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Lyme Ninja Radio - Interview with Mackay Rippey

8/30/2016

2 Comments

 
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I was one of those people who were way behind on the game with discovering podcasts. I knew that they existed, but I didn't really dive into my little "Podcast" App on my iPhone until a few months ago. Once I realized how incredible it was to lie in bed and be able to learn and be entertained by the wealth of shows within the app, I was hooked. This is also when I found Lyme Ninja Radio, and it was an instant love affair. I binge-listened (is that a thing?) to podcast after podcast, and found myself laughing, learning, and really enjoying the natural ability of Mackay to host the show so perfectly.

Lyme Ninja Radio was created by Mackay and his daughter, after being affected personally by Lyme Disease. They have the most incredible guests on and talk about every topic imaginable, all over the spectrum of a chronic illness; Diet, meditation, treatments, Physician interviews, etc. It is also very easy to access, either via iTunes, SoundCloud, or LymeNinja.com. It is so worth clicking "Subscribe" & getting your weekly dose of learning and entertainment. But don't just take my word for it! I recently got to turn the tables a bit and interview Mackay, and we chatted about what makes Lyme Ninja Radio special.

1. Lyme Ninja Radio is special for a lot of reasons, but one of which is that it's a father/daughter duo working together. What inspired you to create this project together?
Mackay: Desperation - I started Lyme Ninja Radio on my own and was quickly overwhelmed. Luckily for me, Aurora was home at the time and was willing to jump in and learn the ins and outs of podcasting.

2. What has been the best thing about working with your daughter?
Mackay: It’s great to be able to interact with her as a partner and as an adult and not in the normal father/daughter or parent/child roles which always seem to boil down to, “Have you cleaned your room yet?!"

3. When did you start the Podcast? And how many episodes have you created together thus far?
Mackay: I started Lyme Ninja Radio as a way to learn about Lyme disease for my acupuncture practice in Clinton, NY. I figured it would be a great way to learn and share that learning in the process. We started in the Summer of 2014 and are up to about 101 episodes! (See Ep 101: here)

4. Has Lyme Ninja expanded from Podcasts to any other projects? 
Mackay: We are working on a number of ideas, from a line of supplements to online training. Last year we held our first Ninja Training, The topic was the Healing Power of Emotions. My partner in that project, in addition to Aurora, was Erin Murphy, who has an amazing Lyme story and who’s healing was jump-started with an emotional breakthrough.

5. What are both of you stories regarding Lyme Disease? Have you both been affected by it? Is it something which affects other friends/family members close to you? 
Mackay: I was bit by a tick in the Hudson Valley in Ghent, New York. A few days later I felt like hell and a day after that developed a bullseye rash. THANK GOD! Even though I only had 2 weeks of doxy, I followed it up with some herbals and acupuncture and am more or less OK. My wife noticed I lost about an inch off my hairline and I think my energy is not quite what it should be. That was 12 years ago. So I’m basically OK. Again, Thank God.

6. What do you feel is the biggest lesson you've learned through the journey of creating this podcast?
Mackay: One afternoon I was all upset because I produced an episode and NOBODY listened to it. She said, “Calm down. Don’t even worry about any of that until you have been doing this for two years. Than you can make an assessment and be happy or upset.”

What she taught me is “Just Keep Going.” It’s really the same message that the Lymies teach. “Just Keep Going. Don’t Stop."

7. Who were some of your most interesting guests? Or what are some of your favorite episodes?
Mackay:  This may sound like a total suck up to my guests. But I love them all. In fact, I choose guests that are interesting to me. My mind can get interested in some quirky things and sometimes I worry that I lose my audience because of that. But I figure the worst thing in the world is to have an interviewer who is bored by his guest. 

I have to say my favorite episode was a Halloween special we did early on with Author M. M. Drymon. She wrote a book called Disguised as the Devil and makes a very compelling case that the Salem witches were actually suffering from Lyme Disease. It’s fascinating stuff. One of the signs of being a witch was the “devil’s kiss” which wait for it….is a bullseye rash!

I also love Eva Sapi, the researcher from University of New Haven. She is doing groundbreaking original research with Lyme. I love her.

And of course talking with people who are battling their way through Lyme is always humbling and inspiring.

8. I love this podcast because it is incredibly informative and a wealth of information for patients and caretakers, which is so needed in the Lyme community. What is the one message you would like to share as a takeaway to those who are reading this now? 
Mackay: We live in connected world. What and who you need to heal from Lyme may not be in your circle at the present moment. But through resources like Lyme Ninja Radio, Facebook, Skype, you can find the people and the information and the hope you need to get through this. It is possible to heal, and sometime you have to let go of expectations, disappointments, anger, grief etc, to move forward.  At that heart of most Lyme healing stories is a moment of surrender and inner peace that allows the path forward to show itself.

9. Is there anything else you would like to share with the readers/future listeners? 
Mackay: You can find Lyme Ninja Radio on iTunes, Sound Cloud, Facebook, and our website www.LymeNinja.com

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I want to thank Mackay for taking the time to chat with me! I linked the episodes he spoke about in the interview above if you want to click and listen yourself. The Halloween special really is incredible, and fall time is just around the corner, so I recommend that listen for a crisp fall day treat :)

xoxo,
Christina



2 Comments

Random Act of Kindness.. Part 2

7/24/2016

2 Comments

 
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While I spoke a lot about all the really incredible things that occurred during Lyme Disease Awareness Month in May, there was one big theme which was also glaringly obvious.. It also highlighted the great amount of suffering that is occurring right now. I always knew it of course, but seeing it all streamlined in my feed was just.. Wow.

The reality of how deep the sadness and hopelessly is was a very sobering truth. I met an elderly lady in my hometown who had a tick bite, had the bulls-eye rash & had the symptoms, but since her blood test was negative (a false negative) they refused her antibiotics. That was the single most crushing reality to swallow, especially hearing her story of how hard she fought to get someone to help her. She was brushed off because she was a senior, and my jaw was on the floor while my heart was shattering in my chest.

I loved reading about all the incredible stories all over the country of other fighters who spoke out about this disease, but each of their stories resonated so deeply it was as if could feel their pain in each word.

On top of all of that, I have have seen a huge influx of crowd funding campaigns because the cost of getting well out of pocket is insurmountable & the desire to thrive and be well lies in the ability to be able to fund treatment. This reality of how badly the healthcare system is failing was another reminder of why I do what I do. The dream & the goal is to fund research for accurate testing & more research for a cure. Fighting for remission is not enough, but it's all that thousands of people have who suffer each day & courageously battle to put the pieces of their life together again. It's a long road to recovery & many patients are succumbed to being bed bound while trying different protocols to find one that gives them relief. This disease creates so much unnecessary suffering & it should not be like this. If I could I would take away all the suffering & fund my own team of Doctors to find a cure. But although I can't do that realistically on my own, there is one thing I can do.. One thing
that is in my power is the ability to spread love to those who need it.

With that being said, this year I will take on 2 Random Acts of Kindness recipients. I did this last year and it went really well! None of the recipients ever knew who their surprise care package was from (which is the goal), and I got emails afterwards from the friends/family members who arranged it & overall it was a wonderful experience. Sometimes life can feel really lonely and overwhelming for all of us. And sometimes we just need to know that someone cares. Having that can make all the difference in the world to keep fighting.

I will take the first 2 people who email me ... The way it works is if you know someone who could use a random act of kindness care package then please email me. I will get info from you on what they like, their clothing size etc & create a care package customized with things they would like. It's just one small thing, but if we can all share a bit of love with those who need it then I believe we can make the world a better place.

xoxo,
​Christina
2 Comments

Singer-Songwriter Jesse Ruben Shares His Story About Beating Lyme Disease & His Inspirational New Anthem, "This Is Why I Need You."

3/30/2016

1 Comment

 
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If you haven't heard of Jesse Ruben yet, then I am pleased to introduce you to this inspiring artist and fellow Lyme warrior. Jesse is a Philly born singer-songwriter who is now located in NYC and making music that will infuse hope to anyone who is feeling low. His personal journey and fight with Lyme disease inspired an emotional track called "This Is Why I Need You, which it's an anthem that hits on every level. It's a track about finding yourself in the darkest hour and the gratitude that comes with seeing life from a different perspective.

Jesse is currently touring in Germany, but was kind enough to make time for an interview and answering some questions about his experience with Lyme Disease. It sidelined him for 2 years, but then he came back stronger than ever. His story is incredibly inspiring, and I'm so excited to let him share his story & music.

Without further adieu,

C: Can you tell me a bit about your journey with finding a diagnosis for Lyme disease? 
Jesse: Getting my diagnosis was a nightmare. I started not feeling well late in 2012, and after a few months I knew something was really wrong. My fatigue was completely overwhelming. I had a crawling sensation under my skin that never went away. I couldn't breathe (I later found out this was called air hunger), and my brain was clearly effected. My short term memory because really bad. I forgot lyrics to my own songs. I started going from doctor to doctor, and taking all of the normal blood tests. Of course, all of my tests came back negative. I was told I was totally healthy many times. I was sent to a psychiatrist, who diagnosed me with depression and told me I needed to wake up early and take long walks. Meanwhile, I could barely move. 

Eventually, i started doing research online, and found a site that had a list of possible Lyme symptoms. It was the first time I found something that covered everything I was going through. I asked everyone I knew who had ever had Lyme, and found a doctor in New York that specialized in treating people that deal with chronic illness called The Morrison Health Center. I owe them my entire life. 


In the end, it took me more than 9 months and 14 doctors before I got my diagnosis.

C: Wow, what a long journey to finally get some answers! When your learned you had Lyme disease, how did you feel? We're you hopeful, scared, relieved? 
Jesse: I remember when I told my family, they were very relieved. But I knew what was going on in my body, and how bad it was. It was great getting rid of the unknown, but then the work of actually getting healthy again had to start. 

C: I can certainly relate to those mixed feelings, and I'm sure anyone dealing with this illness can too. What was your experience like fighting for your health? 
Jesse: My two years of illness were the most difficult of my entire life. It was so scary, not knowing if I was ever going to get better. Mentally, it was almost unbearable. I started wondering if I deserved it, if I was actually a terrible person. Most of the people in my life were supportive, but after a while, there was a limit to their empathy. After all, I lost 35 pounds. I "looked great", even though I was worried I was going to die. It was hard to maintain those relationships. It was hard to stay positive. It is a very isolating experience, to deal with a chronic illness that most people know nothing about. 

People deal with this situation in their own way, but for me, the best thing to do was put everything on hold. I stopped writing music, touring, or sending e-mails. All of my energy was focused on recovery. I spent most days at the Morrison Center in New York getting treatment. I tried literally everything. Fortunately, after about 18 months, I tried something called The Garcia protocol, a combination of chelation and ozone treatment. Three months of that, and my physical symptoms were gone. It took another 18 months to recover emotionally. 

C: That's certainly a long road you traveled full of ups & downs. Who was your support system? Did you find that those around you had a good understanding about this disease? 
Jesse: Through my doctor's office, I met a group of people around my age who were also dealing with Lyme disease. I don't know if I would've gotten through the experience without them. To have people who completely understood my situation, where I didn't have to prove to them how bad it was, who just got it. Besides them, it was challenging for my friends and family to really appreciate what was happening. 

C: Did you use your music as an outlet to cope? 
Jesse: I did, up to a point. There was a long time where I couldn't pick up my guitar, or if I did, I could barely play. I had trouble focusing, mentally. But since I've been feeling better, music has been a big part of regaining my life back. It is such a huge part of who I am, and how I connect with people. Being able to perform again, or even just listen to music again, has been a huge joy. A lot of the new songs are about that experience. My new single, "This Is Why I Need You", was written as an acknowledgement to my girlfriend and other people close to me who really pulled me through the whole experience. It's been amazing, seeing the reaction people have had to the song. Something that was so personal and difficult for me inspired something that has really resonated. 

C: As a fellow fighter of Lyme disease I know that this experience can give you a greater appreciation for things in life. Do you feel it gave you a new perspective on anything, and how so? 
Jesse: It really really helps to focus on what matters. Being a musician can be very difficult, financially and emotionally. But my worst day as a musician is still better than any day I spent during my illness. I am so grateful for the people I met who helped me through it, I am so grateful for my doctors, who never gave up on me. To be able to wake up in the morning with a clear head, even to do something as simple as going for a walk. That wasn't possible for a long time. I try to enjoy it as much as I can. I also try to reach out to anyone that I find out has Lyme, and remind them that they're not crazy, and that getting better is possible. 

C: Did this experience inspire any new music? 
Jesse: Absolutely. I was always the type to write about the stuff that was going on in my life, so it's no coincidence that my next album is about dealing with difficult things. It's called "A Reply To Violence", and when people hear it, I want them to get that no matter what happens, they are not alone, and that it is going to get better. That is a message that I forgot for a long time, and I think it's important for people to hear. 


C: Can you tell us what is coming up for you in this next chapter of your life? 
Jesse: I'm really excited about the coming year. I'll be in Germany for a month to tour, I'm gonna put out my new EP (A Reply To Violence), and in November I'm planning to run the NYC Marathon and raise money for Lyme research. 

C: Jesse, thank you so much for doing this interview and sharing about your personal journey. Your fight, and seeing how you are flourishing now post-Lyme has given me so much hope. Are there any final thoughts you would like to share?
Jesse: Yes, lastly, to anyone reading this: I'm so sorry you're dealing with Lyme. I know how terrible it can be. You are not a crazy person. Please take care of yourself.

To contact Jesse you can find him on his social platforms here:

Official Site
Instagram
Twitter
Facebook
Soundcloud
Tumblr

To listen to Jesse's new song 'This Is Why I Need You,' the soundcloud track & video are linked below. I hope you guys enjoy it as much as I do!

-Christina

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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...
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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

Gone In A Heartbeat, by Dr. Neil Spector

7/29/2015

2 Comments

 
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A few months ago I was given the book, "Gone In A Heartbeat" by Dr. Neil Spector. I knew from the first page that it was going to be an incredible story. In fact, as soon as I read the synopsis I could hard wait to dive in. One of the things that help me personally in this journey is reading harrowing tales of patients fighting Lyme disease which end in amazing victories. It's a reminder that no case can be too far gone, no matter how bad the day, week, or month may feel. It's a reminder to always keep going, even when hope feels gone. Dr. Spector landed in the hospital from Lyme disease complications with 48 hours to live & the countdown ticking for a life saving heart transplant. It was in the very final moments that he received a heart to survive. The synopsis of the book is as follows:

Dr. Neil Spector, one of the nation’s top oncologists, led a charmed life. He was educated at prestigious universities, trained at top medical centers, and had married the woman of his dreams. It seemed too perfect. And it was. In 1994, it all came crashing down. He and his wife lost two unborn children, and a mysterious illness brought him to the brink of death. In his compelling memoir, Gone in a Heartbeat, Dr. Spector describes in great detail how he was misdiagnosed and, despite being a medical insider, was often discounted by his fellow physicians. As he recounts his own unorthodox approach to medicine and physician/patient relationships, Dr. Spector encourages readers to never surrender their power to a third party.
To say that this book is a nail biting page turner is an understatement. There is so much to this story, and what really shook me was the fact that he himself was a physician and had colleagues discounting his disease to his face. He had to fight until almost his last breath to get proper care. As a patient we all deal with that, but I guess I was blind to the thought that a physician would endure the same run around. But, alas it just shows how misunderstood this disease is, no matter who you are.

When I finished reading the book I was left speechless, but I also had so many questions. Dr. Spector is incredibly kind and personally answered some questions for me that he is allowing me to share on my blog. If you are interested in the Q & A then read on:

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1. Since chronic Lyme disease is not acknowledged by the IDSA did you feel that you as a doctor writing about it might tarnished your reputation or you might get backlash? Did that deter you at all in deciding to be so vocal and honest?

Dr. Spector: No, I'm not concerned about he response to IDSA folks to my story. My story is what it is, an example of what can happen when doctors rely on tests rather than clinical judgement and don't listen to their patients including, yes, even a physician-scientist. I am only pointing out the limitations of the current way we diagnose and care for people with Lyme and other tick-borne diseases.

2.
How do those colleagues who just downplayed your symptoms feel after they realized the severity of your illness? Has your story changed their perspective on Lyme disease?

Dr. Spector: My story is less about chronic Lyme after treatment since my cardiac issues resulted from untreated Lyme although the treatment did not reverse the heart damage, which IDSA may find difficult to believe.

3.
After the book came out did you experience backlash from medical establishments or colleagues since you are disproving those who claim that chronic Lyme disease does not exist? On the flip side, did you receive any surprise encouragement from either?

Dr. Spector: My primary doctor was a friend and felt bad once the diagnosis was made. We moved shortly thereafter, so I'm not sure he heard about the damage that was done by the misdiagnosis eg the transplant.

4.
You are a doctor, and your inner voice was silenced by colleagues. So what can those patients who do not have this background do, so their voice is heard and they get help?

Dr. Spector: Yes, if this can happen to me God help other patients. They need to be informed, use crediblesources,  and not stop seeking answers.

5.
We're the suicidal thoughts after the diagnosis or while searching for the answer?

Dr. Spector: The one time (only a fleeting but very real thought) was days before I had the transplant in the midst of florid congestive heart failure and my body literally shutting down.

6. Who was your support system? Do you feel there should be more resources for those who support (are caregivers) to a Lyme Patient, so they can effectively do so?

Dr. Spector: My support system was essentially my wife who was amazing throughout my 4 years to find a diagnosis and then 12 years living with the AICD and 10% heart function and eventually transplant. I now attend an amazing Lyme disease support group in Raleigh, NC that meets monthly and provides incredible support and information. Yes, knowledgable support is important regardless of the problem.



The book is a wonderful read if you are looking for something that will give you hope, and a read that has an ending which will inspire. I read this book in short bursts whenever I laid in bed, and I plan to include them in my Random Acts of Kindness boxes, because I really feel like it's something that patients NEED to read. It's so crucial to see and hear success stories and to know you are never alone. If you want to have a copy for yourself you can buy this book here.

xoxo,
Christina
2 Comments

Random Acts of Kindness - Please Nominate Someone You Know Who Needs It

1/5/2015

3 Comments

 
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In 2014 there were 200,000 visitors to Lady of Lyme. While I am still in complete shock and awe at that number, my heart is also sad because that many people are going through (or know someone going through) this debilitating disease. For me it really put into perspective the scale of those who are globally hurting & looking for answers. The purpose of Lady of Lyme has always been outreach, and compiling every single bit of useful information I could research into one place. The goal was always (and will always be) to hopefully make everyone who visits feel a bit less alone in their journey.

With that being said, as I looked at 2015 and thought about resolutions I pondered about what I would want mine to be. I realized that what I wanted most of all is to make this year less about me & more about others. I believe firmly that God gave me this challenge and this outlet for a reason. I want to glorify Him in all that I do, and I felt like the perfect way to do it would be Random Acts of Kindness.

On any given day I have a hard time complaining because I know all the ways God has blessed my life. No matter the circumstances I begin each prayer giving thanks for all the good I experienced that day. I also know that so many others are out there really hurting (emotionally, physically or both), and those really tough times are hard to get through. When someone feels down and out its hard to see the blessings or feel the love. Often times they feel more alone than ever & think that no one cares.

So, for my Random Acts of Kindness project of 2015 I am asking you all if you know someone who could use some extra love. This is not limited to Lyme disease or any disease for that matter. This is about anyone who is having a hard time in any way shape or form. If you know a caregiver who could use a smile, or someone facing any kind of tough time please submit their names. For each month I will choose a person from your submissions and will send them a personalized gift basket which is completely anonymous. It will simply show up on their doorstep and my idea is to fill it with items that will lift them up, and hopefully bring them joy.

If you know someone who can use this please send me a direct email with the persons name, back story/info & address. All information will be strictly confidential and also all gifts will be delivered anonymously. The more info you can give me on their likes/dislikes and what things make them happy the more personalized I can make it.

I want to thank everyone who has something kind to say to me, or has lifted me up throughout the years. It's a long road to travel, but knowing that I have people behind me giving support has always meant the world.

xoxo,
Christina
3 Comments

Inanna House: First In-Patient Lyme care Facility

8/10/2012

11 Comments

 
DISCLAIMER: I do not run Inanna House, and have no direct affiliation with them. If you would like to contact those who run Inanna House directly please go to: www.inannahouse.org

I have received comments & emails asking for admissions, so before you read further know this is just an informative post. Again, I have no affiliation with Inanna House.

I count my blessings a million times over. I could not imagine enduring what I have & what I will endure in the future without my parents. They make me every meal when I am lifeless, make sure I get all my meds, & give me constant 100% support. I'm one of the few who have this quiet peaceful retreat to recover in with a family that loves me & have gone into debt to afford my care.

For all of this I thank God. With my birthday being Sunday I reflected back on gifts I received. All materialistic items that are great, but I can live without them. "Health is true wealth, not pieces of gold & silver."

This brings me to my point about an amazing project that's being created by Mara Williams called the Inanna House. This will be the first non profit in patient Lyme treatment facility. People who need medical care the most for this fatal disease will now be able to receive it. I took the highlights from the fundraising website & condensed it below to get a better understanding. The Inanna House plans to be in locations across the US, but the first will be in Sonoma County, California.


  • A Retreat Style Center with 24 Private Rooms with Baths for In-patient stay, built on 14-15 Acres of viable land.

  • 24 Hour Care and monitoring as patients undergo individualized treatment plans, incorporating all worlds of medicine to acheive optimal re-integration and healing, which would address each aspect of the individual: Mind, Body, and Sprit.

  • The Center will incorporate Green Energy to make it as self-sustainable as possible.

  • An In-House Organic Garden big enough to feed all residents and provide patients with a necessary "Clean, Alkaline Diet" to aid them in their recovery.

  • A $20 Million Dollar Endowment Fund for individuals who can't pay for treatment but desperately need it.

  • Fees that are on a sliding scale basis, and a "Give Back" Program so that those who have received treatment and recovered have the opportunity to come back and help give patients who are currently being treated hope, guidance, and support.

  • A Program specifically designed to help care-takers understand exactly what their loved ones are going through, and how Lyme disease and its co-infections are effecting them. This program will also give specific instructions so that care-takers will also know how they can help their loved ones recover.

  • Inanna house will train physicians properly for them to become Lyme Literate doctors.

Donation Page to Share: http://www.indiegogo.com/InannaHouse

To learn more about what other amazing features and specific therapies the center intends on offering, please visit their website at:

http://www.inannahouse.org/our-vision.html


Currently there is fundraising going on for this project with 22 days left to reach the $20,000 goal. As I looked around at all this stuff I had received, I knew in my heart I had to return what I could & instead of gifts ask for family & friends to donate that money to this cause. This fundraising is fixed which means if they don't reach the $20,000 goal, all the money will be returned to the donors. I really hope everyone of you can at least take a look at the site to read about how amazing it is, and share with friends. You can choose to contribute, or just by simply passing it along you are doing so much.

This is near & dear to my heart and I hope Mara Williams dream will come alive. It will be a huge step for patients everywhere. Such a vision & blessing to help those who need it the most.

Thanks friends! :)

Xoxo,
Christina
11 Comments

An Event to bring awareness to Louisville

11/29/2011

0 Comments

 
As Christmas quickly approaches I look around and see a family who is such an amazing support & one I am beyond blessed to have. Not a lot of people can say they have parents who would go to the moon & back to make their child's life perfect. No matter how sick I have been, or how much I complain my parents have never stopped being loving & patient. While I stress about what's next, they are comforting me with the things I should be happy for today.

I realize that it's a rare breed of human beings who are selfless. Many young adults & children who are struggling with chronic Lyme do not have the parents I do backing them up. They can't afford treatment, maybe their parents refuse to take them to a specialist because of cost issues etc. I personally have spoke with many other sufferers who told me they can't find someone to treat them & have run out of money, or no one believes how sick they are & they can't get their treatment funded. It breaks my heart to see that, and how it must affect their holidays.

With this in mind, I felt its only right to thank God for all he has given me and find a way to give something to those who have nothing at all.

I am VERY pleased to announce that I will be hosting a booth during the annual Louisville holiday festival "Bardstown Road Aglow." For starters, I want to educate as many people as possible about Lyme. Bringing awareness is a huge deal, as many people ask me what Lyme disease even is. I am also collecting donations for two causes. The first is for Lyme disease research, because it is completely underfunded. The disease has a long way to go before it is fully understood, and it's much like Cancer in that we have a lot of unanswered questions. Secondly, these funds will go to helping the people who need it the most with treatment cost, doctors visits etc. Insurance is almost useless with this disease, and to fight it is extremely expensive. An average cost of $100,000-300,000 is what it adds up to be for a chronic Lyme sufferer from start to finish. The amount of care, medicine, hospital visits, etc all adds up very quickly.

My hope is I can get a lot of support from the community & my friends for this cause. I'm extremely passionate about this, as it has completely taken over my life and well being. I know how it feels & if there was simply more research done, or more knowledge, a lot of people would be in a different boat.

The link below is my page, so kindly sponsored by Tired Of Lyme. Please visit it and read about the cause. If you can make it to the event I would love to see everyone, but if you cant & would like to still donate there is an area at the bottom to do so securely with PayPal. NO amount is too small, every little bit will help the cause.

www.tiredoflyme.com/donate4lyme.html
Thank you

Christina

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