situation–it is particularly unfair that it regularly includes providing context for who you are and how your body is simply because its outward appearance doesn’t match its internal composition.

You owe neither an apology nor an explanation for that.

“But You Don’t Look Sick” Oh Well.

Hello Readers:

I was reminded this week about the importance of the phrase “how are you.” More importantly, I was reminded about how important it is to want and expect a truthful answer. Too often, I think all of us are expecting everyone we ask to answer “fine” or “good.” We don’t want to hear about the stress and anxiety weighing them down. We don’t want to know about what is making them worry about getting through the day.

For someone with a chronic pain problem, this is especially challenging. We learn how to say “I’m good” every time someone asks, even if we are hurting more than we can handle.

For the last few months, my pain has gotten much worse than it ever has been. My doctors have really been struggling to find solutions for me. While I know some in this community have a penchant for complaints about doctors, my pain management team is honestly a wonderful team of healthcare providers and I can’t imagine a better group of people to manage my life. Despite that, though, my body is putting up a fight. It isn’t handling everything I’m throwing at it. I’m having to limit activity more than I’d like and say “no” when all I want to do is say “yes.”

I’m not here to offer you medical advice, because you all have doctors for that. What I’m here to do is offer you some advice for facing the reality of that situation. I had a procedure last week that didn’t work. Since then, I’ve been in what I would consider the worst pain of my life–at least a 9 every minute of the day. Today, after 7 hours at work, I couldn’t even move it hurt so badly. Because I have always been a hard worker who never likes to admit I need a break, I waited until the pain got THAT BAD before I came home. I’ve also been steadily working on my graduate degree part-time for about two years while working full-time and serving on the city council in my community. This semester, with all the pain, I didn’t think I could handle attending school.

In both cases, I have needed people around me to reassure me I’m not a failure for needing the breaks. As I’m writing these words to you, I’m on my couch in immense pain watching another documentary on Netflix while I choke back tears–and I want you know right now, on those bad pain days, when you need those breaks, you are not a failure. If you need someone to tell you that, I hope you bookmark this post and read it over and over again. You are not the summation of the days your body needed a break. You are a summation of the days that your body needed a break but you are still LIVING.

So, here are my bits of non-medical advice for bad pain days:

  • Coloring books: I never tire of coloring. We keep a ton of them in our apartment to make the hardest days better. We keep a binder of my completed artwork just like a proud kid. It relaxes me and distracts me from the pain. It’s also productive and helpful.
  • Comfortable clothes: On a bad pain day, I’m always in comfortable clothes. I could probably live in yoga pants if I wouldn’t look so silly at a city council meeting in them. I also like to wear clothes that bring me joy. I try not to underestimate how much joy helps on these days. One example is–I’m a huge Taylor Swift fan so on a bad pain day, I’ll wear a Taylor Swift t-shirt that makes me smile.
  • Binge Watching: I’m only half-joking when I use the word “binge” here. We all know activity is good, but on a day when the pain is too bad, rest is good, too. When you’re having a rest day, never underestimate the value of a good streaming service–even for some bad television. I am personally endlessly fascinated by documentaries. I have seen documentaries on so many topics, I couldn’t even begin to tell you. I love learning and it helps me feel comfort to be learning while I’m resting. But…I also like binge watching reality television. Both are equally valid.
  • Fur Babies: My dog, Essex, is a prescribed emotional support animal and she gives the best cuddles in the world. If you have a pet, you shouldn’t undervalue their presence when you don’t feel well. Essex isn’t quite a year old, so she’s still pretty naughty, but when I’m in a lot of pain, she seems to know and she will cuddle up with me and try to make me better. I just adore the time I get with her.

    Just One of my Pain Day Recommendations–Fur Baby Cuddles (Essex, 11 Month Old Papillon) 

  • Writing: Even if you aren’t like me and don’t want to share with the world, journaling is a great way to release how you’re feeling. You may not be able to make your pain go away, but releasing how your feel emotionally about that pain is always a good idea. I regularly journal and doodle my thoughts about what I’m going through. I recommend getting a pretty journal that you enjoy and just writing down what you’re thinking somewhere you don’t feel any judgment.
  • FIND SOMEONE TO TALK TO: This is probably the most important thing. No matter who you are, we all need people sometimes. You don’t need to feel bad for needing someone to talk to. If you’re reading this and you need someone to talk to, I’m happy to be that person for you. Find a friend, family, someone in a support group–really anyone–you can turn to without hesitation. I can’t even tell you how often I turn to the people in my life. I made a dear friend in Whitewater, Lisa, and even though she doesn’t have EDS, she has such tremendous compassion for my experiences. On the days when it’s the worst, I know I can turn to her when I just want to cry and release how I’m feeling. I never feel like I’m whining and I never worry that she’s going to judge me. We all deserve that level of person in our life.

If and when you have this kind of day, I’m sorry. Today is that kind of day for me. Someone asked me “how are you” today and I told the truth. She told me to go home from work. I listened.

It was for my own good.

You need to do what’s best for you, too.

Gentle zebra hugs always,

Stephanie

 

Hello Readers! I’m so thankful to have this opportunity to share my thoughts through this medium. I think before I get too far into blogging with EDS Wisconsin, I should tell you why you should even bother reading what I have to say (or in this case, write.)

My name is Stephanie and I am a 27 year old EDS patient who lives in southern Wisconsin. I was diagnosed just about two years ago now after nearly 13.5 years of begging doctors to explain my body to me. After my diagnosis, I turned a lot to the internet and made a lot of new friends.

More importantly, though, after my diagnosis, I began writing very candidly on my personal social media accounts about my experiences with Ehlers-Danlos Syndrome and the other medical challenges I have faced. These don’t necessarily just include my experiences with doctors and medical facilities, they also include the social challenges that come with being 27 and chronically ill. I’ve told the truth about being in too much pain to do things I want to do. I’ve acknowledged the frustration and anger that come with “not looking sick,” but feeling like you are falling apart.

Why do I do that? Well, in my life, I have two great passions: advocacy and writing. I’ve had the advocacy bug since as far back as I can remember. If I felt something was a worthwhile cause, I would pour my heart and soul into it. I’ve actively served my community through local government since I was 20 years old. I’ve learned to raise my voice for people who don’t always have a voice or maybe don’t feel comfortable using it. The writing, I think, was a gift I was given to make up for a body that I often feel fails me. I have always found great comfort in words, because even when I am in the most agonizing pain or facing a harsh reality, I can release that through language—and when I can share with the world, it can help others, too.

At the end of the day, that’s really what made me do it more than anything. After a few months of sharing very openly about what exactly I had been through with my diagnosis, a cousin reached out to me about her young daughter–a young daughter who was facing all of the challenges I faced at her age and could never, ever understand. Those same challenges made my childhood painful and haunted me even into adulthood. She was able to take her daughter to an EDS specialist who got her diagnosed RIGHT AWAY. Now she understands what makes her body different. Now she has the physical therapy exercises she needs to hopefully limit some of the damage I know happened to me because we never understood–because my doctors didn’t either, because as I cried on the track in middle school gym, I was told “everyone’s legs hurt” and when my chronic knee dislocations in high school ended in a surgery, nobody asked why that would happen to a 15-year old. That won’t happen to that little girl. If I never help anyone else by sharing my experiences, it will be worth it for her.

But I’m not a doctor and I won’t give you medical advice. I will tell you what I feel and how it affects me. I will tell you that if you are a patient, we probably share experiences. I will tell you that if you are a parent, the greatest thing you can do is fight for your child. Finally, I will tell you that if you are a healthcare provider, the greatest thing you can do is listen.

If you want to know who I am just for the fun of it outside of being a patient, because absolutely NONE of us are patients FIRST, I’m also engaged to be married this summer to a wonderful man. I have the cutest puppy in the entire world. I work with college students in apartment rentals. I serve on my city council. AND, I’m getting a graduate degree in Business Management.

Let me know what you want me to write about. I’m really here to serve YOU!

Together we are stronger!