Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed.
I have late-stage Lyme Disease, multiple co-infections (Babeisiosis, Bartonella, Mycoplasma), other associated parasitic/bacterial conditions.
Associated conditions/symptoms: Chronic daily intractable headache/migraine, chronic pain syndrome, fibromyalgia, chronic fatigue syndrome, auto-immune issues, heavy metal toxicity, adrenal dysfunction, depression, anxiety.
I tag all of my writings/rantings/etc about my illness, they can be found here: http://sicksexysnarky.com/tagged/take-these-broken-wings-and-learn-to-fly
Why you write – tell us a little bit about why you write about your health online and what got you started.
Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?
I write about my health online because I write about EVERYTHING on my blog, SickSexySnarky. Illness is a huge part of my life, so naturally I chronicle a great deal of blog posts about what it’s like to be constantly sick, in treatment, and in pain. It impacts every part of my life.
But I write so that people in similar situations know that they are not alone. I am first to admit I’ve had a complete meltdown because I forgot the words to my favorite song once. I’ve been so angry that I am trapped in my body that I once punched my garage door (bad idea) and cried for an hour. I’ve been told over and over again that my life will never be without pain, exhaustion, and discomfort.
And I write to make sure that readers know that you CAN be sick and happy. You can laugh when you’re in pain. You can fall in love, even when you feel broken. There is so much out there to be experienced and dealing with health issues doesn’t have to stop us.
I don’t remember life without pain, so most days it is hard to miss it.
today’s not most days.
today I can’t even pass as healthy. and fuck, I don’t even care to try. I am reminded that infection still holds my cells captive and my heart pumps contaminated blood to every nook and cranny of my body.
I don’t know why I’m writing this.
I have no idea how my body has withstood this pain for so long.
it’s hard to put down in words what it feels like being sick and having no fucking idea when you’re going to get better. but I’ll try, just because
it’s like having a gun pressed to your temple, but you never know when it’s going to fire. it’s like standing with your toes on the edge of your grave, just waiting for something to push you in. it’s like lighting a match but having no candle to light with it.
or, more poetically: THIS IS FUCKING RIDICULOUS WHY CAN’T I JUST HAVE MY GODDAMN LIFE BACK?!
you choose. they’re pretty much the same.
but thank god I don’t have cancer! That’d be tragic. Having a goddamn diagnosis and doctors who knew what was wrong and the support of your community. THANK GOD. Most people would say I shouldn’t even be writing this blog entry because I don’t have cancer. Like it’s the fucking Sick Olympics and I didn’t qualify. Got cancer? You’re in. AIDS? You’re in. Infectious disease that kills me inch by inch, every day? Nah. “She doesn’t even look sick!”
This time of year, I truly believed I was done with Lyme for good.
I’d give anything to go back. In fact, I’d give anything to go anywhere else besides this infection riddled body. I’m that frustrated.
You can call me ungrateful, you can call me a bitch, you can call me a liar for saying what I do, but ask anybody with chronic illness and they’ll all say the same thing:
This is hell.
trade me bodies for a while?
I just want a minute to think without this splitting pain pulsing across my body.
only a minute though. I promise I’ll give it back after.
I wouldn’t wish my infected cells on anybody.
I’m not quite that angry yet.
but give it time, a couple more years spent sitting in clinics and sterile fields, with a tourniquet tied around my arm, and who knows?
Sometimes I’m glad to feel angry though. It’s better than empty.
Reminds me that I’m still alive, somehow.
I’ve been sick for four years.
I’m nineteen years old.
Sorry for acting my age for once.
I’ll do better next time.
Being back in treatment stirs up a lot of feelings. I’m a hot mess of feelings in normal situations, but this is almost too much at once.
I think back to the spring, when I thought I was finally, finally going to be well. I think back to falling in love with a boy who didn’t care if I was sick or not. I think back to New York and too-big dreams and my well-loved, soft as butter boots that I broke in while I was there.
I think back to the PICC line hanging out of my arm. Sometimes I reach for it, even after all these months with it gone. I think back to how my clothes used to fit and my body was starting to glow again. I think back to those moments where I didn’t even have to close my eyes to see the future I’d dreamed of, because it was right in front of me.
I miss it all.
I hope I can get it back.
I didn’t think I would make it to 19.
But I did.
My mother and I were talking in the car today, just discussing all the crazy, sad, happy, ridiculous year that I’ve had. Every single month of my 18th year held something special that, had I let this disease kill me, I would’ve missed.
January: I found out that I got into a Manhattan Clinic to treat Lyme Disease, just a week after my doctor here had said to me “I don’t know what to do with you. You’re too sick for me.”
February: I stepped foot in New York. It was the most beautiful feeling, even when I was so sick and miserable and exhausted from treatment, to know that I had finally found my place in this world. It was a place that my dreams would never outgrow. I saw Broadway shows and sat in coffee shops and broke in my new pair of boots and cried on a near daily basis because I was so happy.
March: As I continued treatment, I got to explore New York, which I realize now was more about exploring myself. That’s an awful sentence and it pains me to write it, but it’s true. My mom said that the spark came back in my eyes and I started writing again and I thought to myself, “You can have this. All of this.”
April: Two things happened that are most certainly noteworthy.
June: I got to spend the summer, healing, and running around to hang out with all the friends that I knew would leave for college soon. I rode Wick’s moped (that’s not an innuendo, people), I wrote constantly, discovered the miracle that is iced coffee, and I finally felt young again.
July: I relapsed. Badly. The best part? I didn’t die.
August: I met an amazing girl named Allie, who reached out to me through my blog when she read I was really struggling with my relapse. Little did we know, as we began chatting about tattoos and food and boys and more foods, that fate had much bigger plans for bringing us together.
September: Open Ears, Open Arms began to come together. Allie and I realized that if we could help each other just by reaching out through a simple blog, we could help so many others the same way. That blog, no matter, how lame you may think I am, changed me in so many ways.
October: I manned up and asked out the cute boy at Whole Foods. Defying gender norms, as Emily put it. I also studied my ass off and got a 31 on my first ACT.
November: I stayed out till 6AM and hung out with a bunch of friends in Sam’s basement. We spent too much time on the internet and Photobooth and drank coffee when we should’ve gone to bed and played Truth or Truth and it was the very essence of youth. I was later chewed out by my father and chastised by my mother, but I felt like a real teenager for a few minutes and it was terribly satisfying.
December: I made it to my 19th birthday.
I’m an infinite part of the universe, a teeny tiny speck of a human, but I could never be replaced.
Not even by Beyonce, despite our obvious similarities and talents (and awesome legs).
I can feel my body just quitting. It’s almost like it’s speaking to me.
Stop chasing and start trying to live.
My mother says I look like a corpse. She’s close.
A broken spirit walking around in a broken body, that’s what I am. Quivering chin and twitching fingers and glass-sharp joints and wrenching head pain and the constant reminder that my cells, the very essence of my flesh, house bacteria that are tearing me, bit by bit into a shadow of a girl who used to be able to punt a soccer ball clear down the field.
And I know that this is a terrible way to think and that I should work harder at being positive, but I have never been so depressed and anxious and uncomfortable in my entire life. It consumes me and I feel it ripping my heart (that silly heart that just a few years ago used to dream for scholarships and first kisses instead of ache for an escape from her own chest).
I keep saying, over and over: I’m trying. I’ll do better. I’m trying my hardest.
I lie awake at night, trying to imagine the bacteria dying. Visualization, they call it. But all I see is infection, creeping into every crevice of my being, and New York is further away each night.
Someone sent this to my lovely friend Leigh and she let me respond to it.
Hello there, numbskull.
This is not Leigh speaking, but her friend Haley. Leigh is too nice to say what I am about to say. She’s lovely and kind and beautiful, whereas I am a raging bitch with little to no brain to keyboard filter.
I also have Lyme and quite frankly, I would be delighted to respond to your hurtful, ignorant, offensive, and just plain stupid note that you left my lovely friend. If you have anything to say after reading this, direct your bullshit my way.
First of all, why the hell does everyone compare every other illness to CANCER? Only cancer. Literally, you aren’t considered sick if you don’t have cancer. I’m not even speaking just about Lyme: there are hundreds of other sufferers of chronic, untreatable, and/or terminal illness that don’t have cancer, and yet by your account, they aren’t “actually sick”. Here’s a first hand account of a woman who has had both Lyme and cancer and says that cancer “pales in comparison” to the suffering of Lyme.
Secondly, LEIGH HAS A GODDAMN PORT IN HER CHEST YOU IGNORANT ASS.
The same thing that “they cut open all the time and put medicine in”. If you’re going to harass someone on their blog, at least do your research so you don’t come off looking like an even bigger asshole.
Thirdly, this is the Internet. Leigh is perfectly entitled to chronicle her battle with this disease through whatever medium she pleases. “You can’t complain” is literally the most ridiculous quote of your note. If Leigh can’t complain, that also means that you can’t complain when you’ve got the flu, because you don’t have cancer. It means you can’t bitch when you have a yeast infection or an STD or acne. Because according to you, only people with cancer are allowed to complain and discuss their lives openly on their own personal blog.
Fourthly, being sick has nothing to do with the holidays. Whether you have cancer or Lyme, you are sick 24/7. There are less than ten major holidays in a year. What about the other 355 days? Isn’t it just as bad to be sick then? Hm, seems like you only give a shit 10 days out of the year.
Fifthly, (I’m on a roll now.) I’m going to be really, really honest. There have been many times when I wished I had cancer. I’ve gotten a lot of flack for saying that, but it’s true. Because if you get cancer (apparently, the only serious disease in the entire universe) people come rushing in to help you, support you, love you. Doctors will treat you, or at least tell you how long you have left. You get ribbons and Make A Wish’s and charity walks and meals brought to your house and all sorts of, to quote John Green’sThe Fault in Our Stars “cancer perks”. Also, insurance covers your treatment! Wow, that’s a big help too.
When you have Lyme, people leave. They think you’re crazy, a liar, a fake, a hypochondriac…whatever. And you’re left with the few precious people that know how real your pain is. I’ve lost countless friends, half of my neighborhood doesn’t speak to me because they pretty much think what you do, and I’ve been mocked/rejected/ignored/patronized/looked over (as have most other Lyme patients) by dozens of doctors.
Lyme is a slow, agonizing, painful death. In fact, my liver and kidneys will fail within three years without treatment. I’d be dead before I turned 22. The majority of people don’t even make it to the end stage of Lyme because the pain is so horrific, they end up committing suicide. Think about that for a moment.
Leigh has a port in her chest. I’ve had two PICC lines in my arm that pump medication into my arm and I will probably end up with a third.
“Gee whiz, there’s tubes hanging out of my arm! WOW. It’s so fun faking to be sick. I can feel the tube all the way up into the tip of my heart. So cool.”
Leigh and I have had more needles in our bodies than an entire pharmacy could hold. We’re in serious treatment too, just like the girl with brain cancer. The only difference is that people are going out of their way to support that girl, while people like you are harassing Lyme patients anonymously.
Leigh is one of the kindest, most loving people I have ever have the pleasure to know. She spends her time (while sick) working with children with disabilities (oh, what a horrible human being she is! trying to make their lives better). She supports me and many other people, regardless of situation. She is an angel, and I mean that in the most literal sense of the word. So for you to come onto her blog, her personal space, and leave her that note infuriates me. If you have anything else to say, you can reach me here.
I’d like to conclude this lovely response by applauding your holiday spirit. Leaving anonymous hate in someone’s online mailbox? Aren’t you festive!? I shudder to think about the Christmas cards you will send out. Maybe you’ll be brave enough to sign them out with your real name.
To conclude, with her (trembling, arthritic) middle finger pointed directly at you,
PS Sending a message anonymously seems pretty fake, doesn’t it? Come out and challenge me to my face. I dare you.
I just don’t know how much longer I can do this.
I know that’s not the inspirational “I’m just staying positive” bullshit that I’m constantly spewing at people, but it’s the truth.
I’m tired. I’m angry. I’m lonely. I’m afraid. I’m depressed. I’m in constant (that means ALWAYS, 24/7) pain, and I’m sicker than I ever imagined I could possibly become.
Sorry to disappoint anybody who thought I had my shit together.
I can’t write, I can’t eat, I can’t sleep, I can’t stand to be in my own house. The most worrisome being that I can’t write.
I’m just so tired.
And this isn’t a tired that means, “You know, I could use a nap” or “That was a ass-kicking workout”, this isn’t even, “I’ve had a hellish week at work.”
This is tired that seeped into every pore of my body and has wrung its claws around my heart and laughed, because it must enjoy watching me drown in my own goddamn life. This is tired that has scarred my body and distorted my cells and poked fun at every silly dream or teenage desire or fucking wish at 11:11 that I’ve ever allowed myself to indulge in. This is tired that makes me lie in the supermarket when my mother’s friend remarks that “I look so good! Are you hanging in there?”, to which I say, “Things are hard, but they’ll get better! I’m staying positive.”
The truth is, I’m a liar. I’ve lied myself through this ridiculous illness, keeping my shit together and my clothes matching and my fake positive attitude on my sleeve, ready to whip out at a moment’s notice. I lie to survive, because when I step back and take a look at the past four years, I feel like I could crumble into nothing.
And I always want to apologize. Sorry I’m not healthy. Sorry I have to lie to make it through the day. Sorry that I’m not that golden child anymore. (Believe me, I miss her as much as you do). Sorry that I can’t hold myself together when I lay down at night and feel the infection eating away at me.
I close my eyes and wonder what New York looks like tonight.
I’ll bet it’s beautiful.