*Originally published 5/6/20*
8 years. Wow. 8 years ago today this crazy, life-altering journey began with a headache that didn’t go away. If you would have told me 8 years ago that I’d still be in this fight, I would’ve laughed in your face.
8 years. That’s more than 1/3 of my life that I’ve been sick. 1/3 of my life spent in doctors offices. ⅓ of my life spent getting hundreds and hundreds of tests done. ⅓ of my life spent trying treatment after treatment. 1/3 spent missing out on life.
In 8 years, I have seen about 25 different doctors and specialists. We have spent well over $100,000 (probably closer to $200,000 but we stopped counting a while ago) on doctors, treatments, medications, supplements and resources to help me get better.
I have learned so much in 8 years. I was forced to grow up much faster than most kids my age, and that is a blessing, and a curse. I was thrown into the harsh reality of the politics that control our medical system. I was forced to see people we are taught that we should trust—doctors—may be the ones who hurt us the most in the end. I was shown that we must be our own advocates and fight—quite literally—for our lives in order to get the help we deserve in our society. I also saw how much our society takes for granted—like good health—and how that can make people blind to others’ struggles, and I vowed to never be that person again.
In the beginning of my Lyme journey, I would sleep for 20 hours a day sometimes. Even when I would wake up, I normally just layed in bed and watched TV because I literally didn’t have the strength to do anything else. Back then, it was a miracle if I was awake before noon. Now, I am awake before 9 am every day and ready to tackle my day.
Back then, I didn’t fall asleep until at least 2 or 3 a.m. every night due to “painsomnia”—and yes, this was including taking muscle relaxers, or Ambien, or a whole slew of other medications and supplements that were supposed to make me sleep and lessen the pain. Now, if I’m awake after 11 p.m. that’s amazing—and I only have to take my CBD oil a couple of times a week to help fall asleep, not every night.
At one point in this journey, I had a “dry-heave station” in my bathroom. Every day, for months, I would violently dry-heave—sometimes actually vomit—from all the medications and destruction this all caused my stomach. I kept a towel, my iPad and a pillow on my bathroom floor so that whenever this happened, I could lay down on the bathroom floor and watch Netflix while I waited for the next bout to occur. I also had an enema station with the same set-up when the chronic constipation was bad.
When I was having issues with my second PICC line and my Pulmonary Embolism, I spent a lot of time going to the ER and I even had a staple ER outfit—a wireless bralette so I could get scans done, a big flowy shirt with easy access for vital signs and EKG markers and pj pants.
A couple of years ago, Cassidy had a color-coded chart to keep daily medications in order.
When most people think back to High School, they have all these fun and wild memories of being a care-free adolescent—but not me. My high school memories are doctor's appointments and having herx reactions that left me bed-ridden. My entire sophomore year of high school was one giant episode of depression spent laying in bed, crying into my body pillow, Fred, watching Nicholas Sparks movies and trying to make sense of what was happening to my life.
Almost every day of my sophomore, junior and most of my senior year of high school, someone would physically have to lift me out of bed in the morning. Sometimes other people would also have to dress me, and even bathe me.
During my 6-month bout of periodic paralysis, I carried around a canister of acupuncture needles on my body at all times in case I needed someone to “stick” me and get un-paralyzed. At times, others would have to take me to the bathroom and feed me because I was paralzyed.
My gut was demolished by all the harsh antibiotics and medications it had to handle for years. At one point, I would only eat clementines, brussels sprouts and gluten free baguettes because that was all I could get down. I dropped over 20 lbs in weeks and it took me months (really years, as I am still dealing with this) to get a handle on this. Don’t even get me started on diets and weird things (yes “things” because some can’t even be considered food) I have tried over the years to help me find just a bit of relief.
For years, doctors, and other people, would tell me I needed to exercise and then I would feel better. I hated this with a burning passion. Here I was, being lifted out of bed in the morning and these people wanted me to workout? Yeah, okay. But one day, I tried it.
4 years ago I started doing 3 minute ab videos from Blogilates on YouTube once or twice a week. Soon, the duration and frequency increased. Then about two-years ago, I did the 80-day obsession from Beachbody. Now, I work out pretty much every day. I lift weights (sometimes 140 lbs which is a lot for someone who used to not be able to hold up their cell-phone without being in pain), box, do Insanity Max 30 videos, yoga, pilates and even run sometimes. I discovered that those people were right—working out does make me feel better. I don’t workout to look good though, I workout to make me feel good. It is so empowering every time I go up in weight, or complete a video, or beat a previous time to look back at where I started and see just how much stronger and how far I have come. When I don’t feel good, you will often hear me say “I just need to sweat. I gotta move my body,” and I do. Movement and sweating are my favorite medicine—I love the way they make me feel so much that I am currently working at getting certified to be a personal trainer so I can help others feel better too.
Senior Year of High School Cassidy with Pete the PICC
In the beginning, people would tell us how I needed to be gluten, dairy and sugar free and it would help me feel better. I used to laugh and think that it was just food - it won’t make me feel any different. Once again, I was wrong. Perhaps one of the most important lessons I have learned in 8 years is that food is medicine. If you aren’t eating right, you won’t feel right. Unfortunately, most of the food we consider staples in our country are not the “good” stuff. Back in January, I started the Dr. Rawls Lyme diet guide and it is the best thing to happen to my gut in 8 years. It is an elimination diet of sorts and as my gut heals, I can slowly introduce new foods. I have just recently started adding things back in, but I am moving very very slowly. My best friend just asked me if I get bored and I said no, and that is 100% honest. I could eat this forever. There isn’t a thing I’m missing—not even coffee or chocolate. Yes, I eat the same thing literally every week—I have my meal plan written out and it is the same week after week—and I wouldn’t have it any other way. In this journey, when you find something that helps, you hold on for dear life.
It took me up until recently to realize that the last 8 years of my life are one big traumatic event that will take me years to get over. It’s hard to admit that you experienced trauma, but that is what life with Lyme is. To this day, I still carry around acupuncture needles with me even though I haven’t been paralyzed in months—and I always will keep them with me, just
in case. I no longer take baths because I am terrified of getting paralyzed. I am still super hesitant to ever make plans, and it causes me a ton of anxiety, because there is that deep rooted fear that I will have to cancel because I don’t feel well and I hated being that person. I don’t try to make new relationships out of fear of them not understanding my life, and just because I’m tired of being the “sick” girl. Some mornings, I wake up with a jolt and a panic that I won’t be able to get out of bed that day and I have to do a body scan and assure myself that I’m okay. I am terrified to introduce foods back into my diet—even though my gut is much better—because I am afraid one small thing will set me back to having an enema/dry-heave station set up in the bathroom. I’m afraid to do agility training because I got paralyzed in the middle of doing it one time after almost being paralyzed episode free for 9 months. Purchasing anything—from school supplies to new sneakers I desperately need is a huge issue for me because I am terrified I won’t have the money I need for treatment. This is all trauma. This is what can happen when Lyme disease takes control of your life.
Paralyzed Cassidy being carried to the bathroom by her amazing Brother-in-law, Will.
I recently saw a statistic that said that 1 out of every 5 Lyme disease cases becomes chronic. 1 out of 5. Don’t let Lyme take over your life. Please be aware—do your tick check, wear your tick repellent, be your own advocate!
I have to admit, writing this blog was hard for me. There are so many mixed emotions I feel about Lyme and my life. In fact, I left the doctor's office this past Tuesday angry that I just spent $300 on my appointment and medicine—especially when I have no income at the moment—but as I was belting out my “Fight” song playlist, this warmth washed over me and that frustration turned to gratitude. Gratitude that I have found a treatment that works for me. Grateful that I have savings and am able to still go to the doctor. Grateful for my amazing body that continues to fight 8 year later. Grateful for how far I have come.
This journey has not been easy and it is still not over—but I will admit that the finish line does seem closer. I am grateful for where I am today and all that has led me to this point—from the paralysis, to the Mepron, crying into Fred the body pillow, PICC lines and beyond. I was given this life because I am strong enough to live it, and that is what I intend to do from here on out.
Happy 8 year Lyme-aversary, body. Thanks for being pretty kick-ass, if I do say so myself.
Present day Cassidy ready to beat this once and for all!
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