I'm back! Sorry for the lack of posts again. I swear I am trying to be more consistent. My baby turned one a couple weeks ago. I like throwing big birthday parties for my girls. I feel like they're gypped by my illness. Most parents probably feel this way (good parents at least). I always want to do more for them. I don't want them to miss out on anything because of my illness. So, to make up for it I throw big birthday parties! I made a very cute butterfly cake and was surrounded by non-Paleo food and completely fell off the "Paleo Wagon". I was already teetering before the party. It was just the final straw.
My health has been up and down since (probably even before if I'm honest). I think the Paleo Diet helps my stomach issues but I don't have it all figured out yet. I was dealing with more fatigue and arm weakness. I fell off the wagon, ate some Gluten, had more energy, but the rest of my symptoms are back with a vengeance. My digestive system does not want to work at all, my heart is randomly racing constantly, and I have a TON of inflammation in my head. I know I need to go see an allergist, but honestly I need a little time to psych myself up for another appointment with a new Doctor. It's a little exhausting starting over with a new doctor, especially when you have conditions that are nearly unheard of.
Which brings me to my next topic... October is Dysautonomia Awareness Month! Spread the word Folks! Most sufferers of Dysautonomia fight for years before they are diagnosed. They go from doctor to doctor, receiving incorrect diagnoses, before they finally make their way to a specialist who puts the pieces together. Even then, it's an uphill fight. So, here's part of my story. I've had symptoms as long as I can remember so I won't bore you with the entire life story. I'll start in 2005, when I was in college and began searching for answers to my health problems.
Enter, my Knight in Shining Armour! My now-husband and I met in 2005 during our Freshman Year of College. I was going to a gym in a serious attempt to fight off the Freshman Fifteen, which may or may not have been brought on by too many nights of drinking beer and eating fast food. I somehow convinced this handsome guy to accompany me to the gym and he immediately knew something was not right (I was still convinced I was just out of shape). After lifting weights, we went to the track to run laps. He would run, I would struggle to jog. The grandma's were lapping me. He asked what was wrong and I shrugged and blew it off. He's a persistent guy though so it wasn't long before I was going to a doctor for a check-up. I wore a 24-hour Holter Monitor and the results were not good. I had crazy heart rates and was put on a Beta-Blocker (the first of many). I eventually was not happy with the lack of answers I was getting from my Primary Care Physician so I went to a Cardiologist. He informed me I should eat more. Ha! Trust me, that is not the answer! I just turned into a chubby, sick girl.
I then went to a Cardiologist, who didn't know what was wrong and then moved out of state. I then, self-referred myself to a third Cardiologist/Electrophysiologist in a neighboring state. I finally felt like I was in good hands. He performed a number of tests including a Stress Test, Echo, EKG, blood work, and we did a long-term, event monitor. It was a long time ago so excuse my lack of details on this one. I believe I wore it for about a month and I pushed a button when I felt symptomatic, which was pretty constant. I then was able to call a number, put the machine next to the phone, and it magically relayed my readings to the doctor. Technology is amazing! After trying every medication under the sun and finding no relief, it was decided I should have an Ablation on my Heart. I have a hard time even talking about this because it is the worst and scariest experience of my life. Wires were threaded through my groin and neck, into my heart. I immediately went into tachycardia, which sent the entire room into a frenzy. I was still awake at this point and completely strapped to a table so I couldn't move. After some medication slowed my heart rate, the mapping of my heart started. I'm not sure what was technically going on, but it literally felt like the doctor was stopping and starting my heart over and over again. It was miserable! I was relieved when the doctor announced the mapping portion was over and they would be putting me to sleep to do the ablation. They administered the anesthesia and told me to relax. The doctor then started the ablation and I had what felt like a seizure. My entire body was shaking out of control and I started yelling. Apparently, I have some issues with anesthesia because I was still awake. A nurse came and sat by my face to talk to me through the procedure and I made it through with a lot of praying. I remember them wheeling my bed into an elevator to go to recovery and then I fell asleep (after the surgery was over). Fantastic!
I was sore for a while, but went home the next day. And my heart raced non-stop for the next three months. The doctor was stumped. His suggestion, let's try the ablation again. My suggestion, why don't we go to Mayo Clinic. I won. One week at Mayo Clinic and I was diagnosed with Postural Orthostatic Tachycardia Syndrome and Neurocardiogenic Syncope (both are forms of Dysautonomia). That appointment was in January of 2008. After all of those appointments and a surgery on my heart (that was actually healthy), I finally had some answers. My heart wasn't the problem at all, my heart is simply responding to a bigger issue. I'm still struggling to determine what that bigger issue is. Honestly, I'll probably never know, but at least I know some ways to better handle my symptoms. I know not to let an uninformed doctor put a Pacemaker in my body (that is helpful to some POTS patients, but not my case). My heart is perfectly healthy.
Because of a lack of awareness, I was diagnosed with anxiety, basically anorexia although he wouldn't come out and say it, was giving countless medications that would not help, and had a surgery that nearly left me with a pacemaker. This was all at the hands of specialists! The medical world let me down. I needed help and was failed time and time again. There's no single person to blame. It's an obvious flaw in the system. How can people who specialize in heart conditions not be aware of an illness that directly affects the heart? It's mind boggling and extremely disappointing. And my story is nothing compared to some of the others I've heard. Dysautonomia needs more awareness! I can't say it enough! A healthy person does not wake up one day unable to stand because they have anxiety. That's ludicrous and it's insulting that a great many Dysautonomia patients are labeled with simply having anxiety when it just isn't the case.
I don't want others to go through this doctoring struggle. We already struggle every day! Doctors who are knowledgeable with POTS have compared our quality of life to that of a person suffering Heart Failure. We struggle just to make it through a simple day. We want to enjoy this one life we get to live, and instead we are forced to battle an uninformed medical world. I don't expect every doctor to know about every condition, but I do expect at least one out of three specialists to be able to correctly diagnose me. I absolutely expect that a specialist will not put my health and life at risk because they are uninformed. If I sound a little crabby about the situation, it's because I am. If I can save even one person from going through what I went through, I'll die happy. It's the entire reason I started this little blog. So, I'm attaching a couple links to some amazing websites. Please view them and share them. I will now crawl down off my soap box and continue on with my mundane life! :-)
Dysautonomia Information Network
Dysautonomia International
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