Anniversary

It’s been a year. A year ago today I was headed out to the sunshine filled beaches of Hilton Head North Carolina with my mom. Cooler packed with beer and snacks, towels rolled up, sunscreen on, and chairs with an umbrella that wouldn’t blow away in the wind rented. We strolled the beach, enjoyed the water, swam with other people, and then BAM. The world changed. Everything about my life was about to take a radical left turn. It’s pretty shitty, as I think back on it, that the lifeguards didn’t post a warning about jellyfish in the water that day. It’s even worse that a beach lifeguard was unfamiliar with a Man O War sting, as they can be life threatening, and gave no real care or response to my plea for help. The amount of venom that I got injected into my hip was a dangerous level. I have yet to find a picture on the internet or a story of someone getting hit where I did and having the level of swelling and burns and being just fine and dandy.

This past year has been a nightmare and a curious adventure. I’ve learned more about myself and found strength I didn’t know I had. I moved out, and back home as a result of my injury. I changed jobs out of necessity, worked through extreme pain and memory loss, experienced unemployment, learned how to deal, once again, with a medical world that refused to look at the patient instead of the symptoms, and have been told MANY times to look at psycho therapy… I found strength as did my family in never giving up or accepting an unacceptable diagnosis (or non-diagnosis rather). I’ve battled insurance companies, doctors offices, billing offices, even the government for unemployment. For the first time in my life since I was 11 years old, I don’t have a job of some kind. I’ve had to learn to deal with isolation, loneliness, and, naturally, situational depression. I’ve gone through anaphylaxis, allergic reaction, reactions to medications, procedures that didn’t work, medicines that made me worse, the hell of coming off a medicine, and fighting to take myself off opioid pain medicine because I hate them so much. I’ve been through my first colonoscopy, another endoscopy, and enough blood work to probably save the Red Cross from needing blood donations for a whole day. I’ve had to re learn how to walk twice, learn to drive again, regain balance, find some level of mental functionality amid pain, and developed a real understand of the frustrations people with Parkinson’s experience. [Hand tremors suck] I’ve lost my taste buds and my sense of smell. I’ve lost the ability to cook for myself, to bake for fun, and even to go shopping. I’ve learned to use a cane, a walker, a wheelchair, and so much more. I’ve experience IV Ketamine to stop my CRPS. I’ve learned the daily pain of a chronic condition like that can bring back on.

I’ve traveled to see a doctor, fought with an urgent care doctor over a slow onset anaphylactic reaction for treatment, and finally been validated when it was confirmed by a research doctor that YES THAT CAN HAPPEN. I’ve been diagnosed with a rare disease that barely anyone knows about and even less understand, again. I’ve become 1 in 6 million (2 rare disorders at the same time with no known connection yet) and found solace in support groups of people dealing with the same things at me.

I’ve been through drug withdrawals, insomnia, 7 days with only 2 hours of sleep a night, exhaustion hallucinations, gastric problems and stomach pain. I’ve experienced tremors and muscle spasms, fainting spells, fading out spells, cataplexy, laughter instead of cries in pain, loosing the ability to eat, watching everything I try to eat come right back up, not being able to swallow water, and even not being able to get anything down. I’ve been put on and off around 40+ medications, had 4 MRI’s, 16 blood draws and over 300 labs, 3 minor procedures, 1 week long infusion session, 25 aqua physical therapy appointments, 90 doctor, hospital, urgent care visits, 1 upcoming Port placement surgery, and 1 very long year.

I’ve learned to be grateful for the small things. I’ve learned to be happy I have parents who can step in and step up to care for me. I’ve been fortunate to have them spend weeks of sleepless nights watching over me to keep me safe. I’ve also given up. I’ve given up about fighting, I’ve tried to throw in the towel and quit, but I have family who won’t let me. I have people who won’t let me quit yet. I’ve found a doctor who not only understands the difficulty of unknown and rare diseases and other people not believing them. I have a doctor who is willing to commit time to me, and spends his free time working to find the root of my disease. I am fortunate.

Today is the anniversary of the start of a really rough journey. There is no clear cut path to healing for me, there isn’t even really a plan. There’s no cure, no real “management” solution, and no real expert out there. But there is a sign for me. This is my chance to learn. This is my chance to become even more determined to go to Med school and change the way we treat patients. This is my chance to work as hard as I can with whatever little energy I get in a day, and never give up.

So maybe by this time next year, this post will not be about the chaos of the previous year, but the achievements and the plans for the next.