My chronic illness, how it started.
*Can you guys please reblog and/or tag Taylor?? I really want her to read
this. I want this to get to her and I'll take any help I can get. I rarely ask this but it'd mean to world to me. I wanna get my story
out there (even if this is only a part of the entire story. The rest I
might post sometime if you guys want me too. I think I did include
everything I wanted to for now though). Just thank you all so much!!! I
love you all ❤*
(Im really sorry about how long this is. Its like a little novel. Plus I'm
OCD and tend to talk/rant until it feels just right... I just wanted to
share it with all of you, since its something I would've shared on TSL,
even though it'd probably be too long for there... But I wanted to share it
here because most of those swifties can be found on tumblr, and I want you
all to hear this... Maybe it'll even get to Taylor too. But please read if
you can. It'd mean a lot to me. Also I tried writing this but then it got
deleted when I tried posting it, so hopefully this one posts (I ended up trying to post this ALL DAY. I'm so glad it's finally up).)
Hey Swifties! So, I thought I would post this because its something I'd
post on TSL if it was still around, as I shared pretty much my whole life
on there, and I always found swifties very easy to talk to (plus you're all
just the nicest people)! So, I wanted to share this on here since most
swifties can be found on tumblr. I'm sure i talked a little bit about this
on tsl (my user was stateofgrace1303, same as on here and ig) but I wanted
to tell you guys more, especially because its getting so much more intense
now and like I said I've always found swifties very easy to talk to you.
Basically, when I was 12, my dad took me to see the RED tour at Gillette
Stadium. We had gone to see the Speak Now tour there and I had been
completely wonderstruck (no pun intended) by Taylor that night. I was 10 at
the speak now tour and had idolized Taylor since I was 6 and she put out
TOMG (and I was known as the Taylor Swift girl by now at my school). So
even though I was 10 I asked my dad, if I save up the money will you take
me to see her when she comes again? And he said yes. About 2 weeks before
the show, I had saved up enough. He didn't think i could do it, but I did.
So, I got tickets and we went to the tour. But when I was walking towards
the stadium (we had parked in a lot right down the street), my vision
became weird, almost like tunnel vision although nothing was turning black
around the edges of my vision. My feet looked very far away from me.
Suddenly, a rush of dizziness came over me and instinctively i grabbed onto
my dads arm to keep from falling down. He asked if I was okay and I could
barely get out words for some reason. I was starting to sweat and we
thought maybe i was dehydrated, so we got into the stadium as quickly as
possible. I was gripping onto everything around me to keep from falling,
but eventually we got into the stadium and I got some water. We had seats
on the field, so that's where I was, drinking some water when suddenly I
was pretty sure I was going to throw up. It was starting to get super
uncomfortable so my dad brought my to the first aid, which was actually
right at the enterance on the field. So when we went in there my dad told
them what was going on and they all looked at me weird and said "people
never get sick. We usually treat bee stings and allergic reactions. We
almost never have people get sick" which actually surprised me. But, they
took me back and laid me down. Almost immediately I started puking. The
nurse I had actually had just had a baby and had some anti nausea
medication on her. So, she gave me that but it didn't work. And I just got
worse. My dad went to find me something to eat so I'd have something in my
stomach. He came back with some chips and iced/frozen lemonade but I threw
up every time. I was so dizzy at this point I was gripping onto the bed
they had me on and puking my guts out, as well as sweating a lot. After a
while, as it only got worse, they actually thought I might have had food
posioning and asked what I ate. But there they noticed something. I was
completely white. Like white as a ghost. Except for my lips, which were
turning blue. And I was struggling to breathe. They wanted to take me to
Boston Childrens and my dad asked if I wanted to, but it was Taylor. I
couldn't miss it. So I said no for that reason. But actually, everyone at
the stadium was trying to get me tickets for the show the next night as she
was playing two nights. Security guards, the nurses, my dads girlfriend...
But nobody could get tickets in the end which was okay. But later my dad
went and for a list of everybody's set times. I had been in first aid for
about an hour at this point. He came back with the list and said "I promise
I will not let you miss them" he said and pointed to Ed Sheerans name, then
Taylor, since I was a huge Ed fan as well. He knew I probably wouldn't be
able to stay, but even seeing them for a minute would've been perfect to
me. Another hour had passed, and I was still there in the same condition.
It was terrifying, and they were really pushing me to go to the hospital
(they wanted to call an ambulance because they actually thought something
very bad might happen if they didn't). But I keep pushing that off because
I wanted to see Taylor and Ed so badly. But, 2 hours I had been there in
the same condition, puking up everything, completely white with blue lips,
struggling to breathe, so dizzy I couldn't even sit up. It was starting to
get painful honestly. So, I suddenly just burst out crying. I was just a 12
year old who wanted to see my idol, and I got this... This weird sickness,
and got stuck in first aid. In so much pain. I didn't even really
understand what was happening. I had always been a sick kid. Always getting
colds and infections. In fact, I almost died as a baby from a problem with
my kidneys, and had become septic. Its a miracle I lived. But I had never
experienced anything like this... And to experience it when I was just
trying to see my idol? When it was only my second concert ever? It crushed
me tbh. My dad asked what was wrong and I finally said the words I had been
avoiding all night... "I wanna go home" (which was actually his
girlfriend's house who lived in Boston... I'm from Maine). And he said
"okay". That was all he needed and he left, walking back towards where we
left the car. However, around 7:30ish the traffic in this area is really
weird I cant even explain it. But traffic can only go one way, instead of
both ways like normal.. So he couldn't get a ride back to the car and had
to walk, and then drive the car in traffic all the way to the stadium to
pick me up. So i had to wait a while, and while I did I heard clapping and
then a British voice say "hello Boston" and he started playing give me
love. I listened to him play and i only cried more because I was so
frustrated I couldn't go out there to see him. About half way through the
set, my dad showed up. They let him park in a no parking zone to come and
get me so he was right next to the enterance to the field. They were going
to put me in a wheelchair, but instead my dad came and helped me up. He was
holding me up straight and almost dragged me out of the first aid station,
into the stadium. I remember this part so well. The air hit me, I heard
Ed's voice clearly and saw him on stage, and suddenly, I let go of my dad,
and I was able to stand on my own... And I was fine. It was like a miracle.
I yelled to my dad over the music "is it too late to stay?" And he screamed
back "what??? After all that you wanna stay???" And I said yes, so, we
stayed. He went to go move the car (the girl was so nice who did the
parking, he told her the story, and he just needs to park the car and het
back in the stadium, how much would it cost. And the girl said park
wherever you want no charge. I thought that was seriously the sweetest
thing.) Sooo he did that, and since I was only 12 in a huge stadium, one of
the cops that was patroling the place stayed with me and asked me all kinds
of questions about Ed Sheeran, especially about the A-Team, when he played
it. He said "this isn't his song right?? Is this a cover?? I know this
song." And I told him it wad and told him all about it. It was the ideal
conversation for 12 year old me 😂 Anyway, my dad came back, we got to our
seats, and I actually met Andrea for a very brief moment! And before I knew
it, Taylor was playing. And I had made it through the entire show. I woke
up the next morning, still feeling a little sick but actually felt better
after eating, so I thought the worst was over. But, I was wrong... I didn't
know that one night would become my life... And god I wish I had gone to
the hospital... Maybe I would be okay now if I had... But anyway... A month
later (in August), it happened at my friends end of summer party. Then a
month later (in September), while I was at school... Each time worse than
the time before. Everyone had been informed I was having issues, but nobody
had seen anything happen yet. I seemed like myself. Then one day, I was on
my way to lunch with my friends, and I collapsed in the hallway... Same
thing happening. All my friends freaked out and 2 stayed with me while the
rest went to get the nurse. She actually thought I was dying, and honestly
I could've. She called my mom and said she wasn't sure if she should call
my mom or an ambulance. Then my mom came and got me and immedaitly took me
to my doctor (because she said next time it happens to come in so they
could monitor me). I was monitored and fell asleep, then 4 hours later i
woke up like nothing happened. After that i was pulled out of school and
constantly at the doctor. And I just got sicker and sicker... Which was
later diagnosed as... "Anxiety". By an unqualified doctor. He was a thyroid
doctor and diagnosed me with that?? As time went on, I got incredibly sick
to the point I can't even move. I have become completely disabled and lose
control of my body a lot. It's like my brain is disconnected from my body.
And I get this weird feeling im falling off a cliff and I cant feel my arms
and when that happens, I cant move at all. I cant even express how bad it
can get, how scary and painful it is. I'm a lot sicker than most people
think I am... I spend most days in bed, actually unable to move. I find
ways to keep my spirits up, luckily. Mostly its listening to Taylor and
watching friends but yeah 😂 I have days where I can't even sit up I'm so
dizzy and weak and it hurts so much. Its also terrifying when you don't
have full control over your own body. Absoultely terrifying. Although I
have okay days where I can stand up and function for a little bit, most
days lately have been like this... Bad and living from my bed due to
weakness and dizziness (extreme dizziness honestly). I have days where its
even a struggle to breathe, the most simple thing in the world. It gets
depressing at times... When you spend all ur time in bed or a wheelchair it
really can vet discouraging... But I'm still fighting. And I'm so happy I
am. And like I said, Taylor always lifts me up. Even on my worst, most
disabled and bed ridden days. Oh, that reminds me... I also have seizures
now, sadly. But I hadn't had what happened that night at the RED tour in a
while though... Until one night last year... While I was seeing Ed Sheeran
in Gillette Stadium 😂 Maybe its him?? I dont know 😂 Anyway, I spend most
days in bed, and I do online schooling now. I've seen Taylor twice since
then. For 1989 and for reputation. With 1989 I needed a lot of help but I
got through it. Reputation, it had gotten so bad I needed a wheelchair and
I still do whenever I go out, really. I dont have full control over my body
and I'm too weak and just very sick. I'm really hoping to go to lover fest
but if i do will need a wheelchair and even then I'll probably still feel
sick... But Taylors worth it ❤ Hopefully can get ada seating like with rep.
Wanted to keep this last part short but I think I failed 😂 Mainly wanted
to focus on the red tour. My health story is so incredibly long, I couldn't
say it all (maybe I will later). However, for now, I will tell you this, I
was diagnosed with a thyroid disease, migraines, and seizures. Then it was
discovered that all of this... Was advanced Lyme Disease... And it created
something called Dysautonomia (basically a disfunction of the autonomic
nervous system, which most people don't even realize they have, or how
important it is, until it makes you sick and either nearly kills or
cripples you... Depending on the kind though.) Also known as POTS, or
Postural Orthostatic Tachycardia Syndrome (there are actually 15 kids of
dysautonomia, that being one of them, I might possibly have more than one
kinda, were not sure yet. But its basically half cardiology half
neurology). And there's no cure... I could be this way, this disabled and
sick for a while... But there are treatments that might work luckily!!!
Since there are no Dysautonomia clinics in Maine, I either have to go to
New York, Baltimore, Cleveland, or Minneapolis. So looks like im taking a
trip! Sadly to a hospital, but still 😊 I honestly don't know how we'll pay
for it, but I need it, or I will spend my life like this. So I'm sure we'll
find a way... Like I always seem to do in life, no matter what 😊❤ Oh, and
funny thing is, I have something called PANS as well... So I have Pots and
Pans 😂😂😂 Anyway, I just wanted to share this with you guys because like
I said you guys are always so great and Taylor is my favorite artist so I
wanted to share it with the people who understand my love for her. I've
been a huge fan of her for 13 years (I'm 18, 19 next month, now). Theres
something about her... She's always helped me but especially now. She makes
me so happy and feel so safe during this time... Im fact, the only time i
smile like i did when I was younger,before all of this, is when I listen to
Taylor. I even have a Long Live tattoo on my wrist because I felt it
represented my love for her the most, and what we've made as a fandom, the
magic we've created. Plus, it reminds me that I'm fighting my battle (this
"dragon") with Taylor and her music on my side, as well as all of you. And
it makes me smile. I can't wait to get more Taylor tattoos... Honestly,
after all of this and the other health issues I faced as a baby and a
child, I can't believe I'm still here, that I'm still living... Especially
because since I've always been so sick with so many different illnesses and
health issues to the point I'm disabled, my immune system is so weak. I
truly cannot believe I'm still here. But... I guess my body just isn't
ready to give up. It hasn't yet at least!!! And it doesn't want to. It
won't. I'm strong. Me, and my body, want to fight until the very end. And
I'm grateful for that. So grateful that I am still alive, and still
fighting every day of my life. It might be hard, and I can't function or do
really anything but lay in bed and watch tv most days, but I'm just so
thankful that I'm still alive, that it's okay I have to be at the doctors
so much and have to take all these meds (I do anything at this point that
can help me even the slighest). And no matter what life throws at my
health, my body always fights it and gets right back up. I fall down 10
times, I stand up 11. And I could not have the courage and strength to do
this if it wasn't for my idol, Taylor Swift. I've been a fan of Taylor for
13 years (I'm 18 now, 19 next month) so her and her music have helped me
through every problem I have ever faced, and this is no different. She has
a song for everything, so I can always find something to listen to that
makes me feel like she understands and she's telling me it'll be okay...
And ever since LOVER came out, I've been listening to soon you'll get
better on days its really bad, and my girlfriend sends me that song on bad
days too... It makes me feel safe. And like I can fight this. Thank you,
Taylor. I will never be able to repay you. I may struggle with this every
single day im here on earth, but with your music and the support I feel
from the swiftie fam, I know I'll get through it. Anyway... I guess I
should end this here. Again, sorry this is so long but if you read this
thank you so much for taking the time to!! If you made it to this point,
I'm proud 😂❤ And it means the world to me, you have no idea. Im hoping
this will get to Taylor and maybe even Ed one day. I love you all so much
and once again, thank you for reading!! ❤❤❤
@taylorswift @taylornation 🌈❤ @taylornotices 💜
(Pic is from when I was in First Aid at Ed Sheeran. It was so bad there
they had to give me an IV. I was in the first aid station, wrapped up in my
nightmare before Christmas blanket, on a stretcher with an IV in my hand
pretty much the entire night. It was so painful. When I arrived to first
aid I was actually unresponsive. Like I knew what was happening but I
couldn't talk or open my eyes. All I could do was make very small
movements. It felt like my body was shutting down. I was having bad heart issues as well and they wanted to give me a medicine fot my nausea but since I had lyme disease it could make my heart issues worse so they had to give me an EKG... Right there at the concert 😂 Interesting... But, I got through it.
Like always 😊 So yeah thats where the
picture is from ❤)
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