I wonder if Taylor will ever notice my blog since I don’t have a 100% Swiftie fandom blog.
I mean, I blog and reblog so much about her, but I also write a lot about being sick and struggling with pain, plus my love stories and heartbreaks, and occasionally I just go HAM ON BROADWAY MUSICALS.
Honestly, I’m just ranting to keep myself from crying.
two nights ago, I had the worst pain that I could remember. I was in a hotel in Houston, after my final doctor’s appointment of my Texas trip, and a storm of biblical proportions rolled in.
I found myself drenched in sweat, body twitching uncontrollably, hunched over in the bathroom vomiting up anything and everything my body could possibly force out. The strain of throwing up just intensified the head pain and even with my cane, I could hardly make it back to bed. The room spun, I could hear my blood whooshing in my ears. Lying on the pillow was tortuous.
I felt entirely wrung out. How much more do I have to deteriorate before this is all over? Am I ever doing to wake up with less pain than the day before? Dear God, why are you doing this to my parents? They don’t deserve to watch this.
I had no answers.
The trip was largely unsuccessful. I saw a holistic dentist who said I may have displaced some discs in my skull when I had my accident. He didn’t see any cavitations (nor did the other doctor examining my mouth), so that surgery is a no for now. My jaw pain remains as mysterious as ever. He tried a series of injections, about 15, of sugar water (supposedly to make the nerves slide more cleaned through muscles) in my head, neck, and shoulders. He made me a new mouthpiece to wear at night, which I really like. Hopefully that will help me sleep! I am so exhausted. He also started me on new supplements. He believes I have a chicken pox infection ravaging my brain and body, oddly enough. That’s a long story. Maybe I’ll explain that later.
My aunt (with whom mom, Rachel, and I stayed for the majority of the trip) is close friends with a pediatrician, who I saw a number of times. She was deeply invested in my case. I had some complications that she helped me deal with. First, I developed a large lump around my lymph node in my armpit. A few days later, there was one in my other armpit as well. We tried to use heat to bring them more to the surface so she could lance them (TMI, sorry!!), but nothing helped. She said that I need a biopsy to be safe.
I’ve already written about the severe seizure I had and went to the hospital for. We don’t know what to do with you. If I had a dollar for every time I’ve heard that, I could make a serious dent in my medical bills.
In Houston, I saw an integrative medicine specialist who was supposed to test and examine my mouth for cavitations, but spent most of the appointment complaining about how much time it took her to go over my records (we paid her hourly rate, so I don’t understand why she had any right to complain!) and went into great depth in telling us how she thought my records should be organized. The only real information she provided was that I don’t have enough cavitations for surgery. Otherwise, she just made rude comments and did her best to make us feel small. I couldn’t believe I traveled all that way just to see her.
When the storm rolled in, I had officially had enough. I finally passed out from the pain and didn’t wake until morning.
I know that not everyone gets better. I’ve had a quarter of my life to learn that lesson. But I’m not accepting this pain and suffering. I’m not going to take anyone’s “get used to it” advice because I want more for myself than this. I don’t want to spend my life in bed, on a constant dose of painkillers, unable to read or write anything of substance.
Am I wrong? Should I accept the pain? How can anybody bear to do that?
For those who have inquired about my writing and why I haven’t been posting lately, please know that I will be back to normal soon. My depression (and seriously declining physical health) has taken a toll, to the point that even talking about life feels painful.
I know I’ll be okay. Just not right now.
it’s a shame that so many chronic pain sufferers like myself have come to dread the full moon, bringing increased symptoms, pain, and disability. not many people know that the cycles of the moon can be so medically powerful.
I pull more all-nighters than any college student, whether it’s caused by pain or insomnia or heartache, even. when I was 15, newly ill and painfully awake, I’d slip quietly out the front door and climb onto my mom’s car in the driveway. wrapped up in blankets but with bare feet, I’d lie back and stare up at the sky, head full of pain and unanswerable questions and a plethora of curse words. I’d gaze up, take in the subtle movement of the clouds, and listen to the stillness of my neighborhood.
some nights, I wondered if there was anyone else as terribly lost as me, doing the exact same thing. on the nights that I was speaking to God, I’d pray for him to send that person my way. there has to be somebody who needs me like I need them, I thought. I can’t be the only one.
other times, I felt mocked by our natural satellite-beautiful, full, complete, whole. it was everything that I wanted to be. as I grew into illness, I looked in the mirror and saw nothing full or beautiful about me: broken, broken, broken. I thought to myself, there is nothing whole about me anymore.
all I saw were the shards of my healthy self lying on the ground. It took years before it occurred to me that I should pick them up and keep them, no matter how much it hurt to do so.
nowadays, years into chronic pain and illness, the full moon confines me to my bed. I can’t climb quietly outside and gaze up anymore, but I can peer out from the window by my bed. I love the full moon, despite the pain it brings to me. life feels too big for me sometimes, a size-too-big sweater that hangs off my shoulders. it’s full of needles and “rate your pain” and IV scars on my arms.
feeling small is a pleasure that has taken me years to appreciate. for so long, I would walk through life desperate to leave a significant, indelible footprint on life. blazing through life and then berating myself when I ended up with chipped corners and frayed edges.
I’ve learned to let life envelop me. embrace the broken pieces of yourself, pick them up and keep them in your front pocket. they may be broken but they aren’t lost. you can be shattered into a thousand pieces but you’re still whole if you claim those shards as your own.
the moon, that perfect circular beauty comes and goes. most days it’s irregular and shadowed. some days we can’t see it at all. but we don’t question that it is still there, hidden and preparing to return to us.
the moon isn’t full every night.
that doesn’t mean any of us have to be either.
I am struggling so much right now, I can’t even begin to describe it. All thoughts, prayers, encouraging words, or good vibes would be infinitely appreciated.
I broke down and I am trying to put myself back together piece by piece, with little bits of bravery.
I’m beginning to wonder how much longer I can fight bacteria with simply bravery. In the past six weeks, nothing (not even Dr. Jernigan, renowned physician of the Hansa Center) has taken any of the pain away. It has increased threefold and I find myself closing my eyes everyday and wondering how much longer I can stay alive with just sheer “grit your teeth and bear it” guts. Infection has saturated my body with ammonia and now, at not even 20 years old, I am pre-ALS.
I’ve been at the Hansa center in Wichita, Kansas for three weeks now. After my first week, I was sent to California to have an immediate surgery to correct cerebrospinal and blood flow in my brain. But now all I have is a hole in my thigh from the catheter and pain in all my major veins, inside of which they inflated a balloon to widen and open them. All while I was still miserably 100% un-sedated and conscious.
I’m now back in treatment in Kansas, where I watch MS and Lyme patients miraculously get out of wheelchairs and praise Dr. Jernigan’s treatment every single day, while I watch and wonder why this world-renowned doctor can reverse paralysis…but not take away any of my pain.
The pain is 30% worse than it has ever been. This is the most terrified I have ever been. Please don’t get me wrong, I’m still fighting for my life with every ounce of my body and soul. I have not given up, nor will I ever. But lately, I have begun to question the sheer chemistry: how long can this last before my body quits on me? Before my heart can’t keep beating to the sound of my constant, repetitious mantra: “I am strong. I am fearless. I am not ready to die.”
John is scared as well. He dropped to his knees next to my bed, tears sliding down his sweet face, and he begged God to save me. That day I couldn’t get out of bed, paralyzed with pain, nor could I speak above a whisper. He prayed and he prayed, like nothing I have ever seen before, an outpouring of desperate “please don’t take her away from me” love. I saw true love right then, and God, and hope, and the true and utter definition of miracle, all reflected in his bright, watery green eyes looking up at me and our hands tangled together-mine weak and twitching, his strong and tight and warm.
Afterwards, I pulled him next to me in bed, slid under his arm and onto his chest like I always have. I promised that I wasn’t going to leave. I promised that I would fight with everything I had to stay. At that moment, and even many moments after, that promise remains my greatest strength. What a precious gift I’ve been given, this achingly beautiful, true and devoted soul that came into my life and had every reason to walk away, but stayed.
I promised that I would stay too.
I don’t know if love can kill bacteria or heal my battered body, but I do know that I am willing to carry this pain with me until I find the answer.
I am strong.
I am fearless.
I am not ready to die.
I have not lovey, romantic shit to write. I don’t have anything positive or inspirational to says. I don’t have pretty, meaningless words to string together on paper and pretend like I know anything about this crazy fucking world.
I don’t want to write.
It feels like the end. And what a shitty way to lose this battle—bleary-eyed, defeated, twitching…
Maybe tomorrow will be better. But I’ve been clinging to that hope for four years. I wonder if faith has an expiration date.
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.