Caught in the Lyme-Light (Part I)

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Caught in the Lyme-Light
Part I

A Lyme-Disease Story

 

I thought it was over when I had my gallbladder surgery. Two years complaining of pain in the same spot with no visible cause and many ER visits later, my doctors finally decided to remove it, despite all conventional testing pointing to it being a healthy organ. Outwardly, it was. But when the pathology report came back, it turned out to be an infected mess.

Optimistically, I thought this was the end of all my health troubles. I even believed this could explain the fatigue I’d felt for years — since my first of four bouts with “mono” back in 7th grade — before my doctors finally gave up and diagnosed me with Chronic Fatigue Syndrome. After all, this amount of pain causes undeniable stress; maybe I was just tired from dealing with it all. It made sense. And besides, it didn’t matter anymore, right? I was pain-free, with more energy and feeling more like my old self than I’d been in years.

 

With all of this in the past, I began to look towards the future: I bought a treadmill and starting a running program with a goal to run a 5K by the end of a year; I went on dates and socialized more with friends and began planning vacation getaways now that there was no pain and fatigue holding me back; most importantly, I began to move forward on a project that would see a lifelong dream come true.

But then the past decided it didn’t want to stay there. Then the future seemed a little further away.

Then it all went to hell.

Sure, fine. It’s just a little virus, I thought. Whatever, I would just rest and heal up and get back to it. And I did, for the most part. I ignored the increasing fatigue, the black spots that danced in my vision, the dizzy spells and lack of balance. I ignored the migraines and the tingling in my hands and feet, chalking it up to just stress, just my hands and feet falling asleep again. No big deal.

But it was a big deal. It became a bigger deal.

Driving home from dinner with a friend, down a major road lit by streetlamps and passing headlights, my vision wavered and I felt my head fall weak against the headrest. I pulled over to the side of the road and took stock of myself.

What the hell had just happened?

It was my first blackout,  thankfully minor and split-second short, considering I was driving. It wouldn’t be the last.

Stubbornly, I continued on, as best as I could, trying my hardest to maintain a sense of normalcy: I went to work and tried to take care of Riley and Mikey and the house, I kept up contact with friends and even tried moving forward to make a dream — something I’d spent the past four years on —  a reality. But I knew I couldn’t keep up with this, not when I could barely get out of bed in the morning, not when my mind was so foggy that I was having trouble recognizing one of my best friends.

Pleased To Meet You, Hope You Guess My Name

I tried to ignore the whispers of the symptoms and concentrate instead on how great I’d been feeling. But eventually, my body decided it didn’t like being ignored, and while I could have shrugged away the old, familiar signs, it was the new ones that scared the hell out of us. Another round of ER, doctor visits, and tests. Only this time, we’re not looking to treat just the symptoms. This time, we’re narrowing down the cause.

More ER visits, more specialists, more tests. I went to a Cardiologist and failed a Tilt-Table Test. More salt in your diet, they said. All the while, the list of symptoms became longer and more bizarre, and each time I called or went to my general practitioner with a new complaint, their doubt and reluctance to help seemed to grow.

I cried to my mom and dad. Was I going crazy?  Was I making all of this up?

The electric shocks running the length of my neck and into my shoulders and spine, the heart palpitations and air hunger, the stuttering and shuffling because my brain didn’t feel like it was connecting to my body,  making it difficult to speak, difficult to walk, when it took three whole minutes just to buckle my seatbelt because I couldn’t get my body to cooperate and move…

I wasn’t imagining this. I couldn’t be. Something was happening to my body, to my brain, to myself, and I was terrified.

And then:

I passed out at work. One minute, I was at the filing cabinet and the next I felt myself falling. If I weren’t so afraid, I maybe would have been embarrassed. But fear has a funny way of replacing all those thoughts, caring less about what others are thinking and merging into concern for your own well-being.

Hummingbird

I think, I can do this.

But then I can’t. Sometimes, it seems to take everything I have just to get out of bed.

Sometimes, it takes every last bit of effort just to make it to the front door.

I worked as much as I could during the days and spent the nights with my parents so they could take care of me. Driving was out of the question, as were simple tasks like cleaning my house and taking care of Riley and Mikey. At work, I could barely lift my hand to scribble my initials on documents, and the computer screen became blurry within minutes as fatigue and fog set in.

I cried. I cried from the fear and frustration of knowing there was something very wrong with me and not having answers; I cried from the burning pain that now ran the length of my legs; I cried from the feeling that I was about to lose everything that I had worked so hard for: my job and livelihood, my house — this home of healing; my reputation; my goals and dreams for a future that now didn’t seem like a future at all.

I prayed.

Are You There God?

Hi, God. It’s me, Susan.

I know it’s been awhile…

I prayed in writing. I prayed in silence. I prayed as my parents and I drove down to see a neurologist at Johns Hopkins, as I failed a balance test in his office, as he sent me for a brain MRI, as it came back negative. I prayed as he diagnosed me with migraines and Fibromayalgia.

I prayed in the middle of the night as Riley snored softly beside me, wondering how it was possible that, in three short months, I could have been diagnosed with six different disorders and syndromes: CFS, Migraines, Vitamin B-12 deficiency, Fibromayalgia, Neurally Mediated Hypotension, and Peripheral Neuropathy.

How could it be? How was it possible that these were separate issues and not symptoms themselves of one specific cause?

It wasn’t possible. Only, no one was willing to put the pieces together to help me find a solution, to save my life.

Keep searching, keep fighting… That voice whispered when I prayed for guidance, Trust yourself.

 And I did trust myself, my intuition that told me to keep searching, that this wasn’t the end. And so I Googled. The list of 30+ symptoms and my medical history sitting beside me, I Googled every combination I could think of, bypassing the usual symptom-checkers that have led me nowhere and instead scouring message boards for personal accounts similar to my own.

It all kept coming back around to one answer: Chronic Lyme Disease.

After doing more research, I called my General Practitioner and asked for the Western Blot test, as is recommended for its sensitivity. She refused and gave me the ELISA test, known for its inaccuracy, instead. I wasn’t surprised when the results came back negative.

But I didn’t give up. I ordered a lab kit from one of the leading testing facilities in the country to get my own Western Blot done, asking my neurologist to sign off on it. He, too, refused. If the ELISA came back negative, he emailed me back, there’s little chance that I would have Lyme. I knew by now that this was the standard answer from doctors who have little experience with Lyme Disease, knew from my reading and research and patients’ testimony that the medical field denies its existence and certainly won’t recognize how debilitating it is.

I wrote back that I respectfully appreciated his time, but that I would continue to pursue the matter on my own.

Then, I broke down in overwhelmed sobs.

 I was tired. I was tired of fighting for my life, seeking answers when there seemed to be none and looking for help from those I thought I could turn to only to be turned away.

“I give up,” I cried to my mom on the phone. “I don’t want to fight anymore.”

“Then I’ll fight for you,” she said.

That night, I prayed one last, final prayer.

The next day, I found my miracle.

I had posted to a message board, asking for the names and numbers of any Lyme-Literate physicians in my area, now aware of the political controversy surrounding this disease and knowing I’d need someone who understood it.

I found so much more.

I awoke to find that someone had answered me, and as I perused the list, my glance kept falling to one name. Trusting my intuition, as I always have, I dialed the number. An hour and a half later, I shed new tears…

Tears of relief. Tears of joy. Tears at finally having someone who recognized all of my symptoms, even the ones I hadn’t recognized myself — the nightmares and vivid dreams, the bouts of manic depression that just the summer before I had asked my mom if I should get checked out, the restless legs at night, the constant ringing and roaring in my ears. It was all related to Lyme Disease and what they believed I had to be a co-infection of Babesia.

They understood.

Of course they did, they’d been through it themselves — their entire family. And they would get me through it.

All those prayers had been answered.

I was almost there.

I just had to keep holding on…

 

Read: Part II

{ 3 comments… read them below or add one }

Denise Treven November 12, 2012

Thank you for sharing your journey!! My daughter has been fighting this disease for almost 2 years. So grateful that you are educating everyone and helping my daughter feel not so alone.

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Susan Pogorzelski November 13, 2012

Hi Denise,

I think one of the biggest struggles facing this disease is just how isolating and lonely it becomes. It’s a disease that should be on everyone’s tongues for how debilitating it is, but unfortunately so few people know about or are willing to understand it, and that only makes it worse and further isolates us.

Your daughter absolutely isn’t alone, and neither are you as a parent — I know that my own parents struggle with watching me go through this; I know it’s not easy for them, either. I’m always in this space or available by email at twentyorsomething@gmail.com if only to talk or to listen or to share experiences. Wishing you and your daughter health and healing…

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Roxie January 27, 2016

It’s always a pleasure to hear from someone with exsetripe.

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