And then, one day, your life gets flipped upside down. You look in the mirror to see the same face that's always been there, except now, her eyes are yellow, her hair is dry and thinned, her bones are frail, and the once strong, athletic woman that always stared back, is now a weak and fragile person you no longer recognize. Yet even then, you can see hints of courage and beauty; and you realize you're staring at this confident woman you've grown to love and be proud of.
I think if I ever write a book, that's how my story will begin, because for me, that's exactly how it happened.
For those of you who don't know me, or for anyone who does, but hasn't followed my story from the beginning... My name is Ali Hallock! I am a wife to my High School sweetheart, Brian, and together we have three beautiful children. In September 2015, after nine years of off and on unexplained health issues and two very aggressive years of declining health followed by the birth of my third child, I was was diagnosed with undifferentiated connective tissue disorder/ lupus and a rare lupus-anticoagulant blood disorder that will keep me on blood thinners for the rest of my life. Those nine years of craziness are hard to explain, mostly because it seems impossible that so many seemingly unrelated issues could happen to one human being; particularly a young 29 year old, like myself. It's a long standing joke around here that I'm 29 going on 80! But also because, it takes hours to explain my medical history to doctors, men and women who actually understand this nonsense that has now become a common language to me. It's been an overwhelming rollercoaster for me and my loved ones and we've lived in this crazy everyday. I surely don't expect anyone else to fathom or understand the depths of my conditions. Hell, I'm still learning about them myself, and I still don't have all the answers! But, to sum things up in a nutshell, those years included multiple collapsed lungs that resulted in a thoracoscopy lung surgery, multiple miscarriages, a hysterectomy, appendectomy, multiple blood transfusions to repair a blood loss of more than half the blood in my body from undiscovered placenta acreta and a secondary postpartum hemorrhage, being diagnosed with a pineal gland brain cyst, reoccurring kidney stones, an MTHFR gene mutation, Ménièr's Disease, a history of anemia, and then a very sudden scare with a pulmonary embolism, just to name a few. There have been many days when I feel like I'm living out my own real-life episode of House!
After my initial diagnosis, in October 2015, I flew from Texas back to my hometown in Utah, to meet with a dear friend who has suffered a far greater health journey than I have. I flew there to learn from her and become a patient to some of her amazing specialty doctors and a biochemist who now manages all my food allergies/ sensitivities and helped set me on the right path of treatment doing as much as I could naturopathically. I know, it sounds totally crazy! Trust me, I get it. I used to think this kind of stuff was like dark voodoo magic hearsay, told by whacko doctors who weren't actually doctors. But then, I stepped into this naturopathic world and my eyes were opened to the real healing that comes from eating the right foods, taking the right supplements, and meeting with actual practicing MD's who run these incredible wellness centers. They live in both realms with the knowledge and authority to treat patients using western medicine if/when it's necessary, but do everything they can to treat their patients using natural remedies, hormones, therapies, etc. Once I flew back to Texas, I started implementing an all organic autoimmune protocol paleo diet mixed with aspects of the lowfodmap diet, I invested in all new 100% pure cosmetics, including all my topical products and oral products like toothpaste, deodorant, floss, nail polish, etc..., we bought a colloidal silver machine to make our own colloidal silver for cleaning/ to take during sicknesses, and I found some incredible doctors at a Wellness Center who started treating my autoimmune condition with very expensive IV therapies and bio-identical hormone replacement therapies that are not currently covered through insurance. UVLrx light therapy IV's piggybacked with nutritional IV's multiple days a week became my weekly routine, and one that I will forever be grateful for. I fully intend to do future posts regarding these individual treatments, all the details and specifics- including photos of my food, cosmetics, and me during my treatments, and to share all the incredible progress I personally made.
Along the way, I found myself in what doctors called, a "stress-induced autoimmune flare", and I never really recovered or found a way to regain all that progress I had made. My body took a huge hit during that flare and things quickly started to spiral out of control from there. In June 2016, I was also diagnosed with autonomic dysfunction (aka Postural Orthostatic Tachycardia Syndrome) and orthostatic hypotension. On July 11, 2016, I was admitted to the hospital severely hypotensive with irregular heart palpitations, dizziness, lightheadedness, and vomiting. After many days of invasive testing, I was diagnosed with a mild, slow functioning adrenal gland insufficiency. Through some of the scans, we also discovered fast growing polyps and a breakdown of gallstones in my gallbladder. Over the next week, doctors prepared my body by stopping my blood thinners and bridging me with lovenox injections, given to me through my abdomen. I was monitored very closely by all my doctors on board, who are now working together as a team to navigate each of my disorders safely. On July 27, 2016, I went in for surgery to remove my gallbladder and have a biopsy taken of my liver to help further diagnose my issue of hyperbilirubinemia. Also known as jaundice. (Yep, the same thing sweet little newborn babes often get. But, let me assure you, jaundice isn't quite as normal on a grown adult, and that intense yellow/orange color defintiely doesn't look acceptable or cute.) The surgery went well but over the passing days, my bilirubin jumped to a scary high of 5.5 and my pain grew more intense, quickly becoming unbearable. I could barely sit up with the help of nurses and family members or move long enough to swivel from my bed to one of those elderly bucket toilets that they placed at my bedside for me to go to the restroom. My surgeon and hospital doctors became increasingly concerned and through imaging from a hida scan, we discovered a bile leak. Bile was pooling into my abdomen and pelvic wall. They immediately took me back for a second procedure. During the ERCP, the surgeon discovered the bile leak was coming from my liver biopsy site. Because of this, he stumbled upon a miraculous finding; the sphincter muscle between my bile duct and liver was completely closed off, causing a major bile blockage. This is known as Sphincter-of-Oddi Dysfunction, which is extremely rare. The surgeon was able to cut open the sphincter muscle and place a stent to reroute the bile flow, allowing the biopsy site to eventually close off and heal. It was truly a miracle to find this and something that will change my life significantly! On September 17, 2016, I underwent another procedure to have my stent removed a few weeks early. Doctors discovered another bile blockage at the stent site which required a balloon sweep and saline flush to clear out the duct. The good news is, my sphincter muscle is still open since they performed the sphincterotomy and my liver biopsy site has now closed off and healed, allowing the original bile leak to finally stop!
So... if I haven't bored you to death yet with all that medical jargon, to bring everyone up to speed with where I am at right now... I am currently waiting to meet with a new hepatologist at the Fort Worth Baylor Family Liver Team. Thanks to that liver biopsy and my surgery, we discovered my gallbladder was chronically diseased and my liver tested positive for fibrosis and the characteristics of a condition called Alpha-1 Antitrypsin Deficiency. The liver team will do further testing and hopefully give us more definitive answers on my liver disease issues. Meanwhile, my actual pathology slides are being sent to Rochester, MN to the Mayo Clinic where my dad and I will be flying November 8th to meet with their autonomic dysfunction and liver departments. We are ultimately hoping the Mayo Clinic doctors will be able to give us any added insight or missing answers, and somehow piece together the craziness that is now my 4,000+ page medical file. I will remain a frequent patient working closely with my hematologist, cardiologist, endocrinologist, rheumatologist, hepatologist, and family doctor, to navigate my many disorders and design the best plan of treatment moving forward.
There is a silver lining in every horror story of my life. There is so much beauty mixed in with all the ugly. I am a fighter. If this journey has taught me anything, it's the inner strength within myself, I never knew existed. It has given me a clearer awareness of others in need, a deeper understanding of what it means to have empathy and compassion for those around me, patience in things I cannot control, and to know that even on my weakest days, I will push through minute by minute and I will survive.
There are no words to thank the beautiful friends and family I have in my life; to acknowledge each individual who has been part of this journey with us. But, please know, we could not have done this or overcome all we have, without you. It has been humbling to be part of such genuine support, faith, and prayer, and to feel so encompassed with love. Thank you from the bottom of my heart. I love you.