A Lyme Disease Blog Sharing Support & Awareness

The Secret To Happiness? Living for YOU

3/25/2018

Here’s one thing you should know about me: I love to eat. The word “hangry” might as well be my middle name, because when I feel deprived of my cravings I get crabby & grumpy fast. Now in contrast, my brother is someone who eats to live. He couldn’t care less about what he eats, he just sees it as a way to sustain life. I on the other hand, live to eat. I’ve been this way for as long as I can remember, and when we went on family vacations I’d spend my breakfast browsing through the local leaflets & phone directory to pick out dinner options. I was a bit of an odd ball growing up, but those stories are saved for another day.

I digress..

When I had to go on the Lyme Diet the first 2 things I gave up were gluten & sugar. I remember those next 3 weeks so vividly because not only did I have a heck of a sugar hangover from withdrawal, I was also supremely grumpy. I felt like there was absolutely nothing I could eat because everything I had loved also had gluten in it. I call myself a “carbnivore” because I’d be just as happy eating a loaf of bread and a cheese plate for a meal as most other people would be with a steak. I’ve never been keen on meat, but boy do I adore those sweet sweet carbs. During Thanksgiving I am known to eat all the side dishes while the actual Turkey on the table has 0 priority in my eyes.

Point is, I thrive on carbs. Now another thing you should know about me is that I am very thin & I’ve been this way since I was a child due to my genetics. This can be both a blessing and a curse, because it’s hard work to put on weight yet very easy to lose it. That sounds fine and dandy until you combine it with something like Lyme or Crohn’s & then things get bad fast. I require high calories & high fat or I waste away quickly. My daily worries now consist of me asking myself “am I eating enough?” on a loop 24/7. It’s exhausting.

I love to eat & the Lyme diet was a tough adjustment. I saw other bloggers who did similar diets eating mostly all vegetables, lean meats and green smoothies and I thought, “this is my own personal nightmare.” There wasn’t a carb to be found anywhere & while I tried this super strict “healthy plant based lifestyle" I found that I kept dropping weight, my mood was terrible & I felt completely unfulfilled.

Then my mom (bless her) sat me down and we decided that we had to change how we approached my diet. This was also around the time that Pinterest began picking up steam, and a treasure trove of recipes were at our fingertips (bless you too Pinterest). We decided to take all of my favorite foods & simply alter them to become “Christina friendly.” This way I could still have pizza, pasta, cupcakes & enchiladas, but they would be gluten free, sugar free, soy free, corn free, mostly dairy free etc. And you know what I found? I felt great, I was putting on weight, and I felt happy and fulfilled.

You might ask, "that was quite a while ago, how are you doing now?" Well, I still eat veggies daily, I alternate in lean meat a few times a week & we keep a variety of dishes in rotation; from Italian, to Mexican, to Hungarian, to American & everything in between. I follow my body, listen to how it responds and act accordingly. This works for me, and it makes me feel so good. When we recreate a lasagna or stroganoff that is “Christina friendly” it feels amazing and mentally keeps my spirits up as well.

So what’s the point of telling you this? It’s just to say, you do you. Follow what works for you & don’t ever let the internet shame you into feeling like you have to do something a certain way. It’s nice to see people eating these colorful plant based veggie heavy diets, but realistically that looks like torture to me. I can’t sustain on that & I got tired of feeling like I was somehow not being “zen” or “clean enough” if I ate differently. I got tired of new documentaries preaching go me about what is good and what isn’t good. Truth is I could meet someone and we could both be avoiding gluten, dairy, eggs, sugar etc & it can look 2 totally different ways. That’s fine. In fact for a long time I used milk, cheese & butter in my diet because I didn’t feel better or worse when I did and it helped a lot with my weight. And eventually I had to remove dairy because my stomach said, “enough” and then we changed course. It’s been an ever evolving and shifting diet as I factor in food allergies/intolerances, but I told myself that I refuse to feel deprived. I refuse to be mentally stressed out or shamed for what I do or don’t eat. I have to survive & what helps me do that is my prerogative. What helps you survive & fight your illness is your prerogative. You do you, and if it feels good for your body and soul then keep at it.

I don’t often discuss my diet in detail on this blog because for one, I’m not a chef. My mom is the chef in our household & she holds all the secrets to how she makes the magic work in the kitchen. Two, I eat by my cravings. I follow what I crave & adapt the recipe to fit. No joke I often watch tv and someone will eat something that looks tasty, which then sparks a craving, and my family instantly knows it will be tomorrow’s dinner. Same with sweets. If I had $1 for every time the Great British Baking Show inspired a dessert, I’d be very wealthy. And thirdly, when I have a Crohn’s flare up I go back to a liquid diet (bless you Kate Farms), and that can last anywhere from a day to a week to several weeks. It’s ever changing, and I just go with the flow. Sometimes I have periods where I do half solid food & half liquid shakes. It is what it is. But when I can eat, I go all out.

Moral of the story, while the internet is a great big inspiring place, don’t let it box you in. Eat what feels good, eat what your body allows. And if it doesn’t look picturesque or like someone’s colorful Instagram feed that’s still A-okay. Take it from me, if you focus on living for YOU then life will feel a lot more free.

xoxo,
Christina

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Stop To Feel Your 'Thanks'

11/23/2017

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Every year around Thanksgiving we get bombarded with advertisements & home decor everywhere reminding us to "Give Thanks." And every year on Thanksgiving Day you might sit around your dinner table with your family and friends and say what you're thankful for. It almost becomes a bit monotonous year after year, and if you are anything like how I was, then as the years passed by it sort of lost its meaning. By the time I was 18 Thanksgiving was just a time to come home, reunite with old friends & eat a ton of food with my family. Sure, we would stop once to give thanks, but outside of that quick 5 minute window I didn't give much thought to it. By the time Black Friday came around it was on to the next thing and my mind became focused on all things Christmas.

'Giving thanks fatigue" is a very real thing in our fast paced world. In that quick moment when I stopped to think about it sure I was mildly thankful. But truth be told, by the next day it was out of sight out of mind. I did not carry it with me into the following days or months the way I wished I did. Life happens & we go back to our busy jobs and eat turkey leftovers while never giving a second thought to those 'thanks.'

When I was young our church took us to a local Soup Kitchen & Food Pantry around Thanksgiving to volunteer. We wrote cards to sick children in need, and visited lonely seniors in retirement homes. In those moments it really hit me just how lucky I was for my life. But even then, even after that, I wasn't ever actually thinking it was a possibility to lose it. We never think that. When you see people down on their luck or in heartbreaking situations you might stop to think, "wow, thank you God for my home, my access to food, a warm bed, etc." But we just expect that these things will always be there.

I don't think I truly grasped what I was thankful for until my health did a 180. I know I know, how utterly cliche. Trust me, I'm aware of that. But I'm the first to admit that I got a big serving of humble pie when my health began to fail me. It was the first time that it occurred to me that things in life weren't always guaranteed. My stable foundation became shook when Doctor after Doctor failed to help me. I grew up thinking I'd always be fine because I had access to healthcare & parents who can afford to take me to the Doctor. While I sympathized with people who were down on their luck I had assumed that could never be me.

When I landed back in my childhood home in my 20's lying in bed 24/7 watching the seasons pass, I felt incredibly down on my luck. I became the person in need of prayers, visitors, and kind words. But most importantly I realized then in that moment that it could happen to me. And boy oh boy did I wish then that I was more thankful during all the years prior when I felt better. I wished I had genuinely cherished what it felt like to be healthy, devoid of pain, eating my favorite foods and surrounded by the ones I love.

Since then Thanksgiving has taken on a different meaning. I stop every year to write a long list of everything I am thankful for (which I usually blog about). And when I write it I actually stop, close my eyes, and image what it feels like. For example, I'm so thankful for my loving pup. So I stop, I imagine how sweet it is when she nuzzles her cold furry nose into my neck, and I hold that feeling. I want to hold onto it longer than a fleeting moment so I really realize how lucky I am for her.

Whoever you are reading this right now, I want to urge you to do the same. Stop and actually feel your 'thanks,' as cheesy as that sounds. One day you might not have the things around you, and you don't want to walk around with regret that you didn't cherish it more. Thanksgiving is just a small nudge to remind us of that. The holiday might pass by in a whirlwind & it might just feel like a hectic crazy day you want to skip. But even if you do breeze through it or skip it all together, I hope that you keep the theme of it with you regardless.

No matter where you are at in life right now I promise you have something to be thankful for. Look down at whatever device you are reading this on, and soak in the fact that you have access to the internet, to information, and to electronics that people in some parts of the world have never heard of. And if you feel like nobody cares or you're alone, please email me. I care.

I'm thankful for all of you who read this blog and to everyone who encourages me. And I wish you a happy and thankful day!

xoxo,
Christina

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We Are All In The Gutter, But Some Of Us Are Looking At The Stars

11/17/2017

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We are all in the gutter, but some of us are looking at the stars

Where do I begin?

I love this quote for so many reasons. Perhaps it's the imagery of the stars and my love for the night sky which resonated. Perhaps it's that Oscar Wilde wrote it, who also wrote incredible works like The Picture of Dorian Gray. And maybe it's all of these things together, combined with the heavy truth of it's words.

Every single person on earth is going to experience times when they feel like they are at rock bottom. This phenomenon is not exclusive to any one group of people, and those who seem to "have it all" are not immune to it either. Maybe it seems naive, but prior to this journey it did not occur to me that life could be hard for people who seemed to have it all together. I would look at those kinds of people and feel like they had some sort of secret that I wasn't being let in on. Well, it turns out the big secret I didn't know is that just because someone displays a perfect put together image on the outside, it doesn't alway mean their life is perfect on the inside.

For so long I held the belief that grief paints itself the same hue on everyone, and that sickness always looks glaringly obvious with sullen skin, hollow eyes and a sadness that is palpable. But that simply isn't true.

It wasn't until my life got turned upside down from Lyme Disease when I realized that even through the toughest moments I still had the option to seek the stars and hold a positive outlook. I could choose to be joyful despite my circumstances, and I could be hopeful despite what certain tests did or didn't say. These outcomes didn't need to be carried with me in every aspect of my life and bring me down. I could compartmentalize and take the time to be sad, or overwhelmed, or stressed, and then leave those emotions there in that box while I took a break from the 24/7 worries of fighting this illness. I could have different facets of my life, and they didn't need to rub off on one and other. My stress or sadness shouldn't spread like a virus into other parts of my soul. I could be "happy Christina," while simultaneously being "worried about my recent test results Christina," and "fighting a stomach-ache Christina," and still change out of my pajamas to enjoy a holiday. It doesn't have to consume me, and it doesn't have to consume you either.

Maybe I don't "look sick," and maybe not everyone will understand me or my situation. That's ok. I used to worry that by putting my best foot forward I was making it harder for people to understand my pain. But in all honesty I bare my soul and my worries and grief on this blog for the whole world to see 24/7. However, the joy I choose to cling to doesn't negate that. I can be happy and look happy while fighting my challenges internally. It's a conscious and personal choice deciding how much of ourselves we want to show the world. That's why the person you look at on Instagram who seems to 'have it all' can still be carrying some heavy burdens. Their secret isn't that they are perfect, but rather that they are not. They are imperfect humans just like you or I, and the truth is that they are trying to get by like everyone else.

Once I realized that I can go out into the world and look around at all the of the most joyful happy people, and they could still be fighting hardships, it changed my outlook on life. Or perhaps rather it changed my perception of how I saw my own life. Because the only person who knows how happy or "perfect" someone else's life is, is that person. No one else on earth will ever know what's going on in their mind and in their soul. You can look at 3 happy people all displaying their great lives, and one might be suicidal, the other might be dealing with a loss, and the third might really just be joyful. How will you ever know which is which? Unless they tell you, you won't. Real actual joy comes from inside of you, and it doesn't depend on what you have or don't have. Only you know what is inside your soul, and that's the only thing that matters.

We can't choose the hardships life will throw us. No one can. But the one thing in life you DO choose is your outlook. You choose if you want to live and fight, you choose if you want to keep taking steps and climbing out of the hole when you hit rock bottom. We will all have hard days where we might want to give up because the stresses of life feel all consuming. I have those days. I have days where I'm grumpy, I'm a debbie-downer, and I'm not joyful. I'm human. I let myself feel how I need to feel for a while, and then I pick myself up and keep moving forward.

Because remember: We are ALL in the gutter, but some of us are looking at the stars. Be the someone who is looking at the stars.

xoxo,
Christina

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Seeing The Past Through "Rose Colored Glasses."

10/11/2017

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"You're looking at the past through Rose Colored Glasses."

I'm sure we've all heard that phrase used before to describe the phenomenon of seeing the past as better than the present. It's an interesting paradox, and I remember being fascinated with it when I studied it in class. The term was coined when studies found that people looked back with fondness on the "good old days of past," often describing it as simpler happier times. However, the past the participants looked back on fondly included wars, famines & other awful things which their brain simply omitted. Even now, we can get nostalgic for our childhoods or for older times when life just seemed better. The 'Rose Colored Glasses' paint the past as a place we long to go back to, because of its' superiority to the present. But when one removes those glasses they often face the cold hard truth that the past is rarely better. There are many theories for why this phenomenon exists: Perhaps it's a coping mechanism the brain uses to get through present hardships. Perhaps it's denial. We may never know for sure.

Having a Psychology degree made me very self aware of the ways our mind can play tricks on us. However, I still fell for the trap of 'Rose Colored Glasses.' For a very long time after I got sick (and began treatment 24/7), I longed to get my old life back. My life "pre diagnoses" looked perfect to me. I wanted to turn back time and go right back to my old city, be with my old friends, do all my old things. To me it looked like the ideal time, and truthfully that is absolutely absurd because my life pre-diagnosis was hell. I was barely managing symptoms, skipping days of work due to pain, had very high stress, and absolutely no activity was enjoyable. Why on earth would I want that back??

Well my friends, that's how strong the pull of those 'Rose Colored Glasses' were. My life changed quickly and drastically after I learned I had Lyme Disease. Suddenly, instead of going to work and grabbing dinner with friends it consisted of me lying in bed day after day, watching the months pass by as I suffered through endless treatments...and it felt like a nightmare. In that moment I would have done anything to trade it for the years before, because at least then I had a social life and a semblance of independence. So I clung to that, and I wished so badly that I could go back to it. Every single day in my mind I was mentally living in the past, and you absolutely could not have convinced me that my old life was anything but perfect.

At some point as the years went by, things changed. The glasses came off and I finally saw my past for what it was. Truthfully, it was not a particularly fun pill to swallow. My denial kept me safe, and removing the 'Rose Colored Glasses' made me face many hard truths. But facing those hard truths allowed me to realize that I want WAY better for myself than my past. It allowed me to get unstuck & see that I would rather fight through these hard battles in the present for the promise of a BETTER future.

I do not want to be merely surviving, I want to be thriving. I do not want a life full of stress and chaos, I want a life of peace and certainty. I do not want fickle friendships, I want to fortify my relationships with those who really support and love me. I do not want to be constantly reminded of pain, I want to create new memories with joy.

I used to want to go back to my old city and plop back into my old life. Now, I honestly would be content if never set foot back in that place. All I would see everywhere I looked are bad memories, pain & sadness. I had a very rough time pre-diagnosis and I can't think of one location or event that doesn't have a painful memory tied to it in some way. "Oh look, there's the restaurant where I got into an argument with a friend for leaving early and being flaky when a migraine hit." "Oh look, there's the stadium where I had to hide in the port a potty for 30 minutes while my anxiety attack passed." "Oh look, there's the Kroger I doubled over in pain in." It's remarkable what you can see when you don't pretend the past is a safe haven. In a way it's sad, because all my wonderful memories over the 5+ years I lived there are overshadowed. Even the happiest memories have fine print attached to them, pointing out another instance when something not so great happened. It might sound so strange to some of you reading this, but if you've ever been through something traumatic you will likely understand. The brain will shield you from that trauma, often near erasing it from your memory if you let it. But as soon as you unmask what's behind the curtain and take a good hard look, the pain can feel crushing.

All I do know is that I want and need my future to be devoid of that. I want a fresh start & a happier more balanced life. And I want that for myself in the NOW. I refuse to wait for some future date to be happy or wait around to create my joy. This is why I relish any good day or any achievement I have now. Because I want to tie all my happy memories together and let them be stand alone moments which stick in my brain. I don't want to look around my childhood home and only see pain. I want to see milestones, accomplishments & wins. I want to see friends who've came to visit & stuck by my side reminding me that I'm loved. I want to see the goodness from my God who continues to give me hope. So that even when I look back on this past without Rose Colored Glasses, I will see it's truth, but I will also see it's joy.

Xoxo,
Christina

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Things I Love

7/27/2017

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I love the smell of cinnamon rolls on a Sunday morning, and the sound of paws on hardwood floor.
I love stargazer lilies, the smell of popcorn, and the first sip of a vanilla latte.
I love the feeling of crawling into bed with fresh sheets, colorful sunsets, and when you can notice that the seasons are changing.
I love the feeling of an ocean breeze, my dogs eyes, old pictures, and peacock feathers.
I love animal footprints in the snow, discovering old letters, and genuine laughs.
I love ice cold tea and steaming hot coffee; I love a bouquet of Mylar balloons.
I love the feeling of discovering a new audiobook, foreign coins, antique jewelry, and fluffy clouds on a Spring day.
I love a dog's wagging tail, a cat's rough tongue, sprinkles, and the sand between my toes.
I love my mom's laugh, and my dad's jokes; I love my brother's smile when he pets a dog.
I love stargazing in the night sky, stained glass cathedrals, the feeling of silk, and giving a gift.
I love receiving a handwritten note, sparklers, a basket of shiny ornaments, and the smell of a fresh cut Christmas tree.
I love watching people's eyes when they make a wish, blue topaz, a thrilling mystery, and fortune cookies.
I love the smell of tennis balls, the crinkle of a new bible, fireworks, and escaping into a good book.
I love stories from my parent's childhood, colorful embroidery, waffle cones, and the gentle sigh of my dog when she's content.
I love double rainbows after a heavy rainstorm, fleece on cold skin, and otters who hold hands when they swim.

But most of all, I love my family, I love my friends. I love my life.

Xoxo,
Christina

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Dear Kelly Osbourne: Lyme Disease Is Not A Punchline, Nor Is It a "Trendy Disease."

4/6/2017

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I know I might not hold the "popular" opinion on this topic, but I felt like this needed to be said. As more celebrities come out and speak of Lyme Disease it's really important to hold them accountable for how their words affect each and every patient globally.

Kelly Osbourne is releasing a memoir about her life. Yesterday, lot of media outlets got an advanced copy, and when they read her chapter on how she battled Lyme Disease they wrote up news pieces with titles such as "Kelly Osbourne Almost Died From Diagnosed Lyme Disease" and "Kelly Osbourne reveals stage 3 neurological Lyme Disease diagnosis in new memoir." Pretty shocking headlines! When I saw them I felt shock, then sadness for her. But as I waited on the article to load I also felt hopeful. I thought, "Wow, another celebrity will help advocate!" However, then I read the article and I was utterly disappointed. Her snippet goes as follows:

Trendy disease... that struck a nerve. So let's break it down, shall we? Yes, in Hollywood there are more and more celebrities coming out and sharing the hell they went through when they contracted Lyme Disease. It's not just Yolanda Foster; it's Avril Lavigne, it's Crystal Hefner, it's Kris Kristofferson, it's Debbie Gibson, it's Ally Hilfiger and so many more. They have lent their voices to the cause, they have advocated for the little people & they have given a face of legitimacy to this cause. This is so important and necessary right now, because for every one celebrity speaking out there are 10 other voices saying chronic Lyme disease isn't real. Patients are mocked by doctors telling them "it's all in your head" & have to fight tirelessly to be taken seriously.

If you watched the Real Housewives of Beverly Hills you saw Yolanda Foster fighting through 2 seasons of ruthless women saying she has Munchausen syndrome. They all speculated if her illness is real and gossiped about if she's even truly sick or not. She put up with a LOT, and sadly it's what so many people go through. In fact, Yolanda is releasing a book this year called "Believe Me: My Battle With The Invisible Disability of Lyme Disease" which is a memoir about her fight with Lyme. Even Yolanda, a well known figure, had to fight through getting made fun of & not being believed. It's hard out there for a patient! Therefore calling it a "trendy disease" is so hurtful to our cause. Because oh yes Kelly, everyone is just begging to be diagnosed with a life altering illness! People are lining up with the hopes of contracting Lyme disease so they can suffer through hell & lose pieces of their lives. Is she kidding?? Mind you this was in her book... it was proofread and edited MANY times. This went to print, with the full knowledge of what those words meant. This wasn't a slip of the tongue or an accidental comment. That's what makes it so much worse.

My next question would be, what does the fact that she believes it to be a "trendy disease" have to do with her not speaking out sooner? Is there some rule in Hollywood that only X amount of people can have a particular disease? I absolutely do not understand how that plays into a reason to not speak out. I could get her saying it was private & she felt like she wanted to keep it to herself. But that's not what she said. It's like, whoops too many celebrities beat her to the punch so she couldn't speak out about it? It's baffling to me. Because then I ask the question of, why now? Is now a good time to admit you had this "trendy Disease" because you had a book to write & it made for a chapter with drama? Lyme Disease is not a punch line, it is not a thing to be used for book sales or headlines. This disease takes people's lives. This disease is ruthless, and I do not take kindly to what feels like an insult to this community.

So what should she have said? If her point was that a lot of famous people have recently shared their diagnosis of Lyme disease then maybe let's look at WHY that's the case. Lyme disease is an epidemic, and its growing every single year by astronomical proportions. It is the fastest growing vector borne infectious disease in the United States. It's only natural that it would also affect celebrities, because no one is immune to it. Kelly had a great opportunity to parlay that sentiment into discussing how Lyme disease is a growing epidemic & how so many people (famous or not) are being diagnosed daily. But she chose not to. She had this great moment to convey that, but ultimately she chose poorly.

There are good advocates & there are bad advocates. Kelly is an example of a bad celebrity advocate. Do I believe she suffered? Of course I do. But I also believe she lives in a bubble most Lyme patients do not. She had the money, connections & resources to call up a personal Doctor, fly to Germany & get expensive specialized stem cell therapy and care. She is lucky and blessed enough to call herself cured and healed. For her it was a quick fix & an easy fix. Perhaps that bubble she lives in leaves her far removed from seeing the real suffering and horrors that every day normal patients go through. Perhaps she lives in a different world in Hollywood & that was her experience. Maybe in her mind it was a "trendy disease" that she felt embarrassed to be lumped in to. So she stayed quiet, got well & went on with her life. Good for her, but that is not reality. Lyme patients would do anything to get well in a snap. Unfortunately that isn't the case for the majority, yet in her memoir (which is making rounds nationally) it was portrayed as such. Like hey, no big deal, just a quick 2 week treatment and you'll be fine! This will only fuel the skeptics & the people who wonder why Lyme takes so many years & years to recover from.

What happens now is her choice. If she really cares she could use her celebrity status for good. She could lend her star power to raising money for advancements in research. She could team up with any of the organizations for awareness campaigns. The possibilities are endless. But I suspect that once this gets her book sales she will fade into the background and not speak up about it again. That is certainly her prerogative, and its certainly her decision how much of her personal life and health she shares with the world. But boy would I love to be surprised and be wrong about this. I hope she realizes her mistake and apologizes. I would LOVE to see that happen.

I really feel like she hurt the greater cause and only furthered her own cause by telling a quick jarring story as a snippet in her book, with no regard for how her words will hurt a community who has fought tirelessly for recognition.

I promise you that Lyme disease is not "trendy" by choice. Perhaps Kelly should take a gander at the Lyme Disease obituary page to see that. This is an epidemic on the rise, and as an advocate I will never stop fighting for the recognition of this disease globally. I hope her words don't undo any progress that was made, because we have all fought way too hard for every single ounce of advancement which was made to this cause.

xoxo,
Christina

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"Pain without the WHY"

3/29/2017

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Pain is as much of a mental game as it is a physical one. This is true on many levels, one being just the simple fact that in order to muscle through pain you have to stay in a good head space and remind yourself that it will pass. You have to keep the hope that you will get through it, or else it will consume you. This is something I've known for a long time, but it's only recently that I've become even more aware of another way in which pain is a mental game; the unknown.

When I began my very first treatment for Bartonella I had mentally prepared myself. I knew my symptoms would flare, I knew I would experience herxheimer reactions, and I knew that while on treatment things could be unpredictable. But the key here is that I knew why all of that was going to happen. Therefore when my symptoms did inevitably flare I understood that my pain was a direct cause and effect of treatment, and therefore I was prepared & educated. Somehow on a mental level that helped me get through it.

It's a little bit like getting your ear pierced. Let's say we have Person 1. While her ear is being prepped she is told that she will have a few moments of quick pain as the piercing gun goes through, and then afterwards there will be some soreness. Person 1 is prepared with all the info needed, and surprisingly the piercing isn't so bad. Then you have Person 2. She is blindfolded and can't hear, but she's just minding her own business kicked back on a couch relaxing. Then suddenly out of nowhere a sharp stab goes through her ear and it begins to throb and ache. Person 2 is frantically trying to figure out what just happened, how to make the pain stop, or what to do. The same exact thing happened to both people (their ears were pierced), but one was prepared & knew WHY the pain would come. Which person do you imagine would report the highest levels of pain for the same procedure? Yup.. Person 2!

Now that was a silly example, but it was the closest real world comparison which I was able to think of. Mentally, knowing that pain is coming, or even knowing WHY it's happening makes it more bearable. I've experienced this phenomenon time and time again. I've been up against some of the most brutal herxheimer's during my time in treatment, and my family can attest that I pushed through them like a boss. I was physically exhausted and going through the ringer, but I was mentally still swinging. I had a purpose & there was a cause for my pain. I understood that, and even if it just took an ounce of the edge off, it helped.

But then there's the other type of pain.. the pain which doesn't have answers. The pain which comes unannounced and doesn't respond to any of the usual methods of relief. The pain which you have to spend hours researching online to find the cause & try to stop it. The pain which is not tied to any kind of direct cause & effect which you can see. The pain which brings you to your knees mentally. This is the pain which exists without the WHY, and it exists in such a powerful way that you wonder if you will survive it. You wonder if you're slowly dying on the inside. You begin to wonder if you're going crazy or if something is seriously wrong and you're just missing it. Tears are shed; from frustration, from fear, from the unknown. Suddenly nothing feels like it makes sense, and your only purpose is working backwards to find the puzzle pieces which will stop this pain.

Sometimes I feel myself crack underneath my strong exterior. I feel the sadness levels rise as they pull me under the waves of helplessness. And those times are when I'm living in the world of "Pain without the WHY." My mind starts to lose steam when it doesn't have any concrete answers to fuel it. Pain feels much tougher to bear when it doesn't come with an expiration date. When will it end? Why did it start? How can I ease it? What triggers it? Living in a world without the WHY is like living in a snow globe where the same song is playing over and over but you can't escape. You're simply trapped with the unidentified pain searing your body on repeat.

I have yet to find a good way to cope when I'm stuck in the land of "Pain without the WHY." I wish I could say some prayer or meditation get me through the long months between answers. I wish I could say anything actually does it for me, but truly the only way I keep going is by never giving up investigating. I put my detective cap on & I start to hunt down the clues my body gives me. I pair that with test results & gut instincts until somehow it starts to translate into real world results. I've learned that no one else is going to fight for you if you don't do it. No one else is going to solve your worries, your pains, your fears. Mentally it's just you. And ironically the very thing which breaks you (the pain), is the very thing which won't stop until you put the work in to make it stop. Living in the "Pain without the WHY" is a lonely locale. Table for 1 please. It's isolating to be on a deserted island fishing for answers, and sometimes it wears on the soul.

But I know that the one thing I'm not alone in is this feeling. If you've experienced pain then you know the difference between pain with a purpose vs pain without answers. They live on different scales, and it feels like they exist in different realms. It's a mental game through & through, and only the strongest survive. So here's to strength... strength in the darkest hours, strength in the longest months, and finding enough strength to keep the boat afloat until it lands back on the shore of certainty.

Xoxo,
Christina

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A Tango Of Sadness & Hope

12/6/2016

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I write a lot. I write when I feel; I write when I need to be able to feel. Words soothe me in a way that makes me feel understood, even if it's just to myself in the quiet darkness of the 2am night. I wrote this during a particularly difficult time not too long ago, and the words still strike me in a way that feels significant. I wanted to share. Perhaps it will be just what someone else out there needs.

Sadness can rob the world of color. It makes everything gray. The sky doesn't look quite so blue, and the stars don't twinkle much the same anymore. The air in the room feels heavier; like the invisible weight of all my worries are trickling through each breath. I breathe in the sorrow surrounding me, and it's almost as if it comes to life. This numbness feels familiar, like an old friend embracing me tightly until I'm stuck in its shackles. Ever so slowly the sadness spreads its reach and holds my heart hostage; weaving it's hooks through everything that used to bring me joy. Bit by bit melancholy becomes a part of every day life, and I look around to find I don't know exactly who I am anymore.

Amidst all the sadness which has attached itself to my soul, I push through it to reach a small glowing ball of what I call Hope. This Hope is small, but mighty. Although it's just a tiny flickering light, it shines through all the darkness and pain. This light breaks through the shadows of doubt, the weight on my shoulders, and the voice in my head telling me to give up. You see, Hope doesn't need to always be seen to be felt. That warmth in my heart, that tingle in my chest... It lets me know I'm alive. It let's me know that it won't let me go under. Like a lifeguard in treacherous waves, Hope saves me when I can't see a way out. It provides a buoy to float on just long enough to pick myself up and start feeling again.

Some days Hope might feel like it's in short supply, and almost obsolete. But it's there. All that matters is in that moment it's still there lighting it's flame in the darkness. Each flicker, no matter how small, signals to "keep going," "keep fighting." It tells you, "I will see you through. I will light your path through this long tunnel, just follow me. Stay with me. Don't give up on me now. We're almost there."

xoxo,
Christina

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Lyme Diseases: Is It Curable & What Does That Mean?

10/23/2016

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I recently had an discussion about the word "incurable" being used when discussing Lyme Disease. This friend disliked that sentiment because she felt like it paints a negative light since many people do recover, and for someone close to her that word was upsetting hear (in association with his illness). We had a back and forth discussion about this very topic, which I wanted to expand upon here. It got the wheels in my mind turning as to what exactly goes into getting well from Lyme Disease, and what the word "cure" means to me.

The reason that Lyme disease is such a tangled web is because each and every patient is different. If you talk to an LLMD they will tell you that one treatment approach will not get all of their patients well. Treatment has to be tailored, and that's everything from the meds they use, to the kinds of supplements, to the kinds of support care, and even what needs repaired in the body. It's so complex, mostly due to the variables like co-infections, how long a person has been ill, how long it's been untreated, how far it's spread, etc. Each patient is an onion that needs to be peeled back and treated according to their needs specifically.

So what's the trouble with this model?

The way that Lyme Disease treatment is now is essentially survival of those who have the means, the money, and the access to the right Doctors. I can't even begin to estimate the out of pocket expenses incurred since I began my quest to wellness. If my parents didn't fork up money for hundreds of different trial medicines, supplements, etc then I truly believe I would not be here today. I have a body type that is highly sensitive, and very highly reactive. I have a Doctor who works with my sensitivities and has taken an approach to healing that is gentle and tailor made for me. This Doctor spends hundreds of hours a year at different conferences constantly furthering his education to help his patients with cutting edge treatment. This Doctor is also 100% out of pocket, because my insurance (and most insurance) does not cover his care. He is one of the best but his care comes at a large cost, not to mention an almost year long wait list.

I know people suffering, I know families suffering, and I know that it isn't fair to those left out in the cold. Just because I have the money, resources, or perhaps good fortune to find the Doctor or Doctors who will help find what works for me, and put me back piece by piece, it doesn't mean others have that same luxury. This is where the topic of finding a "cure" comes into play, because as of now healing from Lyme Disease is trial and error. It is trial and error in finding the right Doctor, and hoping he/she is close enough to get to them. It is trial and error in finding the Western/Eastern medicine to use that works with a patients body chemistry. It's trial and error in so many ways, that YES you can get well, but it takes a village and lots of research and many moving pieces to get there. And we have to acknowledge that not every patient has these luxuries. I see so many campaigns by people raising money for treatment because they can't afford the cost of what they need to save their life. It is utterly heartbreaking.

When I say I want a "Cure" for Lyme Disease, it's a cure that works for every patient, every time. A great example is looking at cancer. Even though many people survive cancer and live full healthy lives it is not regarded as a curable illness. The "cure for cancer" runs and fundraisers are widespread, and rightfully so. Until they can find a treatment that works for every patient and rids the word of cancer, making it an easily beatable condition, it will be seen an needing a "cure." This is how I view my quest as well, and I fight to find a cure that doesn't let anyone slip between the cracks.

I understood my friend's viewpoint that saying Lyme disease is "incurable" can be a tough word choice, because by most that word is reserved for things like AIDS, which is truly not curable. And I understand that in contrast many Lyme patients do go on to live full lives and feel well. So the word "incurable" can be tricky.. but there is a middle ground between "incurable" and "having a cure." That mid-ground is what so many large organizations are fighting for, such as Lyme Alliance. They are working to fund research to have a "Lyme Free World." Yolanda Foster often references finding "A cure affordable for all." This is the tone that many people have when discussing the sentiment of finding a cure for Lyme Disease, myself included.

Will some people still say it is incurable, and use that word to describe it? Yes, probably. But I don't believe the tone behind that is to be negative or deceptive. I've been asked before, "When will you be cured?" And this question is always a bit difficult to answer.

Which leads me to my second point..

What do I mean when I say "Cure?" What is my definition of a patient who is indeed cured of Lyme Disease? From what we understand about Borrelia, it can hide in biofilm, or cysts, or deep in tissue, that means that extreme care needs to go into staying on top of it. If the immune system drops down then it can thrive again, and that's how many people relapse. To me, a "Cure" means that it's gone forever. It mean's that there would be a treatment that would kill every last bacteria in every form in every part of the body so there is no worry or question of it EVER coming back. THAT is a cure. In a broader term it means accurate testing to catch the disease as soon as the patient gets ill, and it means better recognition with insurance so that all treatment is covered.

The thing here is that I speak to way too many patients for me to have a singular opinion. I can't pretend that just because I could hypothetically find a way to get well, that suddenly it's curable and fine. I have spoke to many patient's who were well and seemingly "cured" for years. And then divorce happened, or a large surgery happened, and boom they hit a full on relapse. We can't pretend that does not occur, because it does, and those people are a perfect example of why I will always fight to fund research for a CURE. Because we all deserve a LASTING cure, and a REAL cure.

In summary, I understand why the word "incurable" can be a hot button word for some, and disliked when it's used in relation to Lyme Disease. But in other ways I do feel that we don't live in a world which has a cure (by my above definition) for this disease. Right now, as I write this in 2016 it doesn't exist. Are there people who have recovered and stayed well for 10-20+ years? Yes. But those people are not the majority, and realistically it's not simple to get there. Those who did get there did so with lots of hard work, determination, means, and trial of MANY modalities. And until there are people who are left behind or left struggling, it won't be good enough. Even though I don't personally like to use the word incurable, I can understand why some do. To those who are in the thick of the battle field fighting each day without resources or help, it does feel like every definition of the word "incurable."

So until we have a cure I will continue to advocate for patients, and I will keep trying different therapies and treatments myself to help me heal and reach a state of remission where I am living a full life again. Each and every person who fights this disease is a survivor and a warrior in every sense of the word. And I believe deeply in my healing and your healing as well. But a desire for an ultimate cure will never end, and I won't give that up until that day comes... for everyone.

xoxo,
Christina

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The Best Is Yet To Come

8/15/2016

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When I was around the ripe old age of 15 I went through a phase. Like most young girls growing up in the 90's & early 2000's I transitioned out of The Spice Girls, then into N'sync & right into a band called Simple Plan. They were an alternative rock band & I attended many of their shows, waiting in line for hours to be front row (and to avoid getting swept into in mosh pit). At one of these concerts there was an opening band who sang a song aptly titled, "The Future Freaks Me Out." When I was 15 the song was catchy & the words meant nothing. Now, at 28, the title feels eerily poignant.

When I was 15 the future felt endless and almost boundless. I had big dreams from a very young age. If you asked me what I wanted to do I easily and quickly replied, "fix the injustices of the world & help people!" From the moment I could comprehend what the word "unfair" meant, I knew I was put on this earth to fix all those problems. How? I had no idea.

At 15 I didn't need to know what tomorrow brought or how I would get there. I just knew I wanted to get somewhere & had a blissful naivety as to how I would accomplish it. In my mind nothing felt too big to conquer, and nothing was out of reach. You want the earth the moon & the stars? Let's go get them.

When did that change? Did adulthood and the realities of life sour my perception of the word "future?" Was getting ill and realizing my once strong body could malfunction out of my control create a sobering shockwave of truth? I'm really not sure. At some point the future went from feeling boundless to feeling almost paralyzing.

At 28 I have two versions of the future swirling in my mind, each competing for real estate in my thoughts. There's the picturesque future where I'm healthy & strong, conquering all the diseases riddling my body & riding off into the sunset with my dog. Then there's the future which feels lackluster; riddled with adult sized worries, and a body that is somewhat better but not 100%. Being chained to a laundry list of supplements to get through each day & eating an "everything-free" restrictive diet sounds like my version of a nightmare. I don't want to live a life where a plate of lasagna sends me into a 3 day stomach migraine, or if I forget my mid day supplements I'm up all night sick. I want to eat all the delicious foods to my hearts content without painful repercussions, and go through my days enjoying moments without having pill alarms barking at me 10 times a day. To me, that's not living; that's negotiating with life to just get by. I keep telling myself that CAN'T be the best I achieve. It just can't. That's the future I fear. That's the future which "freaks me out." I only see one way out of this mess, and it's the joyful perfect route that's riding on sunshine. But is that asking for too much? Some days it feels like my ideals have set the bar too high & other days it feels perfectly achievable. These two futures battle one another & no one but God knows who the victor shall be.

Right now my future is in a box, and I view it through the paradox of Shroedinger's cat. This paradox was first introduced to me on one of my favorite TV sitcoms, The Big Bang Theory. It wasn't until much later that I realized how much I would identify with this theory in my every day life.
Simplified, the paradox places a cat inside a box that contains a poisonous vial which is set to break open at a random time. Since no one knows when or if the poison has been released, until the box has been opened the cat can be thought of to be both alive & dead. Therefore while the box is still shut (and the outcome is not observed) the cat is in both states. There is a 50/50 chance that both outcomes are possible.

There are many life decisions & worries which I keep tucked away in such a box. It's my safe space, where I can choose to pick my destiny & see an outcome the way I want it. I'm simply choosing to view the box as holding the key to health & I'm choosing to view my ideal destiny existing on the inside. The future will always be a scary place to someone like me who thrives on knowledge & preparedness. That won't change. But by imagining the outcome I want and picturing my life full of health, I can set goals which I refuse to stray from. Maybe I am asking for "too much" by expecting a certain quality of life back, and that's okay. I would rather dream big & believe that the best IS yet to come, no matter how scary and big it feels.

So until the future becomes the present, I pray. I pray that God gives me the patience and strength to keep taking steps and making progress. I pray that He gives me wisdom and guidance for the hard choices I will make along this journey. I pray that He gives me peace and comfort over whatever future comes my way; and most of all I pray he gives me stillness to quiet the battling voices in my mind & the ability to listen to hear His message.

-xoxo,
Christina

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The Secret To Happiness? Living for YOU

Stop To Feel Your 'Thanks'

We Are All In The Gutter, But Some Of Us Are Looking At The Stars

Seeing The Past Through "Rose Colored Glasses."

Things I Love

Dear Kelly Osbourne: Lyme Disease Is Not A Punchline, Nor Is It a "Trendy Disease."

"Pain without the WHY"

A Tango Of Sadness & Hope

Lyme Diseases: Is It Curable & What Does That Mean?

The Best Is Yet To Come

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