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Videos on Dermatomyositis; The Good, The Bad, and The Ugly

Videos on Dermatomyositis; The Good, The Bad, and The Ugly


I’m cruising You Tube looking for videos to update the awareness videos on the sidebar here. The first video that pops up when searching ‘dermatomyositis’ is the same one that popped up I don’t know how many years ago. I got frustrated when I viewed it now, just like I did when I viewed it a few years ago. If I was a person to rely on one You Tube video I’d be severely misinformed. That’s the ONLY thing that saves me from blowing a blood vessel; knowing that most people will keep searching and reading to find out about something that they’re interested in.

She describes it to feel like ‘a mild flu’, oh brother to that one. Then, the interviewer asks her about the outcome and she paints such a rosy picture! She says ‘it’s usually about 2 years for the complete treatment of dermatomyositis’…whaaaa??? I want to go to wherever she’s at…she also says in most cases after putting it into a ‘quiet state’, which would be remission, it doesn’t usually come back. Again, where is she getting this from? Periods of remission may happen, they may not. There’s no ‘usually’ or ‘mostly’ as to it staying gone…sigh. I’m not trying to ‘fatal-ize’ this disease, I only wish that people in places of authority would state the facts. It’s irresponsible not to.

We need a cure. We need research, and research funding. We need enough people to care about a disease that’s rare. It still affects people, it still disables people, and it still kills people. People with DM are at a higher risk for developing certain cancers; cervix, lungs, pancreas, breasts, ovaries, and gastrointestinal tract. [mayo clinic] Interstitial lung disease is seen in 20 to 80% of patients with DM, depending on many different factors, with ILD being a major cause of morbidity and mortality. [ILD in DM and PM]

Here’s a really good informative video. It’s definitely not ‘user friendly’; it’s a technical video for teaching purposes. Lots of facts though. But still, if you’re not up on your medical terminology you might miss a lot of good info.

I’m still on a mission to find some informative, short, layman-speak vids. I might end up making some. We’ll see. ūüôā

 

 

Better late than never…

Better late than never…

I’m back. Surprised? ¬†Me too! ¬†I’ve come to realize that I’m a flake now. ¬†Not because I don’t care or things aren’t important to me, but because my body dictates my life now and I really can’t stand that. I crashed at 3pm and woke up at 8:30pm and haven’t had a chance to sit down and blog. But, better late than never, right? Onward!

OK, I decided to share a few things with you that I think are pretty cool, fun, or interesting. ¬†The first is something that I just heard for the first time tonight. ¬†My son came over and told me that my dad was looking for this Celtic band and couldn’t find the cd anywhere. ¬†They are called Albannach and are a Scottish pipes and drums band. ¬†Dad loves Irish music and knows the words to all the old songs from the Ol’ sod. ¬†So this is kinda cool that he’s lookin for a Scottish band. When I googled them, the first hit I got was of them jammin with the Red Hot Chili Peppers. ¬†Check it Out

I have to find them in time for Father’s Day.

OK, lately I have been completely and thoroughly addicted to shopping for graphics for digi scrapping. ¬†And I do mean addicted. ¬†I’m gonna have to have Big C change the password on our paypal account because each 10 and 15 dollar order adds up quick. ¬†Fo sho. ¬†So anyway, (see, not using anyways anymores) I have been introduced through my thirst for everything digital to-Art Journaling. ¬†With graphics, yes! ¬†Perfect combo of hands on and digital. ¬†Or you could just do digital but I don’t think it would feel the same. ¬†And it really is freeing. ¬†When you are working on your scrap pages you are preserving a memory for others, to last forever. ¬†But your Art Journal is all your own. ¬†You’re not making it for anyone else’s eyes so it’s anything goes baby! woot! ¬†And you really don’t have to go buy a ton of stuff if you have some paints and pens, scissors and glue you’re good to go. ¬†You could even use an old book and work right over it. So, here are a few links to a couple of art journal blogs and I’m gonna hook you up with an artsy woman on video. ¬†The first blog is Tangie Baxter from scrapbookgraphics.com. ¬†She has an Art Journal Caravan that I highly recommend if you would like weekly prompts and half of that weeks provisions (which brings it down to 2 bucks) ¬†And the next is a Seattle artiste named Teesha Moore whom I adore! aaargh. ¬†It’s late or early, whatever that’s what Im blaming my lameness on. ¬†I’m going to link her blog to her first name and her .com to her last name. ¬†She’s that good. ¬†Wait till you see what she made while under the influence of six shots of tequila! ¬†OK, I think the video is severely lacking now, and maybe even annoying so I’m leaving it out.

Well alrighty then. ¬†It’s almost 6 am, I had to most ferocious, terrifying, slasher film nightmare that woke me up a few hours ago and my muscles from head to toe are killing me!!! Hey, I knew i couldn’t make it through a post without a little whine. ha! ¬†There’s no way sleep will come so I’m heading over to SBG where one of my favorite designers, Mays, is having a 48% off sale to celebrate her 48th bday. Graphics, woot! ¬†I love her style too.

until next nime

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