For a few years now, social media has taken over. When I started ChronicBabe, Facebook didn’t exist. Neither did YouTube, or Twitter, or Pinterest, or Instagram, or Tik Tok, or… anything else. Just: Blogging.
And that was pretty easy to keep up with. But as I’ve added all my social channels over the years, it is really tough to keep coming up with fresh ideas for y’all, all over the place. So I let my blog whither a bit.
But: That time is over. It is now time for me to come back to blogging. I have a lot of things to say, about life with chronic illness and chronic pain; about our health care system; about how women treat each other; about how our persistent lack of self-care is damaging us. And more. Much more.
So let’s talk. I am curious to know: What kinds of things do you wish ChronicBabe would offer? What kinds of things do you want to know about my life? What kinds of questions do you have if you’re newly diagnosed, or if you’re like me and you’ve been sick for more than 20 years?
Fill me in. Jump in the comments below, or use this contact form to send me an email if you want to keep things confidential.
I can’t wait to hear from you. I started this project with a desire to create community, and I’ve been missing that – let’s get that communal vibe going again, shall we?
XO
I’m the boss of three chronic babes. Understanding their ADA needs, their differing styles of self care and trying to be the manager they need is something I deal with weekly if not daily. I know a lot of chronic babes work freelance but those who don’t, what’s relevant to talk about with that for their managers?
Generational differences. My MIL has had chronic sickness for most of her life, but she doesn’t identify as a chronic babe. Similar to that video you did about explaining/discussing/diffusing with family, how can we youngers talk to olders? I tend to get frustrated with her lack of health literacy, self care, etc, but that’s not a helpful response.
The dangers of assumptions. I had a great experience recently with a HCP who reset my assumptions about my migraine triggers. He helped me find a new trigger and a way to respond or avoid sparking it.
britta, these are all such valuable ideas. thank you! i definitely want to address these.
Welcome back to blogging! I’d love to hear about managing to have a life with awful fatigue most days, travel tips, sleep solutions, healthy eating, how to pamper myself on recovery days like after infusions, and, as always, tips on pacing myself.
After 18 yrs with lupus + other chronic diseases, I still struggle with these things.
thanks ann! that’s a great request – i am feeling it today after traveling for 5 days (including an extra day because of weather delays). i will give this the chronicbabe approach in an upcoming post 🙂
I too have been on this road for a long time (17 years+) and welcome positive posts that help me continue to improve my life, my outlook, my self esteem, and my effectiveness despite chronic illness.
For me, a lot of communications and books out there are kind of beginner for someone who has been living with the same set of symptoms for so long and used to receiving new diagnosis every year or so. I’ve read every major book out there on everything from chronic illness, meditation, pain management, and alternative treatments and I subscribe to many of those methods already.
I don’t exactly know what I want to see in blog posts, but I know that for me I feel like I’ve been on this road for a long time and I am always seeking brand new inspiration, new findings, new ways to see things which I may not have seen before. I think that is why I like your flavor of “brand.” You show us a full life moving forward, always, at varying speeds, but always forward, while touching on a little of how we manage our whole lives with positivity and in ways that make us feel better and whole.
I know that is no short answer to “what I want,” but maybe my stream of consciousness helps you understand where I am.
geraldine, thank you – i am honored by your words. i can definitely work on keeping this kind of writing up front. xo
I’d love to hear about your outlook on your illness 20+ after diagnosis …
awesome, thanks amanda! will do it!
As one of the “oldsters” — at least I feel like that as I turn 50 next week! — and also someone who is tech-challenged, I’d like to learn more details about how that can help me. I can basically FB & Twitter and I use Evernote in a very basic way. But all these other social media platforms, apps, etc… they makes my head spin. I don’t know what they are, how they work, or how they can help chronicbabes.
Maybe you could have a regular feature on this sort of thing, but break it down to simpler steps/outline to help those in fatigue fog or who have difficulty grasping the subject at all? Perhaps I am the only one who struggles with this.
you are definitely not the only one who struggles with this, shannon! i can definitely approach this topic.
Responding to Shannon. I’m 60 and have been dealing with chronic conditions for over half my life. I’m interested in caregiver strategies to help me car for my Mom. I’m interested in traveling to Israel and wonder how the travel would impact me. I’d buy trip interruption insurance to start the day I buy it. I’m unable to travel like I did. I don’t know how such a long trip will impact me. I’ve spent about 2 years in Israel and It’s been almost 20 years or so since my last overseas trip. I’m apprehensive about the travel. I also have a trip to New Jersey in June and it’s a challenge to explain to someone my dietary restrictions. Plus, I have nothing to wear for 3 fancy events. I need to find something to wear for Passover that’s different from before because family photos will be taken. I think being positive on the blog would be useful even though we don’t always feel positive.
hi susan, excellent request, i can definitely talk about travel! insurance is a great thing to get, for sure.
Hi Jenni, I have really missed your videos on facebook but I can see how it can just be too much to try and juggle with everything else you have going on. I guess I am one of the “oldsters” here too and have been dealing with Fibromyalgia and a lot of other ongoing comorbid conditions since I was a child. I’m now in my mid 50’s. I’m curious to know if others are finding that their Fibromyalgia is progressing and getting harder to deal with as they get older. I have found that in my case and can no longer work outside the home or drive myself more than a few blocks. I am finding that my world is shrinking to just my family, fur babies and a few friends. As a grandparent to 3 active little boys, I give them all I can but head to bed the minute they leave most of the time because I am worn out after a few hours.
oh debbie, that sounds really difficult. i’ll definitely be looking at what it’s like to have a chronic illness for a couple decades or more.
I hear you Jenni I have stopped blogging mostly because I wasn’t getting any comments. The blog was being hit up to 100 times a day possibly by hackers? Maybe I need to try a different blog program? I also kind of lost interest. I do enjoy reading certain writers blogs, your being one. Keep us informed on what your doing.
Take Care
Lisamarie
oh lisamarie, it sounds like you need a bit of a revamp! maybe a new blogging platform? what platform were you on before? also: i think that we have to meet people where they are, and now people are all over social media – when i started, social media didn’t exist. so i have to spread my efforts out a lot, and that makes it harder. hugs!
Thank you for just being real!!! Into my second year of an official diagnosis I still feel like I have no gain in my migraines. Ehlers Danlos explains a lot and I am more prepared for when a flare hits, however those times when the isolation and fatigue are all I can see it’s good to know you’re out there. Just be yourself and be real! I like that about you. Thanks Jenni!!!
glad to be here for you, babe. hugs hugs!