Skip to main content

A Bittersweet Reminder

   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 GYN". Has he suddenly become a hematologist? Yes, he's amazing and has come up with a treatment plan that until a month ago was life-changing. My quality of life improved drastically. But now I'm back to bleeding and being miserable and I'm unable to do the things that teenagers are supposed to do. My disorder has prevented me from being able to attend school. It has limited me on socializing with my friends. So I'm back to my attitude being "what now".
  There are some pros and cons, I've found, with conforming to this new attitude. Pro: I'm actively pushing my team to find something that will work for me. I'm advocating for myself more than I ever have before. These are both great things. On the flipside, I'm in a constant pattern of searching for answers that I might never get. I'm pushing myself into a wall instead of making metaphorical lemonade and to be completely honest it's exhausting.
  Thus brings about the title of this post. These past few weeks have reminded me that I am living with a disorder that they can't specify and that they can't explain. This is a journey that I will continue to endure for the rest of my life. There are going to be highs and lows, good days and bad days. It sucks to live in constant limbo and a constant unknown. However, if I didn't have this disorder and if I chose to keep quiet and live an isolated life I wouldn't be giving myself the opportunity to share my story and spread awareness. I've learned recently that I'm not the only young lady dealing with a mysterious bleeding disorder that the doctors are unable to diagnose correctly, if at all. This discovery has made it all worth it. I'll take the crappy appointments and the constant limbo if it means that I can sit down and write it all out and acknowledge that this IS real and advocate for my fellow bleeders. If given the opportunity to continue living with my disorder or forget it ever happened, I wouldn't change a thing. I love who I've become throughout this journey and I can't wait to see where it continues to take me.

Comments

  1. Ms. GlorsoApril 11, 2014 at 3:05 PM

    I hope that your medical team can find you some answers! Let me know if there's anything you want me to search in the medical literature, or other ways I might be able to help.

    I'm glad you have your blog, so you can continue to reach out no matter what. What a great privilege our lives are, and I'm glad you're sharing your journey with us all!

    ReplyDelete
    Replies
    1. UnknownApril 11, 2014 at 5:50 PM

      Ms. Glorso,

      Thank you so much for you kind words and support. It makes everything a little bit easier to get through:)

      Delete
  2. UnknownMay 22, 2014 at 10:53 AM

    Hang in there, let me know if you want to talk... xo

    ReplyDelete

Post a Comment

Popular posts from this blog

A Breath of Fresh Air

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...
Post a Comment
Read more

Anxiously Waiting

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...
Post a Comment
Read more

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