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 😉
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.
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…
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.
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.
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.
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.
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.
I am super excited about this month’s guest. I met him when I first landed in town at an Arizona Hemophilia Association event. He is a student and has a brain that won’t quit. He is one of the wisest people I know and constantly inspires me with his insight and enthusiasm for life. He makes a positive impact on all who are lucky to meet him and I am counting myself as one of the lucky ones.
Hello everybody. First, let me just say my heart is with you Houston. I am assuming that the foundation there will be needing some assistance so this month’s donation from HU will be going to the NHF Relief Fund.
I can’t donate a lot but I always try to donate where I can. Every dollar makes a difference. Stay strong everybody, as you know everything in life is temporary. That may not seem helpful when things are so bad, but if it helps to remember that, then it helps.
This month I’ve also been thinking about an Instagram post from istrive2thrive. He has a picture of a bruise from a poke from a phlebotomist. The phlebotomist didn’t comply to his request for a higher gauge needle and he ended up bruised, swollen and bleeding.
This reminded me that we need to learn our lessons, share our stories and stick to our guns. It also brought back some real life education I have learned in our hemophilia journey. I wanted to share two personal stories about how I learned to push for what I want.
These are my experiences, but if some of you are going through something similar, I thought maybe you could benefit from hearing some of our story. One of the stories is written below. Both of the stories are in the podcast.
When I was brand new and freshly inducted into the Hemo Hana, we were on an important study. After it was over, I was put on a factor. For years everything seemed fine. But as my little boy grew, the factor didn’t seem to be working as well as it once did. His legs were covered in massive bruises, almost always. I kept being told that bruises are normal for kids, but looking around the playground, they did not seem too normal, even for a Hemo Kid.
By that time I had done my research and requested to switch medications. At first I was told to increase the dose or change the factor schedule and I did go along with that. I knew in my heart that wasn’t what I wanted to do. Buy, logically, why wouldn’t we try that first?
Over six months, to a year I repeatedly asked for a specific medication and was not ever given the prescription that I wanted. With each visit or email or phone call I would request information on a new medication, or an outright switch. Each time the subject was broached, I decided not to fight for it and to just try again when I would call back in another month.
As luck would have it, I decided to move. Landing in my new town with a new doctor I was extremely adamant on the new product that I wanted. We finally got our new product and it was incredible. I immediately saw a difference. There were no hematomas covering my kid I could actually see his legs again. It was such a drastic difference I was shocked.
Then, I immediately kicked myself for not being more firm and getting the meds switched. Hindsight is always 20/20 but my kid have could have been bruise freer for a year earlier, had I just pushed a little bit harder.
So in relating that story the only thing that I am trying to convey is that for me personally switching or changing something in my son’s care ended up having a hugely beneficial result. I encourage you all to do your due diligence do your research and then really put your HTC team to task as a partner in the care you receive.
You along with your team your medical team are exactly that: a team. If something doesn’t jive with you then you need to push get the answers that you want and keep asking questions until you’re satisfied that you have exhausted everything.
There are a lot of choices out there and I know that insurance is being really funky lately but if your decision that you made five, six, ten years ago isn’t working, there is no harm in doing more research into something else. Whether it be a new product or a new regimen. Things change and I think that we sometimes get a little complacent in our care.
You all know your body, or your kid’s body, if they’re younger. Don’t be afraid to ask for what you want.
Make sure that you also document everything. I’ll give you what I do which is pretty basic. When I started asking for the new Factor, every single nose bleed, every single incident at school it’s all in my yearly calendar. It is a old school 99 cent store weekly planner and it has every single thing I need. It’s where I record all of the school meetings that we’ve had and everything that pertains to my son’s health. Personally, I find it more accessible and easier to search because I am so used to my paper planner. I realize that there are tons of apps out there that will probably do the same thing and if you are an app person then please start utilizing your app to it’s fullest potential.
And there you go. For our other lesson about professionals who poke, listen to the pod 🙂
If you’re in Tucson, I would love to meet you I’ll be at the annual meeting make sure that you stop by and say hi.
Hemos Unite is proud to host another incredible guest who is proving that you can live a rich, fulfilling life with a rare blood disorder. I feel so lucky that we have such empowering people in our community.
Meet Cassandra, an accomplished woman in Southern Arizona who is speaking about her Glanzmann Thrombasthenia in an effort to educate more people about bleeding disorders. While GT is extremely rare (roughly 300 people according to NORD), it is a blood disorder that is related to Hemophilia, Bernard-Soulier, Storage Pool Disease, and May-Hegglin.
Cassandra has some great ideas about using her love of the arts to promote education and is willing to give her time and energy to answer questions. I hope you enjoy getting to know her and will reach out with any ideas you may have to make an impact in your community. Brainstorming with other members of the community benefits everyone.
I met Jessica at an Arizona Hemophilia Association in the first month that we landed in Tucson. She worked for industry at the time and she was just so genuine, we instantly connected. She knows so many people in the community, it has been wonderful knowing I can call on her to introduce me to people or help me find a resource.
I personally like it when Hemo moms or Hemophiliacs work in industry. They get me. I am savvy enough to separate what they do for a living from who they are as a member of the community. I know there are some bad apples out there. So when you can find someone you connect with, no matter who they work for, try to work on the relationship because you never know when the people that cross your path are there for a reason.
Many of the moms that work in industry are some of my closest friends. As we are making decisions for our kids, we take in all the information from the HTC, our friends, family and other moms, but the ultimate decision is with the parent. I was always second guessing myself in the beginning. Thankfully, there is a great network for moms to rely on. Make sure you have a good group of experienced moms in your Hemo Tribe. Jess is part of my tribe.
Jessica is a great resource for you if you have questions or just want to have someone who will listen to you without any judgment. I am not on service with her and wanted you to know that I strive to bring you people and information that have helped me in my journey, no matter what they do for a living.
We talk tips and tricks, her Hemophilia journey and the lessons we have learned along the way. We both do not see Hemophilia as a negative aspect, just a fact of life. Focusing on the positive aspects of the disorder – the empowerment from being able to stand up for your kids, the friends that we would never have made, the resilience that the kids build