This is a write up I did for BleedFree, Inc. back in January. . .
Hello my name is Kari Peepe and I have Platelet Storage Pool Disorder. Sometimes I feel like I should come with a stamp, that says WARNING!
When my daughter and I got diagnosed with the rare bleeding disorder-PSPD. . . I've never felt so alone. The Dr.'s made me feel like our lives would change forever and that our daughter would never live like a "normal" child. So I walked away from that first appointment picturing a life full of Dr's appointments, bleeding episodes, medications, and a lot of trips to the ER. Not to mention all my fears about the social impact this would have on her, once she reached grade school. But. . . What I didn't foresee, was the friendships that I would find.
My bleeder buddies have become such a huge part of my life, sometimes I forget that I've never even met these "friends" before. Friends I've known forever have slowly drifted away, and been replaced with people 1,000's of miles away sitting behind their electronics, sharing new trials and tribulations of life with a bleeding disorder. But these people know things about me my own friends and relatives don't even know.
It feels like ever since our diagnosis I've been living with a secret identity! There's the Kari before the diagnosis. . . and the Kari after. A lot of the people that knew me before our diagnosis have trouble relating to me now. Or it's the elephant in the room, and they dismiss it or act like it doesn't exist.
I can honestly say, that there are people I interact with everyday. . . that don't even know my daughter and I have PSPD or what that even means. They have no clue that I have a blog of my own. Or that I'm part of HFA's Infusing Love. That I spend every free moment I have spreading awareness, researching or talking to other parents of bleeders. Or that I spend every extra penny I have trying to give back to Make-a-Wish and Give Kids the World or raise money for Research and the Bleeding disorder Community.
To say that Platelet Storage Pool Disorder doesn't define me, would be a lie. It has become a part of me and changed me in a way I don't think I can ever take back.
If you would've asked me 3 years ago if I thought our diagnosis would make such an impact on our lives I probably would've laughed and said "not in a good way". . . .But my outlook has changed. With our diagnosis I've learned. . . that I am an advocate, a mom that never gives up, a writer, a nurse, a researcher, a fighter, a nurturer, and most importantly a bleeder buddy.
Written by
Kari Peepe
Hello my name is Kari Peepe and I have Platelet Storage Pool Disorder. Sometimes I feel like I should come with a stamp, that says WARNING!
When my daughter and I got diagnosed with the rare bleeding disorder-PSPD. . . I've never felt so alone. The Dr.'s made me feel like our lives would change forever and that our daughter would never live like a "normal" child. So I walked away from that first appointment picturing a life full of Dr's appointments, bleeding episodes, medications, and a lot of trips to the ER. Not to mention all my fears about the social impact this would have on her, once she reached grade school. But. . . What I didn't foresee, was the friendships that I would find.
My bleeder buddies have become such a huge part of my life, sometimes I forget that I've never even met these "friends" before. Friends I've known forever have slowly drifted away, and been replaced with people 1,000's of miles away sitting behind their electronics, sharing new trials and tribulations of life with a bleeding disorder. But these people know things about me my own friends and relatives don't even know.
It feels like ever since our diagnosis I've been living with a secret identity! There's the Kari before the diagnosis. . . and the Kari after. A lot of the people that knew me before our diagnosis have trouble relating to me now. Or it's the elephant in the room, and they dismiss it or act like it doesn't exist.
I can honestly say, that there are people I interact with everyday. . . that don't even know my daughter and I have PSPD or what that even means. They have no clue that I have a blog of my own. Or that I'm part of HFA's Infusing Love. That I spend every free moment I have spreading awareness, researching or talking to other parents of bleeders. Or that I spend every extra penny I have trying to give back to Make-a-Wish and Give Kids the World or raise money for Research and the Bleeding disorder Community.
To say that Platelet Storage Pool Disorder doesn't define me, would be a lie. It has become a part of me and changed me in a way I don't think I can ever take back.
If you would've asked me 3 years ago if I thought our diagnosis would make such an impact on our lives I probably would've laughed and said "not in a good way". . . .But my outlook has changed. With our diagnosis I've learned. . . that I am an advocate, a mom that never gives up, a writer, a nurse, a researcher, a fighter, a nurturer, and most importantly a bleeder buddy.
I started my blog A Touch of Scarlett in September of 2013, after feeling an immense need to reach out and find other bleeders who were going through what I was going though. . . And to reassure me, that I wasn't going crazy. I was scared. Overwhelmed with the "what if's" of life with a bleeding disorder. And felt like I was drowning in the unknowns.
Starting my blog and reaching out to others has taught me things about my life I would've never known and for that I'm grateful. I'm honored to be part of such an amazing group of amazing brave, men and women who are here for the fight and ready to put in the work. Thank you for all your love and support! BLEEDERS UNITE!
Written by
Kari Peepe
For more stories on my journey with defending our disorder and becoming our own advocates please check out:
- The Jackass Whisperer, Dealing with other people's judgements: http://atouchofscarlett.blogspot.com/2014/07/the-jackass-whisperer.html
- Help wanted!Seeking Dr who give a shit: http://atouchofscarlett.blogspot.com/2014/03/help-wanted-seeking-dr-who-gives-shit.html
- Defending our Disorder: http://atouchofscarlett.blogspot.com/2014/02/defending-our-disorder.html
- Interviews, Published pieces, etc: http://atouchofscarlett.blogspot.com/2015/02/my-voice-is-being-heard-interviews.html
- Fear of the Unkown: http://atouchofscarlett.blogspot.com/2014/08/fear-of-unknown-my-1st-blog-for.html
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