To sum up my #HAWMC experience in one word:
supercalifragilisticexpialidocious
Tuesday, April 30, 2013
Day 30 of 30!! This is IT!! Recap #HAWMC
Wow!! I (we) did it! (Sorry...I'm double posting for Captain Jackson's Hemophilia Adventure AND Blue Heel Society) I always enjoy participating in WEGO Health's: Health Activist Writer's Monthly Challenge. The prompts get me to think outside of what I might normally post...which is good and sometimes funny! This month I started out blogging in Florida with our FIRST family vacation since having Jackson, our hemophiliac son, who is five years old. Talk about independence!! It felt great knowing we could infuse our son ourselves...no need for the HTC nurse or home health care. We got this! I nearly ended the month in Texas while attending a Hemophilia convention. So in 30 days I've managed to blog in 3 different states...pretty good for a family who hasn't gone anywhere in years! I hope you have enjoyed following our blog posts everyday and THANK YOU to those who did!! I am humbled by your support. I will tell you this now...I'm taking a break from blogging...just a little one (for those of you that know me; you know I won't be on break for long!!)
To sum up my #HAWMC experience in one word:
To sum up my #HAWMC experience in one word:
Monday, April 29, 2013
Day 29: #HAWMC: Congratulations!
Ugh!! Today I need to post three things I love about myself, things I'm good at or just want to share. I'd rather talk about my kids because after all...if it weren't for them and their chronic illnesses I sure wouldn't be sitting here blogging away!
Because of them I love:
1. The fact I can talk to anyone about their chronic illness.
2. I can advocate. Meeting with lawmakers? No biggie! That's what they are there for...meeting with us, the voters and wanting to hear our story. Doesn't mean they are going to vote our way but at least we can meet with them.
3. I have learned to not judge a book by its cover. Maybe the kid that's throwing a temper tantrum in public isn't misbehaving...maybe he is having sensory overload. The kid that cries everyday before she goes into school may have anxiety issues. My son is covered in bruises...I don't beat him...you can't see his hemophilia. The point is don't be so quick to judge. Just because you can't see it doesn't mean it isn't there.
Because of them I love:
1. The fact I can talk to anyone about their chronic illness.
2. I can advocate. Meeting with lawmakers? No biggie! That's what they are there for...meeting with us, the voters and wanting to hear our story. Doesn't mean they are going to vote our way but at least we can meet with them.
3. I have learned to not judge a book by its cover. Maybe the kid that's throwing a temper tantrum in public isn't misbehaving...maybe he is having sensory overload. The kid that cries everyday before she goes into school may have anxiety issues. My son is covered in bruises...I don't beat him...you can't see his hemophilia. The point is don't be so quick to judge. Just because you can't see it doesn't mean it isn't there.
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| My kids! |
Sunday, April 28, 2013
Day 28: #HAWMC Must Follow
Today I'm going to share with you the top must follow facebook/blogs/pages in the Hemophilia community.
This is great too because I'm sitting here in Texas at the Hemophilia Foundation of America's Symposium where I have spent the past several days meeting some really great people.
1. Stop the Bleeding! A comedic web series. You can find it here. Patrick James Lynch is the man behind this web series and he just so happens to be a hemo himself. What he is doing for the hemophilia community, teens specifically, is truly inspiring. I can't sing enough praises about this man. I stand in awe of his humble, comedic persona and hope that my son will one day do the same great things for his bleeding community.
2. Save One Life, Inc. is a wonderful international nonprofit that provides sponsorship for people with bleeding disorders in developing countries. You can read more about them here. Not having factor available to you when you have a bleed is unacceptable but sadly this happens in developing countries. No one should ever have to go without their life saving medicine.
3. Hemophilia Federation of America or http://www.hemophiliafed.org/. This is a great resource for ALL bleeding disorders.
4. National Hemophilia Foundation or http://www.hemophilia.org/. This is another great resource for ALL bleeding disorders. Both the HFA and NHF have annual conferences to hear the latest on research, parent, caregiver, bleeder break out sessions and a great way to network but more importantly to meet other families going through the same things.
5. Barry Harrde is an inspiring man who lives with hemophilia He is behind the Wheels-for-the-World-with-Barry-Haarde in which he rides a bike for 30 days 3,456 miles and raises $35,000 for the Save One Life, Inc. He is an inspiration not only for riding his bike that long with hemophilia but he is also HIV and Hep C+. He is not letting anything stop him from reaching his goals. I am happy to cheer him on and hope to meet him as he cycles through town!
6. Vaughn Ripley is another inspiring man with hemophilia. He also is HIV and Hep C+. Vaughn and Barry are living life despite the odds of having the the tri-fecta (Hemo, HIV and Hep C). They are an inspiration to me and should be to you too! You can read about him here. He has a book entitled Survivor: One Man's Battle with HIV, Hemophlia and Hepatitis C.
I challenge you to check out one of these facebook pages/websites. I enjoy finding people that inspire me to be a better person and a better advocate for my son, Jackson.
This is great too because I'm sitting here in Texas at the Hemophilia Foundation of America's Symposium where I have spent the past several days meeting some really great people.
1. Stop the Bleeding! A comedic web series. You can find it here. Patrick James Lynch is the man behind this web series and he just so happens to be a hemo himself. What he is doing for the hemophilia community, teens specifically, is truly inspiring. I can't sing enough praises about this man. I stand in awe of his humble, comedic persona and hope that my son will one day do the same great things for his bleeding community.
2. Save One Life, Inc. is a wonderful international nonprofit that provides sponsorship for people with bleeding disorders in developing countries. You can read more about them here. Not having factor available to you when you have a bleed is unacceptable but sadly this happens in developing countries. No one should ever have to go without their life saving medicine.
3. Hemophilia Federation of America or http://www.hemophiliafed.org/. This is a great resource for ALL bleeding disorders.
4. National Hemophilia Foundation or http://www.hemophilia.org/. This is another great resource for ALL bleeding disorders. Both the HFA and NHF have annual conferences to hear the latest on research, parent, caregiver, bleeder break out sessions and a great way to network but more importantly to meet other families going through the same things.
5. Barry Harrde is an inspiring man who lives with hemophilia He is behind the Wheels-for-the-World-with-Barry-Haarde in which he rides a bike for 30 days 3,456 miles and raises $35,000 for the Save One Life, Inc. He is an inspiration not only for riding his bike that long with hemophilia but he is also HIV and Hep C+. He is not letting anything stop him from reaching his goals. I am happy to cheer him on and hope to meet him as he cycles through town!
6. Vaughn Ripley is another inspiring man with hemophilia. He also is HIV and Hep C+. Vaughn and Barry are living life despite the odds of having the the tri-fecta (Hemo, HIV and Hep C). They are an inspiration to me and should be to you too! You can read about him here. He has a book entitled Survivor: One Man's Battle with HIV, Hemophlia and Hepatitis C.
I challenge you to check out one of these facebook pages/websites. I enjoy finding people that inspire me to be a better person and a better advocate for my son, Jackson.
Saturday, April 27, 2013
Day 27: #HAWMC: Titles
If I was to write a book about our life, our community, our health condition, what would it be called? Come up with 5 working titles.
1. The Loving Family Chaos (describes our life perfectly!)
2. Bleeds...there's never a good time for a bleed (ain't nobody got time for that!)
3. Infusing with Love and Factor (need some love and medicine!)
4. Hemophilia: Living and Thriving (because it's true!)
5. Jackson's Hemo-maniac Krew (just because that's how we roll and my son has an obsession with pirates!)
1. The Loving Family Chaos (describes our life perfectly!)
2. Bleeds...there's never a good time for a bleed (ain't nobody got time for that!)
3. Infusing with Love and Factor (need some love and medicine!)
4. Hemophilia: Living and Thriving (because it's true!)
5. Jackson's Hemo-maniac Krew (just because that's how we roll and my son has an obsession with pirates!)
Friday, April 26, 2013
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.
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| Captain Jackson's Hemophilia Adventure |
Wednesday, April 24, 2013
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.
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!
You can check out my Hemophilia Board HERE.
Enjoy!
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