Oh what a year

A year ago today my life changed forever. A year ago today I embarked on my journey of gratitude and rewiring the brain. It was not an easy journey to begin, but I am so grateful I have stuck with it and am now feeling better than I have in the last nine years. 

A year ago, I was working a dj job when my stomach bloated like it had never done before.  The pain was so bad that I could not stand up straight. I could barely speak or walk—which went really well as I was supposed to be hosting the event and was on a date (sorta). After the event, I drove home in tears, called my parents and they went into action—it’s sad that we pretty much have a plan for when these things happened. When I pulled up, my dad met  me in the driveway to get me into the house where my mom had peppermint tea, essential oil and my heating pad waiting for me. Now, through the years of Lyme and suspected Endometriosis and Crohn’s, I’m used to a good ol’ fashioned stomach bloat, but this one was a bit different.

At this time, I was not seeing a doctor for my Lyme. The months prior we had been focusing on my gut issues (which ended up being a total bust) and I had put myself on the Dr. Rawls Lyme diet. At this point, I had been on the diet for a few weeks and was actually feeling a bit better—I had started at the University of Maryland, as well—so this setback came out of nowhere. 

The next day, I remember being just completely and utterly crushed. So tired of feeling good and having a setback. So tired of no one being able to “fix” me or tell me why I feel this way. So tired of this unpredictable, all consuming life with a chronic, invisible, incurable illness that is Lyme disease. This was my rock bottom—well one of them as I have had too many too count on this journey. 

It was here when I reached out to my Lyme community to try and find out where I should go next. I knew I was not going back on antibiotics but I didn’t know which integrative medicine team to go to. My “Lyme encyclopedia” friend, Jess, and I talked a lot that day and she convinced me to go back to my previous integrative medicine doctor who Jess was still seeing. This conversation with Jess really changed my life. 

She told me about DNRS and rewiring the brain. Essentially, when you have been chronically sick for so long your brain can get “stuck” in the fight-or-flight mindset and you never truly get to heal—this is where I was. I started doing research. I listened to podcasts and read blogs and books and even listened to my brother (if you know us, you know it is a rare feat). He showed me where my body and brain were compartmentalizing the trauma and pain I have been going through and helped me come up with ways to release and reset. 

So, a year ago I started writing in my gratitude journal and meditating. My gratitude journal was a hot mess when I first began. I begin with a list of what I am grateful for, then what caused me stress that day, how I can “fix” that (not real things just fixing my mindset on them) and end with my intentions for the next day and my mantras. Maybe about 5 thing to be grateful for and 7 things that caused me stress. But over the last 365 days, my gratitude list outnumbers my stress list every night—and sometimes I find no stress that day. It is an amazing tool for me to see where I was, where I am and hopefully where I will be a year from now. 

The mediation went kind of the same way. I started off small with only 3 minutes in the morning and at night. I had tried meditation before, but always had trouble sitting still (because of pain) and keeping my mind quiet (hello anxiety) but this time I was determined. I did not let myself falter and tried not to judge myself when my mind drifted. Slowly but surely I got the hang of it. I added on time and have not missed a day. I know people have been saying it for years and most people (including myself) have laughed it off and said “that doesn’t work for me” or “that can’t work”—but I have found once I really set my mind to it, it works for me. Through meditation and breathwork, I have been able to stop pain from taking over my entire body. I have been able to open my mind up and listen to what my body actually needs. I have been able to focus on what I already have and the good around me. 

I was also able to put my doubts aside and trust my medicine 100%. I have seen seven different lyme doctors in the last nine years—and before that, it took over 10 doctors to get me  a diagnosis. It is safe to say I do not trust the medical system. So whenever I have entered a new treatment, I have always had my doubts that it would work. What I have learned through my research and life, is that those little tiny doubts can actually ruin the whole thing. You have to trust the process the entire way through (unless it is something that is actually harmful)—even if you don’t you have to say it out loud to make yourself believe you do because if not, why are you spending all of this money, going through this journey to just stay stuck where you are? 

So I have been back with my integrative medicine doctor for almost a year and I still love her and trust her completely. I had not realized how sick I was until I went to see her last year and both she and my mom were shocked that we could see my ribs—apparently I had lost 20 lbs in a short few months for the second time in my Lyme journey. We discovered I had parasites and once we started treating that, I felt like even more like  a new person. 

I know last year was a shit show of a year for everyone—but I actually healed and grew more than I ever have. It is so sad that the quarantine gave me and my body the time we needed to finally heal, to rest and to discover what we are actually capable of when life does not revolve around “what hurts today?” or “am I going to get paralyzed today?” I was able to finish my first two semesters at UMD—keeping my 4.0—while also getting my personal trainer certification and becoming a coach at OTF. I have gained so much strength, physically and mentally in the last year. I even became vulnerable enough to start working on my emotions with my therapist because—from what we have learned—the trauma from Lyme has stunted my emotional health. I have opened my mind to so much. I have been trying to unlearn all the bullshit our society has ingrained in us to really try and see what is going on around/in me. 

I’m not saying I am 100%—heck just last night I had a bloat attack—but I truly believe that a year ago I started on the right path in my journey to get me where I want to be. Like I said earlier, it was not easy. I had hit rock bottom several times throughout the last few years—being 20, paralyzed and having to be taken to the bathroom by others is a pretty low point—but this is the one when I stopped feeling sorry for myself and started truly fighting for myself. I have not broken my diet in over a year—not once. I have not missed my meditation—heck one day I was running late in the morning and did it while I was receiving my acupuncture. If this year has taught any of us anything it should be that health and wellness are not guaranteed. We can’t just sit back feeling sorry for ourselves or not being proactive. It may be hard, but health and wellbeing are the only thing we have semi-control of. So take that control, let go of what no longer serves you and go out and make this the life you want/deserve—from a safe and social distance. 

We Can Do Hard Things

Wow. The last few months have been such a whirlwind. 

I started working at OrangeTheory Fitness at the end of June and I absolutely LOVE it! I actually look forward to going to work. I love being the one who motivates others and helps them achieve their goals—I even love it when I have to wake up at 3:30 am to open the studio. 

I also started my school classes this week. For the first time in what feels like forever, I did not dread school, I looked forward to it. For the past eight years, I have absolutely dreaded school—not because of the work (I actually enjoy that part)—because my body has been so unpredictable, keeping up with classes has been extremely hard. In fact, this semester was supposed to be the first time I have taken a full course load since 2015, but with the pandemic, I dropped one to keep my mental health in check—my eyes and brain can only handle so much Zoom. 

When I first thought about dropping a class I was a bit upset—I felt like a failure. I feel the best I have felt in a long time, so in my head, I should be able to take a full course load. However, when I add in work, nannying my niece and nephew and living through the world falling apart, I realized I am not a failure—I’m a freaking warrior. So what, it may take me a little longer to get my degree. The important thing is that I am getting one—slowly but surely. 

Like I said, I have been feeling pretty good. 2020 has been pretty crappy in all other ways besides my health—I feel like there is a dark, twisty metaphor in there somewhere. I began the year by starting the Dr. Rawls Lyme Diet which has been life changing. I have slowly been reintroducing foods in and figuring out my triggers. 

I also started my gratitude practices this year—215 days to be exact. Every morning and every night I mediate. Each night, I also write in a gratitude journal. Throughout my days, when I feel any sort of symptoms coming up, I take deep breaths, repeat my mantras and get myself under control. This all stemmed from learning about rewiring your brain after having been through the trauma of a chronic illness. 

Getting my body out of the “fight or flight” response and into “rest, reset and digest” is what, I believe, has caused the most improvements.  This practice has allowed me to get closer to my own body and really listen to what I need, want and what I don’t need. 

At the beginning of the year, I had dropped a bunch of weight in a really short amount of time, and was showing other signs of parasites, so we have been treating that via Chinese medicine. I still go to the doctor every other week for acupuncture and to update my medicines—I’m now onto two giant pill boxes because I have to take medicines at so many different times a day. It is amazing to think about how bad I felt in December to how good I feel now—for me, Chinese medicine is  the way to go. 

I have also been learning more about Chinese medicine and the importance of food through the book “Healing with Whole Foods: Asian Traditions and Modern Nutrition” by Paul Pitchford.  If you’ve never been to a Chinese medicine doctor, or had acupuncture, it will probably be a little weird, but it is kind of mind blowing when you put all the pieces together and see how everything impacts one another. 

On top of this, I have been tackling some big things on the mental health aspect. I have seen therapists off and on throughout this entire journey, but I have been with my current therapist since my paralysis attacks in 2018. She is the best! 

Recently, I’ve been tackling a lot, dealing with the traumatic impacts Lyme has left me with. I always hate saying “trauma” because our society has such a stigma around the word—only soldiers or those in horrific accidents can use it—yet, anyone can experience trauma. Living with a chronic, invisible, incurable illness that is not even recognized by a lot of the medical field can leave a lot of scars—physically, emotionally and mentally. 

Here’s an example. A couple of weeks ago, I took a bath (by myself and without a bathing suit) for the first time in 2 years. Now you’re probably like “um what?” so I’ll explain. When I was going through my constant paralysis attacks, I got paralyzed in the bathtub. My mom couldn’t get me out, I almost went under and we had to get my dad to get me—talk about embarrassing and traumatic.  From then on, I did not take baths, and when I showered, I had to wear a bathing suit in case I got paralyzed in the shower. 

It took me months after my attacks to shower without a bathing suit and it has been years since I have taken a bath. However, a couple of weeks ago, I decided to turn my shower into a bath. Once I got out, I freaked out. My family did not understand the big deal but for me, this is a huge milestone. I will always be terrified of getting paralyzed, but each time I do something like this, it feels like winning back a little bit of control over my own life—and that is a great feeling. 

Did you see what I said there? I said “my own life.” For the past eight years, I have not had a life. I have not been living, I have been surviving. Surviving and actually living are two very different things. I used to go through the motions of living just to get through my day and everything I did—or did not do—was dictated by my disease. Now, everything I do and do not do is still dictated by my illness, but on my own terms—I am in control. 

My final note for this update is to let you know I have lost someone dear to me—the Cassidy pre-Lyme Disease. I used to say “I felt like the old me” but I came to the realization that the “old me” is never coming back, and that is for the best. The “old” Cassidy was so naive to not only the world, but to her own body. I now know so much about the horrors of the world—the corrupt medical system, suffering and pain, how horrible people can be—and that has all shaped who I am today. Without this journey, I would not have found my passion for helping others, my love for fitness, my connection to my Self. This journey has not been easy, but I wouldn’t trade it, or the outcomes. 

As my new favorite philosopher Glennon Doyle says (if you haven’t read Untamed yet, do it. It will change your life) “We can do hard things.” 

I have done the hard things—I am still doing the hard things and will probably always be doing them—but I am better. I am living. I am healing.  

You’ve been bit—now what?

It has been a crazy few months. Between the heartbreaking coronavirus pandemic and amazing social justice movements, it has been hard to focus on anything else—including Lyme disease. That doesn’t mean that other things aren’t still out there though. 

In fact, I can’t count how many people have contacted my family members or myself in the past few months because they–or someone they know—had found a tick on them. The ticks are out there, and boy oh boy are they hungry! 

So, I thought I would share this post on what to do if you find a tick! 

It’s always important to remember the best defense against Lyme disease is prevention. Now you may be thinking “what exactly is prevention?” 

Prevention is staying clear of places ticks like to hang out—they love tall grasses, woods, bushes, leaf piles and any wet, moist areas. Prevention is wearing light colored clothing (so you could potentially see a tick crawling on you), long sleeves, hats, pants and long socks with your pants tucked into your socks—it may not be the most fashionable, but it is better than ending up in Lyme hell. 

Prevention also includes wearing tick repellent—your normal bug sprays don’t repel the ticks. I recommend this spray for your skin and then Permethrin for your clothes and shoes. Permethrin is a chemical that you DO NOT put on your skin, but you can treat your clothes in it. You can either spray your clothes down, or wash them in it, and your clothes are now safe from ticks for a few weeks. 

The most important step in prevention is daily tick checks. When you come in from outside, immediately put your clothes in the dryer (to kill off any ticks that could have climbed on) and then hop in a shower and do your tick check. Check out this video to find out how! 

Now , let’s say you took all the precautions yet still find a tick during your check—what now?!. It’s important to not panic and to follow The LEAF Program’s TICKS steps

T is for tweezers. You want to get tweezers with a flat bottom that make it easy to slide across the skin, under the tick. 

Next you will—I—insert the tweezers underneath the belly of the tick. It is important to grab the tick by the nose (the hypostome) and not the belly. If you grab it by the belly, there is a chance the tick could regurgitate any bacteria into you. 

Once you have inserted tweezers under the belly, you should pull straight up with—C—constant pressure. There are tools out there that want you to twist and turn the tick—do not do this. You want to pull straight up in one swift motion to ensure you get the entire tick out. 

Now the next 2 steps are probably new for some people but they are KEY here. You want to Keep the tick. Yes you read that right. Do not burn the tick. Do not squish the tick. Do not put vaseline on it. Do not flush it down the toilet. “But Cassidy, why not?” 

Well 1. Ticks have been proven to live in water for several days so if you flush it, that thing may not die and could crawl up the drain and go after it’s next meal. 2. We do not want to destroy the ticks because we need to then—S—send the tick off for tick testing.

 I have gone on and on here over the years about how inaccurate the Lyme disease tests are—heck I helped get the law passed in MD that ensures doctors inform patients that they can still have Lyme disease even if they get a negative test result. Yet, there are places out there that will test your tick for you and find out what bacteria it could have been carrying so you are better equipped so that when you—bonus S—see a doctor, you guys have a course of action. And yes, it is vital that you see a doctor no matter if you are showing symptoms or not. Ask them to put you on preliminary antibiotics (for western medicine) or preliminary herbs (for eastern medicine). 

Disclaimer: you should still perform the K and S steps even if the tick was not attached to you. Sometimes people may find a tick crawling down them, or on their pillow or wherever and think nothing of it. However, that tick could have been attached to you and just dislodged and is finding its way out. You can never be too cautious. 

I hope you never find a tick on you or a loved one, but if you do, hopefully these tips will help! 

Stay safe everyone. 

 

Did you know?

Recently WNBA MVP—and one of my Lyme heroes—Elena Delle Donne was forced to choose between her career and her health when non-Lyme literate doctors didn’t believe her Lyme disease was serious. 

Unfortunately, this treatment from medical professionals is not new to lyme patients. We are told from the get go that it is “all on your head” and we need to “toughen up.” Although I am in a much better place in my healing journey than I ever have been in the past 8 years, it is still so unsettling and upsetting to see this happening. 

Lyme disease in itself is hard to grasp since the bacteria is so advanced and leads to so many symptoms and complications. Throw in the horse of misconceptions surrounding it and you have a recipe for disaster. 

I have spent that last 8 years of my life battling this illness so I’m calling myself an expert on the topic. I thought I’d share some facts since so many people have their own opinions on the topic regarding Elena’s health. 

Did you know Lyme disease does not go away after 2-4 weeks of antibiotics? If that was the case, I would have been “better” in November of 2012. Instead, it is now July 2020 and I still find myself getting randomly paralyzed every once in a while, having tremors at times and having some other lingering symptoms. 

If you see a tick bite or find a bullseye rash and get on antibiotics right then and there, 2-4 weeks if antibiotics may help—this is what we call acute Lyme. But many people aren’t lucky enough to find those things. In fact, according to a study done of 3,000 Lyme patients, only 40% saw a bulls eye rash. 

If you don’t find the bullseye, it is possible that the Lyme bacteria can disperse through your body and go into “hiding” waiting to come out years later. This is what leads to chronic Lyme disease. 

Once the infection is chronic, saying a person only needs 2-4 weeks of antibiotics and they will be “cured” is like saying someone with stage 4 cancer only needs 2 weeks of cancer and they are in the clear—it’s just unreasonable. 

Did you know there is no cure for Lyme disease? So even if you do have acute Lyme and get the 2-4 weeks of antibiotics, the bacteria can go dormant in your system and it’s never fully eradicated. 

Also, antibiotics are not always the answer. I was on oral and IV antibiotics for about 5 years off and on. These helped up to a point, then I plateaued and it wasn’t until I started Chinese medicine that my true healing started. However, some of my friends did straight antibiotics and got into remission that way while others have done straight holistic approaches and had the same results. I know people who swear by bee venom therapy, ozone therapy, hyperbaric oxygen chambers and many more treatment options. Each person is different, each Lyme case is different thus each treatment is different. 

For people saying that “Lyme disease isn’t that serious,” I say did you know that Lyme disease can kill people? I have been in this Lyme world for 8 years and I can’t count on my two hand how many people I have witnessed lose their lives to this disease. 

When the infection has been left untreated for years and years, the damage to the body is sometimes irreversible. Lyme disease can cause something called Lyme carditis that leads to heart failure. I met a woman whose 2 year old son died from a heart attack due to Lyme. 

It’s not even just the physical issues that can lead to death. The toll that living with Lyme disease has on one’s mental health can be catastrophic. Not only can the literal infection lead to depression, anxiety and other mental illnesses—but the experience can exacerbate these illnesses. 

Can you imagine what it’s like to be forgotten about by friends because you are too sick to participate in school, work or other events? Can you imagine what it is like to be told time and time again by the people who are supposed to “help you”—aka doctors—that you are crazy? Can you imagine what it is like to be a prisoner in your own body with no way out? That is what it’s like daily for a Lymie. 

It is estimated that 1,200 people living with Lyme disease commit suicide each year. 

I spent 6 months of my life getting periodically paralyzed from Lyme. Everyday I would wake up and be paralyzed—think about that. My first action every morning was pure fear because I physically could not move any part of my body—I sometimes could not even scream for help. I would have to just lay there panicking silently praying that someone would come to check on me and help. Can you imagine? 

This was 2 years ago, when I was at my sickest but it still happens. In fact, last weekend I got paralyzed laying on a raft in my pool—luckily, my family was outside and helped get me out before I could have fallen off and drowned.  

But “man Lyme disease is the most basic thing ever. Chill,” (@brandon_s_yo on Instagram).  

Did you know that 64 pills a day can be pretty average for lymies—I even had some friends that were on over 100 pills a day. This isn’t something we do for fun. It’s something we have to do to LITERALLY survive. I have to set aside about 30 minutes each week to fill in my pill box for the week—and yes, it’s the giant granny sized pill box and at one point I had two of those babies filled to the top for one weeks worth of meds. This may seem excessive to some, but for us, we will do anything to get our lives back. 

Did you know that living with Lyme disease does in fact make you high risk for Covid-19? The Lyme bacteria is called a spirochete for its spiral-like shape. This shape gives the bacteria the ability to “drill” into bones, muscles, tendons, nerves and even organs—like the heart. The response to this is hundreds of different symptoms—from heart palpitations, trouble breathing, fatigue, memory problems, tremors and many more. As we go through treatment, our immune system gets weaker and weaker—and our bodies start attacking  themselves to try and fight off the war going on in our bodies. 

Even when you are doing well—like I am—we are still at risk. Throughout this coronavirus pandemic I have been terrified of this virus. I’ve been saying I’m not worried about myself getting sick, I’m worried about getting other people sick. I am terrified of getting someone else sick and causing the torture that I have been through to another person and their family. On the other hand, I am terrified of getting sick again.

 For the first time in 8 years, I feel like me. I have way more good days than bad, and my bad days aren’t even full days, they are more like bad hours—heck, the girl who couldn’t bathe herself because she was so weak and in so much pain 2 years ago is working as a fitness coach. But if I got sick, it could bring me back down to that terrifying place. I like to think I am a strong person, but having to go through all of this again could quite literally break me. So why would anyone force someone to have to go through this again?

That is what the doctors on the WNBA board were trying to make Elena do. 

People know one thing about an illness and call themselves “experts.” They are quick to make decisions and belittle the true pain that these people live with and that is—excuse my language—bullshit. How dare you judge others illnesses especially when you could not even begin to imagine what life with that illness is truly like. Before you go joking around about someone’s illness (if I see one more corona and Lyme joke I will lose it) or tell someone to “chill” because their illness isn’t “that serious”—get educated. Learn about what that illness can really do. 

Don’t listen to the doctors either, listen to the people who actually LIVE with this disease daily. We are the true experts. We can tell you what it is like. We can tell you the hard truths, the ups and downs—all you have to do is ask and listen.

A letter Cassidy received years ago from Elena Delle Donne.
A letter I received years ago from Elena Delle Donne.

Thank you Elena for sharing your story and bringing light to the atrocities surrounding Lyme disease. Us lymies got your back. 

 

8 Years And Counting…

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 color-coded chart to keep daily medications in order.
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
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.
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. 

Cassidy Punching
Present day Cassidy ready to beat this once and for all!

Are You Taking All Of The Precautions?

Here we are, week number (who knows anymore) of the COVID-19 pandemic. We are living in a new reality and all trying to find our way in this “new normal.” I’m bored, I’m unsure but mainly, I’m scared.

I’m scared for all the people who are infected and suffering. I’m scared for the essential workers—doctors, nurses, grocery store clerks—that are putting their lives at risk every day to make sure we are all safe. I’m scared for the people who are asymptomatic, and not taking this thing seriously, who are infecting others. I’m scared for what our world will look like when this is over (also a little excited about this, too).

I’m also scared that we may be missing some valuable lessons from this pandemic.

The other day, my dad was going out to play golf in our front yard—yes, he made a golf course in the yard—and I said “my tick repellent is right over there.” To this, my father rolled his eyes (as he always does whenever I mention tick prevention). He then proceeded to make fun of my mom for expressing concern about walking through the yard unprotected the other day. (Friendly tip:  even though we are in a pandemic, the ticks are still out and about in your yards, lurking and waiting for a snack, so please be safe!) This is the same man who is crushing the hand sanitizer game, wears gloves and a mask whenever he leaves the house and immediately showers when he gets home from work (he’s an essential worker, by the way). So what’s my point?

Why is using tick repellent to prevent Lyme disease any different than using face masks and gloves to prevent COVID-19? Why is being concerned about getting bit by a tick from walking through the yard a laughable act, but being afraid of catching covid-19 from being at work is not?

There is a major double standard around how we see COVID-19 and how we see other illnesses. 

Yes I know COVID-19 is way more contagious and deadly than Lyme, but all illnesses and diseases—not just these 2–need to be taken seriously, and so do those who live with them.

Did you know that according to the CDC, 6 out of every 10 adults live with a chronic condition, and 4 out of 10 have 2 or more conditions? While COVID-19 is dangerous and we need to be taking every precaution necessary and follow the guidelines laid out, it is temporary. All of this madness will end at some point—although things will never be 100% back to “normal”—but those with chronic illnesses have them for the duration. 

Before this pandemic, if you saw someone out in public with a face mask on, you probably ran the other way because you thought they were a potential threat. Now, if you don’t see someone with a face mask you run the other way because they are a potential threat.

I know many people in the chronic illness world who have been wearing masks in public for years—some because of allergens, some for smell sensitivities, some because they have a weakened immune system and want to be safe. Regardless of the reason why, they had every right to wear their masks, but that didn’t stop people from making fun of them and making them feel bad for trying to be safe.

I don’t know about you, but I feel pretty unsafe in our world right now. And I am doing everything in my power to make sure my family and I are safe. We should never judge the way others go about safety and we should never belittle the lives of those in the chronic illness world. If this teaches us anything, I hope it’s more compassion and understanding for the power disease and illness have.They take your life, turn it upside down, sideways and diagonal. They take everything you thought you knew and completely change your perspective. They leave you lonely and scared—more times than I wish to admit.

So when this is all over, remember this terror. Remember the uncertainty for your day to day life. Remember the loneliness. Remember those that have been, and will be, feeling those things still because they are chronically sick. Remember all of the safety precautions you are taking to not contract/spread COVID-19 and take that same tenacity and apply it to preventing the spread of other illnesses—like wearing your tick repellent and tick checks to prevent Lyme or not sharing drinks with people to stop the spread of Mono. 

Let’s come out of this pandemic as a healthier, stronger and most importantly, more compassionate world—and following proper prevention techniques and supporting those who are sick are a good place to start. 

Lysol, Tick Repellent, Gloves, Mask and Hand Sanitizer

A Chronic Illness Warrior’s Thoughts On COVID-19

Tina Fey mean girls saying "go home"
via Giphy

These are some pretty uncertain and scary times we are living in. I have so many mixed feelings on everything happening that I have trouble putting it into words—but I will try here. 

I first started having mixed feelings about the Coronavirus pandemic when all of the Coronavirus and Lyme jokes came out. You haven’t seen one? Google it because if I see or hear one more of them I’m going to lose it. Why is it funny to joke about diseases? There is nothing funny about these life-altering and even life-ending illnesses. Please, please, please stop with the jokes. 

Now, I’ll be the first to admit that I did not take COVID-19 seriously in the beginning. I thought it was just a glorified cold and could not understand why people were going crazy—I am also the first to admit that I was very, very wrong. 

This thing is serious. It may not be manifesting so terribly for some people and for them, it is just like a bad cold. Yet, for others, they are dying and I don’t take that lightly. Everyone kept saying that only the elderly and those with underlying conditions would be impacted and people thought this was fine. 

Do the elderly and the sick not matter? Are their lives any less important than others? A life is a life and I believe that all lives matter. The other issue with this “only the old and sick” mindset is that many people don’t know that they are, in fact, sick. Take Lyme for example. My Lyme was dormant in my system for 10 years before I started showing symptoms. That means that someone could be out walking around right now thinking they are fine, when in reality, they have Lyme disease in their system and if they got COVID-19, the results could be catastrophic. 

Many people also don’t know what counts as high risk or immunocompromised too. My parents were supposed to go out the other night but we talked them into staying in and when their friends asked why, my mom pointed to me. When people see me, I look like a healthy 22 year-old—this is the downside of having an invisible illness. I don’t fit the profile of what people think when they say the elderly and immunocompromised are at risk. In fact, the other day we saw a man at the doctor’s office (my last outing before social distancing) and we were talking about what’s going on. When he saw I had gloves on he asked why and I said I am high risk. His words were “but you’re young.” Boy oh boy was my blood boiling!  There is no age limit on who is sick and who is not, and there is no age limit on who will get sick and who will not.

COVID-19 is a relatively new virus that we don’t know much about. We have no remedy, we have limited testing and we have limited information. What we do know is that it is spreading at astronomically high rates and we are not equipped to handle what is to come. We cannot stop it, but we can slow it down. 

Which leads me to my next point: stay the frick home! Please people! It really is not that difficult—us chronically ill people have been doing this for years. I promise you that you can miss going bar hopping for a few weekends if it means LITERALLY saving lives. And that is what social distancing is doing—saving lives.  

I am not even that worried about getting the virus myself—if I can make it through Lyme I can make it through anything. I am worried about being a carrier and potentially giving it to others and causing them harm. The thing with this virus (and not so shockingly, most viruses) is that people are carrying this disease around with them and have no clue. So how do you stop this? You keep the heck away from other people. My doctor told me that “if it is not a necessity, don’t go.” And I love that. Yes, work is a necessity and I understand people have to go to work (my brother is there right now) but the other stuff, it can wait. You don’t need to go over to your friend’s house for wine and Netflix—you can stay at your own homes and Facetime and have wine and Netflix while social distancing. 

If you do have to go out for the essential things (like work and the grocery store) please take the proper precautions—act like you live with someone who is high risk. Wear gloves, wash your hands frequently, wipe things down, and if you can, stay six feet apart from others. 

Stay home. Watch that show you’ve been meaning to (looking at you Handmaid’s Tale). Read some books (I recommend these ). Try that hobby you’ve been meaning to but haven’t had time. I don’t care what you do, just do it at home.  

And look, I’m sorry your vacations may get postponed. I’m sorry that your sporting events are gone and I’m sorry that you can only see your friends through the phone but guess what? Welcome to the life of the chronically ill. For years we have been social distancing. We have been unable to enjoy vacations, had to give up the sports we loved, the schools we loved, the people we loved because our illnesses got in the way. 

People would often say to me “wow you get to stay home all day and watch Netflix. I wish I was you.” Well, now you are. Hopefully, now you see that it is not all sunshine and rainbows—it is lonely and isolating. Yet, if we are all practicing our own social distancing together, perhaps it’s just a little bit less lonely? 

When you make jokes about any illness, it’s belittling to those living with that illness and takes away the severity of the situation. When you put labels on who will and will not get sick, you make people think they are safe when they really aren’t. News flash: most illnesses do not discriminate—they don’t care about your age, race, gender or political party. Do you want to be the person that kills another human being because you just were selfish and had to go out? No. 

So, act like you are high risk—or better yet, act like a freaking decent and unselfish human being—and social distance yourself. 

We are all in this together (even though we are apart). 

Stay safe friends and expect some more blogs soon because what else is a girl to do when she’s in isolation? 

Tom Hanks saying "we're all in this together"
via Giphy

(get better soon Tom and Rita!)

Be Grateful

Gratefulness. Something I’ve been working on more recently. 

I realized something not too long ago—my body is amazing. Now that may sound a bit conceited, but I don’t mean it that way. I mean my body is amazing in that here I am almost 8 years into my journey and this thing has not stopped fighting. 

My body fought for me to wake up everyday and here I am. There were days when I didn’t want to wake up. Days when I woke up and it felt like I was trapped in a nightmare paralyzed, unable to move or ask for help. I had those moments and my body pushed on through. For that, I am grateful. 

I’ve had anxiety and depression throughout this whole journey. My anxiety has been a HUGE issue in the last few years. In fact, they think that my anxiety may cause my paralysis. I have worked with therapists for years and am doing a lot better (I have been off anti-anxiety medication for over a year) but sometimes, the anxiety still wins. 

I have anxiety for my future—will I ever be able to work a full-time job? Will I ever lead a “normal” life? I have anxiety for my symptoms—will I get paralyzed today? If I eat that will my stomach bloat? There’s the anxiety over money since treatment is expensive and the anxiety over the treatment itself—what if this doesn’t work? 

So yeah, I have a lot of anxiety, and all of this anxiety often leads to my depressive episodes. I never really thought much about the physical impact this all could have on me, until a few weeks ago that is. be grateful

I was having a really rough day a couple of weeks ago and felt extremely lost in my next steps. Once again, I consulted my encyclopedia Jess and she introduced me to DNRS—Dynamic Neural Retraining Systems—which has to do with the limbic system and parasympathetic and sympathetic nervous systems. 

The gist of it all is that our bodies go into fight-or-flight—sympathetic nervous system—when they feel threatened and then rest-digest-recover—parasympathetic—when they are at ease. When you have a chronic illness, the body has a hard time getting out of fight-or-flight. This BLEW my mind. For years doctors have mentioned that I’m in fight-or-flight but no one ever explained it to me or how to fix that. So I asked my doctor brother about it and he explained it to me. 

*disclaimer: he said he tried to explain this to me years ago but I was not in the right space to listen and accept this. That is the thing with this Lyme journey, you won’t be ready to accept some things until you are at “rock bottom.”

I am not a doctor but this is my understanding of how this all works. My body is constantly trying to survive—to fight. While it is fighting, all my energy is being spent on that flight and not being dispersed to the things they should be, like digestion. In fact, my acupuncturist told me that I didn’t have any energy to “move” because my body was so drained. 

So I had to fix this. The key is doing something, every single day, that gives me complete relaxation. My brother asked what relaxed me and I said exercise. He said exercise may relax my mind, but it is still stress on my body. This has to be something that offers complete relaxation. So I started meditating. 

Every night I do a guided meditation and I journal. Then when I wake up, I do another 5 minute meditation to start each day. I have to say I definitely have noticed a change. My irritability has gone down, along with my anxiety, and my digestion has gotten better. 

Another thing I realized from the DNRS podcast and book is the vicious anxiety-driven cycle us spoonies live in. Every day, I think about my symptoms. I think about the “what ifs” that I stated above, but also, throughout my day, I do symptom check-ins as well—“does my stomach hurt yet?” or “are my hands shaking a lot?” I learned that this mindset is not good for healing. When you think of these things, it causes anxiety and negativity that is poisonous to the healing process. 

I have tried to combat these thoughts as much as I could and that is helping me not be in much pain. Now I know this all sounds crazy, but the mind is a powerful, powerful thing. This is something I will have to work on for the rest of my life, but it is something I am willing to, and enjoy doing. 

I am grateful to all of you for allowing me to share my—most likely—annoying thoughts, and providing me with this outlet throughout this journey. 

Now say it with me: I am grateful. 

 

2020 off to a roaring start!

I’m back! It’s been a little while so let me give you all the full re-cap. 

I was doing pretty amazing over the summer—I made it through the whole LEAF tour 2019, all 11,000 miles. I was doing great at the beginning of the fall semester at MC, but things started declining a bit in October. 

After a bunch of testing, it was determined that I have pre-Crohn’s disease. To treat this, they wanted me to do antibiotics which I was super against out of fear of how it would interfere with my Lyme. So, they gave me some stomach anti-inflammatories. 

Well, after two weeks on those, my symptoms were much, much worse. One day I left class early because my stomach was bloating and hurting so bad that it hurt to breathe. I called the doctor’s office and they said “there is a small group of people who have an adverse reaction to the medication and their symptoms actually get worse. That must be you.” Why on earth would we think anything would ever be easy when treating Cassidy? 

So the only thing left was the antibiotics which I was still very much against. So we worked with my nutritionist and tried to heal my gut that way. We restricted my diet even more and I was still having problems. In December we came to our last resort—the elimination diet. For a week, the only thing I was allowed to eat was chicken, turkey, olive oil, salt, cumin, cinnamon, sweet potatoes and green beans. Even when doing this my stomach pain got unbearable, so I had to bite the bullet and take the antibiotics. 

Throughout all of this, some of my Lyme symptoms re-emerged. I started getting random paralysis, tremors and extreme fatigue. The antibiotics made this all worse and then some. 

I flew down to SC to visit my best friend, Payten, and the only way I can describe the trip was that I was a zombie. I was so nauseous from the antibiotics I barely ate anything except gluten free pretzels. I was so cold that my entire body was shaking even under layers and layers of blankets. 

While I was there, my Lymie friend Abby came to visit. I am so thankful that Payten and Abby get what I am going through. We were supposed to go out, but I physically couldn’t handle that, so we stayed in. We sat and talked for hours but I was too tired to open my eyes, so we had an hour long conversation with my eyes shut. They are the best and I am so thankful for them!

After the trip, the holidays (and the 7 birthdays my family has right after) came roaring in and I just pushed through. My stomach was killing me and other symptoms kept worsening—I was feeling very lost and hopeless. I just kept thinking “how much longer do I have to go through this?” This year will mark 8 years I have been fighting this horror. 8 years. 

I reached out to one of my Lymie mentors and friends, Jess—Jess is my Lyme encyclopedia. She researches everything and I trust her more than I trust the doctors. I called her to ask about the Whole30 diet, but after telling her everything going on, she recommended the Dr. Rawls Lyme diet. 

Dr. Rawls is a Lyme doctor who actually had Lyme himself. He made this whole diet guide up and it is amazing. In his book, he outlines different components that make up different foods—like lecithins and oxalates. He then created a several step process in healing, and rebuilding the gut. I started the healing phase about a month and a half ago and noticed improvements within a week! It was amazing!  I even started adding in some more food this past weekend! 

But the diet wasn’t enough, so I told my parents I wanted to go back to my Chinese medicine doctor. I started back there about a month ago and I am already seeing improvements, as well. We are treating me for parasites with herbal supplements as my constipation issues have come back along with my rapid weight loss—I’ve lost 20 lbs. in a month.  

I have been doing this new protocol for almost a month and have noticed improvements! I have also been able to slowly add in a few more foods to my diet (hello eggs, shrimp and cooked carrots!). The thing that has helped the most recently in my healing process is practicing gratefulness and meditation—but that requires it’s own blog so stay tuned for that one!  

In the midst of all this, I graduated from Montgomery College with a 4.0, and started at the University of Maryland. I am LOVING it! I am already learning so much and happy to say I have chosen the right major for me—communications. 

I will try to keep up with my posts and progress! 

2020 is off to a great start and fingers-crossed it continues to climb upward! 

IMG_3089
Cass getting acupuncture with stimulation.

The Chronic Illness Life Strikes Again

I took an online exam the other night—I got a 100% on it too. The second I finished, I was up in the bathroom dry heaving—this is my life.
Cassidy's Stomach bloated vs non-bloated taken 20 minutes apart
You’d never know by looking at me the constant pain and turmoil that my body is in. While taking my test, my stomach started to bloat and the pain became so bad I started sweating. I wish I could say this is a rare occurrence, but that’d be a lie.
I rarely ever have moments when something isn’t bothering me. If it’s not my stomach, it’s my head. If it’s not my head, it my hand shaking. If it’s not my hands shaking, it’s my vision blurring—and on and on the cycle goes.
One of my favorite quotes is “you never how strong you are, until being strong is the only choice you have,” and that describes the chronic illness life to a spoon (if you get it, you get it😉).
Sometime people will say “I don’t know how you do that” (often talking about the “weird” foods on my diet) and my answer if simple—I have no other choice. Or when I mention how I get paralyzed and people freak out—I just have to keep pushing on.
When you have a chronic illness, your stuck with it for life. You can wallow in self pity—and believe me I have had my fair share of“why me” moments—or you can choose to fight.
We may have to do some things we never thought we’d EVER have to do (looking at you stool sample collections) and eat some things that no one would intentionally try (yummy avocado brownies). But we don’t have another option.
To give up is to die—literally. Now I’m not saying you can’t ever get angry and have those why me moments (like I just did), but the important step is picking yourself up after.
So go pick yourself up, put on your essential oils (stomach pain be gone!) , wear those sunglasses inside (what’s up light sensitivity) and tell your disease to go suck it—just like the tick that gave it to you. (See what I did there?)