Invisible: Taja’s MPN Story

Not in a million years would I have
thought I would have a blood cancer. Here is what you do not understand about me. I
am a 27 year old woman who has been diagnosed with polycythemia vera. I look
completely normal on the outside, but on the inside, I am in extreme pain. When I
was 23, I started to experience symptoms. Fatigue, dizziness, and extreme pain. At
first, I thought it was tiredness, exhaustion, possibly dehydration. I didn’t
think it was anything other than that because I was working a lot and I also
was a full-time student. I got a blood test by my primary care doctor and he
diagnosed me with a blood cancer. This is a silent disease and part of my
job is to listen to the silence. [Hi, Ariana I know we spoke last week in
regards to you working in the bakery department.] My disease is mostly
invisible to the eye, and even though I live my life as normal as possible,
I am sick. [Hi, how are you, sir?] My disease isn’t visual – it’s internal. I am the assistant store manager of HR at a high-end grocery store, and I’m on my
feet almost all day – like literally, all day it’s like constant movement. I feel tingling, burning arm and leg pain. I have
headaches, and then I have burning sensations in my toes. [Who’s here with
you today?] I can be in mid conversation with an employee and just feel an
extreme pain goes down my leg so at the end of the day, I’m really exhausted and
my family and friends do not understand that. My parents, they’re like, “But you look fine,
so you can do more.” So they add more to my plate than I can hold because I’m
such a go-getter and a doer and I’m always there. But it’s some days where I
just want to crash. My father pushes me everyday.
Conversation after conversation. “So, have you thought about the goals that you set? “Yeah, I thought about them.
I don’t know if they’re ideal,” “Yeah, so as far as
going back and becoming a nurse practitioner, where are you on that?” I wish I could say to my father, I just need you guys to take a step back
and understand that you have a child battling something that’s beyond her and
she’s still trying to understand how to grasp it. My story is very unique because I was
very young when I got diagnosed. I’ve ended up in the hospital several times
in the past two years. This isn’t a sometime disease,
this is an all-the-time disease. I’m afraid because I feel like if I fall, no one is there to
pick me back up. I need someone to help me understand and be able to grasp this
diagnosis. I feel like I’m on pins and needles all the time, because I don’t
know what to do, what not to do, how to live my life. And I would really like to
speak to someone who can give me some ways to cope with this. I need some help. I’ve been so self-sufficient for so long,
why can’t I just figure this out on my own? And I’ve got so used to being that way, that it has consumed my life. I know I need to go to a support group, but… it’s a scary feeling. My name is Taja and I have PV. “This is hard for you because you look beautiful, you look healthy, and it’s hard for
people to understand that you have a serious disease.” “So here we are, we’ve
found a diagnosis that most of us weren’t expecting.” “It gets better
because you learn how to live with it, and you find out that it’s not so bad to
ask for help.” “We try to take care of ourselves, and that’s one of the hardest
things you learn – is you got to take care of yourself first.”
“Yeah.” “I think you’re finding your voice.
Start asking the right questions at the right time,
and it gives you courage to go forward. You have to be your own advocate,
you have to do the research, and it helps to have somebody to talk to.” “We’re living with it each day, and if you need family, I’m available, I’m here.”
“We can reach out to each other.” “You’re not leaving here without our phone numbers, our emails, our Facebooks.” “Thank you so much.” “All these encouraging words, like I can’t
appreciate this enough, because I feel like I have taken a brick off each of my
shoulders and laid them down. [clapping]
Because it’s been so heavy. I needed this.
You guys don’t understand.” “Because we needed it.
We needed you, we needed you.”
“Thank you guys so much, it’s really been a pleasure, and I do want to continue this conversation
because I feel like we all have more to say.” “Yes, we do.” I felt pretty darn special to have
a group of women that wanted to be my second family. Telling my story has been
my therapy, my truth. When I first got diagnosed,
I was like, okay, this is the end.
But now that I’m living it, it’s my beginning. It’s the start of overcoming
something so rare. This beginning is my beginning, it’s my journey, and I’m not gonna be scared of it. I’m not scared of the future anymore.

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