This poem was written by my teenage daughter. Any parent with Chronic Lyme Disease knows how hard it is to hide the pain, day in and day out. You want to shield your children….but then the tremors, the weight loss, hospital admissions…all become your new normal. As much as it hurt to have them ever witness such suffering, it would have hurt them most if I had given up. There will be a second poem one day, about coming through the other side. I was as sick as one can get with this insidious disease, knocking on deaths door for too long….now I am reemerging, and I want everyone reading this to know, that although it may be sad…there truly is hope. Reach out to others in the Lyme community, and connect with those who truly get it…all of it.

 

Disease

by Emily Rain

She was a mountain,

She stood taller than the highest skyscraper

Letting nothing get in her way

Now she is among the stones and pebbles that lie beneath your feet.

She was a hurricane

More powerful than anything you’d ever seen

She made everything seem effortless

Now, she’s only a gust of wind

She was a diamond in the ruff,

Stunning and gleaming so bright

Anyone in her presence was blessed

Until it all changed

In a matter of time, she had transformed into somebody entirely different

The number on the scale decreasing more and more

If she attempts to walk across the street, her knees shake, bringing her to the ground

The nights without sleep are unbearable

Her body shakes, it’s unstoppable 

She’s now unrecognizable.

She sits alone in a room where medical supplies cover the floor she walks on

Never thought she’d end up this way

No.

Never thought that tiny bugs would invade her brain,

controlling every waking moment of her day

No.

She’s no longer seen as the one she once was

Nor do they treat her how they once had

Pity and sympathy seep through their pores regardless if they truly understand her suffering

It’s almost as if she’s submerged under water

Wrists and ankles chained to the ocean floor

Forcing her to struggle without a breath of fresh air

Struggle at breaking free

Struggle at being herself again

She’s helplessly falling deeper and deeper into an abyss

Slowly,

Unknowingly,

Still yet to hit bottom

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Well, I had hit bottom, and each time I thought it could never get worse…it did. But just as suddenly as this disease rendered me disabled, slowly, but then all at once……my recovery is very similar. I began seeing glimmers of hope in October, 2014. In February, 2015, my immune system kicked in, and I had my first true fever in 3 years. It is now May, and since February, I slowly stopped needing my wheelchair, I no longer take 3 blood pressure medications daily…I don’t take any! My POTS is SO much better, I haven’t had tremors since late October, and I recently began driving and spending more time up and about, then down and out. If you read my full story in the main menu, you will see that I was hit with far more than just Lyme Disease. Believe me, I know having Lyme alone is enough to bring you to your knees, so if I can get to the other side…..anyone can. Besides my husband, children, best friend, only a couple family members, and my online community of fellow fighters….I had no ‘physical’ support. My husband had to suddenly take on every single thing I once did, on top of working, and being a father. He was my caretaker, my rock. I could no longer cook meals, drive, go grocery shopping, run errands, mow the lawn, weed the garden, walk the dog, vacuum, do dishes, or even wash my own hair at times…..he took on everything. The true heroes in my story…..are my husband and children. They sacrificed three years of their lives, to keep me as comfortable as they could. They did it without complaining, and so selflessly adapted their lives to be with me. I will be forever grateful for them, and anyone that showed me such kindness through such a dark period.

I can only hope that this website will continue to give some hope to those that are desperately searching for some. I assure you…you are stronger than this disease, whether you know it now or not…..you are.

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This article has 2 Comments

  1. Reading your poem really hit home for me. I have always relied on myself, and only myself, to get things done. I have valued my worth in my abilities to do things that most women do not. I was raised to be capable of doing anything, even a “man’s job”, if it meant me being able to provide for myself and my children. I have always been very proud of my ability to do such things. I never dreamed that I would wake up one day I never dreamed that I would wake up one I never dreamed that I would wake up one day and never I never dreamed that I would wake up one day and be sick and never get better. I was diagnosed with multiple sclerosis in December of 2015. At that time I had 22 lesions on my brain and underwent almost a year of injections of rebif for the MS. After becoming extremely ill and had accepted the fact that I was probably going to die soon because I was in so much pain, I sought a second opinion. After seeing a neurologist that specializes in multiple sclerosis at UAB in Alabama, he all of my lesions were not typical for multiple sclerosis. He being tested me for Lyme disease and I tested positive for for bands. Shortly after that in March of 2017 I went to another doctor that he recommended and had a PICC line inserted and underwent 4 weeks of treatment with 5 grams of Rocephin a day. during the treatment I felt better than I had in years. But having not had a tick bite in years, it was determined that I had chronic late-stage lyme disease and the lesions on my brain were from that as well as my joint pain, fatigue, cognitive issues and the inability to find treatment that worked for my bipolar disorder. I was told by this infectious diseases doctor that I would always have Lyme disease even after treatment and I would suffer from that. however, after having the PICC line taken out I had another blood test for Lyme. This test was pretty much demanded by me because the doctor did not think it was necessary. In her word she said I was cured after telling me that I would always have it. Of course this test came back negative because I had just had four weeks of major antibiotic treatment and the antibodies weren’t there to show up on the test.
    Since then I have just been suffering get through day-to-day and am unable to find a doctor that will treat me or is knowledgeable enough to treat chronic late-stage lyme disease. Just wanted to say thank you for being a positive in a world of negative when it comes to Lyme disease. I also want to let you know that I admire the fact that you are strong enough emotionally and mentally and physically to have a website like this to get the word out about a disease that nobody thinks is real

    1. Thank you for this beautiful message. I hope this finds you well! I have had quite a journey, and have found even more answers. If you’d like, I have a Facebook group called PATHWAYS that I hope you’ll join to learn more (if needed). Best wishes.- Steph

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