A Lyme Disease Blog Sharing Support & Awareness

Faith In The "Rests" Of Life

7/18/2016

In our whole life-melody the music is broken off here
and there by "rests," and we foolishly think we have
come to the end of the tune. God sends a time of
forced leisure, sickness, disappointed plans,
frustrated efforts, and makes a sudden pause
in the choral hymn of our lives.

Not without design does God write the music of our lives.
But be it ours to learn the tune, and not be
dismayed at the "rests." Patience is the finest &
worthiest part of fortitude.. the rarest too

These "rests" are not to be slurred over,
nor to be omitted, nor to destroy the melody,
or change the keynote.
If we just look up, God Himself will be there
to beat the time for us, so we can strike the next note
full and clear.

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Living My Best Life

4/12/2016

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Purple legs are so trendy I know.. on the bright side at least it looks like I kind of have a tan..A moon tan perhaps?

Today I got out of bed and walked downstairs...for the first time in 2 weeks! Don't be fooled, my house isn't a mansion or anything where the downstairs quarters are a mile away. Oh no, this is just your regular ole sized house, but my heart has not allowed me to stand up for longer than about 30 seconds before my heart rate goes nuts, my legs turn purple & I have to get vertical ASAP. It makes leaving bed feel like it deserves a gold metal of honor. This last month-ish has been a wild ride, first with the neurological issues (in the post below) & then with some heart issues which came to the surface recently. To summarize on that, my resting heart rate will shoot up to 130 out of nowhere & it comes with a laundry list of other symptoms. Then it will drop down to about 50. I currently have a 14 day Holter monitor on to hopefully provide some answers & I will do a post on that in the coming weeks that's a bit more in depth. I was actually awake for 48 hours at one point from my racing heart & spent a week sleeping 2 hours a day. Then when the exhaustion hit I was alternating coma like sleeps. I went on a Murder, She Wrote binge watching spree during that time, so thank you to Jessica Fletcher for keeping me sane (p.s I know I sound like I'm 80, but nope I'm 27). I've been absent from friends, from my lady of Lyme social media & from life as a whole lately with all of this craziness, but I did want to use this quick moment of clarity to chat about some other things that have been going on in life, and do a bit of a catch up.

This was one happy day in March when I woke up & had the energy and ability to take a short walk and enjoy the sunshine. A great joyful day

Today I was lying here and my mind started to wander on the topic of living my best life. And this topic went all over the place in my mind and about how it applies on so many different levels.

For those of you who are familiar with Yolanda Foster, you know that she is a cast member on the Real Housewives of Beverly Hills. This show has a lotttttt of viewers (millions), and Yolanda, being the amazing human being that she is, has been using it as a platform to educate about Lyme disease. She has shared every aspect of her journey, and in turn has made thousands of viewers across the globe feel a little bit less alone. But I digress.. The controversy of practically the entire season was that Yolanda posts "sick selfies" (aka showing the realities of Lyme) on her Instagram, followed later by "happy selfies" (when she's enjoying life). This led to much gossip from the women as to if she's really as ill as she says... Because you know, since she made it to lunch last week she MUST in fact be fine and cured, right? Actually first it led to them complaining that she's posting sick selfies for pity, then it morphed to, "but she looked fine yesterday." A picture says 1,000 words, but those words are interpreted different to everyone who views it. The truth behind a photo can be pain, exhaustion, defeat, sadness, or maybe depression. A smile is a mask, and anyone can plaster it on for a 2 second photo. Of course by now if you read this blog you understand how an invisible illness works, so I'm not here to re-hash that. But rather the fact that "happy selfies" are those moments where we escape. They are the moments where we live our best lives. Shouldn't we all strive to do that? To live our best life possible, despite the pain and limitations? I look for what I can do to bring myself joy despite my restrictions. If I can't get out of bed then dang it I'll color in bed. Maybe I'll paint my nails. Maybe I'll cross stitch or knit. Perhaps I'll work on a craft or read. If I can get out bed for a bit then I will do some photography, perhaps get some fresh air, and I'll love it.

The truth of the matter is that the blow-back which Yolanda receives is merely a lack of understanding. And I wrestle with that as well, because I want to enjoy my best life and shout it from the roof tops, but also not confuse people as to why it "looks" like I am having a blast and simultaneously saying that I can't leave the house or go here or there. It's weird, honestly. All of it is weird, especially finding a way to navigate it all and not feel guilt. I commend Yolanda, because it's a tricky line to walk to stay authentic to yourself.

The aftermath... (p.s yes I'm wearing a shirt, it was a cute off shoulder blouse that's covered by my trusty heating pad!)

And on this topic I wanted to share the story of my moms birthday, which ties in nicely to this whole conversation.

My mom's birthday was last month & it was a milestone birthday which I spent months planning for. Each detail was carefully chosen, and I had worked little by little on a memory gift from her close friends & family. I tracked down her favorite Hungarian cake, I hand picked a bouquet of 60+ balloons & the icing on the cake was that my brother came home from Texas to surprise her, which was the best moment of all. Having my family under one roof is the epitome of joy for me. Nothing is more precious and nothing gives my soul more fuel. There was one small hiccup though... When this day came I inconveniently was having one of my roughest days of the week. I put my makeup on in hopes that it would pep me up, but it just burnt me out more. I got all dressed up and ready but alas when dinner came around the smell of it made me only more nauseous so I was laid up in bed. I missed out on the whole night until the very end when I rallied for about 20 minutes in order to give my mom her gift. This made my soul happy, although it was a hard fought 20 minutes. But I did it non the less & for a moment I got to forget about how I felt or what I had to do next. This happy moment is the moment I wanted to share, because in my mind it's the moment where I was living my best life. But, shortly after the pretty pictures were taken the exhaustion set in and I plopped in bed feeling defeated, alone & sad as I listened to the voices of my family drifting up the stairs, laughing and chatting... Without me. My best life was followed by a somber and sobering moment. One which I captured for my own journal, but which I shared above (instead of the pretty made up picture). It's amazing that the happiest moments & toughest moments can exist just mere moments apart. But this awareness of that phenomenon only makes me focus on the good that much more, so I can soak up every last bit of it.

So I strive to live my best life, but even though I preach that sentiment, it doesn't mean that it can't sometimes feel like the 'worst life.' It's not, but it can feel that way. And both are my truth. My happy moment where I took a walk & felt so energized and hopeful is my truth, and the sadness that comes with debilitating pain is also my truth. And at the end of the day they're also both a part of my best life. Because 'best life' doesn't mean perfect life. It means MY best on any given day. They won't always be stellar, but I'm along for the ride & I'm not backing down. I won't allow myself to focus on my limitations, but instead I will keep focusing on reaching for the stars. I will continue to share the good & the ugly with all of you, because they both walk hand in hand on this journey. It's not always going to come up roses & that's okay, but it's also not going to bring me down. I encourage anyone who feels alone and overwhelmed not let it steal your ability to live life to the fullest each day. Be your truth & embrace your truth always.

I will live my best life, despite the circumstances.

Xoxo,
Christina

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Circumstances vs. Identity. I Am NOT My Illness, & Neither Are You

3/20/2016

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"I am NOT my illness."

Yesterday, as I was casually scrolling along through twitter, I saw a series of tweets which said: "To say I'm not my illness would be untrue. It is a part of me whether I like it or not. The person I am is heavily influenced by my illness." These tweets collectively have over 200 Likes and 'Retweets.' When I saw that it instantly made me feel a deep sadness. I felt sad for the person who believed it enough to tweet it, and then more so when I realized how many people also agreed.

First things first I want to encourage everyone who reads this to not let sadness or darkness take you down a path where you ever believe that your illness defines you, or is you. It's simply not true. That kind of mindset is damaging, and the more its reinforced the more your mind & body will believe it.

My illness has no bearing or influence on the person I am. Let me explain...

When I was born into this world I was already a unique individual human being. Then as I grew up I developed so many different personality traits that collectively became "Christina." I became who I am today by the hobbies I liked, the qualities I possessed, and the moral compass that was instilled in me, among so many other things. The friends who knew me "pre-illness," know I am still the exact same person today. When I get to catch up with some of my oldest friends we do not sit around talking about my illness for hours. We pick back up right where we left off and laugh and talk for hours about absolutely everything. Nothing has changed in regards to who I am at my very core.

Sure my life has changed since I got sick, I will absolutely admit to that. But those are my circumstances, that's not ME. And there is a huge difference there. My circumstances don't enable me to grab brunch with my girlfriends every Saturday afternoon, but I still love brunch just as much now as I did a few years ago. My circumstances may stop me from getting to see my friends sometimes, or the visits are cut short if symptoms hit, but I still love catching up about all our shared interests just as much now as I did a few years ago. My circumstances may prevent me from attending my alumni's college basketball games in person, but I still love to watch them on TV whenever I can now just as much as I did a few years ago. You get the idea here, right? Maybe I can't eat Taco Bell at 4am anymore or have a spontaneous vacation with my friends, but those are just my circumstances. It doesn't change the fact that if I could I would go do those very things I used to do. Because at my core I am still ME.

Circumstances do not need to become who you are. Don't ever let them. Don't let your illness fool you into thinking that you are less than or undeserving of living a life filled with hope. And most importantly, don't let anyone or anything anchor your illness onto you like a weight which drags you down and convinces you that you can't exist without it. It isn't an identity to be ill, it's just the circumstance that life dealt. It's not an ideal circumstance, but we all have our unique paths in life that we travel, and sometimes illness is just one of them.

Did being sick change my worldview? Yes it did. Did it change my priorities in life, or what I take time to cherish? Yes it has. I have learned a lot along the way, and I continue to learn a lot. Some of it good, some of it bad. But the things I have learned or the ways I have grown are just that... growth. We all grow as we age and take different paths in life. But growth also doesn't equal taking on an identity of an illness or "changing." It just means that you take stock of your life and you morph with your newly learned life lessons. I'm not the same version of myself today as I was in high school because I matured. But one of my best friends today is from high school, and although we both grew throughout the 12+ years of life's journey we are just as close today as we were then. Why? Because we had a bond much deeper than our circumstances, and what was left when life got chaotic and crazy was our initial friendship which was based on who we are as individuals at our core. It's really just that simple.

I know that being sick can get come with a need to vent, or moments of frustration. I also know that being sick can come with times where friends might leave, or family members become undependable. Lots of things do happen with an illness that can leave a person feeling bitter and hurt. It's easy to get pulled into the mentality of letting that illness consume you. You may even feel a sensation of, "It's me and this illness against the world!" especially if you are alone on this journey because the people you loved bailed. But even on the darkest days when you spend every single second managing pain and talking to yourself to cope, it still doesn't define you. Even if weeks and months pass and you have been in too much pain to do anything other than lie there and manage it, and take pills, and see Doctors, and it feels like that has become so much of your life that becomes you, just know that it's NOT. Those are your circumstances. It is not who YOU are. It will never be who you are. You are not your illness, and it does not define you. Ever. It might mold you, and it might teach you, but never let it steal away your beautiful, unique, special identity. You were created perfectly, and nothing can ever change that.

xoxo,
Christina

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Living In The Now... Happy 2016!

1/3/2016

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“Care about what other people think and you will always be their prisoner." - Lao Tzu

If I let the worry and anxiety of what other people think creep into my mind it will ultimately destroy me. It's been such a long road for me to believe in myself enough to realize that I am enough. For so long I thought and spoke only in past tense. I wanted my old life back so badly that it hurt. I wanted to push the rewind button and have a do-over. Instead of existing in the present I was wrapped up in the past and only cared about living for others. I wanted to keep up with my friends and be immersed in their lives as deeply as I was pre-bed bound times. I gave too much of myself away to everyone around me all the time, and left 0 reserves for myself. I didn't even factor my feelings into the equation, I just saw my body as this independent sick being that I tried to feed medication to and then got mad at for not cooperating. There was no actual connection there for me where I loved myself and embraced myself as a whole being. I was too busy running around in the past and wishing to teleport back to it. I had what they called, "Rosy Retrospection," or "The Good Old Days Syndrome." I saw my life as only being whole in the past-tense, and felt like 'back then' was far superior to the 'now.' What an unhealthy and draining way that was to live. Of course at the time you could not have convinced me otherwise. I was set in my ways for so long that it took a whole life shake up to nudge me awake.

The tides began to change for me throughout the course of this year. I realized when I relapsed and experienced crushing depression that I didn't want to live like that anymore. In fact, I couldn't keep living like that. I had given away so much of myself that I was then left with nothing but an empty void that felt hollow in my heart. Everything started to shift once I became actively aware of the things that were breaking me down. All the things I held on to like my need to please others, feeling like I was never enough, worrying what everyone thought about me, and not feeling deserving enough to put myself first were all huge components. Once my eyes were opened I could see just how damaging these thought processes were and I was able to slowly make changes in my life. I had to re-learn how to approach each day and actively chose to stop and assess each situation before I reacted. It is a slow process to let go of old deeply wired ways of thinking, and I still stumble frequently. Often times my family will remind me to let things go and see them from a different perspective, and I'm thankful for their encouragement because it's been crucial to my progress. With each situation I am faced with I learn to choose the option that benefits me the most and keeps my stress levels down so that I can properly heal.

I look at life very differently these days. This year I didn't have the energy to photograph and make my annual Christmas card, and at first I had lots of worries that I would let everyone down. I was so sure that all these friends and family members would assume I didn't care about them enough to even send a card. Notice how my worry & sadness over not creating a Christmas card had nothing to do with ME, but everything to do with how I thought it might make others feel. I had to catch myself and stop that way of thinking before it took off like a runaway train. I didn't have the energy, it wasn't smart to overextend myself, and that's okay. When I was able to stop and look at it logically I realized it is highly unlikely that anyone would even remotely misconstrue my silence this year as a lack of caring. Anyone who actually knows me also knows my heart and that reminder put things into perspective. These are the kinds of situations and moments which I actively work on in order to ground myself in the here and now.

The other day I came across a poll question which asked, "If you had a TV remote for your life which option would you use: Rewind button, fast forward button, pause button, or guide?" Without hesitation I answered that I would want the Guide, because having someone to help light my path in the present felt like the best choice. I didn't realize until days later what a huge milestone it was for me that I didn't instinctively choose to rewind. I no longer wish to live in the past, and I also no longer wish to fast forward through life. I wish to embrace this life I have now and like a magnet I want to draw in all the goodness in this world. The most important thing in my life has been always been healing, but only now I am fully willing to give in to every aspect that comes with the word "heal." I am willing to cut out anything that is stressful in my life no matter the cost, and focus only on things that serve me well and are healthy for my well being. I am willing to fully submit by choosing to live my life with joy, MY joy, and not worry about the perceptions of others.

"Tomorrow is tomorrow.
Future cares have future cures,
And we must mind today.”
- Sophocles

I am here in this present moment right now, and what a blessed thing that is. Happy 2016 everyone!

xoxo,
Christina

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In The Still Of The Night

12/11/2015

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It's 2am, and all is quiet around me. I can hear the gentle snoring of my cat purring rhythmically beside me, and the low hum of Christmas music drifting up the stairs. I curl up with my heating pad and stare into the darkness, negotiating with painsomnia. It's a game of tug of war as I fight pain for ownership of sleep. Tonight I'm not the lucky winner as I feel pins and needles pulsing throughout my stomach, alternating with daggers to my liver, and toying with the idea of spreading into a migraine. It's so quiet, so peaceful all around me, but my soul is awake and restless.

The night & I are not fast friends. I feel betrayed by its promise of rest and solitude. Sleep hangs in the air like a thundercloud; I can't touch it, but I can feel its presence all around me as my body aches from fatigue. I wait longingly, like a desert begging the clouds to spare a drop of rain. "It's coming soon," the night whispers, but the anticipation of rest feels many miles away. As I snuggle down into my covers I breathe in its comforting grip on my skin, and feel the soft mattress cradle my weary bones.

My fortress is my bed; a place which I deem to be my safest location, but yet coincidentally also the location I wish to escape the most. As I lie here I question that irony & wonder what it might feel like to not simultaneously long for my bed while loathing the chains of its stronghold. What might it feel like to have the freedom of free will & spontaneity? Fantasies dance around in my head and I am transported to a future time when I am able bodied and strong. With a smile firmly planted on my face I imagine the bliss of a beautiful day spent by the ocean side, simply existing. The sunshine coats my skin and seeps into my soul like an ink blot, spreading its rays throughout my body to the tips of my toes. It's nice here. It's safe here. I hold onto that sensation protectively until the harsh reality of the night sucks it away, and I am thrown back into the now; the 2:30am night.

It's 2:30am, and all is still quiet around me. My cat is still gently purring, the music is still strolling up the stairs, but I no longer have ownership of my whole heart. I left a piece of it in my dreams to hold my place in a future world where I am without pain; a world where I am healthy. My heart is there, bookmarking my place in time. I'll see you soon dear heart, it won't be long. I will never stop dreaming or fighting, for I will be there soon to collect the pieces and put myself together once again.

Xoxo,
Christina

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Tiredness vs. Fatigue. It's Not The Same & Here's Why:

10/7/2015

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When I was in college cramming for finals running on 3 hours of sleep I always assumed that was the most tired a person could feel. As I drug myself out of bed and headed to Starbucks for 3 shots of espresso I would mutter to myself, "I'm such a zombie, I'm so exhausted, this is terrible!" There is no denying I was incredibly tired, but what I didn't know at the time is that there is a difference between being tired from a lack of sleep, and experiencing tiredness on a whole new level; fatigue.

Fatigue: extreme tiredness, typically resulting from illness.

Tired: in need of sleep or rest.

When I got my first dose of fatigue first hand from my illness I couldn't find the words to convey what it felt like. The closest I came was, "It feels like I was hit by a semi" but even that didn't do it justice. Fatigue is such a deep whole body exhaustion that blinking is painful, and breathing feels impossible. It's like darkness crawled into every single cell of the body and depleted every ounce of energy. If anyone has every had mono then that would likely be the closest example that can make a fragment of sense. No amount of sleep can satisfy fatigue, and you wake up feeling like you never slept a wink.

So often I hear people belittle the symptom of "fatigue" in those who have a chronic illness. You can't see fatigue on a person, you can't touch it or make it be tangible & so people assume it must just feel the way they do when they're too tired.

If only.

If fatigue felt the way I felt after a week of cramming for finals in college I would be jazzed. Because the real fatigue is one that wins every battle; Will I make it to the shower today? Will I be able to walk to the kitchen? Fatigue decides. There is no mind over matter, there is no choosing to force yourself up. Fatigue is an intense exhaustion that rules all and controls all, even in the strongest of soldiers.

That's really important to note: Fatigue is not an optional feeling the way tiredness is. You can be tired, chug a Redbull or a coffee & power through a few more hours. Being tired doesn't stop you from completing normal daily tasks like taking a shower or washing the dishes. It doesn't feel good to push yourself when you're tired, but the difference is that it's non negotiable with fatigue.

When a patient with a chronic illness calls in sick for work, cancels dinner, or postpones any other plans because they are too fatigued, it's likely they feel as though every ounce of life was sucked out of them. It's easy for people to look down upon that "excuse," or feel as though it isn't valid. Coming from the perspective of someone who was once healthy I understand why. People think of what tired feels like to them and assumes that must be what tired feels like in an illness, so why can't they push through? Why are they so flaky?

I spent a long time blaming my own self and my own body for not cooperating better in regards to "being tired." I soon learned that the key word was "tired," and that wasn't what I was experiencing. I had crossed over from tired into the territory of fatigue, and that was a whole new beast.

A change in the stigma surrounding the word fatigue in regardless to chronic illness begins with acknowledging that there is a difference. I myself did not know the difference because so often in the English language we toss together words with similar meanings and use them interchangeably.

For the record, being tired from work or school or life is tough, and I don't ever want to take away from that. Mostly because I don't feel like the best way to educate on terminology is to belittle or pit "healthy" people against "sick" people. There is no competition, but sometimes advocates can create an "us" versus "them" dialogue which is damaging and unnecessary. Believe me, I remember being healthy and I still had my own set of very real problems & being tired from running on little sleep was 1 of them.

But it is important to make note that fatigue is not just that run of the mill tiredness you feel after a long week & remedy with a cup of coffee. Fatigue is crushing & leaves a person physically immobile, but not by choice.

If someone cancels plans or shares that they are struggling with fatigue in their illness I simply hope that this post could shed a bit of light on what that might feel like & how it impacts them. At the end of the day being tired & being fatigued are both pretty terrible feelings, so since its 2am here at the moment I wish a goodnight to all.

Xoxo,
Christina

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A 4 Year Reflection

9/23/2015

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"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

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Being An Open Book..

9/13/2015

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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

7 Comments

What Is The Role Of A Caregiver When A Patient Starts to Experience Self-Doubt?

8/23/2015

2 Comments

There will be days for every patient where self-doubt starts to creep in. Am I making the right choices with my health? Is this the best treatment plan? Why do I feel like I'm not moving forward? Is this a new symptom or a side effect of a new supplement?

The questions are endless, and the doubt can be paralyzing. Very quickly that small wrinkle of doubt spirals into worry, and then progresses into fear. It happens to every single patient, no matter how long they have been on their journey.

A caregivers role goes far beyond the physical tasks. I depend on my family to be my backbone when I start to doubt myself and have a tough time coping. Every so often I will just get overwhelmed, and sometimes it's the tiniest thing that starts this thought process in my mind. I start to wonder if I will ever get well. This leads me to start to question if I'm doing all that I can, or if my treatment plan is the right one. I get exhausted with being exhausted and I wallow in that feeling of wondering if I will get to know what being healthy even feels like again. It's during these times that my family stops me in my tracks. They start to remind me about "last week," or "last month" when I had a better day. They say, "remember when you could manage to eat two full meals AND snacks not too long ago? And that same day you also walk outside for fresh air? That day came out of no where, but it is proof that your body is capable. You are on the right path."

Next is usually when I retaliate with some more doubt or try to disprove what they said, but never the less they still don't ever let up. They tell me over and over again that I WILL get well, and they will be there every single step of the way. Their eternal optimism and unwavering positivity amazes me. It gives me the will to fight and pick myself up from the pit of negativity that I somehow fell into. I have never once seen my family panic, even when I've been in some of the worst situations. They might do it in private, but in front of me it is a united front that everything will be okay.

The job is a caregiver is unsung work. People focus so much on the patient and give them the glory for being positive or fighting hard, but I'm nothing without my family who gives me the fuel. I run on empty a lot more often then I would like to admit as the months of being sick pile on, but their support is stronger than ever. I realize that half of why I fight is for them. It's because they deserve it. I challenge you to stop and think about the people who love you the next time you want to throw in the towel. Realize that they are counting on you and how much fight they have given and continue to give of themselves on a daily basis. It's not easy to be the strength for someone they love while watching you suffer day in and day out.

To all the caregivers out there, thank you. To everyone who already unconditionally supports someone who is ill, you are the light of their lives even if they don't get a chance to tell you. And if you are a new caregiver and aren't quite sure what it entails, then let me tell you that half of the job requirement is being a positive voice no matter the circumstances. It does not matter how much doubt is being thrown your way, don't give in. Don't ever tell a patient things like, "you're right, maybe you won't get well." Or even worst, "I agree, you aren't getting any better, what now?" Things like that are not healthy or productive for the mindset of a patient. It only makes them feel guilty and helpless, and it is not conducive for healing. Even if it seems true, try to reach deep down and find 1 single positive thing, no matter how small it is which has improved. It can be anything. Find it, and remind them of it over and over again. When the smoke clears if you need to discuss new treatment options or bring up a discussion about a change of plan then do so when things have cooled. No patient can be rational or help themselves when they are in a negative panicked head space.

Doubt is crippling, but it's something that every patient will face. It doesn't make you any less of a fighter, in fact I think it strengthens you to stumble and pick yourself back up. You are forced during that time to look at all the positives and remember the good moments. Some of you might not have a direct in person support system during your illness, but a caregiver can be absolutely anyone, even a friend you met in a support group online. A caregiver is essentially someone who gives you care. It can be virtual emotional support and care, or physical in person care. The idea is still the same. They are there for you in a time of need. If you read this then I urge you to take a moment to thank them, whoever they are, for their support and love.

To my family, thank you endlessly. I love you

xoxo,
Christina

2 Comments

Letter To My Future Self

6/30/2015

5 Comments

Enjoy the breeze on a warm day, and how it feels to close your eyes and simply breathe.

Stop to look at the stars. Marvel at how brilliantly they dazzle, cushioning the brightness of the full moon. Remember how strong the effects of the moon can be, and think of those in pain cowering under their covers. Realize how remarkable it is that you can just take in the beauty of the night sky.

Savor the ice cream; the swirls of caramel & chocolate in a creamy vanilla gelato. Consume each bite slowly, remembering that doing so is not a given, it's a luxury.

Be nice to fellow drivers who might be a bit slow, or those who stop short on a yellow light causing you to be late. You don't know what they are going through. Perhaps they are in pain, perhaps they can't drive faster because their joints hurt and their head pounds, but they’re simply trying to make it home.

Take a walk at least once a week. Don't groan and grunt because it's chilly or you're not in the mood. Always go for a walk and take in the beauty of nature. Appreciate that your bones don't hurt with each step, and your heart doesn't pound so hard that you faint. Millions of people can't do what you're doing right now; relish it.

Never ever complain about the things that feel mundane. It's a privilege to take a shower every day and have the ability to do your own laundry. Put on a cheerful song or an audio book while you do the dishes, and simply be joyful in life's little things.

Trust your gut, always. It doesn’t matter what the masses have to say, you know your body and your soul better than any specialist in the world. If anything ever feels wrong follow your intuition until it leads to a resolution.

The job you have might frustrate you. It might force you to cancel plans or miss holidays, but never forget what it took to have that job/that career. Remember the years of school you fought through while ill, and the years of treatment which left you unable to form a coherent sentence or recall words. Remember all the times when your memory felt nonexistent, and even the idea of having a career one day seemed bleak and impossible. It was hard fought to have your job, so be endlessly thankful. You dreamt about this during so many days spent staring at the ceiling, wondering if you would ever be well again. If you are reading this, you are triumphant.

At one time you stood at the very core of life & felt it's heartbeat. You now know without a shadow of a doubt just how precious life truly is. You are molded and forever changed by the experiences you witnessed yourself, and within others. From others you learned lessons compounded of surprise, appreciation, exhaustion, & the enduring resolve of the human spirit. The human spirit has more fight in it than any army that has marched this earth. There is no obstacle that cannot be overcome if you have the will. Never forget that.

And most importantly above all, if you ever find yourself wanting to give up, don’t. You survived moments that felt unsurvivable, and because of that you are now unbreakable. Most people cannot say that they have looked death in the eyes and took on the challenge to keep going. It does not matter how bleak the forecast of life may look, always believe that nothing can stand in your way.

Xoxo,
Christina

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Faith In The "Rests" Of Life

Living My Best Life

Circumstances vs. Identity. I Am NOT My Illness, & Neither Are You

Living In The Now... Happy 2016!

In The Still Of The Night

Tiredness vs. Fatigue. It's Not The Same & Here's Why:

A 4 Year Reflection

Being An Open Book..

What Is The Role Of A Caregiver When A Patient Starts to Experience Self-Doubt?

Letter To My Future Self

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