Chronicles, Life, Personal Development

The Sun Will Rise

I’ve been stuck in the storm before
Felt the wind raging at my door
Couldn’t move, couldn’t breathe,
Couldn’t find a way out…

 I visited my doctor last week for my six-month check up. Six months. I can hardly believe that so much time has passed already. Sometimes, it’s hard to remember what it was like a few months ago, in those hours of pain and fog, when time seemed suspended, like I was living in limbo with a past and an unstable present but certainly no future to which to cling.

I can see my future now — there’s a dream reborn.

Sometimes it’s hard to remember what it was like just a few short weeks ago, when the depression of this disease plunged me to a depth where even the love of a dog — Riley, who has been my saving grace and one of the few hopes I’ve held onto through all of this — couldn’t reach me.

Now, I have so many more reasons for holding on than I’ve ever had for letting go.

Time has a funny way of healing — anesthetizing memories and experiences and infusing you with a strength that urges you always onward. And while I can question this suffering, while I can doubt these (many exhausting) lessons as necessary, I know in my heart that what I’ve been healing from is far more important than an insidious disease of the body. And I can finally understand how it took this healing of my body to heal myself…

My mind, my heart, my very soul.

 

And though you can’t see it,
So hard to believe it,
Sometimes you just need a little faith.
There’s an answer to your prayer
And I swear that there’ll come a day…

 

I don’t know if I’ll ever be able to understand when or how or why it happened. Nearly 300 posts on this blog and I’m still no closer to figuring that part of it out. But somewhere along the way, or maybe even since the beginning, I began to believe that I was undeserving, that I was unworthy of this world and any of its joys.

I began to believe I was unloved. I began to believe I wasn’t special.

And while I’ve always seen the world as beautiful, as magical, as full of life and love and hope, I never believed that those things were meant for me.

Those thoughts seeped into my heart like a poison where they remained, festering for years. And no affirmations, no compliments, no prayers or mantras and certainly no one could draw that poison back out.

We are our own worst enemy on our darkest days. But only when we’ve had enough — when the heart has been wounded for the last time, when we finally see the truth reflected in the mirror, when we stop hiding from ourselves — can we be our own fierce warrior.

Beneath the heavy curtain of long, cold nights, I cried out for purpose. In the clarity of morning, I’ve found reason.

I’m beginning to recognize the beauty in myself again — both body and soul.

I’m beginning to feel the fire in my belly, once reduced to mere embers, now burn with a passion for dreams and people and even life itself, fueled with intent and propelling me towards a future that I never believed was meant for me. A future that could have been reduced to ashes if I had let it.

I wouldn’t let it.

I’m beginning to find confidence that I had once buried in exchange for modesty, erroneously rejecting that confidence, mistaking it too easily for ego.

I’m believing now. I’m believing in me.

And I’m finding the joy of vulnerability, that there is love in the mending…

And there is strength in a once-fragile heart.

The sun will rise.

– Kelly Clarkson, “The Sun Will Rise” –

 

Chronicles, Life

29 and Alive

‘You were a million years of work,’
Said God and His angels, with needle and thread.
They kissed your head and said,
‘You’re a good kid and you make us proud.
So just give your best and the rest will come,
And we’ll see you soon.’
Sleeping At Last, “Needle and Thread”



Today is my 29th birthday.

I’m alive.

These are the two thoughts that kept resonating in my mind all day, and although it sounds melodramatic when stated so boldly, when I look back at all that has happened this past year, it feels little less than a miracle. Barely two months ago, I was unable to walk a few yards on my own, the pain so excruciating, the fog so overwhelming, and the fatigue so great that I couldn’t lift my head from my pillow for more than an hour at a time.

There were days when I wanted to give up and give in, so weary and worn from this fight that I began to wonder if it was worth it after all. Every new day became another new battle against this disease that had invaded and assaulted my body; every day I was haunted by memories of my so-called former life, of  what it was to be “normal,” of who I used to be and the Susan I longed to be again. Every day, it seemed, I was in conflict without and within — at war with those who questioned this disease and my character, at war with my own feelings of self-worth and deserving, and at war with my own will.

But I couldn’t give up.

You wouldn’t let me.

Every day, while that internal battle waged, you urged me to keep holding on, to trust and find my faith…

To be brave.

You, my Mom and Dad and brothers and family — you lent me your strength and love when I feared I had little left;  I owe this life to you, my walking angels.  And you, my dear friends and soulmates– you brought inspiration and laughter into my life again when laughter was hard to come by; every smile since has been because of you.

And, I’ve since realized, I wouldn’t have let myself give up, either. Because while I was at my weakest physically and sometimes emotionally, there existed in me a strength — a power, a fighting spirit — like I’ve never before known that urged me onward, that struck a fire in the deepest parts of my soul, that whispered in my darkest moments,

“You are a survivor.”

So when I say I’m alive, I mean it without melodramatics and over-sentimentality, but instead, with purpose. Because I know how easy it would be to take those two simple words for granted; I know that I almost did. But I know just how much meaning those words hold now, how just that simple affirmation can fill the soul once again with hope and promise.

And so I sing those words with every ounce of gratitude that resides within my heart.

I’m alive.

I’m alive.

I’m alive…

 

 

Chronicles, Life, Personal Development

Vulnerable

It’s eight o’clock in the morning and I’m curled up beneath a blanket with Riley to my left, a scented candle flickering on my right, and a bowl of ice cream in my lap. I’m supposed to be on a strict no sugar, limited carb plan — the Lyme feeds on the sugar — but illness be damned, I’m finding comfort wherever I can this morning.

I’ve been up since 4am, waiting for one of three things to happen: for the vivid dreams to fade back into wherever dreams go when they’re forgotten; to silence the thoughts of love and loss and forfeiture that swim through my mind; to find peace and healing as I fall back asleep.

Sleep is supposed to be healing. They say that when we get a real night’s sleep — the kind where you wake up refreshed and clear-minded — that it restores whatever damage had been done to the body the day before.

You don’t sleep with Lyme Disease. Actually, more accurately, you don’t sleep with it’s co-infection of Babesia. Oh, you “sleep” all the time — you nap 3 or 4 times a day because the fatigue is so great that you find yourself stuttering your words and the only way to fight the fog in your mind is to rest awhile, or you sleep to try to escape the pain that runs through your muscles and joints and makes it difficult to function, never mind the times when it’s hard to walk, causing you to shuffle so that you feel like you’re so much older than your almost-29 years.

Sometimes you’re lucky to sleep through the night while only waking up once around the 3am mark, always that 3am mark. But it’s not real sleep; it’s not that restorative, healing sleep that your body and mind so desperately crave.

Not yet, at least.

I wish my mind would heal. More than the tingling in my hands and the pain in my legs, I wish that my mind would somehow stop with the fog and the anxiety and the depression that coincides with such a lonely, debilitating disease.

Tuesday marked month 5 of treatment, and looking back, I can see how the good days have begun to outnumber the bad. I’ve had greater mobility and increased energy, able to work a few hours, take care of Riley and Mikey, and even do dishes or laundry or cook for myself. And when I jump in my parents’ pool for some water therapy, I feel like myself — my true self, like this illness is forgotten and I can laugh and play and move with ease and relief.

My doctor was surprised at how well I was doing, saying they usually don’t see improvement, that patients don’t see much of a difference themselves, until the six-month mark. But I knew I was pushing myself, often far beyond what I should for fear of relapses, to get better.

There’s nothing I want more than to feel alive again.

But relapses will happen, as I noticed these past two weeks. Herxes — that ugly reaction when the germs are dying off and releasing toxins that intensify your symptoms — are cyclical and unavoidable. And no matter how much I may will myself better, no matter how many prayers I whisper or scream, I’m not in control. Not really, anyway, not like I want to be.

These past two weeks, every symptom has returned in full force: the neuropathy, the inconceivable pain, the insomnia, the fatigue, the pale, ashen face that even coworkers have noticed, devoid of any rosy glow, eyes having lost their usual sparkle…It’s all back.

And the mood swings. The anger. The depression. The anxiety.

It’s this that I fear the most.

It’s this that I’m struggling the hardest to control.

It’s this that’s the hardest to fight.

It’s all part of the Lyme Disease and the Babesia, and while for so long I thought it was just a part of who I am — believing my earlier panic disorder to be a product of my fear of change — I’ve since learned that Encephalitis and psychiatric disorders (including what’s described as Lyme Rage) are a key component to this illness, indicated as Psychiatric Lyme. Reading, researching, and listening to the horror stories that my doctor and his wife tell me about their patients, who are so much worse off than I am, I’m both relieved and terrified. Could that have been me with the paranoia and hallucinations?  Could the depression and anxiety have gotten so bad that I’m afraid to leave the house, my bed?

It could have been. I was almost there, once, when I was in high school and so anxious about keeping my family safe that I begged my parents not to go to work and leave me. It almost happened two weeks ago, when my dad picked me up from work because I was too fatigued and pained to drive, when I begged him not to run  his errands, making him promise to go straight home after taking me home instead.

The rational side of me now knows that it’s this disease wreaking havoc on my neurological system, the Lyme bacteria fighting to stay alive or dying off and releasing their toxins that make things worse before they get better; this side of me knows that there’s nothing to be afraid of, that I can’t control what happens in life anymore than I can control the people in my life.

But the dread begins to build and I find myself wanting nothing more than to cocoon my loved ones and protect them.

The hardest part of this whole illness has been reconciling the fact that this isn’t me. No, this isn’t me. I know who I am — perhaps overly passive and non-confrontational, patient and kind, bubbly and naturally optimistic…

This is who I am. This is who I am in my heart and my mind and at my very core; it’s who I’ve always been.

But this deep depression that seeps into my heart, these dreams that linger long after I’ve awakened, and these thoughts that haunt me in the middle of the night, saying “I’m alone, I’ll always be alone, that I have nothing left to fight with anymore…” It’s this that scares me most. Because of all the symptoms, it’s these thoughts that are the most powerful, the most destructive.

I don’t want to fight anymore.

It’s exhausting and disheartening and so hard to constantly fight a daily battle whose end seems so far away.

But I’m not going to give up, either.

Because I know that the people I love will fight for me when I’m too weak, but I’m trying to be strong enough now to carry on through.

Because I know that 3am will always pass into morning and the sun will always rise.

Because I dream of life and love and know those things will, in time, return to me.

Because I dream that one day soon, life will return to me.

 

If you’ve been there you know
If you’re still there hang on
We’re all dealt our lumps of coal
What you do with it can turn beautiful…
“Nice, Naive, and Beautiful,” Plumb

Chronicles, Life, Personal Development

When The Devil’s On Your Back

And it’s hard to dance with a devil on your back
So shake him off
Florence + the Machine, “Shake It Out”

 

 

So, it’s been awhile. Almost two months to the day, actually, since I’ve last written here. I think about writing all the time — there’s so much I want to say, so much I need to let out, so much I want to explain and inform and vent. There’s so much that I need to say, so much that I’ve been holding in…

Except, I just can’t find the words.

I promised myself when this all began that I would journal or blog every day, that I would chronicle this journey through Lyme Disease not just so that I and others can better understand this  life-changing disease, but so that I would have an outlet for the very emotional trial that this has become. Writing has always been my catharsis, and this blog has been and will always remain the place where I am free to speak everything that hides in the secret spaces of my heart.

But I haven’t been writing. Instead, I’ve turned to my confidantes, my pillars of strength, my own personal superheroes: my family. Instead, I’ve exchanged texts and phone calls with the friends who have become my angels. Instead, I’ve cried into Riley’s fur while holding him close, my saving grace.

There’s so much to this disease that I haven’t been able to share, things that I long to say, things that I still hold in because I don’t want to be a burden, because I don’t want to chase people away with the trappings of negativity that this disease lays bare. But the isolation and loneliness of Lyme is suffocating, and the solitude becomes its own disease that eats away at the soul.

And so I try to stay connected in other ways, to live vicariously through friends, to enjoy the life they’re living when I can’t yet enjoy my own.  And I post bits of my own journey to Facebook and Twitter, knowing that I need that outlet, that connection to the outside world. At a time when I barely leave the house except for doctors appointments, to spend nights at my parents’ so they can take care of me when I can’t be alone, or the few hours I can make it into work, social media becomes that haven where, for just a little while, I can feel like I’ve become part of the world again.

It’s beginning to feel like the world is there, just around the corner, waiting for me.

I’m beginning to feel alive again. While I once feared I had become but a shell of someone who used to be, so severe had the pain and fatigue and fog become, I’m beginning to find the human underneath the symptoms again, the person and not the patient.

I’m beginning to understand the lessons this disease has been so gruelingly teaching me:

To stand up for and trust in yourself — you and you alone know your body. I was passed around from specialist to specialist for months, having been previously misdiagnosed numerous times for nearly fifteen years, before I began doing my own research, insisting on tests, and demanding follow-ups. With the many crazy (I mean, ridiculously bizarre) and often unrelated symptoms that this disease produces and that I was experiencing, I thought I was just being paranoid. And after dozens of trips to the doctors, I’m pretty sure they did, too. But I knew that there was something — something that just wasn’t adding up. So I read and I researched and I typed every symptom and search phrase into Google that I could think of in search of a cause.

And then, I found my miracle.

To recognize, pay attention to, and appreciate your limits — I push myself beyond what I’m physically and mentally capable of at the moment, wanting to “be normal” when I know right now I’m anything but. For some ridiculous reason, I feel this need to please everyone, to prove something — to myself and to others — to make sure that I don’t disappoint anyone or let anyone down. So I keep going, though I have nothing left to keep me going, trying to somehow show that I can do this, that I’m trying with everything I’ve got to get better and still hold my life together.

But then I push too far. Then the crash happens and I shut down and the downward spiral begins. I’ll spend the following days in inexplicable pain, barely able to walk, barely able to stay awake or focus for more than an hour at a time. And yet I keep thinking, if I can work just one more hour, if I can clean just one more dish, if I can walk just one more step…

But I can’t.

And it takes everything you have, all of your strength, not to let that stress, that feeling of failure and disappointment from yourself and from others — like you could be better and do better and should be better by now — destroy you.

To never apologize for an illness — it’s not something you choose or can control. And for anyone to think otherwise shows a lack of understanding and compassion on their part, not a failure on yours. I used to apologize for the inconvenience that this disease imparted on others, feeling bad about feeling so bad. I used to think, if only I could make them understand what it’s like...But I’m learning — oh, I’m not done learning — that maybe not everyone wants to understand, and maybe that’s not a reflection on me but, rather, on them.

Having a truly horrifying and debilitating disease disseminate throughout your body — working its way into your neurological and central nervous systems —  isn’t something you would ever choose. Having it change your life — as you fight to save your life — isn’t something you can control.

Life happens. Health happens. And I’m learning that the only thing I should be worried about is this road to recovery.

To accept help — it’s not easy saying yes when help is offered. And it’s even harder asking for it when you need it. As someone who prides herself on being independent, this disease has been a huge awakening. It’s that pride that is one of my greatest flaws. I used to think that I was supposed to be some kind of superwoman — that I had to do everything on my own. I used to think that I could take on the world.

I knew, though, from the beginning, that I would never be able to fight this disease on my own. My family has been my greatest support and I’ve never hesitated to cry to them or ask them for help because I’ve always known that we’d always be there for each other — that’s what family does. That’s who my family is, through it all.

But with others, it felt different. As much as I love taking care of others, I never want to be a burden on anyone, and with all that I find I’m in need of now, I’ve felt that, somehow, that’s exactly what I’ve become. Unable to drive, unable to take care of my lawn and my house, unable to go out and be social, I’ve found myself appreciative of the willingness of family and friends to run errands for me, I’ve found myself thankful for neighbors who weed my garden (and tell me I’m an idiot for feeling bad for having them do so, see bullet point above), and I’ve found myself feeling closer than ever and forever grateful for those friends who, understanding the loneliness that a chronic disease imparts, call and Facebook and tweet and visit just to say hi, how are you doing, I’ve been thinking of you…

It’s these people who have stood by through this rough time, who encourage me and support me and show me what it means to be remembered and cared for, who remind me that love is a two-way street — that I can care for others, yes, but there are times when I need to be taken care of in return.

They remind me I’m not superwoman.

They remind me that I don’t have to be.

To never take anything for granted — Anything. Ever.

So I’m learning as I’m healing. I’m learning about myself, I’m learning about this disease, and I’m learning about and opening my eyes more to the world which surrounds me, a world in which I hope to become an active part again.

It’s there, on the horizon, waiting…

Until then, I’m still here.

In that space where the darkest days begin to feel like a memory and better days are still yet ahead, I’m finding hope.

I’m finding strength.

I’m finding my own salvation.

 

Awareness, Chronicles, Life

Under This Skin

May is Lyme Awareness month.

It seems ironic that we would find a diagnosis and begin treatment now, after so many weeks, months, years of being ill…But it’s also completely appropriate — because if my story can help just one person either through their own journey with Lyme or to bring such awareness that they may show compassion for others fighting this disease, then maybe it’s worth it.

Because education and awareness is where it begins…

It’s how we win.

* * * * *

Ok, so now that you know how “ticked off” I am, let’s get down to the science of it all…

It starts with a tick. See the period at the end of that last sentence? They can be that small, almost impossible to detect, and yet the damage it causes can be considered, in a word, disastrous to the human body.

Commonly known as deer ticks, these insects thrive in nature, just as they thrive on animals, just as they thrive on us.

First recognized in 1975 in the town of Lyme, Connecticut, this disease has since spread to nearly every continent and is most prevalent in North America and Western Europe. Recent statistics claim it to be an epidemic on par, if not exceeding, that of HIV and AIDS. While it was once believed to remain in a controlled area (namely, New England), the Eastern, Mid-West, and Western United States now show a high-incidence rate, making it one of the fastest-growing infectious diseases in the country. Land development has stirred these ticks from their habitat of primarily wooded areas to more suburban environments, which researchers believe may be a factor for the rapid spreading of the disease.

Here’s the science behind it:

Lyme Disease is spread when a person (or dog, as in the case of canine-Lyme disease) is bitten by a tick that has been infected with a bacteria called Borrelia burgdorferi. Fancy, huh? Borellia burgdorferi is a member of the spirochete family, a corkscrew-shaped bacteria with similar physical components to Syphilis.

When the infected tick feeds on its host (i.e. you), bacteria is transmitted into your bloodstream, eventually making its way into tissue and manifesting into a multi-system disease. These bacteria are smart. Like, really smart. Like, MENSA smart. Remember that corkscrew shape? This shape is what allows them to travel through the body’s tissue and into the central nervous system and, in later stages, the heart, and the brain. And when treatment does begin, they burrow even deeper into the body, often forming cysts in which to hide themselves.

If found early, Lyme Disease can be treated (and presumably cured) with a course of heavy-duty antibiotics. However, what makes this disease so complicated is that its symptoms are often overlooked, the testing is notably inaccurate, and doctors often turn a blind eye due to the disease and its treatment’s controversial and politically-sensitive nature (more on this later).

A clinical diagnosis has become necessary in order to diagnose Lyme Disease, as the classic bulls-eye rash (known as an EM rash) appears on only a percentage of patients and, even then, only within a few weeks of being bitten. What makes a diagnosis even more challenging are the symptoms with which early Lyme is presented: fatigue, chills, fever, headache, swollen lymph nodes…Sounds a lot like Mono, doesn’t it? In fact, that’s what we believed I had contracted initially and had been diagnosed with multiple times over the past ten years…A virus, a cold, a “summertime flu…” With seemingly generic symptoms, it’s easy to see how such a “simple disease” to treat in its early stages can be so readily missed.

But what about the testing? Surely, there’s got to be some kind of bloodwork that can be done to confirm or dismiss a diagnosis of Lyme Disease?

And that’s where the controversy begins to take shape…

Remember when I said that Lyme Disease needed a clinical diagnosis? That’s because diagnosing Lyme is a lot like piecing together a thousand-piece puzzle without the picture on the front of the box to guide you. What you have spread out before you are misshaped puzzle pieces that look a lot like each other, and it takes trial and error, some guesswork, and a lot of patience to put it all together.

And, more often than not, you can’t do it alone.

Lyme is recognized as being a disease that mimics other autoimmune diseases: in its late stages — such as my experience — its symptoms can lead doctors to misdiagnose Lyme patients with the likes of: Lupus, Fibromayalgia, Rheumatoid Arthritis, Multiple Sclerosis, Chronic Fatigue Syndrome, Parkinson’s Disease, and many others. In fact, the symptoms are so similar that some researchers are beginning to investigate the connection between these diseases and Lyme, and many Lyme-Literate doctors are questioning whether these diagnoses are separate diseases at all.

That’s where all the pieces comes together: a doctor knowledgeable in Lyme will take a history and look at the evidence —  look at you — and take into account all of the symptoms and testing that either rules out other diseases or definitively points to Lyme.

Testing alone isn’t a definitive conclusion. Especially since the initial testing for Lyme antibodies are often inaccurate, especially in the late or chronic stage of the disease. The CDC even acknowledges the possibility for false-negatives, and many Lyme-advocate organizations, including ILADS (International Lyme and Associated Diseases Society) state that the initial test for Lyme is only 65% accurate.

As of today, there are two blood tests for Lyme: The ELISA test is used by doctors as the first of a two-part screening test for Lyme antibodies. If the test is positive, the Western Blot test — more sensitive than the ELISA test — is ordered to check for specific bands.

Not only are the blood tests themselves highly inaccurate, but the labs in which they’re performed only report certain bands, which are then reported to the doctor and patient as negative or a false-positive. Furthermore, rarely are these patients checked for the co-infections that are often discovered in conjunction with Lyme Disease, which further complicates the disease, its progression, and its eventual treatment. (Sadly, there are only two known labs in the United States whose testing is sensitive enough to accurately check for both Lyme and its co-infections).

Ok, so that doesn’t seem so controversial. What’s the deal?

It’s true that finding a diagnosis can be the most frustrating part for some patients. Personally, I went through my own living hell for at least ten years, visiting doctor after doctor, undergoing test after test, diagnosed with everything from an anxiety disorder and depression to PCOS, gallbladder disease, Fibromayalgia, migraines, Chronic Fatigue Syndrome, Neurally Mediated Hypotension, and more when in fact, every single “diagnosis” was actually a symptom of Lyme Disease and its co-infection of Babesia (a malaria-like infection). Everything. Everything. Yes, including the panic disorder, I was surprised to discover.

But the fight doesn’t end with a diagnosis. In fact, that’s often where it begins.

The outstanding documentary “Under Our Skin” (available for free on Hulu and Netflix — go watch it right now, I’ll wait…) peels back the curtain on the politics surrounding not only the diagnosis of Lyme Disease, but its treatment as well.

Doctors and researchers (and many medical websites) follow the IDSA guidelines that state that a 2-4 week course of antibiotics will cure Lyme Disease, no matter what stage. Because of this, insurance companies often refuse to pay beyond the 30-day prescription, costing patients thousands of dollars out-of-pocket for further — necessary — medical care. However, it has since been discovered that many of the doctors and researchers who wrote these guidelines are working with the insurance companies.

Let me put that another way: the same doctors who claim that it only takes 30 days of antibiotics to completely cure any stage of Lyme Disease (never mind its co-infections) are in the pockets of the insurance company.

One more time: Through their own willful ignorance and arrogance, these so-called doctors are saving insurance companies money instead of saving patients’ lives.

Those who are in late-stage or who have chronic Lyme require months and even years of treatment before they even begin to feel better, never mind becoming “cured.” And those who have the most severe cases of Lyme and its co-infections spend most of this treatment feeling worse due to what’s called a Herxheimer reaction.

Remember how smart these bacteria are? They want to survive at any cost, so they will burrow and hide deeper in the body while the antibiotics seek them out and then, as if saying one last hurrah, as they’re being killed off, these bacteria release toxins that cause a reaction similar to the symptoms of the disease itself with varying (often heightened) intensity — thus the fight song that patients will get worse before they get better, the prayer to hold on because to “Herx,” so to speak, means the antibiotics are working and there’s hope for a future.

Yet because of the treatment guidelines and refusal of many non-Lyme-literate doctors to treat further than the 30 days, patients end up reverting or becoming worse.

Lyme — a disease so needlessly dangerous as it becomes an epidemic– can destroy the body and the mind, leaving its patients crippled by a disease and a system that refuses to save them.

It’s enough to really tick you off.

* * * * *

 

Note: A more in-depth look into this controversy regarding Lyme treatment and diagnosis and my own views/experiences will be continued in a follow-up post. In the meantime, please (please) watch the documentary “Under Our Skin” and share it with others so that awareness and compassion for those fighting this horrible disease can grow.

 

Disclaimer: I’m not a doctor, but rather a newly-diagnosed Lyme patient. The above information is knowledge based on my own research and discussions with other patients and doctors. If you find anything to be factually inaccurate, please don’t hesitate to contact me so that I may amend it immediately. My sole purpose for these chronicles is education, awareness, and my own catharsis.