I started this blog with the best intentions and for reasons I thought were good.
- I am trained as an analyst, so my research is solid, not from WebMD
- I am a lifelong medical geek (facts only), have some medical training & many years of research, including at teaching hospitals up my sleeve.
- I have 3 Autoimmune Diseases & some other probs and am very well versed in those & related (or sometimes unrelated) issues.
- I love helping people and advocacy work & have done it for a long time and often, physically & online.
- I am good at thinking outside the box for solutions OR possible problems and how to establish a routine or method to help prevent.
- Not afraid to speak my mind, but I do bear in mind that opinions are a dime a dozen, so I try and stick to facts and filter the BS
- I am well aware the medical system lets us down and “mostly” the actual online community & its fellow warriors don’t. …. MOSTLY (I’ll get to this).
- Did I mention I love helping people ??
Yeah, so I was motivated. I was quite involved on Twitter and Facebook with the Autoimmune & #ChronicLife online community. I got started, did my fun creative design work, it looks great, started a bunch of drafts for posts, some got posted, many are still sitting there because they’re complicated and needed more research, some were written when I was hot headed about an issue and it’s best to let those sit for a bit and a few got posted.
So what happened? Glad you asked 🙂 I got REALLY sidetracked by several things. I got asked to join a bunch of RA & Autoimmune Groups and seemed to become their “go to” for answers, facts, research and ideas (my post on how to take care of your oral hygiene to help prevent the common mouth sores we all get from our meds… yeah, stuff THAT involved).
My life got involved too, as it does for every one. Bad months where everything was too much, except taking care of me. Good months where with the help of special temp meds I could remodel half my house…. By Myself, Physically. Yep. Gardening, enjoying family & friends, travel, LOTS of research, all that stuff and dealing with my own deteriorating condition. Nothing wrong with that, but it’s what happened… but WAIT. There’s more. Isn’t there always? it’s the story of a #ChronicLife (see on twitter, thanks to HurtBlogger) .
Annnnd…. The “More” part is, the groups I did accept invitations from, with one exception, have a no links policy. This is sensible because accidently or on purpose, people can send you to malware sites, sites that have an advertising, info collecting or other hidden agenda things and/or just plain bad info (Amway Vitamin will cure you RA… ummm, NO, but someone will be desperate and waste their money on it). SO, I couldn’t post my loooong, advice/help/research/info/answers HERE on my blog as a resource for EveryOne & just point to it. So accepted that, but it was a time consuming PAIN. Plus the horrible toll all the typing was taking on my fingers & my fused bone deformed wrist (yes, I dictate into my phone, but the going back and correcting a long message is really tedious, especially being detailed and factual to help as much as poss) and time looking for old lost posts in a group or comments page that answers exactly what someone just asked… sigh.
It’s just gotten too hard, so I’m dialing back my group & page participation except where I can link to a central resource, which is HERE at BoneCreak.
I just had a terrible experience with a group moderator (new group and I was warned by several existing members), I don’t like to use the words psycho, controlling, suppressing, bitchy or just flat out wrong and ill informed, but she was.
More on that in the next post, because I have a warning on that one and in general. See you later this week !
In Peace & health fellow warriors.
Hope your halloween was fun or quiet, as you wished and I’ll be seeing you way more often I hope.