Unveiling Invisible Illnesses

Pacemaker Check

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.

Health, Unveiling Invisible Illnesses

I Believe You

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.

Body and Beauty, Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – War Paint

I always try to smooth my hair and conceal my tired eyes. I always dust on a peachy pink blush and a fun lip color, regardless of how I feel. This is the mask of an invisible illness warrior. Occasionally, there are days that I struggle to even lift a limb to put on my war paint. On those days when I bare a naked face and join society, I get told over and over and over again, “You look tired.”

When someone looks exhausted or drained, instead try asking if they need anything or offer help, a compliment or anything positive. I wear makeup to hide when my face goes pale while my blood pressure drops and my body starts going numb, ringing in my ears or the sound of my pulse takes over while my vision starts to sparkle or fade. I wear lipstick to hide the loss of color while I brace myself against the wall or casually sit down and continue to smile and listen to your day.

Every day is a struggle, whether it is big or small. On the really bad days, it is a lonely world and it feels like no one understand. When you try to reach out, no one listens because they think you are young and healthy and perfectly fine. It feels dismissive and disheartening, quiet and empty as you hope for tomorrow to be a better day.

Health

America Hates Me

Soon, the president of the Divided States of America will be cutting almost a trillion dollars for Medicaid cuts. As I often hear about the complaint for our tax dollars being spent on helping people like me, I never hear any disgruntled comments about the rest of our federal tax spending. We are just shuffling money from one area to another, from healthcare to Military and Defense. And state taxes? How dare we pay for those roads that we never drive on or the schools that our children don’t go to? America is not free, is it? 


Guys, only 28% of our taxes go towards healthcare. No one bitches about where the other 62% goes. Why is that? Do we need to educate ourselves more?


We are very privileged and I am grateful that I have the opportunity to bitch about getting the wrong Starbucks order, don’t get me wrong. I know it could be worse. However, I know it could be better. 


Almost 60 countries Have Universal Healthcare and some have mandated this since the early 1900s. Virtually all of Europe, included. The United States refuses to get on board. We can’t get it right in 4-8 years. It takes time… flipping from red to blue, hot to cold every decade is a disaster when we can look at several dozens other countries that have been doing it for decades. And no, don’t tell me I need to leave my country. My point is that there are answers out there but we have no humility and are drowning in pride and so divided that we would rather turn one half of our own country into a third world status than to pay a couple bucks a week in taxes for healthcare. 

Oh, but we will gladly pay it for military. Just not for the environment though. Seriously, all this is, is taking a budget and moving it somewhere else and that is screwing over your neighbor. New York was known as the melting pot. Now we just want corn dogs and apple pie.


Here in America, we feel that we work hard and must earn our right to be medically treated, granted we have a trust fund and come from wealth or were gifted with healthy DNA. Well, guess what? I work my ass off. I have never only had just one job. I do not come from a wealthy family and I was born with a rare disease. I have even gone to work in severe debilitating pain or irregular heart rhythms and just smiled and pulled through because I have a family to feed and a roof to keep over our heads. I have gone to work instead of the ER because I needed the money. I sometimes would spend days recovering from this… Shutting down my phone and crawling into bed, ordering pizza for the kids and hoping that I wake up the next day. Everytime I would get ahead I would get knocked back down and have to start over, scraping by. 

If I had my health, I would be rich from how damn hard I work and my infinite ambition. I don’t qualify for health insurance and I usually don’t qualify for Medicaid. Seldomly I get access to Medicaid and get the luxury of medical coverage for about 6 months but it is never enough time. 

I am what America hates. Your tax dollars paid for my open heart surgery. I digust you. This year, you win. Your votes will take away my coverage. And when that happens, I hope that you think about my children and the mother that you will take away from them so that you can afford a sweet new car with heated leather seats and Bluetooth and more military whatever. 


I have had some very close calls earlier this year and was often dismissed because I looked healthy. I have spent 32 years of my life looking for answers on my own while being medically neglected, year after year. Even recently, I had my Tilt Table Test and wore my usual light makeup and rosy blush. It is my daily routine. If I don’t cover my fatigued eyes and pale skin then I will be asked if I am sick or tired all day long. The nurse said I looked great and that likely this test would be a breeze for me. “She still has color,” he said seconds before my blood pressure bottomed out and my heart rate plummeted and I felt nauseous and horrible, to say the least. Maybe it’s Maybelline, because suddenly I was head down and being pumped with fluids. Shorty after, I went into hypoperfusion. I was stabilized quickly but despite how horrible I felt, I was relieved to have it all on paper and proof! Each and every ER visit, ambulance ride and hospital stay, dozens in The beginning of the year, my symptoms were dismissed as anxiety and I was prescribed Xanax and Valium and sent home to die because our healthcare is capitalism at it’s finest. It is corupt and unfair because we built it this way and refuse to do anything about it. We are blind. Wake up! For most, they are not poor enough for assisted coverage but not comfortable enough to swing the extra bill for insurance on their own. It is a lose-lose situation. Maybe heart attack statistics would go down if we weren’t stressing about how to afford a doctors visit! 

Despite my 2011 open heart surgery scar and four cardiac ablations, I still was not taken seriously. Hypoperfusion, or Circulatory Shock,  was diagnosed by my neurologist after my clear brain MRI and EEG of my brain waves rules out seizures and any neurological disorders, as well as my recent positive Tilt Table Test, pointing back to cardiac. I went through so many years of tests and no answers but refused to believe that this was anxiety. I was the happiest I had ever been. Finally some progress but time is running out until coverage will end. Life feels like quicksand. 




At one point, I was diagnosed with Acid Reflux, which I do not have and was given medication for that. I was diagnosed with Anxiety and Panic Disorder and given drugs for that. I do not have anxiety. I refuse to take those drugs. Before ruling out seizures, I had debilitating migraines with auras and was given seizure medication. Turns out that all I had to do was cut out preservatives and dairy and my migraines went away. I can’t help but wonder how many people are sent home drugged up to die with a misdiagnosis. How many “young and healthy” looking women were sent home with a new drug dependency while they really just had a deficiency that could have been managed? 



I have children, a business or two, a fiancé and I work very hard every chance I get, when my body allows it. Just because I look fine, does not mean that I don’t feel like shit and have chronic debilitating symptoms. I would be devastated to give up this fight and be home in bed all day, every day. Sometimes I feel like I should be but I have some much to live for and want to see as much of the world as possible,  even if each step hurts and I have to stop often. I will get back up and keep trekking. I am not giving up. 


Fortunately, my patience fizzled and I became an advocate for myself and finally made progress in a diagnosis to get proper management and treatment. My next step is a pacemaker on June 8th but there still needs to be an answer as to what the underlying issue could be. Currently, I am waiting on results for Elhers Danlos Syndrome and Marfan. I recently requested ANA blood work and tested positive, meaning I have one of 120 autoimmune diseases. 


My goal is to help raise awareness to doctors and medical staff about rare diseases and that when you hear hooves, sometimes it could be a zebra. I want to inspire others to get healthy and educate themselves on nutrition and what our bodies need to thrive and learn how to not walk away from doctors without answers. 


I hope that I can still fight this battle or open someone’s eyes to how wrong this government is. I just want to live. I am not ready to go. Please consider people like me before you strip what is left of our medical coverage. Please think abouty soon to be husband and my three children before you ban me from healthcare equality. I am never going to give up but I may die trying. 

If you still feel like reading, I urge you to read Marie Claire’s publication on women’s healthcare. 

Body and Beauty

New Brew!

  • Lily of the valley: Heart health
  • Beet Powder: Natural dye & Antioxidant
  • Rosewood: Antiseptic, Rejuvenating, Aphrodisiac
  • Rose: Antiviral, Antidepressant, Bactericide 
  • Grapefruit: Disinfectant, Stimulant
  • Sandalwood: Anti-inflammatory, Astringent, Antispasmodic 
  • Shea Butter: Anti-Inflammatory, Moisturizer
  • Coffee Grinds: Exfoliating, Stimulating
  • Allspice: Increase Circulation, Boosts Immune System