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 realized I couldn't keep invalidating myself because that made my bouts of anger that much harder to deal with. The easiest way to put it is this; having a bleeding disorder sucks. There is no way around it. Some days you just have to allow yourself to wallow in self pity and acknowledge that what you're going through is not something that you would have chosen. I guess the moral of this post is to embrace your emotions- fear, anger, sadness, frustration- whatever it is welcome it with open arms. I believe that having a bleeding disorder (granted I still feel somewhat new at this) is a learning curve and within that is learning to cope. Yes, keep your perspective and remember to be grateful but also don't forget that we're all only human and sometimes we need to hear ourselves. So I encourage you all to be open, talk about what you're going through, cry, laugh, whatever it is that you need to do. Because at the end of the day this is not an easy thing we're dealing with and we have to do whatever we have to do to get through it.
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...
This is exactly how I feel
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