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A 4 Year Reflection

9/23/2015

7 Comments

 
"I can't be the only one.."

Those were some of the first words I uttered when I learned that I had picked up Lyme disease from my small hometown in Kentucky. I was not an outdoorsy person what so ever, so I knew that if I could get bit by a tick and get the disease then there was no telling how many other people were floating around out there misdiagnosed or undiagnosed much like myself. My hometown is a small town. It's the kind of place where everyone pretty much knows everyone else either directly or through a friend. It is not a large city. It is not a northeastern city. But since ticks don't understand state lines, they found their way into Kentucky (and all 50 states); a concept which many Doctors blatantly ignore. The city I live in has a lot of deer due to all the woodsy areas nearby. I can look out my window on any given fall day and see a deer just casually strolling through the yard, and I live in a fully developed quaint neighborhood; not out on a farm.

Prior to being diagnosed with Lyme disease I had never heard of it before in my life. Yes, you read that correctly, I did not even know something called Lyme disease existed; that's how uninformed I was. In September of 2011 when my Doctor delivered the news that I, Christina, avid disliker of grass and general outdoors had Lyme Disease I stared at him with confusion. Upon processing the information I realized if I could get it, then I can't be the only one in my small hometown. I hoped that by a freak coincidence I was bit by the only Lyme carrying tick in the area, but alas I knew that was incredibly unlikely.

My first order of business in May of 2012 was speaking to our local newspaper who so kindly ran an interview with me on the front page where I spoke about Lyme disease existing in the area. I felt like I HAD to get the word out, because it terrified me that everyone was living their lives uninformed, not taking tick checks seriously. The following year a local news station with an even greater reach came to do a TV interview warning people that Lyme disease exists in the tri-state, and more so that it can become a chronic condition. If I could have stood on a mountaintop and yelled "LYME IS HERE" I certainly would have.

The following year I did an interview/piece with a local TV station. After the TV interview I started to meet a lot of others who also were ill with Lyme disease and lived very close by. My worst fear was coming true as I read email after email that said things like, "I have a cousin who has Lyme disease," or "I know a friend who is sick with the same symptoms as you and I think it might be Lyme," and the worst of all, "I too live locally and after many years of sickness and misdiagnosis I was diagnosed with Lyme disease." This wasn't even counting the number of people my parents encountered when they went out in town and someone stopped them to say they saw me on the news and personally were touched by Lyme themselves (either a friend, family member, acquaintance etc). If the reach of this disease could be THAT large in such a small town then I knew the global reach must be astronomical. What an eye opening experience that week was.

I recently learned of another local woman my age who after many years of misdiagnosis had learned she was fighting Lyme disease. Although she moved away from home in recent years to pursue her dreams (much like myself), it was just another 'tick' on the growing number of locals who picked up Lyme disease in this sleepy little town.

Lyme is here. But my town and my story can be switched out with just about any town name in America and the story would fit just the same. A town where no one knew to be careful, where no one thought to pursue their flu like symptoms and demand their Doctor screen for Lyme disease.

It has been 4 years since I was diagnosed, and I take pause to look around at how much the conversation has grown about Lyme disease since 2011. I used to be a taboo; I used to feel like that strange girl everyone looked at with the random disease. But the voices are growing as more people get ill and demand that something be done to stop it. This epidemic can go on no longer, because it has invaded every quiet quaint town from high up north to way down south. Enough is enough.

My greatest prayer is that in the next year the conversation will continue to evolve even more. I hope that I can sit here 1 year from now writing about news that testing has improved, or that the CDC and IDSA came to their senses and acknowledge the scope of what this disease has become. But in the same breath I know a year from now my heart will be that much heavier with the burden of knowing how many more people both locally & globally are receiving a diagnosis that will change their lives.

The time to speak out about Lyme disease is the present, and as larger news stations and websites begin to share I hope that the message gets conveyed sooner and sooner, BEFORE someone gets bit by tick because they aren't wearing a repellent, BEFORE someone ignores the tell tale symptoms, and most importantly BEFORE it becomes a chronic condition.

xoxo,
Christina




7 Comments

Andrew Hurley's Lyme Disease Story: A Witty And Honest Account Of The Ups & Downs Of Beating Lyme Disease

9/16/2015

6 Comments

 
I had the great pleasure of recently connecting up with Andrew Hurley through the wonderful world wide web, and reading his story which left me feeling incredibly inspired and hopeful. I know a lot of readers ask me if I come across patients who are recovering and found their way out of the tunnel of Lyme disease. Andrew's story is exactly that, and I'm so thankful that he bravely agreed to share. From the misdiagnosis, to the low points, and ultimately the victory in the end, this story is full of humor mixed with a serious message that will leave you feeling great hope. Warning, once you begin reading you won't want to stop! I now present to you, Andrew's story...
Picture
Summer 2015. On the road to recovery.
Andrew's Story

There are 3 reasons I want to tell the story about my experience with Lyme Disease: To educate people on this disease and spread awareness of its effects, to provide a beacon of hope for those who are currently suffering with Lyme, and to help people find silver linings during difficult times. My dear, dear friend and mentor Curtis “Fifty Cent” Jackson once said, “Sunny days wouldn't be special, if it wasn't for rain/Joy wouldn't feel so good, if it wasn't for pain.”  Preach on, Fitty!  So, is this a serious story? Yes, it involves my 2 bouts with near suicidal depression. Hey guys, don’t worry - I’m still here. Is this a happy story?  Yes, it involves a man completely changing his life for the better. - Andrew Hurley
Where To Begin?

Let’s start with my Yelp review of Bishop Guertin High School in Nashua, NH: “Class of 2009.  5 stars! Would recommend to others!  I got to drink and be with friends all the time and had not a care in the world. Life is easy!”  Naturally, I assumed life would just keep getting better and better. But as Stephen King once wrote, “The World eventually sends out a mean ass patrol boy to slow your progress and show you who’s boss.  You reading this have undoubtedly met yours (or will).”  

I met the patrol boy during the fall of 2010 in my second year at Northeastern University in Boston. Seemingly out of nowhere I started developing some extreme symptoms that I had never experienced before.  I started feeling horribly depressed, anxious, dizzy, sore, tired, and just overall not like myself.  I heard everyone telling me college was supposed to be the best years of my life, and I panicked.  These are some of the thoughts that were running through my head around the fall of 2010.  Do I have cancer?  I feel so weak I can hardly get out of bed.  I feel tired all of the time.  I’m really dizzy 24/7.  Do I have some sort of chemical imbalance?  I’m suddenly Captain Anxiety and the only power I gained was the ability to compulsively eat pizza like I’m on a game show and the object of the game we’re playing is to eat the most pizza.  Why can’t I think through what I need to pack in a bag for a weekend trip?  Why do I feel like I’m in a dream (and not the cool kind of dream where you can fly or that girl you always had a crush on confesses her love for you)? Am I ever going to feel well again?


Folsom Prison

Lyme Disease affects the brain, so part of the frustration of trying to figure out what was wrong with me was the psychological and physical symptoms of this disease bleeding into one another.  At one point when we were trying to arrive at an explanation and diagnosis, I remember my mom asking, “Okay we know there is a problem here.  But, Andrew, is this physical or is this emotional?”  Thinking I was losing my mind, but still physically feeling like I got hit by a truck, I yelled through tears “I don’t know!”


Lyme is so hard to diagnose that from the Fall of 2010 through the end of 2013 I spent time with doctors that could not figure out what was wrong with me.  They were treating my symptoms instead of figuring out what the root cause of all of this was.  During this time I thought I had something called Adrenal Fatigue (which it turns out I did, but it was just a symptom of Lyme) and gut-health issues that were affecting my brain (sexy, I know).  I tried every remedy under the sun.  Adrenal supplements, bone broth, lots of kale, sinus surgery, and Native American Witch Doctors.  I didn’t try that last one, but I was desperate enough to consider it.


My symptoms did improve somewhat over this time as some of these treatments worked, but they only acted to mask symptoms - I was not actually getting any healthier.  Life ranged from bearable at best to “I can’t take this anymore” at worst.  I kept my head down, kept attending class at Northeastern, and completed three different full time 6-month internships while at school.  Looking back, I have no idea how I did I graduated on time and kept working, but it had to be strength from God.  We’ll get into God a little later.  But for now, here is the turning point.


Help Me, Obi-Wan Kenobi.  You’re My Only Hope.


I did so much research on the human body and doctors in the area from 2010 - 2013 that I basically became Dr. Gregory House (minus the Vicodin addiction).  At the beginning of 2014, I came across this facility in Central Massachusetts called the Ultrawellness Center.  It sounded like the name of a Scientology center so I was skeptical, but it had a fantastic reputation for diagnosing people properly who had bounced around from doctor to doctor without answers.  I booked an appointment for January 4th, 2014.

I saw Dr. Todd Lapine and within about 20 minutes of me telling him the history of the previous 3+ years, he was pretty sure that I had Lyme Disease.  I told him that I couldn’t possibly have Lyme because I was tested back in 2010 when this whole debacle started.  He replied by telling me that Lyme tests are very unreliable and that I most likely had a false negative. Touché, Lapine.  He told me that while Lyme Disease is difficult to diagnose, it is even more difficult to treat. Translation: the battle has just begun.

I drove home that afternoon in a snowstorm that turned a 3-hour drive into a 5-hour drive.  I was completely overwhelmed because I had just had this bomb dropped on me and I was supposed to start my first full-time job that Monday. I got home and went into my room alone for a few hours.  I just wanted to be alone and feel bad for myself.  A few weeks later, I officially got diagnosed with Lyme.  I still have the voicemail on my phone.  The woman leaving the message seemed so nervous… I remember thinking, “you’re not the one with Lyme, so why do you care so much?”  I had to take the next few months day by day.   I started my new job and would pretty much go to bed immediately after getting home every day.  This was a dark time in my life, but I started writing down everything positive from each day, no matter how small it was.  I started actually being treated for Lyme that March when I found a specialist in Hanover, NH.  I have made an incredible amount of progress since then, and I continue to make my way back to health little by little every month.  I have a long way to go, but there is absolutely light at the end of the tunnel.


This Is Major Tom To Ground Control.


I could sit here and tell you how hard my life has been since 2010.  Sorry, I think I am going to do that for me like 30 seconds.  But then it gets happy.  I promise. Have you ever had a problem that you literally couldn’t ever get away from – not even for a minute?  The amount of frustration I had watching my friends have fun and not being able to explain just how sick I was cannot be put into words.  I went to countless doctors who ran countless tests and responded every time with little more than shoulder shrugs.  It made having a girlfriend or meeting new people seem so far out of reach.  How are you supposed to even talk to people when you don’t feel like yourself and you want to crawl in a hole? For a few periods of time, I stopped wearing a seatbelt and considered driving my car into something.  But I don’t want to dwell on all of that.  I want to tell you about some of the amazing lessons I have learned since 2010 and how my life has changed in some unexpectedly beautiful ways.


Fun (With Problems)


So let’s lighten it up, shall we?  Through my years of trying to figure out what was wrong with me, I have learned so much about food. I basically minored in nutrition and completely changed my diet.  I also learned how to cook (LADIES???).  At the time that this all started going down, I hadn’t eaten so much as a carrot since the Bush Administration and would’ve lived inside a pepperoni Hotpocket if given the chance, so this was a big adjustment.  My sophomore year college roommate and I single handedly kept a Papa John’s in business one fall – I’m pretty sure we bathed in the garlic sauce.  Are you seeing a trend? I had a problem.  When I first changed my diet, I lost 55 pounds in about 3 months.  I thought that I was “big boned” my whole life.  Turns out I was just an extra thick milkshake that needed to lose about a quarter of his body weight.

Also, I loved drinking.  I have been crowned “Best drinking partner” on multiple occasions and I believe I deserve that honor.  But I don’t drink anymore.  Yes, it’s for my health, but I am not sure I want to drink even when I can some day. A casual 3 beers with friends around a campfire?  Sounds ideal!  Personally, I can’t do it.  I was always a 100 proof Rum guy.  More specifically I was a “drink too much 100 proof rum and attempt to yell at members of the New York Yankees through the television” guy (this really happened but it was 4 Loko.  OG 4 Loko.  I ain’t no rookie).   Although I feel like the Jimi Hendrix of drinking (cut down in his prime), alcoholism runs deep in my family and I feel like stopping at the age of 20 allowed me to dodge a potentially huge bullet. It’s been about more than just the physically harmful effects of drinking though.  I’ve taught myself how to be comfortable with silence and not rely on alcohol as a social crutch.  I have learned how to ask questions and listen intently during conversations rather than just stay in idle chitchat.  I also haven’t thrown up in almost five years, so I’ve got that going for me… which is nice. And as for me and pepperoni Hotpockets? We are never, ever, ever getting back together.


We Can Rebuild Him...


I have completely different goals, interests, and aspirations than I did a few years ago. I am a more well-rounded person, and I have a clear vision of what I want my future to look like.  Since I have had my health taken away from me for a (temporary) period of time, I now cherish the thoughts of hiking, running, camping, singing, drawing, and climbing.  Most “ing” words, really, that don’t involve “sitting.”  In these past few years, I have watched enough Netflix for a lifetime and can quote every line to Dumb & Dumber (“Excuse me, Flo?”).  Enough is enough.  I plan on being that annoying healthy old guy who is running marathons with the young guns.  

“Patience is a virtue.” I believe it was Andrew Hurley who gave us that nugget of wisdom back in 2014.  I agree with him.  The whole time period has given me much more patience.  Those who know me well might say that the last sentence might not be saying much, but it’s still an improvement.  So now when I can’t get a parking spot at Trader Joe’s, I just swear at the guy taking up two spots for 30 seconds instead of a full minute.  Silently and in the safety of my car, obviously. What am I, a tough guy?  In all seriousness, I am much more patient in many other areas of my life – difficulty at work, moving stresses, unexpected relationship problems.  It’s given me so much perspective on what is worth getting upset about and what is simply out of my control.  But in less seriousness, that guy at TJ’s has to know he’s taking up two spots, right?


Once More Unto The Breach, Dear Friends, Once More.


This time period has allowed me to empathize with those who are struggling.  I am not just talking about Lyme Disease – there are other physical and mental health problems that can be treated if people are pointed in the right direction.  Hopelessness doesn’t have to be the norm for those suffering.  Now that I am getting treated, I feel so much better than I did in 2010.  My depression and anxiety are going away. I am a living example that you can come through the deepest darkest times of your life if you just keep going.  I really thought that I was in an absolutely hopeless situation and that I was never going to get better.  These feelings were the strongest during the winter of 2010-2011 and when I found out I had Lyme in early 2014. I never specifically planned on killing myself, but a few times I thought, “I can’t do this anymore.  If this lasts any longer, I am going to have to die.  That’s that.”

But life got better.  That’s what I would say to anyone who is really having a hard time.  Just keep pushing. Clean up your diet. Exercise.  Seek professional help.  Make sure medication is the last house on the block, but make sure it’s still on the block.  Don’t take it off the table.  And please don’t be embarrassed to talk to someone about your struggles.  Crying is like throwing up for the soul- you will feel so much better.


I’m No Longer A Slave To Fear.

Above all, the most important change in my life has been the development of my relationship with God.  Full disclosure: I’m about to get a pretty Jesus-y here, and I mean that in the best way.  I grew up in a Christian home, but my faith didn’t become real until I was confronted with extremely trying times.  I learned what it was like to give up control over circumstances I was trying to hold on to in vain and see God work things together for good.  God replaced some of my selfishness with a desire to love others more than myself.  I have never felt adequate in sharing the Gospel with others and cannot eloquently put into words the changes I have seen in my life since putting faith in God, but I can say I am nowhere near perfect and never will be.  Neither is anyone else, and that is the whole point - grace for all exists anyway.

Studying Jesus himself has been fascinating - I’m actually reading the Bible instead of being told what it says by “Christians” who don’t act like Jesus whatsoever.  I don’t have all of the answers and struggle with questions all of the time, but I do know that I am more kind, gentle, accepting, loving, generous, and honest than I have ever been.  I take approximately zero credit for that, personally.  God pulled me close to Him during this seemingly impossible time of my life and I quite literally could not have survived without Him and the friends & family in my life.


The Best Of What’s Around

I recently dug through some old notes I wrote down and this is what I had to say in November of 2010: “All I want is to feel normal again so I can move in a positive direction in my life, but this is not happening right now.  I have been pleading with God to heal me, but I am honestly not very optimistic.  I’m trying to be, but it’s just not really in my nature.  All of my other issues, whether it be about girls or friends or school or whatever have kind of fallen by the wayside right now.  This is like the sound of a jet plane, drowning out everything else.  It’s the only thing I think about because I can always feel it.”  I still can feel like that some days. But instead of waddling in despair, I get excited about everything I am going to accomplish in the future and I thank God for all that I have learned. I don’t know when I will be completely better, but I know I will be some day.  I’m lucky enough to see the bright side of this difficult season of my life and feel honored to share it with you.

Now if you’ll excuse me, I’m off to get a “Smooth Seas Never Made a Skilled Sailor” tattoo.

-Hurlz 2.0

Andrew Hurley 2015
©

Contact:
If you would like to contact Andrew you can find him two ways, either via email (ahurley112@gmail.com) or through Facebook.

Fall 2009. I want to be formal, but I'm here to party.
Summer 2010 vs Summer 2013. Still was in the midst of figuring out what was wrong with me, but at least I didn't look like I had just eaten the entire McDonald's Dollar Menu and then drank 30 beers.
Florida in February 2014. Crazy how deceptive pictures can be. I look like I'm having fun, but that month was one of the worst of my life. I was transitioning doctors and was in the midst of still learning a new job. I got to escape the harsh New England winter to go to Florida for a week, so I guess it wasn't all bad.
Graduation in May of 2014. Had just started Lyme treatment with antibiotics about 2 months previous to this. I look a little... shall we say... Mellow Yellow.
6 Comments

Being An Open Book..

9/13/2015

7 Comments

 
When I started this blog 4 years ago it stemmed from a deep need to advocate. I asked myself, how could I help this cause? What can I possibly do? Being a rather shy person I knew I had to take the leap and open up about my health to essentially the entire cyber world. After spending many years of my life hiding how I felt and pretending to be healthy it was quite a change to adjust to. It was scary to realize whatever I put out there would be in Internet history till the end of time, and that it will be a really personal look into one of the most personal parts of my life: my health.

At times I wondered if anyone even cared or wanted to read about “me,” the person behind Lady of Lyme. Am I sharing about myself enough? Too much? I wrestled with wanting to build rapport and a more personal connection with everyone who comes by this site, but then my shyness kicking in saying, “don’t put yourself out there to be judged.” It’s no doubt a fear coming from my introverted self, but one that is often outweighed by wanting to be authentic. I walk a fine line with that sentiment.

Everyone who fights an illness of any kind inspires me deeply, and what I experienced as I communicated with people via emails was that complete strangers opened up and shared things about themselves so bravely.

As the blog continued on through the years I met so many patients from across the world and read so many emails about harrowing battles others were fighting. My worldview got much larger as I grasped the scale of suffering that this disease causes globally. It was so much bigger than I could have imagined, and so much work and advocacy needs to be done in every front. This lit a fire in me to spend more time doing research and compiling as much useful information as I possibly could in my blog posts.

My whole entire heart is put into Lady of Lyme day in and day out. It is my greatest desire to find outlets to help in some small way; essentially any way that possibly I can. However, at the end of the day I am just a patient, a daughter, a friend, and a fellow fighter, much like many of you who come by and read this blog. I stretch myself thin a lot of the time because I take on too much, both in the way of physical tasks regarding this blog, and also emotionally. On occasion I will receive emails that are not very kind. They vary in terms of what they say, but it’s never easy to read words that are just plain cruel. What I found to be strange is that on the few rare occasions that this happened it always was from patients who are also ill (with varying conditions) and I scratch my head thinking, “wait, shouldn’t this person have some empathy and understanding if they are sick too?” It's shocking every time. When I recently encountered such an email it made me self-conscious to keep blogging. It’s such a personal thing to me, and I took a few steps back to stop and reassess.

I guess I should have built up some thicker skin if I made the decision to put myself out there on a website, but that isn’t who I am. I, Christina, am someone who is an introvert, someone who has a sensitive soul that can easily get wounded. If I give of myself I give my whole heart, and if I care I care very deeply (there is no in between). I am also a fiercely private person, social media freaks me out and I have all but deleted every personal account I created from college. I have had an old soul from a young age, and if I could find a job that paid me to watch the Hallmark channel and do crafts or design all day then I would be set for life. On the flip side of this I am still a person who has a passion for things that matter in life. I will fight for what I believe in, in this case being a patient advocate for Lyme disease. And with that I have to throw all my typical personality traits aside, and go way outside my comfort zone. This blog is about 100 miles outside of what I find comfortable. If I didn’t care so much I wouldn’t do it. It would be so much easier for me to not put myself out there, because I don’t particularly desire to over share about myself (even though I’m from the generation who typically does).

I write this blog and do the research because my heart compels me. And I know that on occasion I will stumble across a few bad apples, but they don’t need to ruin the whole beautiful batch, which is everyone else who comes by this site and has something kind to say. There is so much more goodness in this world than there is bad, and sometimes I need to remember that.

Although I have been a bit quieter with posting personal blogs and updates recently, I plan to get back into that very soon. I have a lot of drafts that I began but just never finished to submit, so I hope to get them up very soon. I also have a wonderful guest blog post which will be up this week from a fellow Lyme fighter. I pray that it touches and inspires everyone who reads it the same way it touched me.

I hope everyone has a wonderful and blessed week.

Xoxo,
Christina

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