A Touch of Scarlett, our journey with a rare bleeding disorder

Thank you Hemophilia Foundation of Northern California for another fun filled event. I was blessed with the opportunity to hang out with some incredible people at HFNC's 2015 Holiday Party and am still aglow from all the love and support I received. So much has changed in the last year and it all started with the same holiday party one year ago. It's amazing to believe that last year at this same time I was walking into that same building with the feeling of fear and loneliness. . . .This year I walked into that same room with excitement and hope for the future. Last year when I attended one of my first local chapter events . . . The HFNC's 2014 Holiday party, I was a bit intimidated at first. . .But I was immediately embraced by the community with open arms and soon found out how important this community would be. . . to me and my family. It was there that I met a very incredible lady, that wouldn't take no for an answer, and encouraged us to go to our first...

Originally posted on Nov. 11, 2015 on  http://www.hemophiliafed.org/news-stories/2015/11/infusing-love-with-gratitude/ Infusing Love: With Gratitude Categories:  Adult Women ,  Community Voices ,  Families ,  HFA News ,  Mom's Blog: Infusing Love November 11, 2015 It's said that  everything happens for a reason. Someday you'll look back on this and be thankful. You'll be able to see what it's taught you.  When my daughter and I were first diagnosed with Platelet Storage Pool Disorder (PSPD), I had a hard time finding the good in anything amidst all the frightening doctor visits, endless testing, thousands of questions, and unknowns to decipher through. That was four years ago and so much has changed. I wouldn't be who I am today if it weren't for having a blood disorder. I have reason to be thankful now. These are the five most important things having a bleeding disorder has taught me: 1. Finding friends, family and memb...

I'm a California girl and unfortunately was taught quickly that how I looked played an important role in where I stood on the social ladder. .  and going through adolescence with an undiagnosed bleeding disorder didn't make that any easier. Unexplained bruises covered my arms and legs. Bloody noses started for no rhyme or reason and countless other embarrassing bleeding episodes took place during my most impressionable years. All in a town where looks seemed to outweigh personality and character. Fast Forward to me now. A wife, teacher and mother of 2. I'm absolutely exhausted, working my butt off trying to balance being a present Mom, all while working enough to help get food on the table and the bills paid. And although I would like to say that my appearance is always on point. . .that would be a lie. I rarely have time or remember to put on make-up and do my hair, let alone moisturize, exercise, or go shopping for the latest trend. I must admit. . . I would LOVE to...

An interview I did with HFA. . . http://hemophiliafed.org/dateline/HFA_Dateline_2015_Q2_Summer/#p=26 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 I am PSPD:  http://atouchofscarlett.blogspot.com/2015/04/i-am-pspd.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

As I was sitting at the computer the other day preparing for an upcoming interview I have about life with a rare bleeding disorder, Scarlett sat down beside me and started reading the questions. As she started to answer them back I felt compelled to write it down. . . . Her answers were too cute and insightful not to share and so I decided to include them on my blog. A few details about your life: Your age now, where you live, what you do, hobbies, etc.   My name is Scarlett and I am 7 yrs old. My favorite animal is a zebra. My favorite color is yellow. I make my Mom happy by giving her massages with my brother. When I was in class one day we were doing math and I did really good because I did every single one in a really fast amount of time. If I had a pet kitten I would feed it and comb it and I would do the same with my other pets too. My editor said you have a storage pool / platelet disorder — is that correct? What’s the name of the disorder? Please tell me a little bit...

Each year the anxiety leading up to Scarlett's 504 and IEP plan seems to take over, but this year it was different.  I finally feel like the school understands the situation and is doing everything in their power to keep her safe while providing a social environment she can thrive in. This year Scarlett showed interest in coming to the meeting because she wanted to take part in deciding her restrictions. The look of astonishment on the nurses face as she described her "platelet bleeding disorder" and explained the steps and protocol to take when she gets injured was one I'll never forger. My heart filled with pride the more I heard her go on about her disorder-she was obviously a well educated little girl. Due to some minor head bumps Kindergarten year, followed by her enormous bump in the beginning of last year . . . left Scarlett's 1st grade of school with a lot of restrictions. She wasn't allowed on the playground unaccompanied by me (which I only coul...

A piece I wrote for  HFA 's Infusing Love . Originally posted on August 19, 2015 http://www.hemophiliafed.org/news-stories/2015/08/infusing-love-her-own-protector/ Infusing Love: Her Own Protector Categories:  Adult Women ,  Community Voices ,  Families ,  HFA News ,  Mom's Blog: Infusing Love August 19, 2015 The first few years after Scarlett got diagnosed with a Platelet Storage Pool Disorder (PSPD), I was sure she was never going to live a normal life. Being told your 2-year-old has a life threatening condition and that you would have to keep her safe and free from injuries, proved to be harder than I imagined. Throughout her preschool years, we were faced with countless trips to the doctor and emergency room over injuries that I eventually learned I could not prevent. Proof that Scarlett bruised immensely and the doctor’s constant fears of head injuries had me feeling like I was going to have to keep my daughter in a bubble for eternit...

A couple months ago, on a Friday night in the wee hours of the morning I woke up in the most excruciating pain ever. Stooped over in pain, unsure of what was happening. . . I rushed to the bathroom. A few minutes more of feeling like someone was stabbing me in my ovaries and I decided to try and just go back to sleep. I figured I was having another ovarian cyst erupt and needed to just lay down and let it pass. . . But as I was leaving the bathroom I suddenly got hot, and my vision went blurry . . . and then black.  I fainted. I had only fainted once before and ironically it happened in the company of a doctor. And to be honest I didn't even realize it had happened, so this kind of freaked me out. I woke up to my overly concerned husband towering over me, asking me if I was OK. He had woken up to the sound of me crashing into the door and falling to the floor. I, still being in so much pain AND in a state of shock and confusion, tried to move and literally couldn't get off th...

A piece I wrote for  HFA 's Infusing Love . Originally posted on May 20, 2015 http://www.hemophiliafed.org/news-stories/2015/05/infusing-love-physical-fundraising/ Infusing Love: Physical Fundraising Categories:  Adult Women ,  Community Voices ,  Families ,  HFA News ,  Mom's Blog: Infusing Love May 20, 2015 This is becoming one of my favorite times of the year to be a bleeding disorders advocate.  It’s the time of year when individuals of all ages come together to raise crucial money for the community by participating in walks and bike rides across the country. In 2011, HFA hosted it’s first annual  Gears for Good Bike ride  from West Virginia to DC, to help raise awareness about bleeding disorders, all while raising funds for HFA’s financial assistance program,  Helping Hands.  Each year, more and more individuals have been joining in the fight to raise money for this important cause. And in 2014 HFA succ...