Skip to main content

Control

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, to say the least. Thankfully I have amazing parents and an amazing brother who put up with me and understood that I was going through a really rough time. Eventually things got bad enough that I had no choice but to ask for help. My bleeding disorder was so out of control and I was missing so many days of school that I had to go on Homebound services, meaning a teacher would come to my house for two hours a day and work with me on schoolwork. It was really difficult to go from working my hardest to stay on top of everything to being so behind that I felt like I was drowning. I hated myself for being, what I considered at the time, weak. I lost the battle against my workload and now I looked weak for having to have special arrangements and extra help. I felt like I had failed.
As I sit here and reflect on that difficult time I can see that what I perceived as weakness was in fact a key situation that has shaped me into the person that I am today. I was never weak, I was human. I was dealing with a crappy situation and everything that happened was completely necessary considering the severity of my bleeding. In the long run, it has made me stronger than I ever was. It is unrealistic for anyone to expect themselves to have everything together 100% of the time. I can now except that my body is going to do whatever it is going to do and I can't help that. However, I can control how I deal with it. I can choose to break down and stress out and turn to other things and try to control those situations or I can take a deep breath and cope and know that it might be hard now but it will get better eventually. I recommend to everyone, bleeder or non-bleeder, to recognize that we are all only human and that we can only take so much. You will make yourself absolutely crazy trying to control everything all the time. Just remember to take a cleansing breath and know that eventually, everything will be alright.

Comments

  1. Ms. GlorsoFebruary 24, 2014 at 7:41 AM

    Control, and realizing that we as humans have very, very little of it, is an enormous realization. Thanks for your post, Keira. It's not weakness, as you said, but taking one thing at a time. Learning to take care of ourselves is a huge life lesson, as well.

    I am slowly starting to learn that I basically have very little control over life, the universe, and everything (and a nod to Douglas Adams here). And when a person is managing a condition such as yours, even more so! But that's the human condition--that there is precious little we can control, and learning to walk that journey changes things on a fundamental level, almost like a *cellular* level--and we learn to accept it and move calmly forward.

    Keep fighting the good fight!

    ReplyDelete

Post a Comment

Popular posts from this blog

2015 - Check.

It's been over a year since my last update, and it's been interesting to say the least. Prompted by a variety of situations, I found myself in a position where I needed to step back from the bleeder world and focus on myself. First tour: University of Alabama. Roll Tide! I was facing my first semester back in brick and mortar school after finally working out a solid(ish) treatment plan. I was riddled with anxiety and fear that things would spiral out of control again, thus requiring me to medically withdraw. It had become the 'normal' for me where school was concerned, so I was cautious to place any expectations on my return. To everyone's surprise, my treatment plan held up and I was able to get through my first semester with it being relatively uneventful. It was great to be back with my friends and I found my groove. I also started touring colleges, something that blew my mind! There were times I doubted I would ever finish high school, let alone go on to c...
Post a Comment
Read more

The Next Chapter

Validation- something we all strive for. Whether in our personal relationships, our jobs, or in my case, my bleeding disorder, validation is the key to making us feel whole. I've fought for years to get answers as to why my bleeding was prolonged. I've fought for years to get information as to why treatment wasn't working. I, along with my incredible mother, fought for years to get adequate treatment and to be taken seriously by physicians who, at times, had my life in their hands. To say it's been rough would be an understatement, however, I'm glad I never gave up because I wouldn't be feeling the way I am today. On October 31, 2014 I met a brilliant physician who took me seriously. He didn't dismiss my symptoms and he even acknowledged that I was long overdue for treatment. He wasn't scared to try Humate-P and possibly even platelets, which was music to my ears! He acknowledged that I was definitely not your cookie cutter case and that I was extremel...
Post a Comment
Read more

Back to Reality

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...
Post a Comment
Read more