Health

The Bendy Life – Ehlers Danlos Syndrome

Ehlers-Danlos Syndrome is a group of inherited disorders that weaken connective tissues.  Connective tissues are proteins that support skin, bones, blood vessels, and other organs.

My childhood consisted of chronic stomach issues with pain and constipation, never ending growing pains, Supraventricular Tachycardia, easy bruising, joint hyper mobility, sleep disorders, chronic fatigue, abdominal wall hernia, autonomic dysfunction such as temperature and blood pressure regulation, headaches, frequent urination, mouth ulcers, heat intolerance, just to name a few!

I could pop my hips out of place like it was nothing. I could twist my arms over 360 degrees and freak people out. Once, I bent my arm around in my physical education class and showed the teacher, asking if I could see the nurse. I often tried getting out of gym class due to my heart rate in the 250 bpm range from Supraventricular Tachycardia (SVT) that did not get discovered or diagnosed until I was 15. So, I am in 3rd grade and when the teacher sees my arm, she was horrified! Guilt set in and I instantly said I was kidding and ran off.

I was also an expert and hide and seek. I could bend and fold into any tiny space and would always hear everyone give up on finding me because I would fit into such unexpected places.

When I got to my teens, you can also add that I had sleep paralysis, migraines with aura, vertigo, dizziness, POTS, adrenal surges and crashes, sleeping in school, ADD, brain fog, endometriosis, Inappropriate Sinus Tachycardia, depression, IBS, MCAS, and anxiety.

However, I was a healthy young girl. Everything was missed and overlooked because this was all normal to me and having such a rare disease is always too far outside of the box for most doctors.

It was not until I had 4 cardiac ablations, 1 endometrial ablation, 1 open heart surgery for aortic valve repair and a pacemaker for neurocardiogenic syncope and sick sinus syndrome, hundreds of ER visits and dozens of hospitalizations later that I got diagnosed with Ehlers-Danlos Syndrome. After desperation and never any answers, I was the one who asked the doctors to diagnose me after I stumbled upon this rare diagnosis from research and from my Mother in law suggesting that I look into it. My entire life I was told that I was young and healthy and a hypochondriac. When I saw the Beighton Score and had 8/9 I knew this was me. This all finally made sense. Then, I presented it to my doctors. 33 years.

My goal for this blog is to share my story and daily life hacks and struggles. I want to support others and inspire people to advocate for themselves. If I did not research and push for tests and get copies of my medical records I would still be lost because no doctor took the time to dig and most won’t.

When they hear hooves, they assume it’s a horse but rarely it is a zebra. We are the zebras and we need to raise awareness for EDS so that we are not dismissed anymore. We are in an unfortunate gray area in the medical field where we have no specialist to go to, just multiple doctors for each of our many  ailments and most doctors have to google it.

I plan to have many more blog posts on specific health issues that come with EDS and to share as much information as I can.

Health

What is normal?

Throughout my entire life, I have been living with chronic ailments. I remember being in  grade school screaming in pain from stomach issues. 


I remember when I was 7 years old, running around and my heart felt like it a hummingbird and I would get dizzy. The adults said that it was normal to have your heart rate increase when you run around. My softball coach in 4th grade would tell me to keep going. What they did not know is that my heart was in the 250 beats per minute range. When I was 15, the school nurse finally caught on. Supraventricular Tachycardia. They said I would outgrow it but it got worse and more frequent. It would happen 20 times a day. It was exhausting. But, this was my normal. 


I have always suffered from migraines, chronic pain, depression and fatigue. Every day I had a complaint and after years of being told I was just a hypochondriac, I stopped bitching about it. This was my normal. Normal was insomnia. Normal was waking up at 4am every morning in pain. Normal hurts. I’m normal. Suck it up, Misti! 

I discovered CBD Oil after a recent two month long streak in and out of ambulance rides, ERs and hospital admissions. “Everything is fine”, they said. “This is anxiety”, they laughed. I never felt worse and I thought my life was coming to an end. I went back to the hospitals I had been to, down to the the medical records department and got copies of every single record from the last two months. No, I was not having anxiety attacks. My neutrophils were dangerously low, lymphocytes high, my bun/creatinine was very elevated… to name a few. My 30 day heart rhythm monitor was a scary mess. The nurses and doctor mocked me out the door, dismissing my concerns. “Everything is normal.” Needless to say, my third electrophysiologist is the one. Third one is a charm, I guess. Everything was not normal. My body was giving up on me. I was withering away and living in fear of each day being my last day on Earth. I have three amazing children and the love of my life by my side to fight for. 


*Photo by Arlene Jacobs

After countless hours of research and second and third opinions, I demanded to get my ANA tested, which determines if you have an autoimmune disease. Though, they thought it was excessive and unnecessary, they placed the lab orders anyway. It was positive. 


Had I known this 15 years ago, before 4 cardiac ablations, one open heart surgery, preterm pregnancies, endometrial ablation, hysterectomy consults, years of self medicating with marijuana and wine, chronic episodes of depression, decades of minimal sleep to the point where I had sleep paralysis, endless pain and so on…. I could have gotten the right treatment and care and changed my diet and learned how to manage my health conditions. 



I should not be here. If I listened to my doctors and did not put up a fight, I could be dead. If I did not take aspirin each time I began heart attack symptoms, I may have not made it. I was having vasospasms, spasms of the arteries and vascular system, which was constricting blood flow to my heart and extremities. I was going into circulatory shock from sinus node dysfunction. And to think, they suggested Xanax and sent me out the door!

I have not been back to the ER in a month, since my last hospital admission, which lasted 5 days of no answers. I imagine it is a number of reasons: new heart medications, CBD oil, bedside essential oil diffuser, removing sugar and preservatives from my diet, finding  out my allergies and triggers. CBD is a huge anti-inflammatory and helps with pain, nauseous, spasms, and sleep disorders, which are a few of my medical issues. I sleep so much better! I can keep my heart rate down and blood pressure lowered and stay calm and relaxed. My menstrual cycle is no big deal now. Leg cramps and pain throughout my body is now managed and I am in much better spirits! CBD oil is such an important alternative to the slew of pharmaceutical drugs that have been pushed my way. 

Every day is a new day. I take each day at a time, treat my body right and eat healthy. I still have a lot of pain and now need a pacemaker but at least I am getting answer. I even got genetic testing for Elhers Danlos Syndrome which is also something I pushed during my endless research since I fit the criteria very well. 

Doctors look and me and say I look great. I look healthy. I look fine. 

I cannot stress enough how important it is to be your own advocate and educate yourself. Put up a fight! Take care of your body.