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 22 #HAWMC: Hobbies

Today I am to share my favorite hobbies. If you’ve been reading my posts since the beginning of the month then you know that I’ve talked about running, painting, coloring and now that I think about it…writing. While I’ve mentioned these activities as stress relievers they are my hobbies too. I don’t nearly have the time to do all of them but I do enjoy them when I get the chance to participate. I like being creative. It allows me to submerge myself in the craft and not worry about doctor appointments, insurance bills, emails, pharmacy concerns or chronic illness. Pounding pavement helps me work out any stress and let’s face it…it’s good for me too.  What kind of hobbies do you like to do?

Day 21 #HAWMC: Reflection

Reflect on your journey today. What are your thoughts and hopes for the future?

I cannot imagine what my life would be like if it didn't take the path that it is on now. I cannot imagine a life in which I only went to Doctor appointments because the kids needed a well check up or sick visit. I cannot imagine not traveling down to Cincinnati Children's Medical Hospital monthly (sometimes weekly) for the kids various appointments. I cannot imagine what in the world I would blog about!! You see, I wouldn't wish this journey on anyone else but I have to say we've had a pretty good journey. We are blessed with a top notch Children's Hospital not 40 minutes away from our house. We are blessed that I have a voice and can use it, very loudly at times, to advocate for my kids when it comes to care, insurance and with members of Congress. And for those of you that really know me...I'm sure I could find something to blog about!! On this journey we have met some amazing people in the hemophilia community that I wouldn't have met any other way and for that I am grateful. We have been given opportunities that we wouldn't have been given if not for Jackson having hemophilia. Do I wish he didn't have hemophilia...you bet; however, he does and I can't change that fact so why not make the most of it, the situation and the journey?

My thoughts are many as are my hopes for the future. We are grateful to live in a time of prophylaxis

treatment so that we may treat proactively and on demand if needed. We are also grateful to live in a time of new factor products coming to the market that will prolong the life of factor in the body which mean less pokes for my son. I'm not sure what the future holds for us but I am ready to see where it takes us as this is our journey to live. 

Thank you Google images for this 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 19 #HAWMC: Stress Awareness Month

What's the best way to deal with stress? How do you like to let loose to escape common stressors? Share your favorite ways to shake off the stress. #shakeitoff

If you've been following along since the beginning of the month you know I relieve a lot of stress by running. However, one of my favorite things to do is be creative. I love making things; be it painting on a canvas, finding a craft on Pintrest and duplicating it (well, trying to) or coloring. Yes, I said coloring. Many years ago, each December I would purchase a coloring calendar from Mary Engelbreit. Late at night, after my kids where asleep, I would take my calendar, colored pencils and sharpener and give life to my coloring calendar. I spent time shading and creating different shades of color on each monthly page. When my girls were older they would ask to color. I wouldn't let them. It was my special coloring calendar. I know that must sound harsh but it was my stress relief. I think one year I let one of the girls color a little bit but this is one area I am justifiably selfish. I'll share my candy bars, my ice cream, my shower time, the bathroom plus a host of other things but darn it...the coloring calendar was mine!! As the years went on I couldn't find these calendars anymore and by then I had upgrading to a huge wall calendar with different colored post it notes per child due to the increasing activity. Then a few months ago while scrolling through Facebook I came across an ad for an adult coloring book available on Amazon. I immediately searched for it only to find that it was sold out. Last week as I was scrolling Facebook Mary Engelbreit had posted HER coloring book and that it was available for purchase at her store. I immediately clicked the link and purchased the coloring book. I was SO excited when it arrived in the mail last week! I even went out to buy my very own colored pencils (I splurged for the 24 count). I find that when I'm coloring or creating that I am deeply involved with the colors and how I want the page or canvas to look like that I forget everything else. I am at peace. With my busy schedule I don't have much time to be creative but I sure do long for it and enjoy it when I get to create!

One of the pages from the Mary Engelbreit Color Me Coloring Book

Two day post...Day 17 & 18 #HAWMC

Sorry for the double blog post today...yesterday was World Hemophlila day and I was busy attending a lunch meeting with our local hemophilia chpater, the TriState Bleeding Disorder Foundation, as we are planning our 4th annual scavenger hunt through downtown Cincinnati. It is a great time! 

Day 17: Health Tagline

This is a tough one...yesterday I saw several hashtags in coorelation to World Hemophilia Day. While I know "strong" is overused I did see #hemostrong. I like this one as truly our little hemo's ARE strong. Having to endure two, three and sometimes more IV infusions a week is strong. Having to deal with a bleed is strong. Sitting out of fun activities becasue they have a bleed is strong. So, yep, that settles that...#hemostrong. 

Day 18: Summer is Coming! 

What 3 things do I look forward to the most in the summer?

1. NO homeowork
2. Corn on the Cob
3. Bonfires

What do you look forward to doing in the summer?

Thank you Google images for the Summer clipart! 

Day 16: #HAWMC Life Goal

What's one thing that your 10 year old self though you would do? Can I still do it? How would you approach it to make it happen?

Wow...I can't remember what I did last week let alone what I did when I was 10 but if memory serves me than I would've been in 4th grade. I LOVED 4th grade and my teacher, Mrs. Soldo. She didn't have any of her own kids and yet treated us all as if we were her own. She loved each of us. I was really into rainbows. I had the rainbow comforter and pillow sham for my room...I had the rainbow 3/4 length shirt that I would wear to the skating rink...I drew rainbows everywhere. They made me happy. My teacher had given me a folder that was like a color page filled with rainbows. She knew each of us just like that. It was then that I wanted to be a teacher. However, as I grew up and the years went by; what I wanted to do changed over and over again. But when you think about it, I am a teacher. I teach my kids. I teach administrators. I teach people about hemophilia. So while it wasn't my chosen path I ended up teaching anyway!

Thank you Google Images for the rainbow!