I don’t know where to start, so I will start with the day my world stood still. On June 11, 2017 I recieved alot of diagnosis that I couldn’t even pronounce. The first being “Postural Orthostatic Tachycardia Syndrome “, The Second, Rocky Moutain Spotted Fever, The 3rd, Lyme Disease, The 4th Dysautonomia, the 5th Autonomic Dysfunction. CDC got involved and all tests was ran. Weird ones. Things that scared me. Antidotes was being ran one after another as my case was so bad with RMSF that I had relapsed so many times that it had already done major damage to me. So let me rewind. 2013 I was told my TSH was normal but once I was referred to my Endocrinologist The real testing came in (never trust a TSH level) I live with Graves Disease as well, hyperthyroidism a Total Thyroidectomy had to be done, so I also live with aquired Hypothyroidism. Understand your thyroid is your *Master control Center* it controls every single cell in your body. So sometimes my hyperthyroidism will rare up and meds have to be adjusted. On August 16th, 2019 I had to have surgery for my *Benign Appearing Esophageal Stenosis * (where my Gastro Surgeon goes in and uses 3ft long dialters to open my esophagus up because I can’t have ANY STERIODS AT ALL. I have these surgeries 2x to 3x a month for life due to Dysphagia also Dysautonomia) He did this for my Big Surgery I had on August 20th 2019 so they could fully intubate me. They used Lactated Ringer solution if you are familiar with that it is pretty much an *Autonomic Protocol for us with low blood volume and I was facing a blood transfusion as well. Also my Anethesia Team was so awesome they addressed my Autonomic Dysreflexia (some of you may be aware of that. And my Baroreflex failure also relates to Autonomic Dysfunction as well). Because He followed these things I has zero complications. My Chronic Pain was handled 100% and my Oxygend Desaturation held up. (I live with that too.) I also live with Syncope and Collapse, Convulsions, Coronary Artery Disease, Hyponatremia, Hypovoliemia, Hypokalemia, Hypoglycemia, and also a History of Cervical Cancer. I live with a Bards Power Port in my chest, I am the first Autonomic Dysfunction Paitent in the Merle Marh Cancer Center for Life and been there over a year. My Teams are at Vanderbilt, also Mayo Clinic is involved. I once ran across an amazing woman when I first got diagnosed and I highly respect her, most of you will know her name.
Lauren Stiles, she is why I don’t fear NONE OF THIS. SHE gave me hope when I once had zero. So you read this thinking “How do I do it?” I wake up every morning and I make a choice. “I am enough, I will do this. even though when I was 39yrd old I surrendered my Class A CDLS, With NEVER ONE TICKET, I Handed my life over with tears streaming, I grieved that life and now? I am humble because I got knocked off my high horse and met some of the most amazing people in my life. My name actually means Warrior and Defender and I live up to ot everyday. The thing I want you to remember the most about Dysautonomia is “We are One Team and NO ONE GETS LEFT BEHIND, YOU ARE DAMN RIGHT WE ARE SPECIAL! So when you are down, stay down, we are all here to surround and protect you!
P.S. Now I can tell you what Dysautonomia is frontwards and backwards. I am still learning. We all are. We are all in this together. Much love to you all! I live with many forms of Dysautonomia. I also lost my kids father in March of 2019, so understand me when I say, I know pain in all forms! I still RISE UP!!!
Note: I am severely disabled.
I did not add everything.