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?)

Wow! That is all I can come up with to describe my weekend. This past Saturday, October 19th, my mom and I had the privilege of attending the 4th annual Lyme Disease in the Era of Precision Medicine conference in New York City. This was a free event, open to the public (but you still had to register) and it brought together some of the most profound, and groundbreaking physicians and researchers in the Lyme Disease field. 

 

It was a 9 hour day, and boy did I learn a lot! So, instead of recapping all 9 hours here, I’m going to share my take away, and if you’d like to see the presentations, LymeMind recorded them

 

There was a lot of talk about new diagnostic tools and treatment at the conference. One promising new way of diagnosing and treating  was discussed by my friend, Dr. Neil Spector. Dr. Spector talked about what could potentially be a PET scan that can visibly show us the Lyme bacteria. Can you imagine?! Right now, there is no accurate way to test for Lyme disease. Let me rephrase that – the blood tests they have are NOT ACCURATE more than half the time! That is why it takes many people so long to get a diagnosis. So, if we could have a scan that could literally show us where the bacteria is, my golly, that would be a HUGE game changer. 

 

Dr. Spector is also working on a targeted non-antibiotic medicine that would kill the Lyme, but not harm our good bacteria. One of the major impacts of our Chronic Lyme treatment is that while it’s getting rid of the Lyme bacteria, we are also damaging the rest of our bodies. If we could have a treatment option that doesn’t cause the residual effects we all face now, everyone would be much better off. 

 

Another “new” treatment option was discussed a few times at the conference and that is the use of Disulfiram. Disulfiram is a drug used to help alcoholics fight alcoholism, but recently it has begun to be used to treat Lyme and has shown some promising results. There have been several Lymies on Disulfiram that are claiming to have reached remission, which is amazing! The only downside is that it seems to have some detrimental psychotic effects which worries me. Though, as one patient told Dr. Leigner, the psychological breakdown was “worth it” to not be in Lyme hell anymore. Let that sink in! These people (Lymies) would rather take a chance of having a psychological breakdown if it meant going into remission–It makes you question “how bad must Lyme be then?” 

 

My personal highlight of the conference though, was seeing my old LLMD, Dr. Crystal Barnwell, speak. I haven’t seen Dr. Barnwell since 2015 when she took me off of my first PICC line–that was the day she told me she thought I was going into remission and the day she told me she was leaving the practice I was seeing her at and moving to Georgia. Two weeks after I got my PICC line out, I went away to Salisbury University, and by the end of the semester, I was getting paralyzed and had to drop out of school to get another PICC Line. Remission was far, far away. I used to be mad at Dr. B for leaving me, but this Saturday I found out why she left, and I am in awe of her. 

 

After she left Virginia, Dr. Barnwell made it her mission to bring awareness (and treatment) of Lyme disease to the South. Many people think that Lyme is just in the North (more specifically the Northeast) but that is definitely not true. Dr. Barnwell works in the poorest places in the South helping to diagnose, and treat those with Lyme (that had no idea what Lyme was!). She started her own practice, The Danio Group, where she does patient house calls. Dr. Barnwell is single handedly saving the thousands and thousands of Southerners who have been deemed “invisible” in the Lyme world, and we should all be grateful for that. 

 

After her speech, I happened to see Dr. Barnwell in the hallway. I said “hi,” and before I could ask if she remembered me, she pulled me in for a big hug. I cried, she cried, my mom cried–it was an emotional day. Dr. Barnwell is the doctor who got me to the best I had ever felt, until now. Without her treatment, I would not be where I am today, and to be able to thank her again was amazing. 

 

Next, my mom and attended the breakout session on mothers and babies with Lyme. This was what I was most looking forward to all day, and it was a tough pill for my mom to swallow. We’ve heard over the years that Lyme Disease can be passed from mother to child in utero and that even whole families end up with Lyme because of this, and this weekend it was confirmed to us. There was a panel of two doctors and one nurse–all very well versed in congenital Lyme. the consensus is that Lyme Disease can be passed from mother to child, and it can also make it extremely difficult for women with Lyme to conceive (most have 4 or more miscarriages). I have known this for years, and I have accepted it. I have said for some time that I am not going to have children because of this, but my mom never really believed me until this weekend. 

 

It was hard for me to see her face fall when the doctors confirmed what I already knew–and I won’t lie – it was still a little hard for me. It’s unsettling to be 21 years old and know you will never have children, but it’s just another way Lyme has changed my life course and I am sure there is a reason. 

 

This session was also eye-opening in other ways. There was a psychologist who was discussing how anxiety is the most common mental health issue in Lyme patients (Hello! validation for me!). I can’t remember who said it, but someone said that in this day and age, many people are quick to diagnose people with anxiety and depression without even looking for another cause–like Lyme. Infectious diseases can cause psychological problems, so why do so many people get put on antidepressants or anti-anxiety meds without being checked for other causes first? Just another thing wrong in our medical system. 

 

And that is another huge lesson I came across this weekend–our medical system is even more broken than I thought. When Dr. Spector was presenting, someone asked how long it would take for the FDA to approve of his new treatment. Dr. Spector responded with “How do you get a drug approved for a disease that the FDA does not recognize?” Herein lies the problem. How are we supposed to get better if the medicines aren’t approved? They won’t be approved because our illness is not seen as a “real” disease. This is what leads to people having to pay an arm and a leg for treatment. It’s unacceptable. 

 

Also, most of the attendees were patients, not physicians. How are the doctors supposed to learn how to help us if they don’t show up to these events? In fact, one of the presenters even mentioned how amazing it was that the Lyme patients all show up, and so disappointing that the physicians aren’t taking the initiatives they should. In the Lyme medical world, we,the patients, are forced to be our own advocates when it’s the doctors who should also be standing up with us and fighting back. 

 

We also heard a representative from the CDC speak, which was quite interesting. Here’s a little backstory on Lyme and the CDC–they don’t think Chronic Lyme is real and thus they are the reason insurance doesn’t cover treatment and why no one believes us. So having a CDC rep there was bold. But it turned out to be eye opening, as well. This representative started off by thanking us for letting her in because she understands how we feel about her organization. What I took away from her presentation, is that she believes in Chronic Lyme but her organization does not. She told us that as a federal employee, she can’t lobby even if she wanted to. 

 

She showed us the CDC maps and even admitted how inaccurate they are. She said that only 1/10th of Lyme cases are picked up in their surveillance. 1/10th! She also explained that some states–like Massachusetts–have stopped sending in their yearly Lyme cases because there are simply too many. So how do we know how many people have Lyme? We don’t and that is terrifying. 

 

She also explained how in the CDC, they can only use the amount of money given by the government each year for each disease and they cannot reallocate funds from one disease to the other. The CDC is only given $12 million annually for Lyme disease–that is NOTHING. 

 

So what’s the big take away? Well, there are two. First, the government must help us. Nothing can get done in this country without money and without government approval. All of the amazing research we heard about all came from privately funded endeavors. Just think about how much further we could get in curing this epidemic if we had government funding! 

 

So how does this happen? Well, this leads me to my second takeaway.  We must all come together. This is something I heard multiple times, in different presentations all day, and I have been saying it for awhile now. There are a ton of AMAZING groups out there doing great things for the Lyme community, but just think about how much more amazing it would be if they all united together to become one Lyme fighting powerhouse? 

 

In 2005, Autism Speaks–the largest Autism advocacy agency in the US–was formed by merging three Autism powerhouses. Since then, they have enacted so much change for the autism community–including legislative and awareness campaigns. 

 

This is what we need in the Lyme world. In order for the change that we so desperately need to come, we all must join forces. Separate voices can be loud, but just think about how loud it will be when all hundreds of thousands (or millions) of Lymies come together–they would never be able to tune us out again. 

Recently, I’ve been chatting with a lot of Lymies about our different journeys and sharing what I did to get to where I am today. While getting the proper treatment (antibiotics, herbs, etc.) is vital to healing, I have found a few other things that I believe are key to healing from Lyme. 

 

The first thing I want to point out is that I am in no way a medical professional; these are just my personal thoughts from my experience over the last seven years. 

 

  • Diet. I know everyone always says “Change your diet. Change your diet,” and it took me a long time to hop on that train, but I am so glad I did. When I was first told to go gluten free I was 15. What 15 year old wants to have to give up pizza nights with friends, or cookies or anything like that? Not this one! At the time, I wasn’t even having stomach problems yet either. My first bout of being gluten free lasted 2 weeks. A few months later, a different doctor asked me if I was gluten and sugar free. When I said no, they looked at me and said, “You know that the Lyme bacteria feeds off of gluten and sugar right? So when you eat those things you are literally feeding the bacteria to grow stronger.” That was the turning point for me. Here I was spending thousands of dollars on treatment, but what I was eating was potentially counteracting that treatment. Now, I have been gluten free for 6 years and on-and-off sugar and dairy free for that time as well. I admit that I would cheat on my sugar free and dairy free diet more than I’d like to say, but when I reached rock-bottom  (being paralyzed) I was determined to do anything in my power to make myself get well again. That is why I am now gluten free, dairy free, sugar free, low/no carbs (bye bye fruit), no honey, no potatoes, no corn, and no rice. It may seem whacky or over the top to some people, but for me, I will do anything to feel better again. And let me tell you, if I eat something I shouldn’t nowadays, I feel it–I had a little bit of sweetened coffee creamer the other day and I felt absolutely horrible. I’m not saying you need to be as extreme as me, but our food is also our medicine. This disease takes away a lot of our control, but we do have control over what we eat. Be conscious of what you are putting into your body. 
  • Detox. Detoxing is pretty much all I am doing “treatment” wise at this point. For me, detoxing is the key to feeling good. If I don’t sweat every day, whether it be through my sauna or exercise, I feel terrible. People will often hear me say “I need to sweat” and that means I don’t feel well. This past Sunday, for example, I was trying to study and I could not get my eyes to focus on anything. I started feeling exhausted and was getting frustrated. So, I went in my sauna and sweated so much it looked like I had taken a shower—kind of gross, but boy if I didn’t feel like a brand new person after! At this point, I plan my days around when I can sweat because I know I won’t be up to par if I can’t. I also drink a detox tea almost every night. I put some turmeric, ginger, cinnamon and ground black pepper in a cup, add hot water and there ya go! It may make my mouth orange for a few hours but it definitely helps with the inflammation. Detoxing is so important in our healing journey. As we treat Lyme, the bacteria dies off, and if we don’t detox, it may take it a while to expel from our systems. Many Lymies also have MTHFR, a gene mutation that makes it difficult for our bodies to detox already. So, find your preferred detox method and stick with it. Just be cautious you don’t over detox, as that can be harmful. 
  • Don’t neglect your mental health. Our mental health is just as important as our physical health. And when you have a chronic, incurable illness like Lyme disease, it’s easy for our mental health to take a hit. I have seen 4 different therapists in my 7 year journey for my depression, anxiety and PTSD from having Lyme. In the beginning, I was hesitant to go to therapy. I wanted to believe I was okay and I could get through it on my own, but I was wrong. Now, I am so grateful my family pushed me to go. When your mental health is under attack, everything is under attack—my anxiety definitely causes my Lyme symptoms to flare big time. I now know some coping mechanisms to help me combat my mental health issues when they arise, and it definitely has had a positive impact on my Lyme journey, and life. One coping technique is meditating. I use the app InsightTimer  and mediate whenever I am feeling exceptionally anxious and the effect is remarkable. This journey is anything but easy. Don’t be afraid to ask for help when you need it. And always remember that you are not alone in this journey and it will get better! 

So as I said, I am no doctor. I am just someone who has been in the ring with Lyme for seven long years now and want to share some tips that have helped me get to where I am today—living.

 

Cassidy and Friend After Working out

Hello everyone! 

I’m back. It’s been a crazy few months so I thought I’d give everyone an update on what’s been going on in the life of Cass. 

For those of you that don’t know, I have been living with Chronic Lyme disease—and multiple other tick-borne diseases—for over seven years now. My illnesses have caused my life to be turned upside down, inside out, diagonal and any other direction you can imagine. 

The one good direction my illness led me in was finding Dr. Nancy Fox and working for the Lyme Education Awareness Foundation, or LEAF. Last summer, Nancy and I embarked on our first Lyme Education Tour where we educated about 1,500 children in 8 states. Well, this summer, we went a little wild—in a good way! Nancy and I traveled over 11,000 miles, in 16 states, at 50 locations, and educated 4,000 children on Lyme prevention and awareness. These past few months have been so amazing! I got to see some new magical places (I want to move to Stowe, VT) and met some amazing kiddos all while doing what I love—stopping others from getting this truly life altering disease. 

This tour was also really eye-opening for me. I saw first-hand the lack of education that is out there when it comes to teaching our children about the dangers of ticks and tick-borne illnesses. We would be in highly tick-infested areas, yet these kids didn’t know the basic ways to protect themselves. 

Children make up approximately 25% of all Lyme cases. So next year when they estimate 2,000,000 people will be contracting Lyme disease annually in the U.S., 500,000 of them will be children. That number makes me sick. 500,000 kids not able to play with their friends because their bodies hurt too much. 500,000 kids falling behind in school because they literally can’t stay awake to go to school. 500,000 kids who will lose their childhood to this horrifying disease. 

Witnessing this really added fuel to my already burning desire to spread Lyme awareness. When people hear “Lyme disease” they normally think it’s just Lyme disease and that people will be “cured” in no time. They don’t realize that it can cause paralysis, or leave people wheelchair bound. They don’t realize that it can cause families to go bankrupt trying to find life-saving treatment. They don’t realize that Lyme disease can kill. 

My goal is, and has been from the beginning, to shine light on the truth behind life with Lyme disease – the good, the bad and the very, very ugly. The world needs to become more educated and aware of all the horrors that come with ticks, and we all need to know how to protect ourselves. Education is our best defense and I am so honored and proud to be part of The LEAF Program and work to save children’s lives, one lesson at a time. 

The summer tour ended last week, and now I am about to embark on what will ~hopefully~ be my last semester at Montgomery College, and I will receive my Associates Degree in December. I will also be nannying my nephew and brand new niece (see photos below) as well as dj’ing twice a week. This is all pretty big considering where I was a couple of years ago! 

I had been doing Chinese medicine since last August and felt a lot better, however, in May, I started noticing I was plateauing and stopped treatment in June to focus on some GI issues. How many 21 year olds have had the honor of having an endoscopy and colonoscopy during their summer break?

 I also started an even stricter dietary regimen of no gluten, dairy, sugar, fruits, potatoes, honey and limited grains but I have since noticed problems with grains so they are now gone too. When people hear my diet they often make comments like “I would die without ___”, but it honestly doesn’t bother me. I learned the hard way that there is no magical easy cure to this disease and I have to do everything in my power to get healthy. So if that means I can’t eat pizza, or a milkshake or apples with peanut butter (my favorite snack) then so be it. 

The only supplements I am presently taking are turmeric for joint pain and inflammation, melatonin to sleep and my medical marijuana for insomnia and paralysis, as well. If you recall, I went months without paralysis, but in March it started again—not nearly as bad as before though. I get paralyzed once every few weeks now, if that. It’s been almost a month since the last episode so fingers crossed everybody! 

I have my own regimen now. I go into my infrared sauna a few times a week and exercise daily. I also drink 2 cups of IASO Tea daily to help with GI issues (seriously this tea changed my life) and my turmeric detox tea every night. Sweating is the key to me staying at the OK point I am at right now. And I am OK right now—not 100% but not horrible either. I still get fatigued, my hands and chin will shake, I get heart palpitations, I have trouble concentrating and joint pain—but it’s livable at this moment. 

This summer was the first time, since I was 14, that I felt like I was actually living my life and I really liked that feeling. So here’s to hoping that things keep moving forward and upward this semester.  

I promise I will be updating more frequently, and make sure to check out the Lyme Education Tour on social media to see what I did this summer! Collage of pictures from Cassidy's summer

7 years. I’ve been sick for 7 years. That’s 1/3 of my life. 1/3 of my life spent in doctors’ offices, taking medicines and being in pain. I know I’m over-do for a life update (bad? but? it’ll be coming in the next few days), but since it’s Lyme Disease Awareness Month and my lyme-iversary (the irony), I thought I’d share 7 things that I’ve learned through these 7 years with Lyme.

Cassidy with a spirochete stuffed animalOur medical system is a hot mess.

This was probably one of the first lessons I learned, and the hardest to grasp. In our society, we are taught to trust that certain people will help us, like police and doctors. However, when you have Chronic Lyme Disease, some doctors become the ones who hurt you the most. Due to the controversy surrounding Lyme disease—some say Chronic Lyme doesn’t exist—finding doctors who believe you, and can treat you, is a trying task. Which leads to my next lesson.

Be your own advocate.

When people (including medical professionals) don’t know much about your illness, or worse, don’t believe in it, you quickly learn you have to become your own advocate. You have to research. You have to tell people what is going on and what you need. You have to fight for your life.

Find your people and don’t let go.

Advocating for yourself can get hard when you are so sick you can’t remember what you are doing, let alone keep your eyes open. That is why it is so important to find your people. Having a good support system is what I believe is one of the most important parts of making it through this journey. I would not be here without my family and friends. The sacrifices and things they have had to do for me over the last 7 years are nuts—from the obscene amount of money spent (here’s looking at you $63,000 PICC line), to literally carrying me when I am too weak or paralyzed, and holding me while I have my ~monthly~ breakdowns. Sure I’ve lost people over the years, but that just made it more clear who is really in my corner. I am so grateful to have all of you on this journey with me. I love you.

Listen to your body.

I have been sick for 7 years and I still struggle with remembering this lesson. One of the hardest things to grasp when you get sick is that you can’t do what you once can, and this gets even harder to remember when you start to feel better. One day I will be able to go 3 miles on my elliptical and then lift weights for over an hour and feel great. Then another day I can’t even go a mile and weights are out of the question. As you can imagine, this gets very frustrating. A year ago, I would have kept pushing myself, even as my body was screaming “NO!” but now, I’ve learned to listen to my body. The only person I am hurting by ignoring my body’s message is myself. I always tell people “your health is the most important,” so doing and giving my body what it needs has to become top priority in this healing process.

No Journey is the same.

This one is another tough one. Since the Lyme bacteria is so smart (to learn more about it I recommend watching Under Our Skin) it can impact pretty much every system in the body. It also can affect people differently. So what works for one person, may not work on you. For instance, I have a Lymie friend who sees the same doctor as me right now. There is one medicine that I have to take or else my anxiety will be off the charts, but if she takes it she gets anxiety. Some people swear by stem cell treatment, while others say bee venom therapy helped them. My mom heard someone say “once you’ve seen one Lyme patient, you’ve seen one Lyme patient,” and that is so true. No journey is the same, so don’t compare yours to another, just buckle up and get ready for a long and bumpy ride.

There is a great big world out there.

I got sick when I was 14 years old. I was an annoying teenage girl obsessed over boys and looks—I quickly learned these things don’t matter. Lyme forced me to grow up really fast. It forced me to see the cruelness in the world. I watched people lose their livelihoods just to pay for treatment, in order to stay alive. I watched people die from Lyme disease. I have seen that there are hundreds of thousands of people out there just fighting to stay alive, and I have been (and always will be) one of them. Lyme disease taught me that there are more important things to worry about then just yourself and your small little world, and for that I am grateful.

Celebrate the little things.

This one is super important. As you get further and further into this journey, it can be hard to see the silver linings. That is why it is so important to celebrate the “small” things.  I can remember the first time I drove to the top of my street after being paralyzed—it wasn’t a 3 hour drive, but we still celebrated. Or the first time I said “my head doesn’t hurt”—I had a headache for a good 5 years. While these things may not be winning a Nobel Prize or an Oscar, they are little glimpses that everything will be okay, and that is something everyone needs to celebrate.

And just for good measure, here is a bonus lesson I learned:

Pajamas are not just a bedtime attire.

The amount of times I have left the house in pajamas in the last 7 years is most definitely higher than the times I wore “normal’ clothes. This lesson came from a few of the above lessons combined. Once I realized there are more important things out there, I found that if I feel well enough to leave my house, I am going and not giving a damn about what I look like—leaving the house is a huge accomplishment and if it’s going to be in my footie pajamas, then that is fine with me!   

 

7 years, 7 lessons. Hopefully next year I won’t be celebrating this anniversary, but if I am, I’m sure Lyme will have taught me something new. While I wouldn’t wish this illness on anyone, I am grateful for the lessons Lyme has taught me and the person it is shaping me out to be.

This week should have been the start of my last semester of college. I should have been getting “senioritis” again and sending out my resume to entire the so-called “real world”—but that is not how my life turned out and that is okay.

Instead of getting sad that my life is not going according to plan and that I am falling behind my peers, I am celebrating how far I have come.

This time last year, I was getting paralyzed all the time. I was unable to go to school, drive or even work. I was pretty much confined to my house, being monitored like an infant in case a paralysis attack happened.

Now, I am entering my 6th semester of college—it is still part-time but that is huge. I am not only nannying 3 times a week, but I am djing a couple nights a week too. I am a student blogger for my college and I am still working on the Lyme Education Tour.  I also have an incredible internship with The Mighty where I am able to help spread awareness about Lyme and other chronic illnesses and it is a dream come true!

Probably one of my biggest accomplishments is that I am exercising everyday—I don’t just mean the light Pilates I had been doing either. My brother and I started boxing and lifting weights— I can now lift anywhere from 25-120 lbs. depending on the exercise. Last year, I couldn’t even lift my own head up. So it is safe to say that I feel pretty amazing.

Sure I still have my bad days, but I just remind myself of how far I have come. I have seen rock bottom— I lived there for quite a while actually—and I know I am nowhere near it right now. I am not in remission (yet), but the road to recovery is looking less bumpy.

I am living my life—it is not how I planned, but I am loving it just the same!  So no, I am not graduating in the spring of 2019 like I thought I would all my life, but that is okay. I will graduate someday, but for now, I am just happy to be where I am—feeling good and thriving.img_3325

 

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I just finished the 80 Day Obsession! If you don’t know what that is, it is a pretty extensiveworkout program from Beachbody that uses cardio, weights and resistance bands. I started it at the end of July. It took me longer than 80 days, due to traveling and sick days, but I did it!

If you would have told me a year ago I would be working out in general, let alone a whole 80 day work out regimen, I would have laughed in your face. A year ago, I thought I was going to die and, at times, I wanted to. I was getting paralyzed every day, all day. I lost all freedoms; no driving, no school, no showering alone, no being alone. It was pure torture. Luckily, I have the most amazing family ever who never gave up on me and helped me get the care I needed.

Now, I am doing amazing; dare I say the best I have felt in these past 6 years. I can’t remember the last time I was paralyzed. Here I am fresh from completing the 80 Day Obsession and I cannot wait to do it again! I am taking 3 classes at school and have A’s in all 3. I also got into the University of Maryland University College so that I can start working more while taking classes.

Oh, and I went to freakin’ California on my own! Yup, last month I went to visit one of my Lymie sisters, Hannah, in California for a few days. It was absolutely amazing and I cannot wait to go back!

In the past, when I have traveled I would have to prepare for the aftermath. I would go away, comeback and crash, sleeping for days on end unable to do anything. But not this time. This time, I was full of energy. Do you know what that felt like? It felt like heaven.

Now, this energy has faded a bit since the yucky weather is moving in and I actually got a sinus infection and had to be put on antibiotics. Normally, the antibiotics would have wiped me for weeks, but not this time. They got me down for a few days, (I actually couldn’t muster up the strength to complete day 80 for 4 days!) but it hasn’t even been a week and I am already feeling myself coming around!

The Chinese medicines I am on are a huge factor in why I am feeling better and am able to bounce back quicker. I am so grateful for them! I think after years and years of harsh antibiotics, my body was in shock. These medicines are not only eradicating whatever bacteria are left, but are also healing my body. I am not quite in remission (yet) but I feel pretty darn good.

For the past 6 years, I have felt like a prisoner in my own body. Forced to do whatever my body wanted just so I could function on a daily basis. Now, I am mostly in control. I can dictate what I do, and when I do it. Sometimes I still have to go easy, but my body and I are now in synchronization- for the most part. We are a in a partnership instead of a dictatorship. It took us 6 years, but now we finally understand each other.

I know when I am tired I need to go lighter on my workouts, and then I can still get them done. I know sometimes all I need to do is sit, curled up with a good book to give my body the recovery it needs. The best part is I do not mind doing these things anymore. In the past, I would get angry when I was too sick to work out or do the things I wanted. Now, I am thankful that I can hear when my body is letting me know I am pushing too hard, so that I can take care of it before I crash.

This all really came into perspective when I was away. I called my mom while I was away and told her I had been crying, but they weren’t sad tears, they were happy. I was driving along the Malibu canyon, with my window down, jamming out to Shawn Mendes and it hit me- I am free. I am independent. I am living.

For the first time in 6 years, I can feel my identity other than the “sick girl” coming forward, and I can’t wait to see what’s next.

 

I have an update coming in just a few days, but first I wanted to talk about something going on right now and that is Invisible Illness Awareness week.

Most people see me and see a healthy 20 year old girl. A girl who goes to school, works and exercises like a crazy person, but little do they know what goes on beneath the surface.

I look perfectly fine on the outside. Sure I may look tired sometimes or paler than most, but you’d never suspect that, some days, on the inside I feel like I’m dying.

The pain I have faced the past 6 and half years has definitely been there, you just couldn’t see it. You can’t see the pain that walking sometimes causes. Or the sheer torture it is to touch my head sometimes. You can’t see my heart beating at 120 bpm from my heart palpitations, while just sitting on my couch. You can’t see the full on panic I feel anytime my left side gets weak and I know the paralysis was imminent. You can’t see the nausea I feel all day every day, sometimes for months on end. No, you can’t see it, but it is there.

You may not see the monologues we have with ourselves daily. When we have to convince ourselves that getting out of bed is worth it, or that if we just can get out of our pajamas today it will be a good day. You can’t see how we have to negotiate what our body will use energy on so we can make it through whatever tasks we can. No, you can’t see that.

While I luckily am feeling A LOT better than I have in the past, I still feel these things from time to time-and there are millions of others who are still suffering. There are so many invisible illnesses in the world and you just don’t know about them. If you could see how others suffer, on the inside, maybe you’d be a bit more considerate to them, on the outside. Just because someone doesn’t look sick, doesn’t mean they aren’t fighting a hell of war. We may not look like much on the outside, but I promise we are some of the strongest people you’ll ever know. So all I have to say is never judge a book by its cover-or a warrior for that matter.

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I’ve been sick for a long time-30% of my life so far. In that time, I’ve learned a lot, but one of the most important things is that I’ve learned to take failure out of my vocabulary-and so should you.

In the beginning, every cancelled plan or set back felt like a failure to me. No matter what I did, I could never win in my mind. And that made me afraid.

I would be afraid to go to school sometimes because what if I failed and had to come home early? Or I’d be afraid to make plans with friends in case I failed and had to cancel.

The failure also made me look down at myself. In our society, we can’t help but compare our lives to others. So, when I had to leave school for treatment, I thought I was failing. When I saw friends out doing normal college age things, I thought I was failing.

6 years of these negative, failing thoughts and I finally just realized that I’m not failing-If anything, I am thriving.

I take my days step by step. If I have to have a cup of coffee, I don’t see it as failure but as what my body needs. If I can’t do my workout, I know it’s not failing; I’m just giving my body the rest it deserves. If I eat ice cream, I don’t see it as failing but as giving myself a prize for kicking this disease’s butt all week long.
Yet, some days it’s still hard for me to get into this mindset. Like today, for example, I have the day off and had all these amazing plans for things I was going to do, but I’m not feeling so hot.  So instead, I’m lying in bed all day, not checking anything off of my “to do list.”  And it’s hard to not see that as a failure, but I know that I’m listening to my body and giving it what it needs. If I let the failure thoughts take control, I may try to do things, like exercise, and that will push my body over the edge. So, I just sit back and listen to what my body tells me it needs.

It’s taken me 6 years to get to this point, and sometimes it’s challenging to not see the failures, but I look at how far I have come and know I am doing anything but failing. Living life with a chronic illness makes us put our lives into a different perspective. So no, I am not going to get a degree in 4 years, but I can’t remember the last time I was paralyzed, so I’m not failing. No, I may not be running marathons, but I got up today, so I am not failing.

Every day that we wake up and put our right foot forward when dealing with this horrible disease is a success. So take failure out of your vocabulary. You are not failing, you are a freakin’ badass warrior!

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So, it’s been a few months since the first annual Lyme Education Tour ended, and I realized I never really did a recap. So,  here we go!

This past summer I accompanied Dr. Nancy Fox (my bff, just born a few years apart) on the first Lyme Education tour! Over the course of 6 weeks, we went to over 8 different states, and talked to close to 1,500 children and counselors about Lyme and tick prevention.  This was the most amazing, educational, spontaneous experience I have ever had and I am so honored that Dr. Fox chose me to help her!

So, here a few fun things I learned while on tour:

  • There is always Panera. No matter what state we were in, no matter what time of day, or holiday (shout-out to Independence Day) Panera will always be there for us to provide us with delicious salads!
  • Starbucks is my savior. The amount of Starbucks I consumed over these 6 weeks was astronomical, but without it, I would have turned into a dull blob. So thank you Starbucks for making me into the person I am today.
  • Hotel living can be fun. We stayed in so many different hotels that I honestly can’t count them, but they were all amazing. Each hotel was different and had its own little perks. We had so much fun turning each room into our little “tour headquarters” and trying to figure out how to load and unload all of our equipment was a blast! Although, having an RV would be a lot easier 😉
  • Impromptu trips to NYC are always needed. On our last day of tour, we made a pit-stop at the Today Show and got to see Charlie Puth perform. PLUS, we made it on TV!!

Now here are some Lyme related things I learned:

  • Food allergies can be a foreign concept to many kids. Every time we told these kids that I could no longer eat pizza, cake or anything else that has gluten in it, they FREAKED out! It was actually pretty hilarious that this is what really got them hooked. One kid actually said to me, with the utmost sincerity: “pizza is love.” And I said, “I know, so imagine what it feels like not being able to eat that anymore all because of Lyme disease.” And they were all shook.
  • My life is crazy. I never really think much about my story or what I have been through because it is just how my life has to be. I cannot help what happens or doesn’t happen, and I have learned to live with it. But when I stood there and told these people that just a few months ago, I was spending my days paralyzed, barely able to function, I realized just how crazy this Lyme life is. Everywhere we went, people would comment on how positive I am. And I had never really thought about that before, but I guess I am pretty positive. Every obstacle this disease has thrown at me thus far, I have overcome. I went from being unable to drive myself anywhere, or even bathe myself, to driving through New York City 3 times in 4 weeks with complete ease. This disease can turn your life upside down, and all around in a matter of days, so you just have to learn how to roll with it.
  • This tour is needed. Everywhere we went, the kids had heard of ticks. But, none of them knew what Lyme disease could do. None of the kids, or even the counselors, knew how to properly remove a tick. No one knew that ticks have been found in all 50 states and 7 continents. No one knew the severity of Lyme disease. Yet, in every group, at least 1 person knew someone who had Lyme disease. This disease is everywhere, yet these people had no idea how to protect themselves, or loved ones from it―until they talked to us.

We have already been asked to return next year, and have some new prospects as well. A lot of the kids said they wish they could even learn more about Lyme!

 I think this tour really taught these kids a lot―I  know I learned something from it. I hope that our message continues to spread, and hopefully, next year, we can help prevent more children from falling victim to Lyme disease.

 

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Instagram: @lymeeducationtour

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