Predictably Unpredictable: My Experience with a Rare Bleeding Disorder

It’s been a long, exhausting few months. I feel like I haven’t stopped. It started with my follow up appointment at UC Davis for my second opinion. My mom and I flew back out to California so they could do further testing. It was determined that I have a very rare qualitative platelet disorder, Platelet Storage Pool Defect. Essentially, my platelets don’t secret their granules, the little sacs inside of your platelets that contain hormones and chemicals that, when released, stimulate other platelets to aggregate. Storage Pool Disorders don’t have many options in regards to treatment. Stimate can work but not always. Novo7 can work, but it’s incredibly experimental. He suggested a factor IX product that might work although it’s never been considered for Storage Pool Disorders. Ultimately, I was told that my best option for all bleeding would be platelet transfusions. The news we received was initially a little defeating. I knew my current hematologist at home wasn’t open to giving...

It's been a few weeks since my appointment at UC Davis and so much has happened that I've just now allowed the information from my appointment to really sink in. I was lucky enough to spend an amazing week in Sacramento, California and catch up with friends and family. The day after we arrived was the day of my appointment and to be completely honest, I was terrified. I have had such a negative experience throughout the last few years that the thought of having to go to a hematology appointment just throws me into an anxiety tailspin. I was lucky enough to be accompanied by both of my amazing parents. Since diagnosis, it has been my mom and I primarily dealing with appointments and infusions while my dad worked his butt off to provide for us, so I was really glad that my he could be there also. Walking into the area where they hold clinic I was immediately met with positive energy. Everyone was so amazing and kind. It was a breath of fresh air. We initially met with a...

As my upcoming appointment at UC Davis for a second opinion approaches I can't help but feel a little anxious. These past few months I feel like I have been repeatedly ramming myself into a brick wall trying to get answers. I have taken notebooks full of questions into the hematologist and the only consistent word I have heard is no. There has been no explanation or reasoning behind it, just no. I am fighting tooth and nail to get an answer about what is going on with my body and what we can do so that I can start living life. Honestly, I haven't really been living. I think I've been going through the motions. I have missed out on my first two years of high school and numerous social events because of my bleeding disorder and honestly, I'm over it. I am so over living my life trapped within the world that is my bleeding disorder. I am ready to live a life where my disorder is not all of me. It will always be a part of me, I understand and accept that, but I need it to n...

There are two types of people in the world. The kind that care and try to understand the situation and those that don't. One isn't necessarily better than the other- that's just how it is. Some people are predictable. They are who they are and you know to expect that from them. There are however the instances where words fly out from left field and slap you in the face. The hardest part is when it's coming from someone who should love you unconditionally and support you no matter what. I've had my fair share of individuals close to me not understand and fail to take the time to try. I believe a major part of understanding the life of a bleeder is asking questions. I find it difficult to want to explain my day to day life to people who don't seem to care. In my eyes, it's a waste of  time.  It's hard to affectively educate as an unaffected person tells you how you're supposed to live your life. Let's all keep in mind what they say ...

   My most recent trip to the hematologist and my latest round of bleeding has left me feeling like I'm fighting a never ending battle. I've been consistently bleeding for about 4 weeks now with more pain than I have ever experienced. My meeting with my hematology team was less than encouraging. My lab work came back ok so they've decided to take me off Stimate due to a risk of clotting. I understand and appreciate where they're coming from but in the meantime what now? I haven't been seeing very good results from the Stimate anyways so I guess that in hind site it doesn't really matter... but it does. I feel like I'm insane. Well, if my labs are good does that mean I don't really have a bleeding disorder? What if this is all in my head? Am I just being a baby about it all? No. This is real, every part of it. Alright, my labs look good...awesome... but what are you doing to help relieve me of my symptoms? "You should set up an appointment with your ...

I’m struggling these days in having to explain my disorder to other people, specifically non-bleeders. There is this blatant disconnect, it seems, in my world and theirs. Some people understand, or try to the best of their ability, but more times than not I feel like I’m being second-guessed or judged. I feel like there is a line. Maybe I have subconsciously put it there or maybe it’s just there. Either way, I feel like when I’m with other people I’m on the other side of the line. Non-bleeders just don’t understand how something so tiny to them- a drop of blood and a band aide- can be life ending for me. Bleeders learn how to prevent these situations from being life ending and how we can be pro-active opposed to reactive but at the end of the day it’s just not the same. Another aspect that I find really hard to reiterate is the fact that I am NOT choosing to bleed. I am not suddenly bleeding because I choose to be. I am not covered in bruises by choice.   I feel frustrated...

Control. One of the things I like the most but have the least of. I'm the type of person who loves to have everything together all the time. I like to look like I'm fine and like I have everything under control. In my world it wasn't acceptable to ask for help or admit to feeling overwhelmed because I saw it as a sign of weakness. Not for other people, just for myself. I think me wanting constant control went into overdrive after being diagnosed with my bleeding disorder. I believe other bleeders can relate when I say that having absolutely no control of what our bodies do is entirely frustrating. Of course I can control how I react and when I take my meds and which meds I take but I have zero control over when I bleed and the severity of the bleed. So in turn I became desperate to control any aspect of my life that I possibly could. It started with school and then it flowed over into my home life and it started affecting my relationships. I was overbearing at times,...

"What is normal?" --The answer given to me every time I've expressed my desire to feel normal. I think as a teenager and just as a human being in general we all strive to be 'normal'. I don't think it's necessarily a bad thing but I do think it is a want that will leave most if not all of us frustrated and feeling empty. For me, wanting to be normal has mostly stemmed from dealing with my bleeding disorder. Every needle, every doctor, every horrible reaction to a med or a new med regimen.... I wanted to be normal. This past weekend I was lucky enough to get the opportunity to attend a women's retreat for women and teens affected by bleeding disorders and had the pleasure of meeting some pretty spectacular ladies. The teens had the opportunity to participate in a workshop hosted by an incredible organization that pushed our leadership, social and personal skills as young women. I was the newbie in the group as this was my first real leap into the bleed...

I believe everyone has at least one emotion they feel more than any other. For me, that emotion is anger. I've spent a lot of my time over the last few years being angry- angry that I was different, angry that no one understood what I was going through, angry that my disorder interfered with my life to the degree it did, and above all I was angry at myself for being angry. I am well aware that there are many individuals in the world suffering more than I am. Day in and day out whenever I would feel the slightest bit angry I would tell myself "It can always be worse". Reflecting back, I think I used that to get through my hardest days. Be thankful  for what you have opposed to what you do not, be thankful you are not suffering from a terminal illness, be thankful that you have a roof over your head and clothing on your back. I now realize though, after many hours spent in therapy and many hours spent self reflecting, that sometimes you need to feel what you feel. I realize...

When I was diagnosed with Von Willebrands disease at the age of 12 I never would have guessed the last three years would have turned out the way they did. I always have had bleeding issues for as long as I can remember. I could be walking down the street and bam- nosebleed. Every time I lost a tooth it bled for hours. Cuts, scrapes, etc. all resulted in a ton of blood. So when I was diagnosed it was the 'why' to all my problems. Little did I know that the answer that we had just received opened another door that held many obstacles that I would face in the coming years. I did a DDAVP challenge post diagnosis and the results were very encouraging. I responded very well to DDAVP infusions and Stimate nasal spray. Eventually as time passed after the VWD diagnosis I continued to experience extremely heavy bleeding. I was in my hematologists office every other week and would get DDAVP infusions for three days in a row. This would leave me feeling like I had a horrible case of the fl...