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

My Body is Not My Own

It's not a secret that one of the less glamorous symptoms of bleeding disorders in women is menorrhagia. *Menorrhagia is described as heavy periods, lasting upwards of 7 days with the presence of large clots for more than one day of your period. For women, it's often taboo to talk about our cycles and what our bodies go through every month. But having a bleeding disorder complicates the secrecy that so many women strive for. For me, my periods have always been the most challenging aspect of my bleeding disorder. Like most females with BD's, I've been placed on vigorous courses of hormones to attempt to place a band aid on my body's 'normal' physiology. My last round of oral contraceptives was a low dose estrogen tablet that was used as a last ditch effort before deciding to place a Mirena IUD. I was 14, so in addition to my already (naturally) imbalanced hormones, my body was shocked by this new influx of estrogen. I immediately recognized that what was...
1 comment
Read more

My life. My disorder.

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...
1 comment
Read more