Health, mental health, Unveiling Invisible Illnesses

Health PTSD – Warrior Status

There are some evenings when I can’t help but think about the nights when my heart would struggle to beat. By the end of the day, my blood volume would be so low because I was never educated on my health conditions or how to manage my health and had no idea what was going on. I would go all day without drinking water. I avoided salt because I assumed that’s just what you do, especially with heart issues.

Here is a quick run down about my health history:

Postural Orthostatic Tachycardia Syndrome was just a small fraction of what I had going on. Last January (2017) I was still very in the dark about my health. Even though I already had four cardiac ablations for Supraventricular Tachycardia, caused by being born with an extra electrical pathway in my heart that caused rapid heart rates and extra beats, I still never had a real team of doctors who had my back.

Wolff-Parkinson-White Syndrome made it very difficult to have a fully successful ablations due to the extra pathways in very difficult and rare spots of my heart. My electrophysiologist often noticed two P Waves on my EKGs. The P Waves are the little squiggly line that shows where the heart beat originates.

After four cardiac ablations, I needed an aortic valve repair. This is done with open heart surgery and cracking open my sternum. My aorta valve was regurgitating blood flow backwards. This caused shortness of breath and other issues.

Having the ablations did not fix my rapid heart rates. It reduced them but I still got them and often. I needed medication to slow down my heart rate but I also had bradycardia (slow heart rate) so I was unable to take medication for about a decade. I would bounce from 45 beats per minute and jump up to 150, all day. I was diagnosed with Neurocardiogenic Syncope and Sick Sinus Syndrome. This means that my heart would randomly plummet, while doing simple tasks, causing me to blackout or set my heart into a scary arrhythmia. I developed a dysfunctional sinus node. The sinus node produces your heart beat, like a natural pacemaker.

Back to 2017… As if nothing mentioned above wasn’t scary enough, including my brief encounter with cancer, January 5th, 2017 was the scariest day of my life. Unbeknownst to me, my blood volume was dangerously low and I was dehydrated and creeping up to pre-diabetic status due to a careless diet and love for sugar. I wasn’t taking care of myself the way my body desperately needed me to. My heart went tachycardia, which wasn’t anything I wasn’t used to, but then the rhythm changed to chaotic. I was going into a potential fatal arrhythmia.

We called 911 and my husband (boyfriend at the time) held me in his arms as my limbs fell to the side, with no blood flow. I was going into circulatory shock. I told him I loved him and to tell my kids I loved them and the blurry lights in the distance arrived closer. Suddenly I felt my heart convert back to a normal (but fast) rhythm and I could breathe again and move my arms. This happened again and again, several times a week, for months.

I was continuously dismissed, labeled with anxiety and even prescribed acid reflux medication for heartburn. I did not have heartburn, I was having chest tightness and pressure but this was just a small example of being disregarded and carelessly misdiagnosed. Eventually, I had a 30 heart monitor on to capture every episode. The monitor was hidden under my shirt and robe. My body would shut down before the doctor’s eyes as he mocked me and stated it was just anxiety and an EKG or heart monitor wasn’t necessary. Despite my history and the fact that I was the happiest I had ever been, I was always sent home or they couldn’t catch an episode.

Six months later, I finally found an electrophysiologist who set me up with a pacemaker that I needed ten years ago. My neurologist also looked at the tests and confirmed that what they thought looked like an anxiety attack was my body going into circulatory shock. I can also finally take heart medication to keep the fast rates at bay, now that I have a pacemaker.

Like a thick gloom, blanketing you and swallowing your body, the memories take over. There were times that I literally begged for my life. I could barely breathe and my arms and legs lost color and I couldn’t move. My body would start shaking vigorously as I took small rapid breaths. “Please help” was all I could pathetically mutter to the unconcerned nurses who assumed I was a drug seeker.

Those six months still haunt me, especially at night. No doctor EVER thought to ask, “Why does this young woman have such a unique health history?” No one thought to do genetic testing or to ask questions. They all let me slide through the cracks.

I’m here and I am still fighting. I will always fight, until I can’t anymore. I am here to stand up for others like me. I am here to inspire others to advocate for themselves and to not give up. I am still here.

Even though my story isn’t over, I still continue with sleep apnea and my aortic valve has hypertrophied. I will need open heart surgery once again, with a pig valve and possibly in the near future. I will need a new pacemaker years to come. I don’t have insurance so my sleep apnea is not being treated. I don’t know what to expect in the future but I do know that I will love every moment that I am given.

  • Educate yourself on your health conditions.
  • Get every medical record and keep a file
  • Print information on your rare diseases or disorders to give to your medical professionals
  • Find a support group or therapist
  • Eat healthy and stay hydrated
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.