Unveiling Invisible Illnesses and Health Advocacy
Unveiling Invisible Illnesses – Documentary
First interview down!
I am looking for more volunteers to share their story on struggles with invisible illnesses, misdiagnosis, medical negligence, rare diseases or anyone in the medical field or a loved one who wants to share their side.
mistibludream@gmail.com
Food is medicine! We are destined to age, but why not do it well? This blend of herbs and spices have been around for a long time. The selected blend has many anti-cancer, anti-inflammatory and anti-diabetic properties that also reduce risks for heart disease and brain diseases. Antioxidants, fiber, minerals and vitamins also encompassed in this healing mix.
Sprinkle it on your cereal, oatmeal, toast, or mix it into your smoothie blend. Add it to your desserts, muffins, brownies and baked goods. Top in on sweet potatoes, coffee or fresh fruit. This is an easy way to maximize your health and get natural plant-based benefits.
Carob
Maca
Cinnamon
Turmeric
Ashwagandha Root
Lemon Balm
Nutmeg
Ginger
*Please consult with your doctor before adding spices into your diet if you are on certain medications
Despite not having insurance at the moment, I went to my pacemaker check (priorities) and found that 70% of the time, I am paced and have 7.5 years left on my pacemaker. The bad news is that on July 1st, around 4pm, I went into v tach, which can sometimes lead to cardiac arrest.
The good news is that it was likely a result of having a fever, so we know there was a contributing factor. I went to Wuesthoff Rockledge ER, but as usual was sent away and dismissed. I always tell them I feel it in my heart when I get fevers and because I run low, a high fever for me is 100 and up. Fortunately, I made it to Florida Hospital, who admitted me for two days and put me on two IV antibiotics.
This is why I URGE people who are sick to kindly stay away. My heart cannot handle fevers and when I am sick, I am very high risk for an infection to spread to my heart and would need a heart transplant. Because of this ventricular tachycardia episode, I may have to get a defibrillator. Funny thing is, this is what I told them I needed in the first place, but again… dismissed. As you can see, these are constant frustrations being young(ish) and appearing healthy. I am feeding my emotions with Chipotle and studying for my Psych essay exam, trying not to cry in my salsa. I am thankful that I am here.
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.
When your medical team thinks you are just stressed or maybe have a common ailment and never test you for anything out of the norm, it can be frustrating. You feel lost and alone and just want answers. Sometimes this process can last years!
Up to 12 million people are misdiagnosed each year (1 in 20) and medical errors are the THIRD leading cause of death in the US (CDC, 2006) and kill 150,000 people per year. It is also disheartening when friends and family start to question you and think that maybe it is in your head. I have been there!
I am lucky to have a beautiful support system and people who care about me and I have made leaps with my health care, though I still have much more to discover. Advocacy is so important. Though my hands are tied due to finances and lack of health insurance, I still do a ton of research regularly and do what is best for my health and wellbeing with nutrition, detoxing my body, supplements and cutting out emotional toxins. If you are suffering from anything, I got your back. I am on your side. I am always here. Don’t ever be afraid to reach out.
I remember when I was 16, telling a doctor that I stopped breathing in my sleep. “No. Not at your age. I don’t believe you.”
For the last 5 months, I fought for a sleep study. I was denied because of my age and weight. After making several calls, hours on the phone on different occasions, I finally got approved.
Two days after my test I was called and referred to a pulmonologist. In 4 hours and 13 minutes, I stopped breathing 27 times with an average duration of 49 seconds. The highest duration was 117 seconds!
My point is, don’t ever give up. Keep fighting and I believe you.
It’s a bittersweet sweet moment to get these results back. Part of my is relieved to finally get help, answers and care as well as prove that I wasn’t crazy and to not be dismissed anymore. The other part of me wishes they were right and that I was just a hypochondriac.
