“I will never forget the day my husband looked at me with tears in his eyes and said ‘you have no idea what it’s like watching the one you love slowly die right in front of you and there’s nothing I can do about it.’
Yep, that’s me. To the outside world, no one knew what was happening to us. I grew up in an abusive and dysfunctional environment. My mom struggled with drug addiction and alcoholism. Due to her addictions, she made very poor relationship choices after she divorced our dad. Both step-dads were abusive and one was a drug dealer. My brother and I endured physical and emotional abuse; we witnessed horrific things and learned to grow up quickly.
My childhood memories included, heads being bashed into mirrors, me being dragged out of bed by my hair in the middle of the night and beaten and strangers in and out of our house snorting lines of cocaine in front of me. I remember several times, finding my mom passed out in the neighbors yard and various places throughout our home. After years of fighting for our lives and unimaginable abuse, our lives were a living hell. My brother and I were incredibly close and he often stood in front of me when my step-dad would charge at us taking a beating that was meant for me. He was my first hero and my everything. When my brother moved out, the sexual abuse started and I once again endured unspeakable things done to me by step-dad.
In addition to the physical and sexual abuse, I was told I was stupid, fat, ugly and that I would end up being ‘a whore on a street corner’ most my life. Because of this abuse, I was broken. I believed I was worthless and my self esteem was shot. I remember standing on the edge of a cliff wanting to die. At this moment I felt it would only give my step-dad satisfaction if I were to jump and die. It was at this point my mindset shifted and I decided I was no longer going to be a victim. At 15, I moved out of my mom’s house, lied about my age and got my first job. I spent my high school years working a full time job. I was determined to prove my step-dad wrong and I started excelling at every job I’d have. My work became my identity and my self-esteem. I knew no matter what, I was going to be OK because I was depending on myself. That is until one day, I felt like I was no longer OK.
It may surprise you when I say this, but I am now thankful for my past. By overcoming the challenges given to me early in life, it gave me strength and survival skills to endure the health challenges that later followed in my life. Once again, I would have to fight for my life.
In my early 20s I had some health issues, and a few surgeries. Cancer and Endometriosis required a partial hysterectomy and took my ability to have children. This was devastating but nothing I couldn’t get through.
When I met my now husband in 2006, I was pretty healthy and could kick his ass mountain biking (although he would tell you he let me). At the time, neither of us were interested in a relationship when we met. We naturally just happened, never really spending a day apart, unless he was traveling for work.
I had a successful career and founded a program that helped low incomes achieve self sufficiency. My job became my life mission to help those less fortunate and hopefully if given the proper tools, they could live a better life than poverty. Perhaps if my mom was given the proper tools, she too could have chosen a better life for herself and my brother and I.
Brad and I had now been together over a year, we loved adventure and the outdoors. I owned my own home, I was financially set, healthy, happy and insanely independent.
Never in a million years would I have anticipated what would come next.
Late 2007, an unexplained sudden neuropathy started shutting my organs down; causing them to not function correctly. The first being my stomach which became paralyzed causing the muscles not to work correctly. It’s a condition called Gastroparesis. I was throwing up several times a day and became very ill, almost dying of complications of malnutrition.
My gallbladder was only functioning at 13% which required surgery to remove. My ovaries started shutting down and a tumor was discovered. My pancreas stopped functioning correctly causing a very serious reactive hypoglycemia (blood sugars were dropping into the low 50s) and insulin resistance. I was also diagnosed with hypothyroidism.
I was very sick and felt like I was slowly dying, at this point I had been through dozens of doctors; quickly losing hope. Each new doctor visit resulted in a series of new guesses, prescriptions I already tried (or was allergic to) and more surgery or surgery recommendations. I recall one doctor in particular who told me I was just depressed and to stop all my medications and start taking antidepressants. I was devastated. I remember telling him he would be depressed too if he had to live with a 24/7 stomach flu. I was depressed because I was sick, not sick because I was depressed.
Surgery after surgery no one could figure out why my organs were shutting down or how to help me. With a strict diet, therapy and supplements, I was able to get back to a healthy weight and manage my symptoms for a while. Just when we would figure out a way to manage my illnesses something else in my body would go wrong. We would call it ‘another wheel falling off the bus’ as my amazing boyfriend stood strongly by my side. Brad had detailed plans for his life and retirement, which was full of adventure and dreams. It didn’t include a girl like me who could no longer keep up with his adventurous soul. However, something happened he didn’t plan, and that is he fell in love. I mean how could he resist right?!
We became a team, and even through the hardest of my health challenges we just fit. He became my biggest advocate and my second biggest hero. Brad made the decision that he wasn’t going to walk away from me and he would rather take the risk and challenges of being with me (even though at the time he thought I might die soon) instead of being without me. He proposed and in December of 2009 we were married.
Finding a new normal, I was learning again how to manage my symptoms and for the most part I was doing OK. Until September of 2010, when I was rear-ended on the freeway causing several ruptured disks in my neck and damaging my spinal cord. This required a cervical discectomy and spine fusion c2-3. 5,6,7. Shortly after this, the level between my fusions failed and I went in for another cervical spine surgery. A Cervical discectomy spine fusion of C4-5.
The second spinal surgery caused damage to my nerves creating a condition called Occipital Neuralgia. This lead to another surgery called a bilateral occipital neurectomy (they cut the base of my head open and removed the occipital nerves). Unfortunately, this surgery did not work and made my migraines worse.
In 2012, my colon completely shut down due to complete neuropathy. A study of my colon was performed where I swallowed 24 markers. A series of x-rays were performed and after 8 days, all 24 markers were still in my ascending colon. This required removal of my entire colon. A complete colectomy was performed. This not so fun surgery was then followed by two bowel obstructions and another open abdominal surgery to fix the rapidly growing adhesions. The latter of which was the night before my 40th Birthday where my husband had planned a huge birthday party for me with family and friends coming from out of town. Instead, my 40th Birthday was spent in the hospital.
In 2014, after years of complaining of chronic debilitating pain, numbness and weakness, my doctor ordered another MRI. This showed that the 2nd cervical spinal surgery had failed and my spine was rapidly degenerating at the levels above and below my previous fusions. After consultation with a Neurosurgeon, a 3rd cervical spine surgery was required. This surgery fused my spine with rods and screws from the base of my head to my mid upper back. Levels C2-T2.
Through all of this I still kept holding onto my job and was back to work within a few weeks of each major surgery. In December of 2014, I had planned a surprise guided fishing trip for my husband. It takes incredible strength to stand by a person as sick as I am and I wanted to do something special for him.
On our way home we hit an elk totaling our car. I was taken by ambulance to the emergency room. Thankfully, they didn’t find anything structurally wrong with my neck. Unfortunately, my occipital neuralgia set in worse than before, causing debilitating migraines, and worse than ever chronic neck pain. This was the final straw for me physically being able to return to work. I had to walk away from a 25 year successful career I not only poured my heart and soul into, it was my identity. This was a devastating loss to me.
In 2015, Further testing revealed I had SLE Lupus. A couple months later I was diagnosed with a very rare autoimmune disease called Behcets vasculitis, which is inflammation of blood vessels. Since blood vessels are everywhere, it effects my entire body. This also causes my body to overreact to minor injury in which we now understand why I have had complications to the now 15 major surgeries I have had. During this time my cardiologist discovered fluid around my heart (Pericardial Effusion) which is caused from Behcets vasculitis which is attacking my heart. I was then diagnosed with a condition called Postural Orthostatic Tachycardia (POTS). As I continued to try the drugs to treat my autoimmune diseases and heart issues, I continued to feel worse and get sicker instead of better. The side effects of these dangerous medications causing even more damage to my poor body. The final treatment option presented to me was a form a chemotherapy. With my current health history, this option would have had substantial consequences to my body. I declined further treatment.
Each day I would focus on finding joy however small ‘joy’ might be that day. I started having better days. I call them better bad days and worse bad days, Sometimes, I was able to spend an afternoon with my husband without spending the next day(s) on the couch in overwhelming pain. In 2016, although already chronic, I started experiencing more spinal and cervical pain. MRIs showed my spine is continuing to rapidly degenerate, and developing scoliosis that is starting to shift from where my fusion at T2 is connected to normal bone. This was another setback, yet I continued on a determined path and also discovered a love for gardening.
Once my husband retired after dedicating 34 years to the military, I was even more determined to get up everyday and do my best to live and experience life. Despite the consequences of pain and setbacks, it was more important than ever for me to live not just for me but for him. After all the years he fought for our country and for his wife, he deserved more than being stuck with a sick wife in a drug coma stuck on the couch. I started working with a Neuropsychologist who helped me with the major depression and illness that had been all consuming to not only me, but also our relationship. I learned to stop focusing on the status of my health and the ‘what ifs’ of the future. I learned the power of focusing on right now, and finding joy in this moment. I had to grieve the loss of the healthy person I once was, and I accepted the new me. The broken, but still beautiful me.
Shortly after Brad retired, we bought an RV. This made it easier for me to travel (walk around, lay down use the bathroom) and we started traveling, having a blast and experiencing more memories together. There are always consequences and setbacks (increased pain) tied to travel and living life. However, it is a trade off I am willing to pay to be able to experience joy and amazing memories with the love of my life.
In spring of 2018, I started experiencing more significant pain in my lower back, causing sciatic pain and often times difficulty walking. Another MRI again revealed more significant degeneration, and also bulging and torn disks that are leaking fluid on my spine with a moderate arthritis. At this point, I was very tired of medical doctors and not very interested in anymore medical tests, procedures, or surgeries. However, my caring primary doctor always felt there was still something more ‘global causing my body to fail’ and after reviewing my latest MRI and physical therapy report, he called me into his office to suggest I have Ethers Danlos Syndrome (EDS) and sent me to a Genetic Doctor who confirmed this.
Ehlers Danlos syndrome is a rare connective tissue disease that weakens the connective tissues of your body. These are things like tendons and ligaments that hold parts of your body together, EDS makes your joints loose and your skin thin. It also weakens your blood vessels and organs. Turns out this is a genetic disorder that I have had my entire life, and it actually explains everything. Why organs are failing and why my spine is rapidly degenerating. I know my autoimmune disease has contributed too but I believe based on my symptoms this came later in my life. Perhaps if diagnosed earlier some of the issues and surgeries could have been prevented. Unfortunately, now there isn’t really any treatment options that can help me at this point.
A couple weeks ago I received the final blood testing report from my genetic counselor that reveals I also have a rare life-threatening heart disorder called Brugada syndrome. This is a condition that causes a disruption of the heart’s normal rhythm. Specifically, this disorder can lead to irregular heartbeats in the heart’s lower chambers (ventricles), which is an abnormality called ventricular arrhythmia. While there may be surgical options in the future, there may not be options for me because of my body’s over reaction to minor injury. I won’t sugarcoat this. Being in my body is a living hell. I wake up every day in excruciating pain. Every piece of me hurts. Some days I can’t stop throwing up, and/or I break out in ulcers in my mouth, throat. Every day is some degree of a migraine, stomach pain, and so on. Some days I can eat ‘almost normal’ food, and other days I have to stick to liquids, or not able to eat at all.
Yet I am thankful. I am thankful because there are now days I can eat, I am now at a healthy weight and most importantly it could be and has been worse. ‘Better than I was’ has become my motto. Having experienced hell from my past and the loss of my health, this has given me an insane appreciation for what I do have. So I will keep focusing on gratitude each day that I am blessed enough to wake up to.
I am surrounded by incredible people in my life. I have an amazing husband who has shown me unconditional love, marrying him gave me a son and a daughter I always wanted, and now three adorable grand babies. I have amazing friends and family who support me. My heart is full and not just of fluid. No matter how much time I am given I know I lived the best life I could despite my challenges. So instead of focusing on my pain I strive to focus on joy. It’s not easy and I fall a lot, but I keep getting back up.”
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