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
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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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
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