I want to make the FUMS website, blog and podcast better, more usable – of greater value to the MS community. I’ve been working SO HARD to learn as much as I can about updating a website, etc. I am not a techie. At all. Not a bit. So – even if I didn’t have a disease that affects my brain – this would not come easily or naturally to me – at all. But I do have a disease that affects my brain – and it makes doing EVERY-F’ING-THING more difficult. Especially when the cog fog sets in. And that, as you know dear fellow FUMS’ers, can happen literally at any moment. So – that’s why I have been trying to update the site, the blog and the podcast for so long without success.
Ask For Help, Dummy
I built my original FUMSnow.com site myself in 2011. It served its purpose and remember, I’m not a techie, so I was VERY proud of myself for having figured out how to build a website. Same with the podcast a few years later. This time around I recognize that my time is much better spent communicating with FUMS’ers, with doing the actual writing, setting up interviews and responding to requests. So – I spoke with several developers about updating my site. HOLY MOLY – it was expensive. I’m bootstrapping this whole “FUMS thing” myself so I have to be cognizant of every dollar spent. I’m in an online mastermind group with a wonderful woman, Shey Harms, and she offered to help me at a reduced rate and an exchange of services. She’s amazing – for so many reasons – but here’s where I, personally, benefit from her most: she’s a she, she’s close to my age (mid-life) and she can explain things to a non-techie in a non-judgey, non-intimidating way. This is SO valuable – especially for those of us that can’t hang on to information or that can’t understand things in the first go-around. She’s so patient and never seems annoyed by having to re-explain things to me. I so appreciate finding someone like this outside of our community. They are few and far between. I’ve found that my life has become smaller and smaller because there are so few Sheys out there! I don’t want to be perceived as being dumb when I ask a simple question or have forgotten something – so I have shrunk my world to accommodate my ego. I’m much more nervous going into meetings because I’m afraid someone will ask me something that I know – I know it – but I can’t “recall” it. I know you know what I mean. It’s right there – on the tip of your brain – but you can’t retrieve it. Even words. UGH. Words. I word fish quite a bit. It’s so funny how that can work sometimes: I know that I have a bigger, more impressive and oftentimes more appropriate word for something I’m trying to describe, but I cannot come up with it. I even know the first letter of the word! Crazy. I’ve become very adept at slowing my speech and placing “pregnant pauses” throughout my conversations to try to give my brain time to come up with concepts and words. Alas, it rarely helps. Except for when it does! MS is weird like that. It’s like a light switch – on and off – on and off.
So – the website is so close to being done. And the ebook – “Bowel and Bladder Issues in Multiple Sclerosis by Two Pee Brains With Potty Mouths Talking Shit About MS” – is almost done. And the podcast is soon to be updated. And the annual MS Holiday Gift Guide – again, almost there. I’ll feel proud when I finish these things and can actually share them with you all.
I’m so grateful for people like Shey that are willing to patiently help out where I need it – and for people like you, that have continued to support me in this FUMS mission over the years. I hope I provide value to you and help you somehow. Together we can keep trying hard – and shouldn’t feel so dumb doing it!