|| My Story
Meet Barb - Washington, USA
My Story and I'm Stickin' To It!!
It was 1951, a different world than we live in now. Mama was a nurse at the local hospital, and Daddy was a city cop. Then, I was born ... bruised. Black and blue--kinda bruised. In those days, all birth moms were given massive drugs and painkillers, so they wouldn't have to "deal with" a birthing. So Mama asked the delivery doc, in her groggy haze, why I was so bruised ... and was told, "Some babies are just prone to easy bruising". That mantra was to continue throughout my life, and also as an explanation for why I bled ... and bruised so often ... and well ... you know the drill, or you wouldn't be reading this!
The 1950s were a time when most moms didn't talk to their daughters about anything "sexual" - periods being one of those "things" that weren't discussed. In fact, it wasn't unusual to hear a mom refer to a daughter's period as her "curse"! I know, that has to sound absolutely ridiculous to those of you who are probably under age 50, but for the rest of us, it was a given. Not only could we not speak those words in front of our moms, words like: period, menstruation, pads, bleeding, etc., we could hardly even mouth those same words in front of the worst of all: that dreaded MALE family doctor!
So after a bruised beginning, all progressed fairly normally for a few months. Until I got my first tooth, and bled all over the place -- bled so much that Mama took me to the ER, only to be told that she was over-reacting; by the same doctors she worked with! From what I've re-constructed over the years, and from my own recollections, this was the first of at least fifty hospitalizations, almost all concerning bleeding, and involving hundreds of units of fresh frozen plasma (FFP), cryoprecipitate, and whole blood transfusions to control that bleeding. All explained away by the fact that some kids bleed a lot, and I was one of them. Being that it was the early 1950's, when little was known about women with bleeding disorders, and Mama was a Registered Nurse who was taught, "NEVER question the doctor" ... well, that's a prescription for misdiagnosis that I was unfortunately caught up in.
I became very complacent about the fact that when my brothers fell off their bikes, they got scraped, got back on, and rode away. But when I fell, I'd get a lumpy thing in my muscle, always explained away as a "severe sprain"... but after days wrapped tight in an ACE bandage and on crutches, and the "sprain" would still be lumpy and painful. Mama would haul me off to the local ER for a "treatment", which could be anywhere from a few hours to a few days. This was all fairly sporadic until...
The dreaded "CURSE" came upon me! I was really fortunate that as an athletic gal, and pretty slow to mature physically, I didn't actually get my first period until I was just a few months past my 15th birthday; late by today's standards, but, a blessing in disguise. The night I got it was the same night I was the lead in our school play, and of course, "it" came about an hour before the curtain opened.
I wasn't prepared, either physically, emotionally, medically ... or by my mother. I was a total babe in the woods, not knowing what to do. This gushing stuff wasn't anything like my girlfriends had talked about (those really brazen girls who actually DISCUSSED stuff like...periods!) I had to grab that sanitary (what a name for it -- as if it would be something unsanitary?!) napkin (as opposed to the kind you placed carefully in your lap, before a meal) that I'd been carrying with me for just this special occasion, wrap it twice with toilet paper, then straddle it ever so graciously for the next 2 hours -- the length of the play -- until I could stop and assess the situation (and the bloody puddle that had accumulated in my undies, all to my horror).
This scenario was just a precursor to the next fifteen years of my life, which were mired in too many days spent bleeding with severe menorrhagia, and not being able to control it. I was operated on 16 times, suffered 4 miscarriages, and had a total hysterectomy at age 31, just to control the bleeding. It did, but only from that area.
I still had bleeds, but they weren't called that. I had sprains that wouldn't heal, bleeding from my kidneys and colon that was unexplained, and I was chronically anemic. I experienced a head trauma, was sent to the ER conscious, but acting a bit irrational, and was diagnosed with a "brain contusion" and told to go home and rest for a few days. My husband (then my boyfriend) stayed with me the entire time, as he was concerned that I was not my normal self. I wonder if I was experiencing a brain bleed then, but nobody realized the seriousness of it.
Then, a miracle occurred! I had a dental checkup for a routine cleaning. I had only been to this dentist six months earlier, when we'd met for the first time. Upon looking at me, he said, "So, what's with the black eye this time?" I explained that it wasn't unusual for me to get subconjunctival hemorrhages in my eyes - that happened frequently. My primary care doctor had rationalized it as something that was just "part of being me, with my bleeding history". The dentist wanted to know why the tissue surrounding my eye was bruised, as if I'd been hit. I actually had to look in the mirror to see what he was talking about, and omg ... I had a shiner! Blood had pooled up and under my eye, and I had no explanation as to why, other than it was just me being me.
This same dentist had noted a previous eye hemorrhage on a visit six months earlier, as well as stating in his records, "patient bleeds from gums upon touch, with absence of periodontal disease". When he asked if I thought I might have a bleeding disorder, I replied, somewhat defiantly, "Of course not...I think I'd know that." He asked why I thought I'd know, and my response was, "Well, my mom is a nurse, and I've been in hospitals a lot". When he asked WHY I'd been hospitalized so many times, my reply was certain and quick: "For bleeding." Big DUH!!
Things progressed quickly, and I remember being hospitalized and then told that I had a rare bleeding disorder called Factor VII Deficiency. The hematologists who diagnosed me did not have a clue as to what I should do, as there was no treatment available at that time, and not a very good prognosis. I've lived much of my life as an underdog, so for me, this was just one more opportunity to come up from under!
I can honestly say that if there's ever been a turning point in my life, it was the day the hematologist told me that 75% of the people who have my condition, don't live to age ... 50. I was 47, and hadn't even seen Paris yet! And, I was ... a flight attendant! So in my mind, there was a race ... not just to reach all those goals I'd set for myself a long time ago, but also, to beat the odds. And, I have!
Tomorrow, I turn 60! I always known I'd see this day, and with the advent of education about my condition, medicine to treat it finally becoming available, and the support of wonderful family and friends, I've made progress —no surprise to me. When I found it difficult to meet other women with bleeding disorders (WWBD), I became a Founder of a support network to promote education and networking for WWBDs called LadyBugs. (http://www.ladybugsfoundation.org/). When insurance issues tried to strangle me, I beat them at their own game! When I still occasionally have my "stinkin' thinkin'" days, I look to my past, my history, my WWBDs who have given me breath when mine is sparse ... and I keep moving forward. I refuse to get stuck in negative territory! Happy Birthday to ME!
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In 1998, realizing a need for Women With Bleeding Disorders to network with and empower each other, Barb founded LadyBugs, a 501(c)3 educational non-profit dedicated to serving WWBDs. She has also spent the past 10 years as the first Patient Advisor for the PeaceHealth Hospital Organization, and has continued the outreach and awareness of WWBDs within this medical community, as well as advocating for patient-centered care and safety in the hospital and medical clinic.
Her hobbies include gardening (especially herbs and flowers she can use to make potpourri, spices, etc.), collecting and restoring vintage jewelry, and writing real, hand-written letters when she can.
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