Karyn Bishof is a long-hauler from Florida who founded the Facebook group Covid-19 Long-Hauler Advocacy Project. She posted the other day about how she keeps herself organized. I asked her if we could reproduce her post on our blog, with credit, and she said yes.
By KARYN BISHOF
I’m at 6.5 months post-covid. I was not able to even see any doc for 3 months. I was initially on worker’s compensation and therefore saw 1 doctor for 1.5 months. SO from 4.5 months to now 6.5 months (2 months), this is my medical binder.
Everything with a ✔️ means there was a finding.
I have seen:
Infectious disease ✔️
Neurology (didn’t believe in covid issues so…, next)
ENT (pending throat endoscopy)
GI (pending colonoscopy and endoscopy)
POTS/ Dysautonomia specialist
I have done:
1 chest x-ray
2 chest CT✔️
1 brain MRI
Too many labs to count✔️
Pending to be done:
Colonoscopy and endoscopy
I highly suggest you create a binder like this, categorize it by specialty, and bring it to every appointment with you. Also make a sleeve for your imaging cd’s and referrals so you never forget them. I recommend that you review your binder prior to each appointment, research your issues prior to your appointment so you are educated and can write down your questions prior to going so you don’t miss anything.
Bring a paper and pen with you to your appointment to write down the answers to your questions. I also recommend to make a master list of your doctors, their specialty and their office phone number, so that if another doctor would like to consult them or send or request records, it is easily accessible and fast.
This is a lot. But it drastically helps with the brain fog and keeping me in line and organized and prepared for and at appointments. I also recommend downloading the app scanner pro. It’s $3.99 from the App Store. You scan your documents in and it saves them. You also have the ability to email or fax that document to whomever. I use it all the time.
I like to (and I recommend you do) fax the doctor my stuff prior to my appointment. I found that 3/4 of my appointments were being taken up by me giving my doctors a 6-month history and they were tired, confused, and then rushed at the end to get to the next patient and not focused on my care or solutions or testing. It is my hope, that a good physician and their team will have the capability and mindset to say, wow, there’s a lot here that was sent to us and it seems complicated. Let me review and research prior to this persons appointment so we can be as thorough and successful as possible.
I am learning as time goes on, I forget which docs know what and have been updated on new findings and so forth. So, I also suggest you make a master list of all new findings post covid. As I’ve also been saying for months, I recommend you keep a log. I have created my log as follows: symptoms I had at onset of illness so weeks 1-3. Then, symptoms that are constant for me, intermittent for me (come and go) and symptoms I’ve only experienced once. This lets the doctor assess any patterns and what to focus on most or what is the most urgent.
It is also beneficial to keep in this binder the surveys conducted on longhaulers in case you come across a skeptical doctor or someone who tells you it’s anxiety or psychosomatic. You can include a few articles too, just something to have handy and whip out should the need arise.
Thank you for coming to my TED Talk ????
Hope this helps you guys moving forward ????