Not all Disabilities are Visible

I am sure you have heard the old adage “never 
 judge a book by it’s cover” but seemingly it’s human nature that we do... judge people by the way they look.

Look, I get it. Before I got sick, I would have passed judgement too, if I saw someone who looked like me parked in a handicap parking spot. Not because I am  rude, but because I didn’t understand what a hidden disability was.  I always thought a “disabled” person had visible signs of a disability or was in a wheelchair. Now that I have had the unfortunate opportunity to learn this first hand,  I hope to shed some light based on my hidden disability.

You wouldn’t know by looking at me, that I have a terminal illness. I am a self proclaimed “walking medical dictionary” because of my list of incurable diagnosis that are hidden from the outside world. Hey... don't  get me wrong, I am thankful that I usually don’t look like I feel!  However, when you see me in a handicapped parking spot (which I only use my placard if I absolutely have to )  you might roll your eyes, or glare at me like others have. You may even be like those that have said something rude or left a nasty note on my windshield. Unless I am wearing my cervical collar or using my cane, I may not have any outwards signs that tell you I am disabled.  And, as much as I try not to let it get to me ,  the judgement from others sucks and it can be very hurtful.

You can’t see that I have a serious genetic connective tissue disorder called Ehlers- Danlos syndrome (EDS) that causes faulty, weak collagen, unstable joints and spine and leaves me in daily chronic debilitating pain,  In addition to this, EDS (along with my autoimmune disease) contributes to a series of comorbidities I have.  This has caused everything from multiple organ failure, stomach  paralysis, and intestinal failure ( my large intestine is now removed) as well as Postural Orthostatic Tachycardia (POTS),Dysautonomia/Autonomic neuropathy, Celiac artery compression syndrome (MALS), a very severe reactive hypoglycemia/insulin resistance and a rapidly degenerating spine.

I have had several cervical spine fusions and now sport titanium rods and screws that go from the base of my head to my mid back (as shown in this sexy Wolverinea X-ray). This is causing Occipital and Trigeminal neuralgia. But wait! There's more (reminds me of an infomercial haha), The weight of this fusion on my already unstable, weak spine will cause the need for more surgeries in my future, adding to my now 15 major surgeries I have already had.

You also can’t see the rare life-threatening heart condition I have called Brugada Syndrome. It’s another genetic disorder which causes abnormal electrical activity in my heart. This increases the risk of abnormal heart rhythm’s and sudden cardiac death. So.... that’s fun. ;)

And just to round things out, I have Lupus that takes a back seat to a rare autoimmune disease called Behcet’s Disease. This is a form of  vasculitis that causes inflammation of blood vessels. Since we are made up of  blood vessels this affects my entire body.  My cardiologist believes this is what is causing fluid build up and inflammation around my heart. The result is crushing chest pain and I often have trouble breathing.   See? Walking medical dictionary right?! :)

Unfortunately there is no cure or treatment options for me because the treatment for one (especially my autoimmune disease) effects the others.  My husband explains gently to those who ask about my health “ sadly she doesn’t get better from this, she ultimately dies from it”.  

Generally, I  have accepted my fate,  but occasionally I still struggle because I am only in my 40s and feel like I am 90 ;). Losing my health has given a new perspective and appreciation for the time spent with loved ones and the memories we create . I can’t change my health,  but I do hope to contribute to hidden disability awareness.     

My husband thinks my reaction to their judgment should be a 5-10  minute lecture complete with handouts explaining all of my medical conditions, surgeries,  and  the likelihood of my outcome, so they can feel as bad as they made me feel from their judgment.  However until I get the courage and energy,  here is a public service announcement that not all disabilities are visible. 

❤️Laurie 
You can find me on Instagram https://instagram.com/asecretfighter

My Story

The name of my BLOG " The Secret Fighter" comes from a poem
our daughter Brittany wrote about my hidden illness.

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. 

Let’s start at my beginning that leads to my happier ever after.

I grew up in a very 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 and we both witnessed things that were so horrific we learned to grow up very 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.

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 and others.  No one on the outside knew this and my real dad wasn’t around at the time due to circumstances. 

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 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 was 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 moms 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 would have. My work became my identity and my self-esteem. I knew that no matter what, I was going to be OK because I only had to depend on me now.   That is until one day... I felt like I was no longer OK anymore.

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.

 

March 2006, the first day 
Brad and I met .

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 income 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 now being together for 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 it. 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 40s) 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 and loosing hope. Each new doctor visit resulted in a series of new guesses, prescriptions that I already tried (or allergic to), more surgery, and even surgery recommendations that would have killed me if I hadn’t did my own research. 

I recall one doctor in particular that 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.  

My man and I,
rocking the hair
net!

Surgery after surgery no one could figure out why my organs were shutting down or how to help me.  As a last resort Brad found a Homeopathic doctor that helped me regain the nutrients my body desperately needed.  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 ahhmazing boyfriend stood strong 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 that could no longer keep up with his adventurous soul. However, something happened that 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. 

Who knew they
 used Bicycle chains?!

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. 

Occipital Neurectomy surgery. Sexy and I know it ;)

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 ex 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.

Celebrating my Birthday in the hospital 
with my Brother, Niece and Nephew

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. 

                

Loving my new accessory!  

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. 

Yep, out fishing Brad AGAIN!!

It takes incredible strength to stand by a person as sick as I am and I wanted to do something special for him. 

My husband's awesome driving
 skills  and our car
 saved our lives!

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 that I not only poured my heart and soul into, it was my identity. This was a huge devastating loss to me.

Reaction from my 3rd surgery.

Years later, I discovered this

 is due to my autoimmune

disease, my body 

overreacts to minor injury

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 also discovered fluid around my heart (Pericardial Effusion)  which is caused from Behcets vasculitis which is attacking my heart.  

In addition I was diagnosed with  a condition called Postural Orthostatic Tachycardia (POTS). 

I officially became a walking medical dictionary! ;)

My snuggle buddies

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.  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, I felt this option would have had substantial consequences to my body. I declined further treatment.

I was loosing hope and the energy to fight. I could no longer see my future. I got my affairs in order and wrote the hardest letter in my entire life. To my husband, my love of my life, saying good bye. 

Fresh greens from
 our organic garden

Being as sick as I have been, I honestly felt with all my heart that if I continued on this path of western medicine I would die.  So I started researching and studying all things nutrition and learned the best way to heal MY body naturally.  I weaned myself off of 75% off my prescriptions,  started juicing  organic vegetables everyday, eliminated all processed foods, refined sugar and practiced gratitude every day.

 Each day I would focus on finding joy however small “joy” might be that day. I started having better days. And when I say better days I mean I haven't had a "good" day in years and  I can't tell you the last time I have actually felt good. 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 set back, yet I continued on a determined path of natural healing, meditation and also discovered a love for gardening.  

After my husband retired after dedicating 34 years in 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 often paint as a way of coping with my
illness. This piece called
 "Love the Broken Ones"
.She is broken. She is beautiful

I started working with a Neuropsychologist that 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 of I am willing to pay to be able to experience joy and amazing memories with the love of my life. 

I was in one of my worst flair ups in years when this photo was
taken in October of 2017. I had not eaten in over 8 days and in an enormous amount
of pain.  We had a blast creating new memories and enjoying nature.

In spring of 2018, I started experiencing more significant pain in my low back, causing sciatic pain and often times difficulty walking. Another MRI again revealed more significant degeneration, and also bulging and torn disks with a moderate arthritis. More tests revealed my joints were moving more than normal causing my spine to keep shifting out of alignment. 

Furthermore my feet have significant osteoarthritis, bone on bone degeneration and several fractures due to hyper mobility of my joints (EDS)

  

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 Ehlers 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. My husband will say... “she doesn’t get better from this, she dies from this”.

A couple weeks ago I received the final blood testing report from my genetic counselor that reveals that 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 surgical options in the future, these 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 and other areas ( caused from Bechets ). 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 that 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. 

Now to bring you to my happier ever after.  Yes, being in my body is a living hell, however 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 that has shown me unconditional love, marrying him gave me a son and daughter I always wanted, and now three adorable grand babies. I have amazing friends and family that support me. 

My heart is full.... and not just of fluid ;). No matter how much time I am given I know that 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.

I am often told "you don't look sick".  I thank

them, because I would hate to look like I feel!

Although, I will admit sometimes having a

 hidden illness is difficult when doctors won't take you

seriously because of the way you look.

Health brings a freedom most seldom realize until they no longer have it.  I hope my story inspires you to cherish yours ❤ ️Laurie