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CatchMyPain Community and Pain Diary App to manage chronic illness

Social Media

Oct 09, 2015 8:05 AM

I was just curious, because I have an idea germinating in my head, if anyone here uses Twitter, Facebook, Instagram, Pinterest, or We 💖 It? Currently, I have a Pinterest page, mostly inactive Facebook, Twitter, and We 💖 It account, and no Instagram acct.

Oct 09, 2015 8:08 AM

I use Facebook, Pinterest, Instagram, very little Twitter. What's brewing in that brain of yours Arnie?? I'm sure whatever it is, it's going to be cool!! 😊

Oct 09, 2015 8:16 AM

OMG I have them all. I have fb x 2 accounts. Twitter x 2 accounts. Instagram and pint rest. The extra 2 accounts are so my ex never hacks my accounts again. I live on fb. Where I'm chatting to friends or just sharing funny stories. But you can usually find me on there. Now I have this and have spent most of my day hugging stagers on here lol.

Oct 09, 2015 8:25 AM

Well, you can hug me any time!! I am a very huggy person and always feel that the best thing about giving a hug is that you get one in return... Awesome!! 💕🙏🏻🌻

Oct 09, 2015 8:39 AM

I like smiling too. I was brought up to smile at strangers. It makes them smile and maybe just maybe they'll pass it on. Hugs are better but not acceptable these days. But on social media I'm one of the first to pass a high on (((((huggz))))) :)

Oct 09, 2015 9:05 AM

The only one I'm on is Pinterest. I use to be on FB, but my email got swamped/hacked with vulgar and mean (no idea who) emails so I shut it down and changed my email. I've been leary of opening another account.

Oct 09, 2015 11:26 PM

I do the fb and my own blog. On fb we have a support group for Tarlov'ers and since I am one who has had surgery for it I comments daily to try and help with the newbies. The blog I post on I try to post 2 or 3 days about my "deep" thoughts and or my daily trials be they good or bad. Also on the blog I really try to laugh about it all.

Oct 10, 2015 1:56 AM

I do have a Facebook, Inactive twitter, no Instagram and barely use pintrest.

Oct 10, 2015 5:07 AM

I practically live in fb, it's windows to the world and sometimes the only interaction with people that I have other than this group x

Oct 10, 2015 9:43 AM

Ok, my thought was to perhaps extend the Catch My Pain community into the social media sphere somehow.
Ok, my thought was to perhaps extend the Catch My Pain community into the social media sphere somehow.

I don't know if the ppl behind Catch My Pain ever considered utilizing any of the things myself and others have mentioned, but all of them could be used to introduce more ppl to this app, both ppl who are in need of it because of dealing with pain and ppl who are in need of it because someone they care about is in pain.

Detouring for a moment ( I will add all this to the Community Improvement thread):
1. Something that would be useful to many is a place to list resources - both for ppl who r in pain and for ppl who need help understanding it. There could be links to things like SSDI, Medication Resources, Pain Clinics/Doctors, Medical Marijuana, Articles/blogs/studies, Clinical Trials, Therapists, etc.
2. Metrics & statistics & charts! Right now all we have to look at is our own pain info. What if all of our info could be pulled (anonymously of course) to show things like:
-There are this many ppl signed up for Catch My Pain.
-Out of those, whatever % has (let's use) Fibromyalgia.
-Of the % that has Fibro, this many % concurrently has IBS, or CFS, or Lupus.
-We could then look at other crossover info from the app like stress, the weather, time of day, medications, maybe add food as well.
3. Doctor/Specialist/Nurse/Psychologist/Physical Therapist etc AMA
An AMA is "Ask Me Anything". Reddit has them a lot, but ours would be more specific. We would find Practitioners who are willing to talk to the community and answer any questions we or our family had. AMA's can be quite informative.

Back to the road: Number 2 could be done within the catch my pain app itself, while the other two could capitalize on social media. Number 1 would work on a blog, Facebook, or the Community feature in this app if it is tweaked a bit. Number 3 could also be on a blog, Facebook, or Community feature.

I'm personally a fan of Pinterest. I love looking for interesting things and easily posting them to my page. Perhaps we could have an Official Catch My Pain Pinterest page that we could link to. Whoever ran it could post both informative tidbits, humorous and wise quotes, & adorable animals (unless we leave it open to user submissions).

I just think this community is wonderful and growing rapidly and the app keeps getting better as well but definitely could use outside of the box suggestions.

Whatcha all think? Any ideas or comments?

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