This is an incredibly difficult story for me to relive. The only way to get through life with a debilitating disease is to slightly pretend it does not exist. Retelling this story brings my daily struggle to the forefront of my mind which is something I strive greatly Not to do. Thank you for your continued patience as I weave this tangled web of a story for you all. By going public about my disease I hope and pray that one day I can lend my strength and peace of mind to other young ladies dealing with Auto Immune Diseases. You are not alone.
Nobody likes being sick or feeling bad in anyway. Most people get the luxury of floating through life without experiencing any real trauma or major illness, lucky ducks. Then you have an odd majority who constantly get ill and obtain more than the average of their fair share of bump and bruises. Considering this page has a title most of you can’t pronounce, I’ll give you one guess which type of person I am (if you need more than one guess, pull your head from your rumpus and go home).
SuPer long story as short as possible. During my teens I struggled with extreme pelvic pains, ovarian issues and cysts (I got it from my Mama). As I went through my twenties the pains altered over the years and got more sever. Doctors believed my pains were from Endometrial scarring building up along my internal organs, but due to the nature of the disease there is no real way to confirm the diagnosis without surgery. Endometriosis is a hormonal and immune system disease in which cells similar to that which line the uterus (endometrium) grow outside the uterine cavity. For basic information on Endometriosis I enjoy using Wikipedia for the bare bones details. For a deeper understanding and learning how to cope with Endo I prefer reading things that my fellow bloggers have to say. EMLWY (Endometriosis: My Life With You), is a blog I love reading because of the fact that its author, Shireen, gets incredibly personal at times. She also has an extensive list of other Endo Blogs on her Endometriosis Library Page! There is an incredible power and strength that comes from being able to combine forces with a community of people who understand Exactly what you are dealing with.
Pardon, I got extremely side tracked. On the road to an endometriosis diagnosis other wonky things began happening with my body that alarmed doctors. The fabulous healthcare system in California (oh yes, that is sarcasm you are hearing in my tone) is set up so that no one can get help for what ails them without going through the proper channels of referrals, specialists, and the all mighty process of elimination. After spending almost 8 years complaining of female and pelvic pains and not finding anything wrong, my body was all of a sudden displaying obvious non-ignorable signs of being under attack and doctors could not ignore or explain what was going on with me. I went through years of specialist hopping until I experienced a Game Changer.
What seemed like out of nowhere (but in actuality was a slow progression with a major climax), the entire left side of my body began to go through sever malfunctions of all different sorts. I began experiencing shocking, tazer like sensations near my left pelvic/hip bone. The shocking pains would hit with no warning, knocking me off of my feet and leaving me either screaming or passed out. Within 3 months the shocking sensations blossomed from my pelvic area to spread all along the left side of my body with the worst points at my knee, hip, and shoulder blade. The pains came without any warning, there was never anything I could do to prepare or defend myself against the attacks. I call them attacks because that’s what it felt like, something inside of me was Attacking me from within as if trying to rip its way out of me. I would get delirious from the pain at times and find humor in comparing my situation to the movie Alien. I spent 8-12 months living in paralyzing fear of moving and triggering the pains, going from one doctors appointment to the next. I ended up in a Neurologists office due to the fact that I was experiencing episodes of “shutting down” and convulsing after passing out from the pain. The “Shut Downs” were incredibly odd even to me because I was slightly aware of my surroundings and what was happening but unable to move or respond. A slow heavy wave would wash over me, I could physically Feel it coming like goosebumps on your skin when a shadow passes over your sunny spot. Extreme exhaustion would accompany the heaviness, as if I was resisting the effects of a large chug of Nyquil. Almost as if I was temporarily paralyzed, my arms, eyes and head would droop as if I could no longer support my own weight and all I could do was sit there (or lay there, sometimes I would slide out of my seat from lack of control) until the episode passed. If I was with someone who could help me then I would get dunked into a scalding hot bathtub and it would shock me out of the episode.
After an ECG (electrocardio test, brain scan) the Neurologist reassured me that I was not experiencing seizures and explained to me what happens to the brain when it deals with long term chronic pain and the stress that goes along with it. Basically what was happening was my brain was getting exhausted from constantly battling the chronic pain and simply shutting down at a certain hour instead of waiting for me to go to sleep. My ECG also showed 4 out of 8 markers for narcolepsy, which adds to my confused brain chemistry (I have spent a lifetime of being tired all day long and getting energy once the sun goes down). My body was speaking loud and clear, it was time for me to wise up and listen. Once I was paired up with a Rheumatologist the doctors began testing for auto immune diseases starting with the ones that showed the fastest signs of deterioration; lupus, multiple sclerosis, and rheumatic diseases, and immediately began finding answers. I was diagnosed with Ankylosing Spondylitis in March 2014, 4 days after my 30th birthday. My first reaction, as I’m sure many of yours is, was what the heck is that?! After I had the Doctor repeat it a few times, I later went home to Wikipedia Ankylosing Spondylitis of course. AS is an inflammatory arthritic auto immune disease that causes bone fusion in your SI joints. I burst into tears when I first heard my diagnosis, not because i was scared of the disease (I was still unclear as to what AS even was), but because I felt an enormous sense of relief that I now knew what I was facing. After almost 10 years of physical struggles, I had a name and I was one step closer to learning how to cope with the rest. What I was reading about AS was super scary, yes, but I knew that if I could last 10 years dealing with the unknown, I could handle the rest of my life even better because I had found strength and comfort in my new found knowledge.
After the 2013 struggle with doctors and diagnosis’s I spent countless hours contemplating how I would adjust to this drastic change. At 29 years old I had my life exactly where I had wanted it. The perfect job that kept me ultra busy and that made me feel smart, needed, and loved. An honest relationship with my family, and a couple of close friends that I could trust and spend time with when I was able. I had struggled with medical stuff most of my life, I never in my wildest dreams imagined that having a disease like this would alter my life so greatly. I spent a lot of time and effort trying to hide what was happening to me from my friends, family, and work mates. There is only so much illness and medical drama a healthy person can handle hearing about. I experienced great losses. The loss of my body’s basic physical functions, my job, my freedom, and lots of people that I had considered friends. I had to learn to let my pride go and learn when to ask for help. After a lifetime of helping others around me, I now needed the favor reciprocated and the reactions of the people I had surrounded myself with surprised me greatly. It was shocking how little my “friends” were willing to be there for me, even for something as simple as coming over to give me company and comfort. I received earfuls of empty promises that I waited daily to be fulfilled. In my heart i truly want to believe that my friends wanted to be there for me, but were just too scared of what was happening to want to be around me. The slightly bitter side of my heart feels that the people I had called my friends simply were not who I thought them to be, that people don’t actually care about someone else unless it can benefit them in some way. I needed assistance for just about everything, moving around, errands, doctors appointments, tasks outside of the house, etc. The experience was beyond humbling, but it was necessary in order to open my eyes to peoples true intentions. My love is too great and my energy is too precious to be wasted on people who can not be there for me in return when I need it.
I felt like I was losing myself. My fear, frustration, loneliness, sadness, anger, and bitterness was consuming me, changing me. I no longer wanted to give people the chance, no longer felt that they deserved it from me. After years of being silent as people used and mistreated me I could no longer hold my tongue. My filter was completely gone and everyone in my war path was getting a dose of my “tough love”. I pushed what few friends I had left away because I no longer trusted anyone, even my family. I allowed the pain to consume me and stopped being active all together. Months passed where I have no recollection of how I spent the time other than making efforts to eat so I could take the medications that were given to me. The second I entertained the thought that life was not worth living like this I recognized that I had to make a drastic change in order to survive. It was Christine Miserandino’s Spoon Theory that finally knocked my soul back on the right path. Finding The Spoon Theory was my salvation (you can read The Spoon Theory by following the link at the bottom of the page). By January of 2014 I had a new game plan. Life as I knew it was about to change greatly and if I wanted this life to be a success I had to be open to the changes.
The first step I took was removing every source of stress from my life……The Puerto Rico Chapter Coming Soon.
Intrigued? Want to know more? Well hold your horses, more is COMING SOON! Please be patient with me, this is an incredibly emotional story for me to share. I appreaciate your continued interest and your compassion!
I praise any woman who is strong enough to battle a lifelong disease with or without support, and I am humbled by anyone with the ability to bare all and share with the world. Shireen’s blog, EMLWY and several others have given me the courage to become more open about my diseases. The first step was learning to slow down and to practice self compassion. The second step was learning to be more open and honest with myself and the people I choose to keep in my life and purging myself of outside energies that do not lift me up or benefit me. Our minds and bodies are incredibly powerful and intricately linked. Peace of mind and rest of body is important no matter what sort of illness one is facing. Yes, everyday is a struggle, but life is beautiful and worth it.