Health

Day 5 Postoperative Pacemaker Update 

The past couple of days have been rough.  I have had sugar the last two days when I felt worse so I am hoping eliminating sugar again will help. I usually don’t have sugar in my diet but caved and had some dairy free Ben & Jerry’s almond ice cream. Basically, I have been having PACs, which feel like extra heart beats and bouts of Inappropriate Sinus Tachycardia. I have had these issues prior to the pacemaker that I just got on June 8th (2017) but was unable to take medication due to chronic Bradycardia, a slow heart rate. Now that I have the pacemaker as a safety net, I am able to take medication to help with the other issues. At this point, I have to wait 6 weeks to let the pacemaker fully heal and the meds to kick in and then we can re-evaluate the situation and discuss a possible Cardiac Ablation, which would be my 5th. I would then be 100% paced. I am trying to be positive and hope that avoiding sugar will help calm things down and that my heart is just angry and still needs to heal and adjust. In these last two days I have had PACs every single minute, sometimes more, sometimes less and about 5-10 episodes of Inappropriate Sinus Tachycardia (IST) each day. The IST will kick in randomly, often when I lie down from sitting up. My heart rate goes from 60s to 140s in seconds and my chest feels tight and constricted while my lips get cold and tingle or go numb. It is VERY uncomfortable and annoying, to say the least. The PACs sometimes will feel so strong that they jolt me out of bed. 

 I saw the doctor today and am still paced in the 80 percentile and they were surprised to see how often it kicked in. When my heart rate was higher from walking or with activity, it would have dropped and I could have passed out had the pace maker not been there. That is called Neurocardiogenic Syncope, which was confirmed in a Tilt Table Test I had a few weeks back. I am suffering from Dysautonomia but have not found the right doctor to determine why. I am currently trying to find a good rheumatologist to look into a proper diagnosis. Most signs point to Lupus (SLE) but nothing is set in stone. I definitely can tell how beneficial this pacemaker is and a life changer at that, I just really need to get the the bottom of what is causing my body to suffer. 

I guess I just get worried because I also have had open heart surgery in 2011 for severe Aortic Insufficiency. I had my valve repaired and currently all 4 valves have mild insufficiency. I also have thickening on my aortic valve and a thickened heart muscle with slight left ventricular enlargement. With all of this and an undiagnosed auto immune disease, I sometimes have a hard time keeping my chin up. I also have recently discovered that I have multiple complex cysts on my thyroid, which will need to be biopsied for cancer. 

Never take your health for granted. It is really tough being patient and waiting AND WAITING for answers. In the mean time, I am home in bed and away from my salon. I would love to be back to work and travel and run around and feel free again. I am currently trying to get disability so that I can ensure medical coverage (since there will likely be billions of dollars in cuts for Medicaid) and qualify to go to the Mayo Clinic so that I can get the proper care and treatment that I have needed for a decade or so.

I think that is all for now. Rubix cube still being solved. To be continued….

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.