#HAWMC Last Day!!

Today is the last day of the Health Activist Writer's Month Challenge (#HAWMC) for Wego Health. I always love participating in these challenges as if forces me to make time to write and I don't force myself enough. So thank you to all who checked in on my posts thru the month and a BIG thank you to those who stuck it out with me all month long! I am humbled that you take time out of your day to listen to my stories.

And a big thanks to Google Images for providing some options when I had none! 

Day 26 #HAWMC: Make it a Great Day!

As we all know, hemophilia gets in the way sometimes. A bleed can stop us from having fun. A bad stick, be it an IV infusion or a port stick can be awful. Unfortunately, we've all had bad days. But today I'm to share with you 5 tips on how to make a bad day, a good day!

1. Take a deep breath. It's a moment in time...take it minute by minute if you need to but know that it doesn't have to ruin your entire day.

2. Focus on the positive. You've got a bleed...now you have time to watch that series on Netflix that has been on your wish list!!

3. Lean on your family or friends. You know, the supportive ones. And if you don't have one then go on Facebook and chat with the hemophilia community...there is always someone on line!

4. Tomorrow is a new day. Fresh eyes on a new day gives you perspective and the opportunity to be thankful, yes, thankful, even for those crappy days.

5. Get some rest. I know, I know, I need to listen to my own tips but even a 15 minute cat nap can make your attitude and mood that much better. It can give you the added strength to tackle the situation.

I hope you have a great day!!

Thanks Google Images for a fun great day smiley face!! 

Day 25 #HAWMC: WoRd ClOuD!

Day 23 #HAWMC: Writers Choice

Today is writers choice...share a great story, opinion or tip.

The best tip I can give you is to get involved in your community. It doesn't matter if it's your local chapter or the national chapters or on line with a support group. Getting involved helps so much with the "I feel so alone" or the "no one gets it" days. If you are lucky enough to get support within your home and family that is great!! But it doesn't hurt to branch out beyond that. I can't tell you how much it means to me that the hemophilia community is always there for me and my family or how happy I am to be able to give a kind word or send encouragement to another family dealing with hemophilia. It's not just for us as parents either. It's a great way for our kids to meet other kids with hemophilia. It's important for them to be able to find someone who goes through the same things too. So remember...you are NOT alone!!

Thanks to Google Images for this stock photo. 

Day 20 #HAWMC: Travel Time

If you could travel anywhere in the world, where would you go and why? We know traveling with a chronic illness can be challenging, so any tips for others that you can share would be great. 

I'll be honest. We don't really travel. In our almost 21 years of marriage and 10 years of chronic illness being in our lives we have traveled (long distance) four times; Disney in 2006, Chicago in 2011, Texas and Bonita Springs, Florida in 2013. We have traveled by plane and by car. The best tip I can share with you is to use a carry on piece of luggage to pack ALL your medical supplies and if you plan on being gone for a week, pack enough supplies for 2 weeks and a possible worst case scenario. Think about it...there would be nothing worse than trying to locate a pharmacy in a town you are vacationing in the middle of the night because you forgot to bring or ran out of XYZ. Even if you think you won't need it, bring it!! Doctors travel letter...go ahead and get that too. It takes but a minute to request it and can clear any problems that you may encounter at the airport should you have that letter in hand.  It takes some good organizational skills and some careful planning but you can do it! It is a little stressful to be sure but if I packed supplies for my hemophiliac son and two Type 1 diabetic daughters for a week long stay in Florida than you can too!

Traveling with hemophilia and diabetes. 

Day 5 #HAWMC: Breaking News

Happy Easter everyone!! Today's challenge is just that...a challenge. I have to share with you my greatest accomplishments in the last 5 years. Meaning I have to brag on myself for this post; which is sooo NOT me! My positive attitude with a realistic approach is something that I can brag on though. I'm not rainbows, sunshine and pots of gold everyday or any day for that matter as I feel that is just annoyingly gross; at least to me. What I am, is upbeat and a take it all in stride type of gal. I live by the "it could always be worse" which helps me get through the rough patches and makes me grateful for the craziness in my life. I often get asked "how I do it all" and honestly I'm not entirely sure. I kick in to beast mode and just do what needs to be done without a second thought. I also have a great support team that is there for me if I need them. I could share personal accomplishments but really, they are shared accomplishments; be it shared with my hubby, kids, family or community. So, I'll end here...enjoy your Easter!! I'm about to go enjoy some great family time at the Cincinnati Zoo!

Day 4 #HAWMC: Creatures of Habit

We are all creatures of habit both good and bad. This year I'm running the Flying Pig in Cincinnati, Ohio. It is a full and half marathon on Sunday, May 3rd. They also have 5K, 10K, kids run and dog runs the day before. It is the BEST event I've ever participated in over the years. This year I've committed to run the half marathon. I've been training since January 3rd when it was -13 degrees! I have run the half a few times and last year I ran the 10K with my hubby and I've always trained along the way. However, I've joined a running group and I wasn't sure if I was going to like it or not but now I can't imagine NOT joining...I really enjoy it. They have the routes all mapped out so I don't  have to even think about how many miles I'm going and what that translates into when running around my house. I meet new people; which I love! It's just a great group of people! So every Tuesday night and Saturday morning (at the crack of dawn...mind you) I drive about 35 minutes to the running store and go pound pavement.

I didn't always like running...in fact I would cuss while running...I hated it!! But then my eldest daughter started running cross country when she was in middle school and I really didn't want her running her off days by herself. So I ran with her and my cussing had to stop!! Cross country was short lived (thankfully) so I stopped running. Over the years I dabbled with the treadmills but it still wasn't my favorite thing to do. The year my hubby turned 40 was his bucket list year. Being the competitive person that I am I decided to join his bucket list adventures. That's where running came back into my life and I found it actually enjoyable. It became my stress reliever. Oh, yes. The bucket list...let's just say while we both competed in the Warrior Dash and had a blast I ran my first half marathon solo...and I never let him forget it!! :)

Running has become my habit. Sure it's great for me and healthy but I do it more for my mental health. Dealing with the daily stresses of my kids chronic illnesses, insurance, medical bills, Doctor appointments, working, living life...you get the picture...I need an outlet to get this built up stuff out. Pounding pavement works for me. What's your habit?

Bleeds, Bleeders and Beards...oh my!

Have you noticed how hairy it's become lately?! I know I have!! Especially in my house. A few months back...actually, September 1st my mildly hairy husband shaved it all off. He was as smooth as a baby's butt. 

Look at that baby smoothness! 

So, what's the big deal? Well...fellow Hemo friend and Dad, John Bruno, came up with a plan...a movement if you will...

And thanks to fellow Hemo brother, Jay D. Bishop for the awesome design!!

It's all rather hairy if you ask me!! But what better way to raise awareness for Hemophilia OR any bleeding disorder than growing a beard. I know my hubby has been getting a lot of attention with his Grizzly Adams look. To which he happily replies "I'm growing my beard to raise awareness for my son's bleeding disorder, hemophilia". Oh...did I mention they are growing their beards for six months? Just in time for Hemophilia Awareness Month! You can check out the website HERE. The goal is not only to raise awareness but to raise funds for your bleeding disorder charity of choice. We are choosing our local chapter, the TriState Bleeding Disorder Foundation. Our local chapter has been wonderful not only to us but to all the families and individuals in our area. We would love to give back to them as much as they give to us through Educational Days and conferences, outreach events, hemophilia camp and support groups. If you feel so inclined we would love for you to sponsor Joe's beard!! While I'm setting up a fundraising page you can send your tax deductible donation to http://www.tsbdf.com/. Just let them know you are supporting the bleeding community AND some hairy bearded dude named Joe. 

Here's Captain Jackson growing his beard. 

Joe's 9 week picture!! Can you say Grizzly?! 

Surviving the first lost tooth!

I've been bad about blogging lately. It's all good. Busy living life! However, this summer we can check off a milestone for Jackson. It's the same milestone that I've worried about as a Hemo Mom...the dreaded lost tooth. I've known it was coming. His dentist kept telling me for the past year that he has a wiggly tooth at every cleaning we went to. But I still worried.

How would he lose it?

Would it be the kind that hangs on for dear life?

Would it be wiggly for months?

Would it bleed?

So I get a call while at work. My kids know not to call me unless someone is dead, dying, bleeding or broken. Texting is fine for other things but calls are left for the serious issues. I answer my phone and it's Jackson on his sister's phone. "Mommy? I lost my tooth!!! I can't find it!"

I calmly reply "congratulations!! And what do mean you can't find it? Put your sister on the phone."

His sister then tells me they were looking at themselves in the mirror. Being all silly and practicing various smiles when she notices he has an open space between his teeth. The good thing: he lost it and didn't even know it AND he didn't bleed one drop, not even a speck. Not that it would've been a big deal as we would have administered Amicar and factored up. But that he was able to have a non-bloody lose tooth event was great! I realize that they won't all be this way. But I'll be happy with this little victory!

The photo his sister took and text me just after losing his tooth!

Since we never did recover the tooth we wrote a letter to the Tooth Fairy to let her know! 

Day 26: Pain Free Day #HAWMC

Today's post asks what day would you have used for a pain free pass.

I don't think I could pick one particular day...I would say everyday we have to infuse our son with factor. Now, it's not such a big deal as he has gotten used to the pain of the butterfly needle and/or he has enough scar tissue built up that he doesn't feel it when we stick him. But when he was little I hated it. We went down to Children's once a week (at first) and I would have to request the IV team come to access his veins. He would scream. The older he got he would fight. He is a strong kid. I would basically have to do some WWF maneuver to subdue him in order for the IV team to stick him. Once he was stuck he was good. It was just the anxiety of the stick. He knew it was coming and couldn't do anything about it. But when your holding down your then infant son you feel like the worst parent in the world. Despite knowing that he needs his medicine and that we have to hurt him to make him better. It was a hard concept to grasp. It's gotten way better now but at first it was a rough go. 

So to answer the question...I would take away the pain of every infusion for the past 5 years. 

Captain Jackson's Hemophilia Adventure

Day 25: #HAWMC: Learning

Today I would like to share with you how to find your voice...to advocate.

I've always had a voice...it was quiet at first but then blossomed into the boisterous sound that it is.

If I had to pin point it I would say it started when my middle daughter was diagnosed with Type 1 diabetes. I was already pretty vocal in meeting with local law makers and telling them our story. So it seemed natural to do the same when our son was diagnosed with hemophilia.

I am one of those types of people that throw myself into helping. Especially when it comes to my kids. I want to help. I want to help others. I want to make a difference. For me, it's better than sitting around doing nothing and singing "woe is me". It makes me active. It makes me research. It makes me invested in how law makers are seeing our community and what I can do to change that. Helping is how I deal with things. Helping is how I cope.

For me, it started small. I attended an event. Then I offered my help with anything. Which led to helping on committees to plan events. Which led to being a Board Member at our local chapter. Then I started reaching out locally then statewide to members of Congress talking about hemophilia. Which then led to reaching out nationally...blogging...talking...interacting...advocating.

So how can I share with you the ancient Chinese secret (I'm dating myself with that reference!!) of finding your voice? Simple...open your mouth and say something. Anything. Educate your friends about your bleeding disorder. The more you talk about it the more people will listen and the more people will learn. Maybe speaking locally or nationally isn't your thing...that's fine but start somewhere. You don't have to be the loudest...but we need all decibels to be heard.

Wordless Wednesday...Day 24 #HAWMC

Today we had to create a Pinterest Board and pin 3 things.

You can check out my  Hemophilia Board HERE.

Enjoy!

Day 23: #HAWMC: Technology

Today I am to write about how my life would change if there were no social media.

NO social media.

How did we survive BEFORE social media!?

Wow...I imagine a ton of free time that I would have.

However...

I wouldn't be able to reach to a friend across the US to ask questions about Hemophilia.

I wouldn't be able to talk to other parents who are having the same issues I am with my son.

I wouldn't be able to connect to a community that is united by bleeding disorders.

Who gets it.

Who understands.

Who knows.

Who has walked and is walking in my shoes.

It would be lonely.

Don't get me wrong. I have wonderful people here in my hometown that I connect with. Sometimes I can't always meet up or attend events so it's nice to be able to catch up with them on Facebook. It's comforting to know that if I'm on the way to the ER with my son and a bleed I can communicate with the entire community if I need to.

The bleeding community is our family. We aren't related by blood...well, yeah, we kinda are in a way, and I can't imagine not being able to connect with our family for support.

Thank goodness for social media.

Thank goodness for our bleeding community family.

Day 22: #HAWMC: Day to Day

Write about something ordinary, something simple, perhaps overlooked, that's inspiring to you that fuels your activism.

I've talked about this before (I think...it's late, I'm tired) the volunteers that have no direct connection to Hemophilia yet make it their passion; just like mine. I stand in awe of these people who have no idea, or some idea, of what a Hemophiliac and their caregivers go through and stand right along side of me and fight the good fight.

I find that super inspiring.

I remember talking to a friend some 8 years ago (before Hemophilia or Type 1 diabetes entered our world) and wanting to find an area to volunteer for and help out. We both had kids so we decided we would help our local Children's Hospital. We felt overwhelmed...where to start, what to do, to whom to help. We just knew we wanted to help kids. Then one week later  I found my passion when my middle daughter was diagnosed with diabetes. Then three years later I found another passion, and another floor of the hospital, hemophilia and then four years later with diabetes yet again.

Through my passions I have met some great people. Some who have connections to the bleeding community and some who don't have any. I sit there wondering why Hemophilia. Out of all the diseases and disorders out there...you chose Hemophilia. I am grateful and inspired by you, the unsung hero, the person who helps to help because they can. The person who doesn't have to attend meetings, help with fundraising projects, meet with local and state officials but chooses to do so, willingly!!

So, THANK YOU!! For all your hard work and dedication.

I am in awe, humbled and inspired by you!

Day 17: #HAWMC: Wordless Wednesday...create a Wordle

HEMOPHILIA