Tag Archives: Susan Pogorzelski

The Pursuit of Answers: What My Doctors Said

by Susan Pogorzelski
#MyLymeLife

What was the path to your Lyme diagnosis?

 

I’m in middle school the first time it happens. I’m 13, I think. Possibly younger. We’ve just returned from a school camping trip where I’d proudly proclaimed I was a nature girl after climbing up muddy embankments and hiking along trails lined with maple trees. I fall ill quickly with a fatigue that won’t abate and a fever that sends me directly to the doctor. The diagnosis: mononucleosis.

“I don’t understand,” I say to my mom. “Is this really what mono’s supposed to feel like?”

I get the nagging feeling that something isn’t right. But I’m 13. Possibly younger. What do I know?

* * *

I’m sitting in the living room with my parents a year later, watching a comedy rerun on TV. My chest feels inexplicably heavy. I inhale slowly, but my breathing feels too shallow. I take another breath, then another, and one more. It’s not enough.

My mom glances over at me and asks what’s wrong, but I shake my head, unable to speak. I’m sucking in mouthfuls of air, but it’s like the more I try to breathe, the shallower my breath becomes. My parents are alarmed. My mom instructs me to blow into a paper bag, but the air tastes tainted. I need fresh air, I tell them, but even outside, there doesn’t seem to be enough oxygen in the world. I’m weak. I’m pale. They usher me into the car and drive me to the ER. Tests are run on my heart and my lungs. Finally a doctor comes in to see me.

“You had a panic attack,” she says matter-of-factly. She makes a note of anxiety and depression in my chart and instructs me to follow up with my primary care physician.

It’s a diagnosis that will haunt me for years.

* * *

I’m a senior in high school, and although my original breathing issues abated within months, the panic attacks are real now. Dread rests in the pit of my stomach while an irrational fear runs through my body. I’m afraid to leave my house, afraid to leave my family, afraid, afraid, afraid…

It’s five in the morning, and I hear my dad getting ready to leave for work. In the darkness of the early hour, I’m gripped by a fear for which there are no words. I jump out of bed and race down the hall in uncontrollable sobs, begging him not to go to work, like I’m still a child afraid of being separated for even a few minutes.

“What’s wrong?” my parents ask, but I don’t know. I don’t know… All I know is fear has taken hold of me and won’t let go.

I spend my senior year trying to build up the courage to go to school. Once I’m there, I’m fine—happy and successful, even, with good grades, great friends, and leadership roles. But it’s the mornings that are the worst. I make it to the end of the driveway before I find myself running back inside. I drive a few blocks out of my neighborhood before I have to turn back around. I have a special excuse from class so I can sit in the courtyard and calm myself in the fresh air when that familiar fear grips me, and once or twice, I think about running all the way home instead.

It’s like something inside of me is telling me that home is the safest place there is, and if I’m home, then maybe I can cocoon my family there, too.

“Anxiety attacks,” my doctor says.

Now I’m seeing a psychiatrist who is talking about how getting ready to leave home for college and all the change that comes with growing up is triggering this disorder.

It makes sense. So I believe him.

* * *

I’m 24 and being scolded at my job for needing to take too many sick days.

“Well, what did the doctor say?” my colleague asks.

“Just another virus,” I say.

* * *

I’m 28 years old and in tears from the pain that’s shooting across my upper abdomen.

“It’s just a virus,” my general practitioner says, echoing an old refrain.

At my insistence, we schedule a never-ending parade of tests that I wouldn’t want if I had a choice and they don’t think I need except for the fact that the pain is persisting and only getting worse. I’m groggy after an endoscopy. My gastroenterologist proclaims nothing showed up as irregular on the test. Then he pats me on the shoulder and smiles.

“Just a sensitive stomach,” he says.

A few months later, they’re removing an infected gallbladder.

* * *

I’m 29 years old and dying. I know this. My parents know this. It’s been four months since my gallbladder surgery, and I’m so weak, I can’t walk. My brain feels so broken, I can barely talk. Burning sensations shoot through my legs. Words don’t make sense, and I can’t recognize my best friend even when she’s standing right in front of me. My face is ashen. The light in my eyes has gone out. I’m a shell of my former self.

My parents are determined to help me. We go to one of the top teaching hospitals in the country.

“Migraines and a vitamin deficiency,” the doctor says when my scans come back clear.

I cry.

I dry my tears.

I resolve to save my own life.

* * *

I’m sitting in a doctor’s office 200 miles from home. It’s six months after my gallbladder surgery and two months since my last hospital visit. This is my final hope.

I think about all the research I’ve done—all the studies I’ve read, all the patient testimonies I’ve reviewed. My suspicions—the very reason I’m here—is the only thing that explains the years and years of symptoms and this sudden decline in health. I see the look in my parents’ eyes, see the question that’s hidden there as my doctor reviews my history and labs—will he save my life?

“You have Lyme disease,” he confirms. “Without a doubt.”

I begin to cry, relief flooding through me.

Yes, he will.

* * *

I’m 33 years old today. In a few short months, I’ll be 34. I get to see 34 because after all these years and all this suffering, someone took the time to learn. They took the time to listen. For the first time, I’m not dismissed with a wave of the hand or a pat on the shoulder. For the first time, someone is looking at me as a human being instead of a compilation of conflicting symptoms.

I’m here because we fought to save my life together.

 * * *

Sometimes I look back on all those years and doctors, and I’m stunned by the flippancy with which I was treated. Yet I know even my experiences are tame in comparison to what I’ve heard from other Lyme patients. I remember a time when yet another doctor scolded me for looking up my symptoms on the internet, for not trusting him to do his job. But it was only by trusting myself that there was something more going on here, that there was some complex piece to this health puzzle that had yet to be resolved, that I ended up saving my life.

Over the years, I’ve learned to become my own health advocate, to speak up when a diagnosis or treatment doesn’t seem right. I’m formidable. I ask question after question and demand the reply. As Lyme patients, we don’t have a choice. While the medical community is slowly learning thanks to increased awareness, many patients continue to fall through the cracks, misdiagnosed with Band-Aids placed on aggravating symptoms, concerns dismissed with a flippant wave of the hand or those few damning words: “It’s just a virus.”

There’s one thing I know for certain now, after all this time: We are worthy of answers.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Determination Through Despair: A Lyme Warrior Speaks

by Susan Pogorzelski
#MyLymeLife

From one Lyme warrior to another.

 

I’d be lying if I said this wasn’t a difficult time. I’m still struggling to recover from this disease—the raw feelings surrounding this daily battle are documented regularly on my blogs and across social media. I’m still reaching out to Lyme patients and trying to find new ways to connect and provide emotional support and friendship to those who are suffering from this isolating illness. I’m still trying to grow my own business so I have some means of financial support, even though I’m only partially functioning and never have any consistency. I’m still trying to write my novels—my passion—in the rare moments when the fog in my mind clears. I refuse to let Lyme take that away from me, too.

But I’d be lying if I said it was easy to keep holding on.

There’s so much more to Lyme disease that most people can’t understand unless they’ve experienced it themselves. It’s not just the physical symptoms that make life impossible —it’s the emotional. It’s the financial. It’s the burden under which we’re forced to bend until we break. And boy, do we break. If anything, Lyme teaches us resilience. But how many times do we have to break down and build ourselves back up before it all becomes too much?

Sometimes this disease feels impossible. Too often, we walk in darkness.

I need to stop speaking in the abstract. That doesn’t help anyone. So here’s the truth of my Lyme disease: Even as I continue to get better, the bills add up. Medicine and doctor visits are all out of pocket and expensive—and that’s just for the oral antibiotics which I’m taking. I’m waiting to get a disability hearing, but that won’t be scheduled until 2018. In the meantime, I need some financial relief until I can go back to work without worrying that I’m either jeopardizing my health or that I won’t lose whatever job I do get because I have good health days, but they’re always followed by bad weeks.

I’m on government assistance. I’m relying on my family to get me through each month, placing an even bigger financial burden on them. Come August, if nothing changes, I’ll have to sell my house. In the meantime, I’m trying to build up my editing and writing business and do odd jobs so I’m able to earn some income. I’ve always believed in working hard for what you earn. But those jobs are hit or miss. It never feels like enough.

I try to be positive and live in gratitude because I have way more than some, and I recognize that. But every day is a struggle. Every single day. And the worst thing about it is that my story is all-too-common.

This is why I advocate so strongly for Lyme patients. Because we live in this hell for years and years, and if I can help prevent the suffering of just one person—if I can show them they’re not alone—then maybe I’m still here for a reason. Some days, though, it’s hard to tell.

I don’t mean to be so blunt. I don’t mean to sound so weary. But the truth is, I’m tired. I’m tired. I’m so damn tired.

I don’t like people to see this side of me—this side that’s depressed and anxious about her future, whose desperation screams so loudly, I begin to wonder if I even have one. I don’t like others to see this side of me because it’s not indicative of who I really am.

I’m the girl who is strong and brave and formidable in the face of adversity. I’m the girl who strives to help others rise in the face of their own battles, who offers hope in times of darkness because she believes hope can light the world. I’m the girl who faces obstacles with resilience and accepts challenges in stride, persisting despite resistance.

But sometimes I’m also this: Lonely. Scared. Defeated.

This week, I was the girl who sank so low into darkness, she didn’t think she’d ever find her way back out. I was the girl who lost her empathy and ability to cope, who pushed away loved ones, who lashed out at the hands that tried to help her rise from this dark corner. I was the girl who sank to the kitchen floor and curled up near the cabinets, sobbing because she couldn’t see a way forward, a way past this pain.

“I can’t do this. I can’t do this. I don’t want to do this anymore.”

How many times have I said those words? But I’m still here. I am still doing this. Because there is no choice. I can’t support others on this journey if I’m crumbling under the weight of my own.  So I’ve learned to keep picking myself up. I focus on the victories. I reassemble the pieces that fall apart. I fight to keep shedding light on the dark corners of the world even though my own world feels dark because the fire inside me refuses to go out.

I refuse to let it.

Little by little, the light I strive so hard to cast for others spreads to myself, and I bask in its glow for a while. I’m starting to learn how to do that, too. But it’s hard to keep that light there when this disease has shadowed you for so long. It’s hard to keep going when you don’t know where this ends.

All I can do is make a promise myself and to you. I’ll keep going. I’ll keep picking up the broken pieces. I’ll keep trying to shape them into something useful, something beautiful. I’ll keep casting light on all those dark corners of this disease. And I’ll keep trying to remember that I can walk in that light myself.

I promise I’ll keep fighting for you, for me, for us. I won’t stop.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Loving Yourself Through Lyme Disease

by Susan Pogorzelski
#MyLymeLife

Living with Lyme disease can damage both your body and your soul. How do you take care of yourself, emotionally?

 

This May it will be five years since I was diagnosed with chronic Lyme disease and 20 years since I first started getting sick. Sometimes, I look at those numbers, look back on all the years, and I’m speechless. I don’t know how I’m still here, but I am. And I intend to stay.

Today my dad and I drove down to Maryland to see my new Lyme doctor. His wife also has Lyme and—like my first doctor who saved my life—I liked them immediately. He sat and listened to my story, asking questions about my symptoms and then examined me.

“How long have you had these stretch marks on your abdomen?” he asked.

“For as long as I’ve been fat,” I joked. Then I explained how I put the weight on—a lot and quickly—since I’ve had Lyme, and again when I relapsed.

“They’re going the wrong way for stretch marks,” he noted.

I looked at him, somewhat surprised. “Bartonella rash?” I asked.

“Bartonella rash,” he confirmed.

My body is what I’ve been the most insecure about since dealing with Lyme. When I was sick with mononucleosis in middle school I “blew up,” so to speak, gaining weight rapidly, unable to lose it. Eventually, when I was in high school, I did lose it all and rather quickly. I only wish now I had been more confident in who I was back then. Now, all these years later, I wish I could match what I feel on the inside—strong and brave and beautiful—with the outside, when all I see when I look in the mirror is someone who’s tired and weighed down by this disease.

Ah, but isn’t that just the way it goes?

Now that we’re able to recognize that bout of “mono” as my first brush with Lyme—now that I’ve experienced my second rapid weight gain—I’m starting to understand how this illness ravages the body and the mind. Stubborn weight gain is not unusual in that the bacteria damage the metabolism, thyroid, adrenals, and gut. It’s disheartening, truly. It feels like no matter what you do, it won’t make a difference.

Except it all makes a difference. I’m not going to lose the weight until I start getting better from this disease, I know that. But that means I need to reaffirm my dedication to my recovery—eradicating the infections with a new cocktail of antibiotics, reducing the inflammation with nutrient-rich foods and supplements so my organs start doing their jobs, and building my immune system strength so my body can learn to fight on its own again. It also means more patience on this journey, continued self-care.

I’m not doing anything wildly different as far as a treatment plan. Tweaks to the antibiotics, changes to the supplements, re-focusing on healthy foods, and exercising only as much as my stamina and the illness will allow. But once again I’m armed with renewed hope and determination. Once again, I’m ready to do what it takes to be healthy again.

Or, you know… For the first time.

This disease has been hell in so many more ways than one. It’s broken me time and time again, over and over. But it’s also forced me to face what I didn’t want to face, making me into someone I hope is better and bolder and stronger.

These past five years, I’ve spent so much time healing emotionally and spiritually. I’ve spent so much time trying to build back everything I’ve lost. I’ve spent so much time rediscovering who I want to be and learning to believe in and love who I already am inside.

Now it’s time to accept and love who I am outside. It’s time to accept and love my body for all it’s been through, to forgive myself for what it is right now.

Love is love
reflected inside and out.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.


 

SUPPORT #TEAMGLA in TOUGH MUDDER

When We Build Cathedrals

by Susan Pogorzelski
#MyLymeLife

Finding the strength to build when your chronic illness leaves you feeling exhausted and invisible.

 

I recently read a powerful story by author and speaker Nicole Johnson about a gift she received at a dinner party. It was a book about cathedrals whose message she didn’t understand until she read the inscription from her friend. The inscription read, “With admiration for the greatness of what you are building when no one sees” and came at a time when Nicole herself was struggling with feelings of inadequacy and invisibility as a mother.

When she read the book, she found it life-affirming. The world doesn’t know who built these cathedrals of prestige and beauty, she explained, but the builders were fueled by faith, passion, and purpose in their work. Nicole continued to reiterate a story in the book of a wealthy man who approached one of the builders while he worked. She writes:

“He saw the workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, ‘Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.’ And the workman replied, ‘Because God sees.’”

I’m not a mother, but these were the words I’ve been needing to hear for so long now. Because while I may not know what it’s like to feel invisible with regard to parenthood, I know what it’s  like in the face of chronic illness. I’ve lived with the hope that someone might see me, hear me, for the past five years—even longer, as this has been a common refrain for most of my life.

Doctors wouldn’t hear me when I told them there was something gravely wrong with my health, when I begged them to help me save my life. So I saved my own by finding a doctor who would. Colleagues refused to see my pain, instead spreading rumors and calling my character and work ethic into question when I couldn’t walk, could barely talk, couldn’t find the energy to lift my head from the pillow for more than minutes at a time. So I confronted them with dignity, pushed myself past my limitations, and fought my way into remission…and a promotion. Family and friends tried but couldn’t understand the lifelong effects of this disease. So I held awareness events in my local community, wrote blog posts and a second novel about Lyme disease to encourage compassion, and reached out to other patients knowing they might be feeling just as alone, to assure them that we were on this journey together.

With each challenge, I’ve pushed forward to save myself, to create something lasting for myself,  to leave a story of hope behind for others. Where this illness has consistently tried to break me down, I keep moving forward to build my life back up because I don’t know how to stop, even through this recent relapse, and the fire inside won’t let me.

But I’m tired now.

I’m tired of fighting against this dark cloud that seems to hang overhead, cutting the signal, preventing me from reaching those I want to reach and helping those I want to help. I’m tired of the days when my energy is sapped, when I lie in bed unable to move, wishing I could be working or writing or being useful in some way. I’m tired of the glimpses—small pockets of life purpose that give me just enough willpower to carry on into tomorrow, but maybe not the next day.

I’m doing so much, but it never feels like enough, and I’m just so tired.

I’m staring at my own life—this cathedral I’ve built from the ashes of this disease—and I can’t see past the beams. What will this life look like in the end? What positive change will have come from my own suffering? What purpose still remains? If I’m invisible to everyone already—feeling like I’m barely reaching anyone—then what hope is there for what I’m building now?

Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.

Because it’s there. I know it’s there, this work I’ve created full of hope and heart, and maybe that’s what matters.

I don’t know if what I’m building will be seen. I don’t know if the words I’m sharing will be heard. But they’re here for those who need it. And I’ll keep sharing. I’ll keep building. I promise I won’t ever stop.

Word by word, carved bird by carved bird, I’ll work beside others and build and build and build until the legacy lies within the cathedral itself—hope and faith and change for those to follow, so that those who suffer will be seen and heard, and not just by those who choose to look.

There’s a purpose for us yet.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Lyme Lies

by Susan Pogorzelski
#MyLymeLife

How does your illness speak to you?

 

There it is again—that voice in the back of my mind, growing louder, crushing my confidence and making me feel worse.“You’re sick,” it reminds me. “You’re always going to be sick.”

I could close my eyes, but I’d still hear that voice. It’s like a shadow I can’t shake off. It’s there when the fatigue overwhelms me, when I can barely lift my head from the pillow to glance at the clock and see that hours have passed, but I still can’t wake up. The voice is there when the pain moves through my legs, squeezing the muscles, hurting right down to the bone. It’s there when the heels of my feet burn, when my heart flutters to its own eccentric rhythm, when the fever spikes.

“You’ll never travel again like you want to,” it says. “You’ll never go back to work like you need to or have the writing career you dreamed of.”

It’s there, the voice reminding me of everything I’ve lost, the future I could have had.

“You’ll never be well enough. You’ll never be good enough.”

Then, it grows louder still, pulling me in deeper.

“You’re helpless, useless, hopeless…”

The words are familiar. I’ve heard them before in a voice that sounds like my own. They’re the refrain I repeated for nearly a year when I was first diagnosed with Lyme Disease, when it was hard to see past the hour, never mind the day, in which I suffered. I gave into that voice, listened to those words like they were lyrics to a song stuck on repeat.

They’re right, I thought on the days when I could stay awake only for minutes at a time. I was helpless, useless, hopeless…

For months, that voice taunted me, until the day I stayed awake a little longer, until the day the pain subsided just a fraction, until the day the fever broke. It wasn’t until I began to feel better, until I began to find some reprieve from the symptoms and suffering of this illness, that the voice that had sounded so much like my own began to sing a different song.

“Be patient, dear girl,” it kindly said. “You’re so much stronger than you feel right now.”

The day I discovered self-compassion in the face of this illness was the day I learned that Lyme lies.

It lies when it tells you you’ll never get better. It lies when it tells you you’ll never be independent again. It lies when it tells you you’re without purpose in the world.

It lies when it tells you this disease is all that you are.

You are more than this disease.

This week, my recovery has had a bit of a setback. Those familiar symptoms have returned, leaving both my body and spirit weakened, leaving room for that voice to return and whisper its tale of destruction. It’s easy to let go of the self-compassion I’ve cultivated—a type of self-care, even self-preservation, that’s been necessary for my emotional healing. It’s easy to listen to the voice that wants me to succumb, to remember all that I’ve lost instead of all that I still have. But I won’t.

Instead, I’m reminding myself that I’m more than my illness, more than the sum of this disease.

I’m more than the lies that Lyme likes to tell me.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Dreaming of Better Days

by Susan Pogorzelski
#MyLymeLife

Do you dream of the day when rest is a choice, not a need? And when your friends and family truly understand the toll that Lyme disease takes on your body and your mind?

 

It’s eleven in the morning as I write this, a full ten minutes since I’ve woken up from my first nap. My life is routine these days, thanks to Lyme disease. Wake at seven, let the dogs out, force myself to eat breakfast so I can swallow a handful of antibiotics, then back to bed because the fatigue lies heavy, like a blanket on both my mind and body. Only then, when I awake a few hours later, am I finally able to function.

Then there’s lunch, supplements, household chores or working on the new novel or, if I’m having a really good day, a much-needed trip to the grocery store. These activities are always followed by an afternoon nap. If I’m feeling well, it’ll last two hours at most. If I’ve pushed myself beyond my known limitations, I’ll sleep well past dinnertime, waking up only when my dogs nuzzle me with their reminder to feed them, waking up only because they need me.

My friends used to joke about my napping, and because I had a pretty good sense of humor back then, I laughed along with them. I wasn’t blind to how ridiculous it seemed. I was young, seemingly healthy, with passion and ambition guiding me forward in life. So why was I sleeping my life away?

Every day after school, I’d fall asleep on the couch until my parents woke me up for dinner and homework. I remember becoming irrationally angry with them, wondering why they couldn’t let me sleep until I was ready to wake up. I didn’t understand it then, but I recognize it now: my body was refueling itself, and waking up before my energy was fully restored meant that I wouldn’t have enough to get through the night and into tomorrow.

When I was in college, with a diagnosis of Chronic Fatigue Syndrome, I wisely scheduled my classes as far apart as possible so I’d have enough time to rest in between. I didn’t know I had Lyme then, and I didn’t understand the implications Chronic Fatigue Syndrome could have on a life. I only knew that sleep restored me while life seemed to drain me.

“Were you taking a nap again?” my friends would ask, their voices filled with amusement.

I’d shrug my shoulders and laugh along with them. “You need coffee, I need sleep,” would be my reply.

blog_mylymelife_suep_dream_quote

While everyone else spent their evenings readying themselves for a night on the town, I made sure I had enough time to rest before getting dressed. When I entered the working world, early bedtimes became a staple, and I turned down more than one fun day out on the weekend because I knew I needed to conserve my energy for the week to come.

When I was finally diagnosed with Lyme disease, the reason for this inherent need for sleep finally became clear to my family and friends, though there are still days when they struggle to understand why I can’t accept their invitation for a spontaneous night out. Even now, they’ll send me cute memes and funny cartoons about napping, and I’ll laugh along with them because it is cute and it is funny, and I’m grateful to have my sense of humor back. But sometimes I wonder if they will ever really understand that this is a need, not a choice. I’d never choose sleep over friends.

I’d never choose this life with Lyme.

I wish more than anything I had the energy to be a part of the world like I want to be. I’d spend my time with friends and family and be the mom to my dogs that I want to be. I’d visit museums and attend concerts and travel to places near and far. I’d provide for myself, I’d be independent again.

I’ve been lucky in my life that I’ve been able to do so much despite this illness, but that’s what makes it that much more difficult: knowing what I was capable of before, knowing how limited I am now, knowing how much more of the world I still want to experience.

So I’ll finish writing this essay and make myself some lunch. Then I’ll play with the dogs or finish some chores until I notice my energy beginning to drain. I’ll wander to the couch and lie down and close my eyes.

And when I sleep, I’ll dream of the day when I can do so much more.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Being Lyme Brave

by Susan Pogorzelski
#MyLymeLife

When you’re finally diagnosed with Lyme disease there’s a feeling of hope. That hope can turn to pain and desperation as new treatments induce Herxheimer reactions.

 

“Does she have Lyme disease?” I remember my dad asking as he, my mom and I sat in the tiny exam room of a small brick house three hours from home.

My face was ashen. All I wanted at the moment was to layer my legs with wet paper towels to keep them from burning; all I needed was a few minutes of sleep, even if it meant curling up on the crinkling paper of the exam table. My ears were buzzing and my heart was racing, but I gathered what little energy I had to turn to my new doctor, silently begging for some confirmation of our suspicions.

“Oh, yes,” he replied. “And at least one of the co-infections.” He reached for a paper outlining my new treatment plan while my parents and I exchanged relieved smiles. Tears welled in my mom’s eyes; I could see the weight visibly lift from my dad’s shoulders. At last, we had answers. At last, I could start on the road to recovery.

“It’s not going to be an easy journey,” my doctor warned gently. “You’re going to feel worse before you get better.”

I nodded and listened as he explained what he meant, but I didn’t care. All I could hear were those words: “You’re going to get better, you’re going to get better.”

* * *

I should have listened to my doctor. Or at least, tried to understand what he was telling me. But I was so eager to start medication, so eager to get betterto get my life backI didn’t care to consider what he meant by “worse.”

blog_mylymelife_brave_herx

I’d learned all about the Jarisch-Herxheimer reaction—where the Lyme bacteria release toxins during die-off that cause an inflammatory response, worsening symptoms—during my initial research of Lyme disease. But I didn’t fully realize what that meant.

The herx reactions started almost immediately after I began my cocktail of antibiotics. Where before the fatigue made it impossible to exert energy for long, now I was sleeping 18 hours or more a day, too tired to even lift my head from the pillow. Where the joint pain and muscle aches in my legs were once barely tolerable, now I woke up crying in the middle of the night, clinging to the walls as I made my way to the Epsom salt bath because I could barely walk. Where the physical sensations were unbearable, the neurological and psychological symptoms became tortuous.

My memory seemed to float away like dandelion seeds on the wind. I couldn’t remember the words for postage stamps (“that thing you put on envelopes”) or doorknobs (“you know, that thing you use to open a door”). When I saw my best friend in the grocery store parking lot, I thought she looked vaguely familiar, but I couldn’t remember her name, never mind what she meant to me. When I read, large passages of text blurred into blocks of letters that didn’t make sense, like a foreign language I’d never learned; I remembered what a stop sign meant only after I was through the (thankfully deserted) intersection.

It only worsened.

Depression turned to desperation. Anxiety became paranoia.

I was afraid to fall asleep, the nightmares becoming so vivid. I couldn’t tell the difference between what was real and what was just a dream, and I spent half the morning trying to calm my racing heart and remind myself that I was real and the rest was only a figment of my imagination. Anxiety poured into my waking life. On the rare day I was able to make it into work, I stood huddled in a corner of the elevator, frozen by inexplicable, irrational fear when a kindly-looking man stepped in after me. At night, every creak and groan of the house sent me into a panic. I had my dog, who’s always been quick to alert me whenever someone so much as passes on the other side of the street, but there wasn’t anything he could do to dispel the fear that paralyzed me.

blog_mylymelife_herx 2

The knowledge that another unavoidable herx cycle was just over the horizon kept me suspended in anxiety. As the days and weeks passed, I kept reminding myself that I was killing the germs, that I was, in fact, getting better. It was cold comfort, but I was grasping for comfort wherever I could.

For six months, I fought through the deluge of symptoms each herx brought on. I tried to calm my mind through meditation and distractions. I took Epsom salt baths twice a day, and I altered my diet according to the best detox methods. Eventually, the pain began to ease and the fatigue let up. Slowly, words returnedthere when I called for them—and though the nightmares lingered when I woke in the morning, I knew they were just fading dreams.

* * *

It took six months for those heavy herx reactions to abate. Even now, nearly five years and one relapse later, it’s hard to think about how I ever got through those days. When I relapsed, that same fear plagued me once again. I wondered if it would be that bad again, wondered if I could survive it a second time.

It was. And I did.

My herxes now seem mild in comparison: a few days recovering in bed, some muscle aches that are soothed with baths, words that still don’t come easily but aren’t lost completely. I recognize it now as the price to pay for eradicating the germs from the body—germs that desperately try to cling to their host with everything they’ve got, the herxes serving as one last moment of triumph, begging us to give up and give in.

We’re stronger than that. We’re stronger than the Lyme.

Looking back at what I went through those first six months, I’m reminded how brave we are for enduring such affliction, with only the scant knowledge that we’re getting better despite the pain to keep us going.

“It’s not going to be an easy journey,” I can still hear my doctor saying.

No. But we’ll be braver for it.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Trauma and Lyme Disease

by Susan Pogorzelski
#MyLymeLife

How could I compare my experiences with Lyme disease to those who had endured worse?

 

It’s taken me a long time to get to this point, to be able to admit that what I’ve been through in the face of this illness has been traumatic. The words “trauma” and “suffering” were always reserved for other people—people who faced unspeakable horrors, visibly fighting their demons with inconceivable bravery. How could I dare use those words when so many had been through so much more? How could I compare my experiences with this disease to those who had endured worse?

The truth is, Lyme disease is a traumatizing experience. From the initial diagnosis through recovery, it leaves its scars in a way few other illnesses do—invisible wounds from daily battles permeating our everyday life. I didn’t want to admit this. I wanted to get through recovery and move on. I thought I had, for a while.

When I went into remission after two and a half years of treatment, I was eager to move forward with my life, pursuing dreams with vigor and tackling challenges with ease now that I was presumably healthy. Slowly, those years of pain and fatigue, of isolation and loneliness, of questioning my own mortality and ability to survive passed into memory, becoming a part of my history. I had let it go; I had moved on, and I wasn’t looking back.

But then came the relapse, and with it returned all of the pain, uncertainty and old fear. Suddenly, I was facing again what I had fought so hard against, and I plunged back into depression, wondering if I would survive a second time. Back again was the familiar pain and the fatigue draining every ounce of energy from my body. Back again was the paranoia and anxiety. I couldn’t bear to leave my house. Back again was the knowledge that I had to keep fighting relentlessly for fear that I might succumb to this disease if I let up for just one second.

Hour after hour, day after day, year after year of fighting is enough to make anyone grow tired and weary, but the hardest part of Lyme disease is that it never relents. In the beginning, you’re fighting for a diagnosis among feelings of betrayal from the very doctors you entrusted to help save your life.  They question your symptoms, tell you it’s nothing more than a virus, pat you on the shoulder and tell you you’re just sensitive, and slowly you begin to wonder if maybe they’re right. Slowly, you begin to lose faith in the medical profession and, worse, in yourself.

blog_sue-pogo_trauma_lyme

When you finally do get your diagnosis, it’s like an oasis in the desert, and you’re so grateful to put a name to the enemy that has stolen moments from your life that you wear it like a badge of honor. Suddenly you want to scream, “Here’s proof! Look at what I’ve been through! Do you understand now?” But you’re met with blank stares and nonchalant anecdotes about that time your colleague’s aunt had Lyme and it wasn’t that bad. They question your character, spread rumors that you’re not really that sick, and you fight for your reputation and livelihood, at the same time desperately trying to build awareness for a disease so few understand, so someone can finally understand you.

Then comes treatment and recovery, the biggest battle of all. Every single minute is a fight for your life, and you never feel safe because you’re always gearing up for another battle as you struggle against this invisible enemy inside you. This enemy which has slowly drained you, stealing moments and breaths until there’s hardly anything left and you feel like you’re only existing, not living.

That’s how the relapse broke me. I couldn’t relax because I never felt safe. I couldn’t have fun because I’d forgotten how. I couldn’t look too far ahead because I feared I would always be one step away from being that sick again. I felt shattered by these years of suffering, plagued by a fear that it wouldn’t end.

Lyme disease is traumatizing to the mind and spirit, especially when you suffer for so long. Day in and day out, we live with a disease that does its best to bring us down, and every second, we’re fighting to survive. Even when we get a break, even if we reach remission, the memory of this fight is still there in the back of our minds—a knowledge that any minute we might have to arm ourselves with renewed strength, renewed courage, and fight again.

In the year since my relapse, I’ve had to face this fear for what it is: trauma due to the many nuances of this illness. I’ve had to admit to myself that what I’ve been through—what every Lyme patient goes through—is a war of a different kind, leaving behind its own invisible scars.

Like any trauma, it takes time to heal. Like any struggle, it can transform us into something more positive, if we let it. Because the good thing about scars is they show us where the cracks in our armor are, and our experiences help us fill them up with something stronger, someone new.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.


 

quest-for-test_donate_banner

Dream Like New

by Susan Pogorzelski
#MyLymeLife

I used to revel in the thought of living in solitude like Thoreau at Walden Pond. A cabin nestled between pines, a farm sprawling across a dozen acres, a cottage by the beach—I imagined these places bringing peace and comfort and a quietude that is rare these days, among the go-go-go rush for something—anything—so long as it looks like living.

But certain kinds of silence breed loneliness, and loneliness will drive you mad.

Right now, my life is divided into before and after, then and now. Before I was sick and after. Then, when I fought this disease for three years, and now, when it’s already been a full year since I relapsed after only a few months in remission. Before, I got through it with the help of family and friends and my pets, a job to return to, and a dream to pursue. Now, while I’m still so grateful to have my family, my friends, and the unwavering companionship of my dogs—please don’t ever mistake these thoughts for ingratitude—I’m having trouble coping with the isolation and loneliness that stems from living with Lyme disease.

I can’t do much more right now than bide my time until the fatigue sets back in and I have to close my eyes. When I write, I’m able to put down a few sentences at a time before the words get muddled in my mind and the fog becomes too thick. Short walks let me bask in the fading summer sun, but it isn’t long before the pain in my legs make me grow weak, and I have to rest again.

I hear kids’ sneakers slapping against the pavement as they run up and down the alleyway behind my house, hear women chatting with giggles in their voices as they power-walk past my open windows, hear my neighbors on the porch in a symphonic blend of togetherness, and I want to be a part of it—I want to be a part of the world. Outside life slips through the cracks beneath the door, and it only takes a second before I realize how lonely I am within.

Social media gives me an outlet—a chance to catch up and be with friends when I’m limited in where I can go—but I see pictures of vacations and posts about projects they’re working on and where they’re going, and I want to cry.

Because I can’t go anywhere but here, and here doesn’t feel like anywhere.

But I’m too numb to cry, so I let the envy fester beneath the surface and mix that with self-loathing for not living a life that’s supposed to be precious in the first place and add it to the guilt of being too sick to be a part of anything. I become a cocktail of loneliness while the darkness wraps a blanket around me like it’s some kind of comfort, whispering, there, there, stay here with me.

I don’t know what I’m supposed to be doing. Everyone says I should only concentrate on getting better right now—it’s the line I fed myself to assuage the guilt of not being able to work—but it doesn’t feel like enough.

cant-go-anywhere

I’ve spent the majority of my life ill, and still I pushed through it. I went to college and traveled and worked so hard to create a future for myself, to pursue a dream, to build a career, and to define my own success. When I was finally diagnosed, all through treatment I relied on the knowledge that one day I would be better and could live my life at full-throttle. Everything I had worked for, I believed, could be realized when I was healthy again. It’s what kept me going—knowing that hard work pays off.

That was then. Now, this relapse has flung me back into the darkness of this illness, where everything I worked for seems to have slipped away once more. I want to keep fighting. I want to pick up the pieces and put them back together again, to keep working harder, but I’m so tired.

I’m so tired.

I don’t know what I should be working for anymore. Every day, I spend an hour between naps plugging away at my writing because I would drown without a place to put these words. Every day, I work at creating some semblance of a future for myself when I don’t know if the dream is worth the fight and the fatigue. Most days, I question what the dream even is anymore, wondering if even that has faded.

I can’t bear my days like this. This idleness means I’m only existing when I want to be out there, living. But I remain limited, trapped, wrapped up in this illness and the mix of emotions that accompanies it, even as I continue to get better. Even as my spirit grows stronger than it’s ever been before.

I don’t know what my future has in store now. For the first time in my life, there is no plan. What I could once envision so clearly is now an echo of the life I wanted. But I’ll keep waiting. I’ll keep fighting. I’ll put those other dreams to rest for now and concentrate on the only one that matters:

To live.


 

Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.