Wednesday, June 1, 2011

"I've Got This."



There are two things that can make living with a bleeding disorder extremely difficult: 1) living life undiagnosed and having to undergo numerous hospital visits or heavy periods without knowing why, and 2) being scared and unprepared.

As a young lady who has lived with Von Willebrand's Disease for all seventeen years of her life, I understand the importance of being brave and being ready. Too many times girls let their bleeding disorders (even if they're mild) run their lives. That's not how it's supposed to go! You control your bleeding disorder instead of it controlling you. Fear of being weird or looked upon as an outcast because of your chronic illness will result in nothing but self pity and emptiness. We live different and sometimes more frustrating lives than the average teen girl, but it makes us stronger and braver!

What are some bleeding disorder issues that cause you to panic when you think about them? How do you handle situations when you need to self-administer medical attention? Are you constantly worrying that someone will find out about your bleeding disorder? If so, then it's time you realized the unique-ness of your disorder and how you can keep it under control.

"I've got this."


That's my motto when dealing with my disorder. :) If something goes wrong (and you don't need to be hospitalized or seen by a doctor/hematologist) then just take a deep breath, calm down and say, "Yeah, I've got this.".

My bleeding disorder isn't severe, I've only been hospitalized once and (so far) have dealt with all injuries on my own with a little help from my mom and dad. I have a moderate-mild type of VWD, but there are still a few things that I need to take a hold of and deal with. Things that all girls with bleeding disorders must learn to cope with.

But what if you're scared to deal with it? Or worried that you can't? What if something goes horribly wrong and you bleed all over yourself in front of everyone?!

Relax. :) You've got this, remember?

I'm going to give a few examples of how I've taken control of my bleeding disorder and moved from letting my parent's handle it to taking care of it myself.

Periods. The most dreaded and probably worst part of having a bleeding disorder if you're a girl! What do you do?

How I Handle It:
*I take medication consistently at the same time every day to prevent periods
*I make sure that if I do have a breakthrough bleed I have medicine to take that lessens the bleeding (Amicar or Lysteda)
*I always, always, ALWAYS keep at least 5-6 pads in my purse, backpack and suitcase just in case I start bleeding
*I journal my periods so if my Hematologist has any questions I can show them the charts
*I keep a jacket with me in my backpack in case I stain my jeans and need to cover it up until I get home (other girls keep an extra pair of underwear or shorts with them in cases of very heavy bleeding)
*I make sure to eat healthy (lots of iron!), get lots of sleep and avoid sleepovers and pool parties. ;)

But there are issues besides periods, right? Like regular bleeds and injuries! What about those?

How I Handle It:
*Key in this, in my opinion, is being comfortable talking about your bleeding disorder with the people you're with (especially as we girls get older and start spending more and more time out and away from home!)
*I keep a First Aid kit in my backpack that has band-aids, QR powder, a gauze pad or two and a couple pads
*I have at least two good ice packs that are constantly in my freezer and ready to go when I need them
*If I'm out and something happens, I don't stay quiet and pretend like everything's OK, I'll ask for band-aids or an ice pack and just say that it's no big deal so long as I take a few minutes off to deal with the injury
*If I'm going out of town I make sure to bring a travel first-aid kit (I also keep a Medical Emergency ID Card in my wallet and backpack)
*I make sure my friends know about my bleeding disorder and why I can't participate in certain sports
*(Again, this deals with being out and away from home) I always wear my Medical ID Bracelet and never leave home without it!

In order to take care of yourself, you need to know how to take care of your bleeding disorder. Educate yourself! Read (reliable material that has been approved by doctors, not Yahoo! Answers) and study and ask questions when you go for check-ups at your HTC! And don't stay quiet. Don't ever keep quiet because you're embarrassed.

Also, talk to other girls with bleeding disorders and see how they prep for school and work while living with a bleeding disorder! What tricks have worked for them? How can you swap information? Learn, live and grow. :) And be proud of who you are!

Who you are because of your bleeding disorder is very special. You're unique and strong. Live like it! Remember to take care of yourself, remember to take control of your bleeding disorder and most importantly remember to be brave!

5 comments:

Taylor P. said...

Hi, Im 17 and have von wille brans disorder. I've been on the depo pro vera since i was 11 you should try it. it's a every 3 months shot that is bc and no period. i bled so heavily i almost died. u should try the shot it'll let you do more things you love.

Jamie said...

Taylor: I've heard that it makes you gain a lot of weight though! Does it? :P

Taylor P said...

Yes, but as long as you eat healthy and ignore the cravings it gives. and also excersize nomally everyday then it will help. im going today to get a plan to lose weight and eat more healthy.

Cheryl said...

I’ve been asked to give a talk at the WFH Congress next summer. They specifically requested that I participate in the session titled “E-communication and pitfalls” with the topic of “Patient and Family Blogs”.
I am doing a little research and would like to ask your thoughts on your blogging experience. I will quote you if I use your responses.
Perhaps you could tell me one reason why you enjoy blogging and on the flip side one thing you feel cautious about when blogging.
In any case, thank you for your thoughts and thank you for your blogs!
Cheryl
email: mygirlsblood@yahoo.com

adam mark said...

Your story is very helpful to inspire anyone and to increase awareness about Von Willebrand's Disease and other inherited bleeding disorders . This will really help peoples. I will share your post with peoples who are suffered from bleeding disorders and other disorders.