Make every moment countPosted June 1, 2021
My story is so crazy, but everyone probably says that. I didn’t have a parent who watched over my health as most parents do but looking back I can tell it was there.
I was the clumsiest kid ever and had belly aches. I started having symptoms that I noticed when I got stationed in San Diego. The first major migraine I ever had, I got the same day I had my first anthrax vaccine. It was so severe that I had to go to the base ER and they did a spinal tap on me. I had never had one of those. I ended up on bed rest for two weeks with a migraine that they attributed to the spinal tap. My health would continue to decline slowly and in odd ways.
I was blessed and pregnancy came easily. Actually, way too easy, two of them were birth control babies. Staying pregnant was a nightmare. I lost three and had preterm labor with all of them. I only carried one to term. The others were all preemies. I had kidney stones and chronic UTI infections while pregnant with my daughter. I eventually was discharged from the military.
I knew by the time that I was 26 that something was wrong with me. I stopped searching for answers because I was told by the Military doctors, and the VA said it was mental health issues. At some point, I gave up looking for a cause as to why I had all these weird issues and just pushed through the pain. I almost died so many times that my aunt nicknamed me kitty kat because I have nine lives (I have way used those up). I just pushed through the pain, sleeping issues, and severe food issues.
I got a degree in psychology and traveled as much as I could. I was living my best life possible, with lots of catch-up days. I would be admitted to the hospital in a critical condition having low blood pressure and the doctors asking me how I am talking to them and not in a coma. I would get spinal taps always having low fluids. They would stabilize me (kinda) shake their head at me and tell me I am fine and to go home and continue with my therapy. I have been admitted for low blood pressure, severe vitamin deficiencies, and for being so anemic. But I would rest up and keep going.
I became a huge fan of hot yoga. People couldn’t believe how flexible I was, I have always been that way. It made me feel better. Dizzy yes, but I loved it. I pushed through pain and surgeries, but I lived my life.
Even when my health took a massive downfall in 2019, that year I was still traveling everywhere. I kept telling myself if I just get out of bed I can fix this. It’s just in my head. I got bad in July 2019 and I was moving through all the doctors. After kidney stone removal surgery I ended up losing sensation in my left hip and leg. I collapsed. I was admitted for the first of two week-long hospitalizations. I was diagnosed with a pulmonary embolism and severely low blood pressure.
On the second admission, the doctor said something about a connective tissue disease. That was August of 2019. My family kept finding me passed out on the floor. They kept begging me to not get up and do things. Always asking me how I “really” felt, because they realized that all the time I said “I am fine” that I was really in bad shape. I was approved to go to a specialty hospital outside of my state a few days before the beginning of the pandemic shutdown. I got my medical treatment put on hold. My health keeps going down as I waited for things to be open for more testing and safe travel. I have had to have surgery to try to help turn things around. Starting in May of 2020, my doctors started to fight to get me fluids to get my blood pressure stable. On July 30, 2020, I was finally diagnosed with hypermobile EDS (hEDS), and dysautonomia. I finally had a name for what had been making me ill for all of these years.
I finally got a port on October 1, 2020. Due to COVID-19 and shortage of clinics, I wasn’t able to start hydration therapy until finally I got started on hydration in February of 2021 after I had aspiration pneumonia. On October 22, 2020, I also had a feeding tube placed for emergency surgery. I had lost a third of my weight and was so nauseous and vomiting I couldn’t keep anything down, and still can’t to be honest.
I used to think I was just extremely flexible and a yoga master naturally. I now know that people are not supposed to be able to fold themselves in half, literally. Even with how much muscle I have lost I am still a pretzel. I have osteoporosis and denigrative bone disease. My family always knows when I get up and move, they can hear my bones crack and popping throughout the house. I use to get teased about being a vampire because I was anemic and pale. Now I feel like I am a walking skeleton. A ghost of whom I once was. I can barely walk, I can’t drive, it has affected my brain function. I don’t talk on the phone much due to my voice being extremely frail now. The once spunky, vibrant person I once was is just making it through each day hoping that something will change to make this better. But I am not without hope. I feel if I could live most of my life painfully functioning life, then there has to be a way back to that. I want to sit on a mountain top again or swim in the Caribbean again.
After all of this, I am not angry or mad even. I look back at my life, and I think. If I had known, would that had made me not do as much? Everything we experience in life is essential to make us who we are. You remove even a tiny piece of that and you become a completely different person. I wouldn’t want to be different. I live for the moment that I am in. It really does make a difference.
Make every moment count. Definitely don’t put off what you can do today, because tomorrow is not promised to anyone. Let go of old grudges and anger, it takes up too much energy. Love as much as you can, love without expectations.Tags: feeding tube, hypermobile EDS, port
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