Health, Unveiling Invisible Illnesses

Sweet Dreams with an Invisible Illness

When your bed is your sanctuary, a safe place but some moments steal that from you.

After a long day, collapsing into bed is pure bliss. Your head rests on the pillow and the soft comforter melts over you. As your eyes become heavy, suddenly your heart flutters with each breath. Your chest gets tight, as if someone is crushing you or you swam to the bottom of the deep-end pool. Your left hand and mouth feel like needles and pins while your chest begins to ache. The pain in your left arm makes it impossible not to worry.

You sit up and take slow deep breaths, taking your blood pressure and discovering that it is high. Some moments your blood feels cold as it runs through your body, so you turn on your bedside heater and grab your robe; this isn’t the first time you have felt this way so you know what to do by now. After a few starling palpitations you decide it’s time for emergency medication. You are still trying to prevent going to the ER, where they will simply question your mental health and ask, “are you having an anxiety attack?”

“You’re too young for…”

“No, that’s not common for your age…”

———-

As I sit up, I can’t help but wish my body didn’t betray me so often.

Let me rest.

Let this pass.

Why?

My muscles twitch and spasm throughout and inside my body, like a symphony of fireworks. The ringing [in my ears] is so loud that even as I distract myself with the TV, it still rings louder. Occasionally the chest pain strengthens and waves of vasospasms in my chest put the fear in me of what could happen next. I try lying down again until I shoot up after another intense heart rhythm.

I’m so tired.

Please.

As the meds kick in, I wait to lie back down in fear that another episode will come. One by one, I turn off my heater, remove my robe as my blood circulates better, take a deep breath to see if the tightness has released, slowly inching back into my pillow, and then I drift into sleep only to hope that I wake up to start my day tomorrow.


*From 2017-2019 I went to the ER 54 times. I still continue to end up in an ER once every month. I decided to document/blog (after) an episode that sometimes sends me to the ER; fortunately I was able to manage through it tonight and avoided an ER trip. This is another reason I am grateful that Mayo Clinic found the myocardial bridge, which often causes coronary artery vasospasms at night.

Thanks for listening and learning with me to spread awareness and hope for others that may one day be in my shoes. Never take your health for granted.

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.