Chats with caregivers, supporters and people affected with and by a bleeding disorder. (Hemophilia, Von Willebrand) This is not a medical advice podcast, this is for inspiration, idea exchange, support and informational purposes only. Always see your HTC or medical professional for any medical advice.
Episode 39 Catch up with Christa from NorCal
Thanks for being patient with all the reposts while I try to iron out our recording issues. First, I couldn’t get Christa’s audio…so we had to redo the entire pod. THEN, my side of the pod was almost inaudible, so after much recreation, here is the final result for part one.
You all know I absolutely LOVE this woman. She is funny, feisty, loving and gets things done. All of my favorite qualities in a human. Part one is pretty tame, but part two coming next month gets a little more crazy 😉
Find Christa and the Female Factor on FB
Episode 38 Prepping Your Younger Child To Take Over Their Care
This pod is about some of the questions listeners have sent in regarding how I have been transitioning my elementary school child into taking control of his care.
I don’t have all the answers. I don’t have 10% of the answers. I do listen and try to pilfer as much good stuff from all the inspiring, more experienced moms I meet though 🙂 so, within grabbing distance of 9%.
I am behind the curve and I don’t worry about it!
My approach is slower then most because I have heard from more than one mom, that I should not rush my child to stick if he is clearly not ready. So, we don’t.
I hope some of these tips help. Please comment with any others you have that have worked well with your family.
Vaughn’s latest H.U. Pod
10 Things to Say Instead of Stop Crying
Thanks to this month’s Sponsor!
Back to School Episode 37
This is a quick pod all about Back to School. YAY! I often over prepare, but only because I am LAZY! I have a base presentation and checklist for who I need to contact and it doesn’t change too much. Do the hard work the first time and then add/subtract each year. See – lazy. Or…brilliant?!
The first time my Severe A went to school, I had color printouts with all the info, laminated for each person that would be coming in contact with him. I used the HFA online presentation and gave an all staff education, I used our all time favorite nurse Kathy as an educator and brought her in as many times as I could. Each year, I review/tweak the routine, meet all the teachers, nurses, admin and after care for a one on one.
As my boy gets older his responsibility grows and the risks change. I find new materials by talking to all the pharma reps and see what cool videos or checklists they have to make the process seamless.
I get a lot of texts and DMS about back to school and try to answer how we did it in the pod. Here are a few resources for you to try…
Tool Kits for Back to School:
Advocating For Your Child at School by Global Genes
Back to School from HFA
Steps for Living – NHF
School Info Page from Shire
Video about Clotting Cascade from Bayer
Enter to Win a Backpack Stuffed with School Supplies:
Leave a comment below, on the H.U. Instagram, Facebook or twitter (retweet please!) with the age group or grade and interests, so I can pick out some supplies that your kid would like to sport this school year. We will pick a random winner the first week in August.
Thank you to this month’s sponsor!
Episode 36 L.A. Aguayo
Welcome to a special episode with friend of the Pod, L.A. Aguayo. Anytime you talk to L.A., you get real talk. We talk about his exciting new fitness challenge, #Hemolife, mental challenges that affect some in the community and general L.A. awesomeness.
Neither L.A. or I are doctors or mental health professionals. We talk about some sensitive issues in this episode. While we do not have the answers, if this conversation brings up any feelings that you need help processing, please call the National Suicide Prevention Hotline 1-800-273-8255.
Sometimes when people are hurting, it helps to know you have someone you can call. Reach out to the people you see and hear around you. Everyone deserves love and support. You don’t need to do this all alone.
As usual, hearing from real life experiences from the community is immensely helpful. Thank you L.A. for being so open and honest with us all.
Ways to Feel Better:
Follow Bloodfeed on IG
Phone a Funny Friend! Just give them a topic and let them ramble…works wonders!!!!
Listen to Vaughn Ripley
34 Ways to Turn Your Bad Mood Around
6 Hacks for Instant Mood Boost
Heard on the Pod:
Listen to the #Hemolife podcast
Join the Fitness Challenge
Follow L.A. on IG
Join the #Hemolife Mental Health Group
Third Circle Theory
Get Ripped at Walmart book
If you need help, call the National Suicide Prevention Hotline
Thanks to this month’s sponsor:
Episode 35 Kari Peepe
Super excited about this month’s guest!
This month we are honored with Kari Peepe’s story of learning about platelet storage pool disorder to the mover and shaker she is today. She is absolutely delightful and after chatting with her for a small bit, I want to be her BFF. You will really enjoy listening to her if you have never had the opportunity.
Kari will inspire you to jump in to the community as you hear her tale unfold. If you have a welcoming chapter, volunteer to help out for an hour or two to dip your toe into the role. If your chapter is far away or not terribly inclusive, do your own thing! Get a bunch of bleeders together and make some IRL connections.
Enjoy the pod and reach out to me if you have any questions or guests you want on the pod.
Heard on the Pod:
A Touch of Scarlett
Storage Pool Disorder
Northern California Chapter
Without sponsors, this podcast would not be possible. Thank you to all who have ever donated or sponsored!
Episode 34 Take Charge of Yourself In 2018 With Vaughn Ripley
I absolutely love talking with Vaughn. After this recording, I was high on life!
We have so many responsibilities and we sometimes forget to make sure we are nurturing ourselves and holding true to our values and goals. Vaughn reminds us to start small. This episode, he offers up some great tips that he uses and we all can implement easily into our daily lives. Use the Kaizen way and add or subtract something small that over time to have a Compound Effect on your life.
Challenge to Kaizen Yourself
Vaughn is the perfect guy to jump start our 2018, especially since most of our resolutions have been broken by now. Re-start today. With Vaughn’s tips on how to make those goals and resolutions manageable and attainable, you will achieve more and more each day. We challenge you to apply one of these tips, or something else you have found and check in with us to tell us your progress.
We have so many public figures in our community that can be our mentors. Vaughn, Patrick Lynch, L.A. Aguayo, Chris Bombardier, Alex Dowsett, and the list goes on and on. They are so down to earth and if you get the chance meet them, please do. If they have the time, they will give you some of it to chat and make a connection. If you can’t make it to the big conferences or chapter events where they are speaking, you can still get virtual mentorship via podcasts, YouTube, magazine articles, and their social media.
Mentioned on the Pod:
Mel Robbins and The 5 Second Rule: Transform your Life, Work, and Confidence with Everyday Courage
Vaughn’s Kaizen Tips:
2 minutes in the morning to decide what that ONE thing is that you will do to get closer to your goal, dream or project. Just one thing! We can do that, right?
Resolutions Every Day – Don’t wait until the beginning of the year to evaluate your life and proclaim you are going to become, be better, be insert you resolution here. Review every day and determine how you will change your response if that situation arises again. If you skipped your workout, either get up and do it now, or figure out how you will make that a non-negotiable tomorrow.
Box-Breathing – get that oxygen to your brain! Watch some Navy Seals talk about it here.
Meditation – start with just a minute and work your way up.
Matti Vann is a fun host that provides great content to the bleeding disorders community!
Awesome Pod cast for Hemophilia and thief families
Great podcast, love listening keep up the good work.
Inspiring and Powerful
Matti really knows how to reach the heart of the people affected by hemophilia. I am always amazed when I hear her and realize she has been a part of the community for such a short time. There was an empty space in this community before she arrived, as if we were waiting for her to arrive and bring us together. This podcast gives me an opportunity to get to know people who I have seen at events but don't really know their story. I am so thankful for Matti and Hemos Unite, I hope you will enjoy the podcasts as much as I do.