New episode! Episode FOUR available now. Links below:
The #myedschallenge for today is “if you could rid yourself of one EDS symptom, what would it be?
Without a doubt, I would rid myself of heart issues. I will gladly take the pain, muscle aches and spasms, joint hypermobility, subluxations, migraines, gastrointestinal issues, brain fog and so on. I have always known my life with heart issues.
I remember playing on the softball team in 3rd grade, complaining of my heart racing. “Keep running, kid. That’s normal,” my coach said. It wasn’t until I was 15 when we realized my heart rate was hitting the 300s and I had SVT and WPW. I remember being in my 20s and dancing with my friends, periodically going to the bathroom stall to slow down my heart. I just wanted to be normal.
Between multiple surgeries, hospitalizations, ER visits and doctors appointments, these heart issues have robbed me of so much of my life. These heart issues affect me every day.
My heart valves leak and have hypertrophied, requiring an inevitable 2nd open heart surgery one day. I have already had 4 cardiac ablations and refuse to do a 5th as it would make me 100% pacemaker dependent. My aortic root is dilating, a common issue with EDS. While I worry about my heart rhythms, blood pressure, arrhythmias, and valves, I also have worry about the possibility of aortic dissection.
I put my hand on my heart, and though battery operated, I am still so grateful that it pumps. I am grateful that I am here to be a mother and a wife, to share my story, to raise awareness, advocate and educate. I am grateful to breathe in the warm Florida air, even while my heart races and my chest aches. But what I wouldn’t do for a healthy heart….
May is Ehlers-Danlos Syndrome Awareness Month. WTF is EDS? I made this graphic to explain more about this congenital connective tissue disorder.
Why are there so many symptoms and complications? Because your body is made of connective tissue, therefore it is a systemic clusterfuckery of the body. “Have you tried changing your diet?” Actually, I have to eat a strict diet to avoid worsening symptoms due to sensitivities, so I already have cut everything out and I even eat kale.
Unfortunately, EDS is not something you can beat or recover from. There is no cure or treatment. You can manage symptoms and usually that requires multiple specialists: cardiologist, pulmonologist, neurologist, gastroenterologist, ALL THE OLOGISTS.
Not all EDSers are alike. With everything, there is a spectrum of various levels of severity. We call ourselves zebras because in the medical field, healthcare providers are trained that if you hear hooves to expect a horse, not a zebra; we are the zebras that are often missed. Awareness is important so that 1 in 5,000 are not dismissed and medically neglected because they “don’t look sick.”
Related blog posts:
I am so excited to announce the upcoming launch of a show with my dear friend Amber, called The Invisible Diaries! The show will be shedding light on invisible illnesses. We are going to interview guests as well.
If you are interested in being on our show, please emails us at email@example.com and introduce yourself.
Stay tuned and follow us on social media for updates on our official launch!
Published in the April 2019 The Beachside Resident
Hypermobility is very common with EDS. There are many, many other health issues that fall under the umbrella due to this collagen defect. Imagine your joints are like rubber, frequently popping out of place from even just a hug or rolling over in bed. Sometimes these joints stay out of place or wear down. It is a painful disease to many.
This does not only affect joints but can also affect your organs.
We are all different and we call ourselves Zebras because in the medical field, doctors and nurses are trained that when they hear hooves to look for horses not zebras. This mentality has caused me to go undiagnosed and medically neglected for my entire life, up until I had genetic testing last year. Despite my heart issues and frequent ER visits, being young and seemingly healthy has had me labeled as drug seeking or having anxiety attacks.
The reason why is because EDS and dysautonomia (dysfunction of the autonomic nervous system) does not show up on routine blood work. I have never done drugs, besides cannabis, and even after open heart surgery and a broken sternum I did not even finish my pain meds prescription. I have been treated as if I were an IV drug user, because in my area that is the only reason someone of my age would have this extent of damage to their heart. I am so incredibly thankful to now be taken seriously with a diagnosis, but it is bittersweet because this syndrome is progressive and for me, my heart is always at risk. In my recent echo, I have developed a dilated aortic root. This is beyond scary to me because EDS, especially cvEDS comes with aneurisms. Dealing with this type of diagnosis as well as chronic pain and illness is mentally exhausting.
I am passionate about awareness is because it took so fucking long to be heard. I suffered for so long not taking proper care of myself and not knowing the correct treatments. I have been called a hypochondriac by exes and have hidden behind a mask for years. I want others to know they are not alone and I want medical professionals to see us.
We are programmed to praise positivity and joy while shunning grief and sadness, which isolates those who need help. As children grow after years of being told to behave and smile, they become adults wearing masks. Our bodies suppress anger, pain, sorrow, suffering and negative emotions that we are not allowed to acknowledge. These buried feelings grow with no release as we walk rampant, showing our teeth to the world to presume only happiness exists within us.
Relationships deepen through vulnerability. People need to open up about their fears, not tuck them away to pretend life is perfect. The world sees strength defined as being tough and resistant to anything other than joy. Sensitivity is seen as weakness.
People need to open up about their sorrows, not hide them with a smile that says “I’m fine.” People need to discuss their anger, not bottle it up. People will explode. People will crumble.
How can anyone heal in an environment that doesn’t allow basic human emotion to breathe?
We are all responsible and need to change our way of thinking so that we can make others feel safe to talk and reach out.
Our culture is designed to suppress half of our basic human emotions, leaving us depressed actors.
It is time to face the reality that life is not perfect and human emotions are not linear. Life is hard and pretending that we are all okay is dangerously exhausting.
Stop telling people to suck it up or that they will be fine. Ask how you can help, listen, and pay attention to the subtle details. Check on your strong friends, your happy friends, and your quiet friends.
Take off your masks and let others know it’s okay to not be okay. It is okay to cry, to grieve, to be angry, to feel lost and to feel frustrated.
We are not robots.
We can’t heal by dreaming of rainbows to swallow our pain and trauma. We heal through a process. We prevent crumbling by expressing emotions. We cannot continue to build a stigma that negative emotions equal weakness. It is time to change the rules.
Mornings are hard. When you think of Sundays, you think of sleeping in and waking up to the sun finding it’s way to to you. You think of sitting up, a nice stretch and a moment to admire the open window sharing hints of a beautiful day.
The reality is that you wake up from pain. And you have woken up several times already but you hurt too much to go back to sleep and the sun is up now, so you may as well get out of bed. Lying in bed hurts. It isn’t this relaxing thing where you can leisurely sprawl out in bed and feel like you are on a cloud, melting into your mattress. No, you have to move because one position makes your tailbone go numb and another hurts your collarbone and lying on your stomach makes your back feel broken.
So, now you get up and everything pops back into place. Almost everything. Your left hand and lips are tingling and numb but it only last a few minutes. You walk to the bathroom, holding on to everything you pass for stability so that you don’t fall. Even when you sit down, reaching to wipe is excruciating and demoralizing. It breaks you just glimpsing into the future, wondering if are going to need help wiping your own ass one day. Then, as much as you want to crawl back into bed and melt into your significant other, you quietly walk out of the room so you can find something to do and walk off the pain of sleeping.
Your head is killing you and you are nauseous as if you are hungover. As you walk to the kitchen, everything fades away and you can’t see. Your body starts to feel fuzzy and go numb, just like before you pass out. You don’t typically fully pass out so you know you can just keep walking through it as long as you hold on the way there. You are a pro and have smiled and held conversations while on the brink of passing out but you know it passes and this is your norm.
When pain levels are high, your morale is low. Your dreams and ambition slide over to the back burner. Sometimes they even get put away into Tupperware to decay in the back, hidden behind the fruit. Sometimes the sunshine creeping in through the window looks so far away. But you just get through this. You hold on to the idea of your next good day, whenever that may be. You find hope in new remedies and whatever ways you can try to have control over your health. You find hope in the people who support you and your loved ones.
*On the pain scale of 1-10, I have never been under a five. My one is a five. I am not wanting sympathy but what I am wanting is to be honest about how I feel instead of hiding with an autopilot response of “I’m fine.” I want to raise awareness for people like me so they don’t feel alone, and for people without chronic pain so that they can understand their loved one or friend. We live in a world of sucking it up and smiling through the pain. We are suppressed and depressed with a bottled soul. It isn’t right. Be real and let others be real so they they aren’t lost and alone.
Toxic positivity is a thing. We are raised to suck it up and smile. Well, fuck that. I want my friends and family to be real. I want to know about your shitty day. We all have those days. I want genuine. Raw. I don’t want you to fake anything for me or anyone else. Let people feel safe! Break the stigma of bottling shit up and autopilot responses like “I’m fine, and you?” Mental health is an epidemic because we all participate in hiding, making everyone feel alone. It’s time for change.
When bad days turn into weeks. When your strengths are suffocating. When your dreams drift too far. When nothing seems fair. When tears turn into fears. When you get lost. When you feel defeated. When you stop feeling. You aren’t alone.