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

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.