Congrats, girl, for doing that! I am 70 yrs old and recently diagnosed with MS. I may have had it for decades but no one picked up on it but my physical therapist . Power on, girl.
this message made me happy to see. I'm glad you finally got diagnosed, and this message was so nice to see as someone starting their diagnosis journey for chronic illnesses! Hope you are well
You're very wise to be making a binder of your medical history. Even though I see the same general practitioner every year, he is so short of time to even give my hospital chart even a cursory review, that I have to tell him the same vital basic information every single year. Well done, getting organized and taking charge of your own health care!
I know this is an older video but I have to say thank you so much for this video! I'm only 16 but I am already starting to see a bunch of doctors to try to diagnose my own Mystery Condition (very probably EDS) and I have really debilitating executive dysfunction bc of developmental disabilities which makes it hard to keep track of things regardless of how important, so this is really helpful!! I will have to use it, and maybe introduce my mom to the idea, since she could really use one too! Thank you!!
I have 24 years of medical tests and information. My Mom used to keep them all stuffed into a binder but all those papers became too much (and the giant binder wouldn't close anymore) so she and I sat down and went through the entire "Great Big Book of Everything" and made a "Little Big Book of Everything" It's all on our computers through spreadsheets. It has a full list of every surgery I have had and which doctors performed, tests, medications, and information about my disease. When I update the surgeries or information I just print a new sheet and plop it in the binder. I REALLY like your idea of journaling. i think I'm going to find a way to incorporate that into my system. I can see it being handy also for what medications make me feel what or do/ do not work.
I bring one of these to all of my appointments! I call it my health binder. I keep different sections for Tests, Symptoms Logs, and Results. It always has helped doctors take me more seriously, and make my 30 minutes with the doctor be more useful!
Omg you're so organized 💯🙌 Goals. I literally just carry around a giant reusable grocery bag with all the random papers and notes in it. ~*~Aquarius~*~
Just watched this as trying to organize with 3 autoimmune diseases plus diabetes lots of paperwork. At one point I had 11 doctors, but now only 4. Only thing I would add is a section by doctor listing not only symptoms but questions you think of for that doctor. I've learned I have to do that or I'll forget to ask the questions.
do you think it's possible to go into more detail about this binder??? I love this idea but I can't grasp how to go about making one myself. also unrelated, when you describe Chronic pain, I feel like I can't relate. I feel that my pain isn't enough to be chronic pain even tho I understand that everyone is different. I feel like I would be taking terms that don't belong to me. do I "qualify" as a spoonie??? even if I have green light days or wake up with green lights and can end days with red lights??? wouldn't your traffic lights be different than mine???
Thank you for the advice!! It really is helpful and I appreciate it. I have EDS and I have a Neurologist, Women’s Health, Eye Doctor and a Cardiologist and who knows what might be next on the roster!
I just bought all these similar supplies, and have all my records, scans etc into two filled bags. So thank you. Fir this. I'm going to finally do it. New subbie btw. But yes after 3 years of non stop appts... and yes journal- for meds and symptoms. Going to rewatch this study learn and do.
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You should see my spoonie binder! I have one section for test results, organize by year (8 years and counting!), one section for handouts and resources I got at chronic pain rehab, and one section for receipts and forms I have to fill out.
I’m half Leo half Virgo!! I always aesthetically write current symptom lists and descriptions of how life is before every doctors appt (don’t get me wrong they take a week and 4 drafts) and it’s really helpful
I've never tried to invest the energy to do this. Almost every doc I've seen sort of freaks if I have a single sheet of paper with me at appointments. I'm afraid of how I'd be treated if I came in with a binder.
This is a great idea. I have this one large envelope type situation (secured by Velcro) that I keep everything in, but a binder would be far more efficient.
Ahhhh thank you so much! This helps so much as I been struggling getting organized too, and have a binder but haven't organized it quite right yet. Yay!!! Your's look SO awesome. I love it. I hope it helps a lot and i'm super ready to work on mine now cuz of your awesomeness!! thank you!
This is a great idea! I have numerous folders with all of my medical and surgical records going back to 2005 and if I need to find something specific it takes forever. I've been meaning to organize it all, and I love the binder idea. Actually, scratch that I have ALL of my records, I have MOST. My disabilities are psych (bipolar [severe depression], generalized anxiety disorder, and ptsd. I don't want my psych records because they are more subjective and don't want to read them. However I have info on my treatment and hospitalizations if other docs need them. Ok, I'm done babbling! Lol :) Oh, I also have a suggestion about the 'index' you're planning to make. I have a 2 page word doc that I keep in my Dropbox so I can access it any time. It contains: name and contact info, diagnoses, meds with dosage and instructions, allergies with reactions, surgical history, pertinent test results, and my family Med/surg history on the second page. Doctors love getting something concise like this.
I've been sick almost 13 years, and I have a cabinet full of like 30 random notebooks and phone memos of symptoms and tests and bills, and procedures *Taurus*. Information is any and everywhere. I think I'll make a super project of this, because spoonie adulting. And see if I can fit it in a binder lol.
This is great! As are the tips in the comments. Many thanks fellow spoonies for the inspiration to get my act together. Also, taxes. Taxes get me inspired every year. For about a week I am on top of my game and then it's all downhill LOL.
I have a binder too, but it’s basically too full and I don’t love how it’s organised yet! I have 10 main dividers that start with discharge reports, scans, pathology results (there are so many), then a section for the different specialty types. It’s so bulky, so I usually just keep it at home and pull out the relevant papers for each appointment. Have you started the appointment journals? I need to do this but not sure how to start!
I'm always super sad when your videos end. I never thought of a binder. I wish my parents had done this. I've lost most of my important doctory information and have to keep it in my head. I was also very upset to learn doctors don't communicate with each other for you....
Confession: Mine are shoved into random boxes. ... I know. I gotta get organized. Thank you so much for the organization inspiration. Now I just gotta track down those papers. ... It could take a while.
I would be completely screwed if I went to any specialist outside my medical group. *LOL* They have my data in a central computer so my Pulmonologist can see what my PCP has on me, so can my GYN and all the others. Although I do find it funny that they ask me to bring in a list of all my meds. I tell them, "No, go look it up!".
OMG this may be amazing. I never thought of this!! I really need to take the leap and open my spoonie channel! It's created but I haven't yet uploaded. #chronicallyill #nochronicallytrill #chronicallytrillyoutube
Should also put on a Zip drive and put on ur necklace so if ur in and accident. Maybe they’ll also be able to load it right into ur electronics files at dr office
I've got a flash drive with all my med info on a keychain on my car keys for just that reason. But if I was in an accident, how would the EMTs or Drs know to check it? I'm thinking of getting one of those medical alert bracelets with a built in USB but they're kinda pricey.
Mine are all in a floppy binder with school letters and my work number and passport 😂 I’m know separating it as it’s been 6 years and it’s only going to get worse from here
do you think it's possible to go into more detail about this binder??? I love this idea but I can't grasp how to go about making one myself. also unrelated, when you describe Chronic pain, I feel like I can't relate. I feel that my pain isn't enough to be chronic pain even tho I understand that everyone is different. I feel like I would be taking terms that don't belong to me. do I "qualify" as a spoonie??? even if I have green light days or wake up with green lights and can end days with red lights??? wouldn't your traffic lights be different than mine???
MissLadyYuki hey, a spoonie is anyone who has a medical condition or pain they deal with which makes you feel the need to conserve energy or that you use more energy than 'healthy' people to get things done. As for chronic pain, it's any pain that persists for more than a few months or longer than it should and effects your well being. Both vary from person to person. Hope this helps.
![Autism Q&A [CC]](http://i.ytimg.com/vi/pKM77S5hGQw/mqdefault.jpg)
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Congrats, girl, for doing that! I am 70 yrs old and recently diagnosed with MS. I may have had it for decades but no one picked up on it but my physical therapist . Power on, girl.
this message made me happy to see. I'm glad you finally got diagnosed, and this message was so nice to see as someone starting their diagnosis journey for chronic illnesses! Hope you are well
You're very wise to be making a binder of your medical history. Even though I see the same general practitioner every year, he is so short of time to even give my hospital chart even a cursory review, that I have to tell him the same vital basic information every single year. Well done, getting organized and taking charge of your own health care!
I know this is an older video but I have to say thank you so much for this video! I'm only 16 but I am already starting to see a bunch of doctors to try to diagnose my own Mystery Condition (very probably EDS) and I have really debilitating executive dysfunction bc of developmental disabilities which makes it hard to keep track of things regardless of how important, so this is really helpful!! I will have to use it, and maybe introduce my mom to the idea, since she could really use one too! Thank you!!
I have 24 years of medical tests and information. My Mom used to keep them all stuffed into a binder but all those papers became too much (and the giant binder wouldn't close anymore) so she and I sat down and went through the entire "Great Big Book of Everything" and made a "Little Big Book of Everything" It's all on our computers through spreadsheets. It has a full list of every surgery I have had and which doctors performed, tests, medications, and information about my disease. When I update the surgeries or information I just print a new sheet and plop it in the binder.
I REALLY like your idea of journaling. i think I'm going to find a way to incorporate that into my system. I can see it being handy also for what medications make me feel what or do/ do not work.
I bring one of these to all of my appointments! I call it my health binder. I keep different sections for Tests, Symptoms Logs, and Results. It always has helped doctors take me more seriously, and make my 30 minutes with the doctor be more useful!
Omg you're so organized 💯🙌 Goals. I literally just carry around a giant reusable grocery bag with all the random papers and notes in it. ~*~Aquarius~*~
+HotPinkSun OMG, and you'v been at this way longer than I have!! Haha! I can't imagine the drama in that bag! Haha!
Just watched this as trying to organize with 3 autoimmune diseases plus diabetes lots of paperwork. At one point I had 11 doctors, but now only 4. Only thing I would add is a section by doctor listing not only symptoms but questions you think of for that doctor. I've learned I have to do that or I'll forget to ask the questions.
do you think it's possible to go into more detail about this binder??? I love this idea but I can't grasp how to go about making one myself. also unrelated, when you describe Chronic pain, I feel like I can't relate. I feel that my pain isn't enough to be chronic pain even tho I understand that everyone is different. I feel like I would be taking terms that don't belong to me. do I "qualify" as a spoonie??? even if I have green light days or wake up with green lights and can end days with red lights??? wouldn't your traffic lights be different than mine???
Thank you for the advice!! It really is helpful and I appreciate it. I have EDS and I have a Neurologist, Women’s Health, Eye Doctor and a Cardiologist and who knows what might be next on the roster!
I just bought all these similar supplies, and have all my records, scans etc into two filled bags. So thank you. Fir this. I'm going to finally do it. New subbie btw. But yes after 3 years of non stop appts... and yes journal- for meds and symptoms. Going to rewatch this study learn and do.
You should see my spoonie binder! I have one section for test results, organize by year (8 years and counting!), one section for handouts and resources I got at chronic pain rehab, and one section for receipts and forms I have to fill out.
I’m half Leo half Virgo!! I always aesthetically write current symptom lists and descriptions of how life is before every doctors appt (don’t get me wrong they take a week and 4 drafts) and it’s really helpful
I've never tried to invest the energy to do this. Almost every doc I've seen sort of freaks if I have a single sheet of paper with me at appointments. I'm afraid of how I'd be treated if I came in with a binder.
Lisa Connor-Wacky right!! My doctors don't even read the whole thing if I bring in a list.
This is a great idea. I have this one large envelope type situation (secured by Velcro) that I keep everything in, but a binder would be far more efficient.
Ahhhh thank you so much! This helps so much as I been struggling getting organized too, and have a binder but haven't organized it quite right yet. Yay!!! Your's look SO awesome. I love it. I hope it helps a lot and i'm super ready to work on mine now cuz of your awesomeness!! thank you!
This is a great idea! I have numerous folders with all of my medical and surgical records going back to 2005 and if I need to find something specific it takes forever. I've been meaning to organize it all, and I love the binder idea. Actually, scratch that I have ALL of my records, I have MOST. My disabilities are psych (bipolar [severe depression], generalized anxiety disorder, and ptsd. I don't want my psych records because they are more subjective and don't want to read them. However I have info on my treatment and hospitalizations if other docs need them. Ok, I'm done babbling! Lol :)
Oh, I also have a suggestion about the 'index' you're planning to make. I have a 2 page word doc that I keep in my Dropbox so I can access it any time. It contains: name and contact info, diagnoses, meds with dosage and instructions, allergies with reactions, surgical history, pertinent test results, and my family Med/surg history on the second page. Doctors love getting something concise like this.
Ok, so this is absolutely brilliant!!
I've been sick almost 13 years, and I have a cabinet full of like 30 random notebooks and phone memos of symptoms and tests and bills, and procedures *Taurus*. Information is any and everywhere. I think I'll make a super project of this, because spoonie adulting. And see if I can fit it in a binder lol.
Brilliant! I’m following your lead, and thank you!!!
omg!!! I hav sooooooooooooooooooo many medical documents.... such a amazing idea..... thx u!!!!!
Oh my goodness I love you so much, you make my days, literally ^.^
This is great! As are the tips in the comments. Many thanks fellow spoonies for the inspiration to get my act together. Also, taxes. Taxes get me inspired every year. For about a week I am on top of my game and then it's all downhill LOL.
I have a binder too, but it’s basically too full and I don’t love how it’s organised yet! I have 10 main dividers that start with discharge reports, scans, pathology results (there are so many), then a section for the different specialty types. It’s so bulky, so I usually just keep it at home and pull out the relevant papers for each appointment. Have you started the appointment journals? I need to do this but not sure how to start!
I'm always super sad when your videos end. I never thought of a binder. I wish my parents had done this. I've lost most of my important doctory information and have to keep it in my head. I was also very upset to learn doctors don't communicate with each other for you....
Confession: Mine are shoved into random boxes. ... I know. I gotta get organized. Thank you so much for the organization inspiration. Now I just gotta track down those papers. ... It could take a while.
I would be completely screwed if I went to any specialist outside my medical group. *LOL* They have my data in a central computer so my Pulmonologist can see what my PCP has on me, so can my GYN and all the others. Although I do find it funny that they ask me to bring in a list of all my meds. I tell them, "No, go look it up!".
When your medicine list is a million pages long and you are sick of constantly rewriting it. lol. Ugh know the feeling!!
OMG this may be amazing. I never thought of this!! I really need to take the leap and open my spoonie channel! It's created but I haven't yet uploaded. #chronicallyill #nochronicallytrill #chronicallytrillyoutube
Should also put on a Zip drive and put on ur necklace so if ur in and accident. Maybe they’ll also be able to load it right into ur electronics files at dr office
I've got a flash drive with all my med info on a keychain on my car keys for just that reason. But if I was in an accident, how would the EMTs or Drs know to check it? I'm thinking of getting one of those medical alert bracelets with a built in USB but they're kinda pricey.
Would a software or app that does this help the disability community?
OMG I wish!!
Not me, looking this up after coming to the same realization and having you take the words out of my mouth. Could drs BE anymore disorganized???
#HospitalGlam is pretty much everything.
im awful i just try to remember everything. i dont remember jack squat.
gemini btw
olalala! so organized! jealous! lol
New subbie
Mine are all in a floppy binder with school letters and my work number and passport 😂 I’m know separating it as it’s been 6 years and it’s only going to get worse from here
It's always so disjointed when you have loads of people on your case!! :( :0 :')
do you think it's possible to go into more detail about this binder??? I love this idea but I can't grasp how to go about making one myself. also unrelated, when you describe Chronic pain, I feel like I can't relate. I feel that my pain isn't enough to be chronic pain even tho I understand that everyone is different. I feel like I would be taking terms that don't belong to me. do I "qualify" as a spoonie??? even if I have green light days or wake up with green lights and can end days with red lights??? wouldn't your traffic lights be different than mine???
MissLadyYuki hey, a spoonie is anyone who has a medical condition or pain they deal with which makes you feel the need to conserve energy or that you use more energy than 'healthy' people to get things done. As for chronic pain, it's any pain that persists for more than a few months or longer than it should and effects your well being. Both vary from person to person. Hope this helps.
it does. thank you!