posted
I submitted this paper to the Newsweek folks..I hope that as more of us send our stories to them, they'll pay more attention to our collective voices!
My Turn
I no longer remember what it feels like to live without pain. Since January 21, 2005, Lyme Disease has attacked, in turn, my heart, my gut, pancreas, and my brain.
Remnants of the disease remain with me even now--the corpses of spirochetes still float through my veins, remnants of the parasitic bacteria that inhabited my nervous system and brain. Borrelia burgdorferi (the scientific name for Lyme bacteria) lay siege to my body for well over a year, producing devastating effects and opening the door to opportunistic co-infections like Babesia, a malaria-like tick-borne infection, due to my long-compromised immune system.
I had such a high titer (accumulation of spirochetes and cysts in my veins) that my blood became so coagulated as to threaten my life. I was on intravenous blood thinners during my nine months of antibiotic therapy.
Before and during my treatment, I accumulated an encyclopedia's worth of symptoms and a kitchen cabinet full of pills. In the nine months between Easter of 2005 and January 2006, I practically lived at my IV clinic, spending more than six hours a day in the same maroon plastic-coated chair, knocked out from exhaustion. Sleep was my savior, because during the short span of my waking hours, life was hellish.
The slightest touch on my skin sent waves of seething pain through my already aching and tired body. The most anguish I felt during my ordeal did not stem from the endless agonies from my body; nor from the exhaustive battery of tests, needles, and procedures I was put through; nor, even, from the too-constant feeling of danger stemming from some organ trouble or another.
My anguish stemmed from my brain fog, and from other neurological symptoms that left me feeling so helpless and weak. Brain fog can best be described as what you feel while standing in the garage looking at the car and wondering why you're there.
Most of us have had such memory lapses, but imagine if your world consisted of such lapses alone: buying a new remote after throwing the old one away one more time than you found it, or staring at a piece of broccoli--knowing that you know its name but unable to figure it out. It's the most frustrating condition.
Luckily, I found a neurologist willing to help me with my brain problems: aside from the brain fog, I also suffered from almost-daily audio and visual hallucinations. In addition, I experienced weird electrical seizures in my head and arms.
Although my neurologist didn't completely understand Lyme Disease (an ignorance common in many the doctors I've encountered), he was willing to treat my symptoms as well as conduct a thorough investigation of my brain, through MRI's, SPECT scans, and a spinal tap. With perseverance, we eventually discovered the cause of my brain woes: irregular seizures in my temporal lobe. I now take anti-seizure pills along with my other medications.
However, thanks to my doctor's stubborn perseverance, I no longer hallucinate and experience very few seizures. My brain fog has also decreased exponentially.
Now, not only is my brain back, but my mind is sharper than it's been for a long time. Before I got sick information was stored in my head similar to the way papers and books are stored in my room--scattered all over the place. Now it feels like my knowledge is organized in a filing cabinet, just waiting to be accessed.
I feel the repercussions of my disease every day, in every limb of my body and in my ever-present migraine. I mourn the time I lost in my oblivion, but I celebrate all that I've gained out of the experience. The little things I appreciate thanks to all that I've lost.
For instance, I will never forget the first time in two years I was able to swim again. I'd had three PICC lines (plastic IV tubes leading to my heart) while I was on IVs, and could not get them wet. The fresh wetness of the pool was so freeing for the skin that had known only gauze and tape for so long.
I've also gained an acute sense of compassion for people in similar situations as my own. I do my best to help them through the rough spots in their lives by relating to them from my spot in recovery. I am basking in the light at the end of my tunnel, and seek to share this warmth with other survivors.
-------------------- -Em
"Thank you, Oh Lord, for giving me the power to control my pain" Posts: 59 | From Missouri | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
GREAT job!!! VERY well done*)!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I do my best to help them through the rough spots in their lives by relating to them from my spot in recovery. I am basking in the light at the end of my tunnel, and seek to share this warmth with other survivors.
That will carry you a long way! Awesome letter!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
That was very moving and so well written!
Thank you for sharing it with us here.
I am so glad you feel so much better--inspiring. You were able to get so much jammed into a short essay there.
fantastic!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Bravo!
Very well done.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Very nice.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
WORD!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
em, fantastic job as others have said. i too thought your ending was so positive; a real motivator.. thanks for sharing this per my request.
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