Recently my mother had a stroke then a month later had a heart attack. After her stroke I wrote her doctor information and all her meds ,therapy stuff in my EDC . When she had her heart attack I had all her information with me, my sister got to the hospital first and when I arrived she was of course in a nervous worried state ,the doctors was asking her what meds she was on.. I pulled out my book and gave him the lists . A nurse actually said well you don't see that everyday lol since then I made the same lists for my sister and my mom to keep with them. It really does save time and is helpful to keep information with you . I even do this for my dogs 😁 (my mom is doing great btw) Love your videos .
Even after 35 years of being on a journey so close to yours (the rare disease, drs, injections, therapies, etc), it still helps to hear I’m not alone. Thank you. You’re doing a great job of record-keeping!
I LOVE the Holland poem! I am a special education teacher and have shared this with parents after the are given the news that their child requires special education.
As an adult who has Cerebral Palsy ( cp for those that know the lingo), I am 43 yrs old and living for the moment I am staying in a nursing home. The details of why would just clutter your comments section. I thank you for myself, your little girl, and the lives you touch with your activity in your section of our world. As an adult now and most of my support system skyward. My mother gave me the option at 21 of keeping track of my own illness with her reading the notebooks and commenting when she needed to or if i was in an overwhelming situation such as the last fall that put me here and then her passing. I now keep my own "illness" planner and a separate planner for my own interests. That because if you dwell only on the illness and not the person. the person can fall into the trap of forgetting they arent only the illness they were born with. I keep cp in its binder and the majority of what makes me feel like a person in another. But I had to take the time to applaud how organized and bravely your sharing this journey and educating so many
Thank you so much for commenting. I love that you keep CO in its binder and separate. What a great visual that says you are so much more than a diagnosis. I'm so glad you said hello. I'm sorry for your loss - it sounds like your mom was truly lovely. What an empowering choice she created for you. Please take care. I hope you have a wonderful day ❤
So eye opening-all that you do-it must have been so difficult to share this. Having a 15 month old, I cannot imagine the emotions, energy, mental strength you maintain to embrace this and empower yourself and your family. Moved me to tears thinking about it. You are amazing 🌷💕
Its nice to know that we aren't alone. Thank you for sharing how you keep things and your process. It was really helpful and eye opening. Going to read the poem now. XOXO
I actually had to watch this in bits because it hits so close to home. Thank you so much for sharing and giving me more ideas of things I should be keeping in my EDC for our son with special needs. ❤️
Oh wow you are so organized! My daughter has cystic fibrosis and in the last ten years since she was diagnosed I have had a terrible time trying to keep notes and keep things organized. Most of my notes have ended up getting lost and now I have very little to refer to. You totally inspired me to start a new TN specifically to track my daughters health and I am going to ask the hospital to give me her record chart for a few hours so I can take info from it that I might need to update my own records. I think somehow I will feel safer and more comforted if I have it all in one place! Thanks. Hope your daughter is doing well and stay strong mama. 💕
Thank you for your video. My youngest daughter has severe migraines, autism with behavioral symptoms. You gave me a lot to think about to put in my everyday carry planner. Thanks
This was a wonderful video. So helpful for me and my six-year-old as we navigate through trying to figure out what he might be ultimately diagnosed with - ADD, ADHD, all the DDs... and likely my diagnosis for the same. I am learning a lot as I go. Thank you for sharing this.
Thank you for sharing how you organize everything. You gave me some good ideas, I was putting everything in one place which now I realize doesn’t help bc not everything is needed every time! Doh!!
That's how I started too! It got heavy carrying handouts from the dietitian and primary care (for me at home) to the specialist appts 😂 I still keep/hoard them, but at least not hauling them around!
I can totally relate to this .... I knew in utero that something was wrong with my daughter but nobody listened to me... my daughter had issue after issue growing up and it was so subtle the decline that I even sometimes could justify it as well as believing that I must be crazy because the doctor's would literally tell me this.... finally at 15 years old we got a diagnosis and I was right all along.... my daughter had been born with congenital heart defects and because they weren't fixed/addressed she developed two rare diseases because of that. My daughter uses oxygen and is on IV medication to control her illnesses. I have a binder ( a 3" that is zippered and I only keep the current year with monthly tabs and any recurrent testing heart caths, echos, PFT's etc from the previous year until she has new ones) also that I take everywhere with us as well as a library of binders over the last ten years of her diagnosis and prior. I love your digitized form and may adapt this myself as I am still her caregiver and handle the administrative aspects of her care. I really dislike seeing a new doctor because of the rarity of her diseases a lot of doctor's do not know what it is or how to address it and have even refuse to take her as a patient... I am sure this is something you have dealt with too. I have also found for me personally that volunteering within the community helps me by helping others navigating the disease process and I have been doing this for almost as long as she's been diagnosed.
Thank you for sharing how you organize everything. You gave me some good ideas, I was putting everything in one place which now I realize doesn’t help bc not everything is needed every time! Doh!!
That's how I started too! It got heavy carrying handouts from the dietitian and primary care (for me at home) to the specialist appts 😂 I still keep/hoard them, but at least not hauling them around!
Recently my mother had a stroke then a month later had a heart attack. After her stroke I wrote her doctor information and all her meds ,therapy stuff in my EDC . When she had her heart attack I had all her information with me, my sister got to the hospital first and when I arrived she was of course in a nervous worried state ,the doctors was asking her what meds she was on.. I pulled out my book and gave him the lists . A nurse actually said well you don't see that everyday lol since then I made the same lists for my sister and my mom to keep with them. It really does save time and is helpful to keep information with you . I even do this for my dogs 😁 (my mom is doing great btw)
Love your videos .
I'm glad your mom is doing well! She's lucky to have you, as is your family. Preparedness can make all the difference.
Even after 35 years of being on a journey so close to yours (the rare disease, drs, injections, therapies, etc), it still helps to hear I’m not alone. Thank you. You’re doing a great job of record-keeping!
Thank you for blazing a trail! It's always great to hear from others who have been doing this longer. One day at a time, we can do it 🖤
I LOVE the Holland poem! I am a special education teacher and have shared this with parents after the are given the news that their child requires special education.
Thank you for doing so and thank you for being you! You are so appreciated 🖤
As an adult who has Cerebral Palsy ( cp for those that know the lingo), I am 43 yrs old and living for the moment I am staying in a nursing home. The details of why would just clutter your comments section. I thank you for myself, your little girl, and the lives you touch with your activity in your section of our world. As an adult now and most of my support system skyward. My mother gave me the option at 21 of keeping track of my own illness with her reading the notebooks and commenting when she needed to or if i was in an overwhelming situation such as the last fall that put me here and then her passing. I now keep my own "illness" planner and a separate planner for my own interests. That because if you dwell only on the illness and not the person. the person can fall into the trap of forgetting they arent only the illness they were born with. I keep cp in its binder and the majority of what makes me feel like a person in another. But I had to take the time to applaud how organized and bravely your sharing this journey and educating so many
Thank you so much for commenting. I love that you keep CO in its binder and separate. What a great visual that says you are so much more than a diagnosis. I'm so glad you said hello. I'm sorry for your loss - it sounds like your mom was truly lovely. What an empowering choice she created for you. Please take care. I hope you have a wonderful day ❤
So eye opening-all that you do-it must have been so difficult to share this. Having a 15 month old, I cannot imagine the emotions, energy, mental strength you maintain to embrace this and empower yourself and your family. Moved me to tears thinking about it. You are amazing 🌷💕
Thank you for your very kind words 🖤
Its nice to know that we aren't alone. Thank you for sharing how you keep things and your process. It was really helpful and eye opening. Going to read the poem now. XOXO
You are so welcome 🖤🖤
😀 so happy to see this pop up. Can’t wait to see this. God bless you and your babies.
Thank you Monique 🖤🖤
This is a really good video. I admire your organization!
Thank you!
I actually had to watch this in bits because it hits so close to home. Thank you so much for sharing and giving me more ideas of things I should be keeping in my EDC for our son with special needs. ❤️
I am so glad it was helpful. We're never alone on this journey 🖤
Oh wow you are so organized! My daughter has cystic fibrosis and in the last ten years since she was diagnosed I have had a terrible time trying to keep notes and keep things organized. Most of my notes have ended up getting lost and now I have very little to refer to. You totally inspired me to start a new TN specifically to track my daughters health and I am going to ask the hospital to give me her record chart for a few hours so I can take info from it that I might need to update my own records. I think somehow I will feel safer and more comforted if I have it all in one place! Thanks. Hope your daughter is doing well and stay strong mama. 💕
Thank you for your video. My youngest daughter has severe migraines, autism with behavioral symptoms. You gave me a lot to think about to put in my everyday carry planner. Thanks
You are very welcome. Best wishes to her and you 🖤
This was a wonderful video. So helpful for me and my six-year-old as we navigate through trying to figure out what he might be ultimately diagnosed with - ADD, ADHD, all the DDs... and likely my diagnosis for the same. I am learning a lot as I go. Thank you for sharing this.
You are so welcome. Best wishes on your journey!
Thank you for sharing how you organize everything. You gave me some good ideas, I was putting everything in one place which now I realize doesn’t help bc not everything is needed every time! Doh!!
That's how I started too! It got heavy carrying handouts from the dietitian and primary care (for me at home) to the specialist appts 😂 I still keep/hoard them, but at least not hauling them around!
I can totally relate to this .... I knew in utero that something was wrong with my daughter but nobody listened to me... my daughter had issue after issue growing up and it was so subtle the decline that I even sometimes could justify it as well as believing that I must be crazy because the doctor's would literally tell me this.... finally at 15 years old we got a diagnosis and I was right all along.... my daughter had been born with congenital heart defects and because they weren't fixed/addressed she developed two rare diseases because of that. My daughter uses oxygen and is on IV medication to control her illnesses. I have a binder ( a 3" that is zippered and I only keep the current year with monthly tabs and any recurrent testing heart caths, echos, PFT's etc from the previous year until she has new ones) also that I take everywhere with us as well as a library of binders over the last ten years of her diagnosis and prior. I love your digitized form and may adapt this myself as I am still her caregiver and handle the administrative aspects of her care. I really dislike seeing a new doctor because of the rarity of her diseases a lot of doctor's do not know what it is or how to address it and have even refuse to take her as a patient... I am sure this is something you have dealt with too. I have also found for me personally that volunteering within the community helps me by helping others navigating the disease process and I have been doing this for almost as long as she's been diagnosed.
i love it
💜💜💜
Thank you for sharing how you organize everything. You gave me some good ideas, I was putting everything in one place which now I realize doesn’t help bc not everything is needed every time! Doh!!
That's how I started too! It got heavy carrying handouts from the dietitian and primary care (for me at home) to the specialist appts 😂 I still keep/hoard them, but at least not hauling them around!