I lost my heart today.
I lost my heart today.
I dreamed a dream in time gone by
When hope was high
And life worth living
I dreamed that love would never die
I dreamed that God would be forgiving
Then I was young and unafraid
And dreams were made and used and wasted
There was no ransom to be paid
No song unsung, no wine untasted
But the tigers come at night
With their voices soft as thunder
As they tear your hope apart
As they turn your dream to shame…
So I know some of my friends are on here, and I just wanted to give an update because I, once again, know that I have fallen deep into a hole of pretty much not talking to anyone, or seeing anyone. But I’m doing pretty poorly health wise. I have been since the end of December. The absolute worst I’ve been to date, in my whole life. The hair falling out crap was honestly nothing compared to how I feel now. I’d rather have no hair all day, every day, than feel the way I feel. I honestly feel like I’m dying. I know it sounds dramatic, but I started having heart issues at the end of December. I was in the ER every night for something they call “panic attacks” but my heart rate, my little, always calm heart rate, likes to randomly shoot up to 130, and my resting is an average of 90-100 now. It’s really bad. My family, boyfriend, boyfriend’s family, are all convinced of it being lyme. I know the lyme is probably a big part of it, but I also think I have lupus on top of this. My rheum thinks so too. I have a lot of lupus like positives on my bloodwork. But then again, lyme is the great mimicker and who knows if it’s just that. It probably is just really severe lyme that has been grossly mistreated for the … 20 years that I’ve had it. Yeah. My mom told me I was four when I was first bit. Then I was bit again. Repeatedly. The aches and pains suck, but the heart is the worst, and the anxiety aspect of it. I’ve never felt anything like it. And the hair is still falling out, on top of my skin really burning. I tried doing amoxicillin last week then biaxin on top of it for a staph infection… and I’m terrified because ever since I took the bactrim my skin has been on fire. Like my scalp, when it used to burn. I’m scared. I was doing okay before I added the bactrim. Now I’m scared it’s gonna do me in. I have no idea anymore. I’m seeing an infectious disease doc either next week or the week after for lyme. They say he treats with IV antibiotics. I really don’t know how my body is going to react to anything anymore since I really really can’t take sulfur drugs apparently. I’m hoping that this doesn’t turn into something worse like SJS. I can deal with neuropathy to an extent, blistering peeling life threatening skin conditions, not so much. And you know? If I wasn’t so afraid every single second of every day that each minute was my last, I would be able to deal with this a lot better. Everyone dies. Of that I know. No one escapes it. I just didn’t want to be 24 and dead. Not on my to-do list. But I guess none of us can really choose when or how we go. I’m trying everything I can to prevent something bad from happening to me. I’m trying so hard, and I want everyone to know that no matter what happens, I am trying. As hard as I can. I’m trying to be brave. As best as I can. I want everyone to know that I love them so incredibly much and that I love my life so much. Yesterday, I managed to feel okay and had an amazing day. It was nothing anyone would consider super special, but, my car was in the shop. It needed a ball joint on top of what it was already in there for. I couldn’t afford it, but it was unsafe to drive without it. So my boyfriend bailed me out with the money, took me out to mini lunch in town while my car was being fixed, I bought him a filet mignon for dinner, watched a little bit of WALL-E with him and Ayden, and damn, I was happy. I love him so much, both of them. He is my world. We’ve done so, so many amazing things together. He keeps telling me we will do more, I will get better. I want to believe it so bad, but I have such a hard time. I can’t explain to anyone how bad this feels. I love being alive, but sometimes, it’s so hard, I feel suicidal. This disease has really messed with my head, more than anything. I can find temporary relief (and I wouldn’t even call it relief) at best with Ativan. I’m also trying to gain weight. That’s pretty much my goal. And I need to be a little more active. I’ve pretty much been bedridden since Christmas. What else can I do? I can’t trust doctors, I don’t trust them. They tell me I have lyme (which I think is the root of all my evil on top of the fact that I’ve taken accutane and had guardasil), they tell me I have lupus, they tell me I have bad anxiety… well yes, this illness has destroyed my mind. I wasted so much time, energy, lost so much weight worrying about my hair when all the while my body was wholly falling apart. And I KNEW it. And all I wanted was my hair. How stupid. My health was suffering then, and now it’s practically destroyed now. Right now my hands and feet burn. I feel really out of it, my chest feels funny, like at any moment my heart will give out. I want it to go away so badly. I want this to be fixed so badly. But wishing never made anything so, and I know that. I just want everyone to know what’s going on, and I want to say I’m sorry to everyone for being a crappy friend. I’ve been so sick with this for years. It’s not that I never cared. Or wanted to go out all the time with you. Or wanted to not be such a flake. It’s funny though. How when you think you are so close to death every day you have time to reflect on everything and think about everyone and when I cry I think to myself… how genuinely grateful am I for 24 years of amazing life. I am so SO grateful. And if I don’t get better, I think, I’m SO happy I did all that I did when I did it. And most of all, I met the love of my life. And everything was wonderful. I am so in love. And I’ve done so many amazing things, have had so many amazing memories, have had the best family one could hope for - how can I be anything but grateful? Being this ill makes you treasure each day. Little things. Petting my cat. Seeing Nesta, old, struggling, but still going. Going for drives (which thankfully put me at ease). Sunrise through the window in the morning. My arms wrapped around my love at night. Oh man. What a beautiful, beautiful place this earth is! Truly! I only hope I can stay a little longer, or that which is next is even more beautiful.
I will write when I can, if I can, and if anything changes.
I really do love you all. Thank you for everything.
“Extinguish my eyes, I’ll go on seeing you.
Seal my ears, I’ll go on hearing you.
And without feet I can make my way to you,
without a mouth I can swear your name.
Break off my arms, I’ll take hold of you
with my heart as with a hand.
Stop my heart, and my brain will start to beat.
And if you consume my brain with fire,
I’ll feel you burn in every drop of my blood.”
This is possibly the most beautiful thing I’ve read in a while.
I love you, Andrew Connington. Always and always.
To die will be an awfully big adventure.