Browsed by
Tag: Advocacy

Starting to write again. I think.

Starting to write again. I think.

I have just done nothing with this blog for so long. I’ve thought about just shutting it down, or letting it float in the inter webs forever; my rants forever floating…hahaha. I’ve got the itch to write again. The excitement that builds up when you think about it, changing blog themes incessantly getting all pumped up to write something, anything!

That’s where I’m at right now. I know that I want to jump back into advocacy again: I’m SO tired of dermatomyositis getting no play out there in the land of awareness. Bratty foot stomping here. So, if I want things to change I need to try and change them. And here I am. ??

 

Here’s a link to a depressing article about DM and the onset of cancer with specific antibodies present and lots of very scientific-ey words. Bam!

and here’s a picture of a cute puppy. Just because. 

This cute doggy was found at The Meta Picture. Ok, I’m going to read for a while and crash. Big time Friday night over here!!

 

 

 

Today Is World Arthritis Day, Let’s See Your Wave!

Today Is World Arthritis Day, Let’s See Your Wave!

Hey all, today is World Arthritis Day. A day of awareness for people with rheumatic disease. There are more than 200 rheumatic and musculoskeletal diseases (RMD’s). This year’s theme is ‘Move to Improve’. 

You can click on the pic above and also the globe in the sidebar and be taken to the World Arthritis Day website. There you can find out more about today, get resources for yourself or to educate your loved ones, and have an opportunity to wave for WAD!  You can submit your picture of you waving for World Arthritis Day. The photos are being put into a montage and the goal this year is 100,000 pictures. Countries are competing to see who has the most waves. =) You can see the tallies at the website.

I think this is a fun idea and we’ll be ‘waving’ here and sending ours in. I’ll be sure to post it here when we do. They’re accepting photos until October 31st, so it’s not too late to be involved.  Anyone can wave; you don’t have to have a disease, you can wave to support your friend or family member.

Waving is a small physical activity, but a big gesture for people with rheumatic disease.  It also ties in with this year’s theme which is movement, and we all know this is SO important. Now that doesn’t mean running a marathon, unless you can and um, like to run…That’s just something I never did enjoy even when my muscles were my own. But light exercise is very important to keep your muscles from atrophying.

My mantra is ‘baby steps, baby steps’. There was a time when I couldn’t walk more than a few feet, and even then had to rely on a walker. The couple of years of me being immobile really did a number on my muscles. My disease is a muscle-wasting disease to begin with, so I really need to stay as active as I can. Something I have not been so successful with lately btw, but that’s the good thing about a new day. A day to try again.

Stop in at the website. Click the counter to ‘wave’ in spirit. Let me know in the comments if you did, I’d love to see them!

Until next time,

 

 

Please Stop The Pain For Chronic/Intractable Pain Sufferers

Please Stop The Pain For Chronic/Intractable Pain Sufferers

I know, I’ve been invisible for quite a while now.. Still battling depression, it’s an ongoing thing. I need to get back ‘out there’ and posting is one of the things I need to do to feel good. I have a list of people I need to call/write/hug, and a house to clean, ha!
In an effort to get back into the swing of things, I joined a fantastic site called Chronic Intractable Pain and You. It is an amazing source of support, and a place for advocacy for chronic pain sufferers. I’m going to make this post short and sweet, and place a link to sign a petition. Please at least check it out, read it and if you agree, please sign. We need 10,000 signatures and are at around 900.
Thanks in advance, and I will be back!

Please click on the picture below to take you to the petition =)

Make a wish!
Cure JM a finalist! 250,000 for research!!!!

Cure JM a finalist! 250,000 for research!!!!

I just wanted to drop a quick THANK YOU for all of you out there who diligently texted and facebooked and on-site voted for Cure JM to win in the Pepsi Refresh Challenge.  Oh my gosh, I still can’t believe we won!!!!!  It’s amazing, wonderful, incredible, and oh so needed! Thank you. All the children with JM have some more hope for a cure with the 250,000 prize money to go towards research.

Love to you all,

Make Juvenile Myositis A Memory!

Make Juvenile Myositis A Memory!

Pepsi is hosting a contest and is giving away 250K to the winner! I’m supporting Make Juvenile Myositis a Memory by The Cure JM Foundation.  About 5,000 kids in the US are affected by this disease, putting it in the ‘rare disease’ category. But just because that number isn’t astronomical, doesn’t mean that they don’t need the funding. These kids are suffering with a painful, debilitation, potentially life threatening disease.

Here’s a video about Emma’s story with JM-

Will you please vote with me and help these kids have a chance at some research grants?  You can go to the Pepsi site and vote at http://www.refresheverything.com/makejmamemory and also on Facebook at the Pepsi Refresh Voting App. You can vote once each day on each site for this cause, but you get to vote 10 times in each day if you have other causes you support.  Thanks in advance, we really have a chance guys. We are in 12th place right now with over 1,000 applicants and there is 7 days to go! Please vote each day if you can.  Thank you!

June is Myasthenia Gravis Awareness Month-yes, I’m late!

June is Myasthenia Gravis Awareness Month-yes, I’m late!

I’ve been a little backwards lately…a lot going on in the Lane.  I wanted to talk about MG and APS as both have awareness months in June.  Even though I kind of missed the boat on talking about them earlier it’s ok, as long as word gets out, it’s ok if it’s late.  Right??  I’m trying to make myself feel better for not doing this sooner 🙂

Myasthenia Gravis means “grave muscle weakness”.  The most common form of MG is an AI(autoimmune) neuromuscular disorder. So many of us AI’s go and see a rheumatologist but with Myasthenia Gravis you would see a neurologist.  I learned a lot from reading at the Myasthenia Gravis Foundation of America and now I’m going to try and squeeze some of it out of my brain into a mini biology lesson.  Bear with me as I’m running on no sleep.  Like my disclaimer?

When our brain sends out a signal for our muscles to move, an impulse travels down the nerves to the muscles. But the nerve and muscle don’t actually touch; there is a space between the nerve ending and the muscle.  It’s called the neuromuscular junction.  Alrighty, here is the place that I’m going to have to jump back and forth and plagiarize the site because my pea brain can’t remember it all.

According to MGFA when the nerve impulse originating in the brain arrives at the neuromuscular junction it releases a chemical called acetylcholine.  Acetylcholine travels across the junction to the muscle side and attaches to many receptor sites.  The muscle contracts when enough of the receptor sites have been activated by the acetylcholine.  In MG, there is as much as 80% reduction in receptor sites.  The reduction in sites is caused by an antibody that destroys or blocks the receptor sites.

This next part I know a little bit about so I don’t have to cheat 🙂 The antibody is a protein that is supposed to destroy foreign proteins called antigens, like bacteria and viruses. The immune system in a person that has MG makes antibodies that attack their receptor sites.  This causes a slow down in acetylcholine being able to start up enough receptor sites for the muscles to do what they are supposed to.  The end result is muscle weakness.

Myasthenia Gravis. It’s a mouthful. And a body full.  I have a friend who has this treacherous disease and it sucks to put it bluntly.  MG targets muscles and leads to muscle weakness.  Breathing, swallowing, walking; it affects voluntary muscle groups.  Before I even knew what MG was I had seen a video on You Tube of a woman who was getting harassed by the police while on the ground.  She kept saying ‘Myasthenia Gravis’ as they taunted her as a troublemaker because of ongoing issues with her neighbor.  When the EMT’s came they told her they never heard of it as a dismissal.  As if someone has never heard of something then it must not exist, ha!  I believe there are close to 100 autoimmune diseases and just because I have one doesn’t mean I know them all.  Just because you are medical personnel doesn’t mean you know every disease and condition known to man.  Ugh, watching it made me sick to my stomach.

We all know that research and funding are some of the ways to getting closer to finding a cure for autoimmune diseases.  Awareness is also very important.  We have to get the word out about all of these diseases, let everyone know just how important it is to spread the word.  Make ‘autoimmunity’ a household word. The more we know as a public, the more people will be pushing for funding to find a cure.

Thanks for listening.  I planned on writing a little about MG during it’s actual awareness month, but June was a completely chaotic and sad month for us. Stop by Myasthenia Gravis Foundation of America and check it out.  It’s a really great place for information, advocacy, and patient education. Next up, APS!

Until next time,

The Power of 10

The Power of 10

I am bed-bound at the moment and pretty darn low.  I have written and revised and rehashed a post until is was about 2 sentences long to cut out all of my whining and/or negativity as my body is really kicking the crap out of me.  I’m just going to post this awesome video about Erica.

The Arthritis Foundation has a campaign called the Power of 10.  You watch the video, forward it to 10 people, and give a gift of 10 dollars.  Let’s spread the word.  Just click on the Power of 10 link and check it out.  What a really great simple way we can all make a difference.  God Bless.

Thanks for hanging in there with me,

2michelle

The story of ‘Lucy’ by Julian Lennon and James Scott Cook

The story of ‘Lucy’ by Julian Lennon and James Scott Cook

Here’s a little info from Julian Lennon about Lucy.  I really like the song, it’s catchy.  Check out the video, it’s an interesting story, and remember you can download the song from iTunes and portions of the proceeds goes equally to The Lupus Foundation of America (LFA) and the St. Thomas Lupus Trust in London.

This is a short PSA 🙂

And now the video and song!.Enjoy and don’t forget to purchase a download. It’s helps fund research for a cure!

Until next time~

2michelle

The Arthritis Foundation, “Inspiring Others”

The Arthritis Foundation, “Inspiring Others”

This video asks to forward on to friends and family and this is the fastest and easiest way to do it!

I heart the Arthritis Foundation!

I’ve been gone for a few months.  I’ll go into that in another post, loooong story.  I would like to apologize to all the readers who left a comment in my absence.  I have comments set on moderation so they won’t show up until I see them and unfortunately I didn’t get them up until tonight.  Thank you for reading my blog, and thank you for your comments.  I will respond to them tonorrow, my eyes are closing. (wimp here)  Thanks again everyone for hanging in there with me.  And don’t forget to forward the video!!

Until next time

2miichelle

Thank You Rob Thomas for giving us Her Diamonds!!

Thank You Rob Thomas for giving us Her Diamonds!!

I am so glad I saw something about this on Facebook.  Here is an excerpt from the bio on Rob Thomas’ website:

The album’s first single, the kaleidoscopic “Her Diamonds,” is the most personal song Thomas has yet committed to disc. Rob’s wife Marisol is courageously battling an autoimmune disease, and “Her Diamonds” was written “about a couple dealing with that on a day-to-day basis,” explains Thomas. “There’s an incredible amount of sadness that comes with something like that. There are moments where I think I flirted with a thinner personal line than I’ve ever done before, but, really, I’m writing a song about how people deal with hard times, and that hard time is universal, that hard time can be anything.”

That gift of turning the personal into the universal has long been a hallmark of Rob’s work. “If I can take a specific moment in my life and write about how that moment makes me feel – not about the moment, but the way the moment makes me feel, all of a sudden I’m in a territory where a lot of people can understand that. A lot of people understand that feeling; they have other things in their life that make them feel that way. If I write ‘3am’ about my mother dealing with cancer, that’s a very specific moment, but if I write about how that made me feel, then it opens up and it becomes a universal moment.”

I went to the site and watched the video “Her Diamonds“.  Wow.  Writing a song about his wife’s illness and how it feels is really intimate and I’m so glad he did it.  It opens up conversation about autoimmune disease to his fans.  What is it?  Which one does she have? etc.  It must have been hard to open up their personal life and talk about his wife’s battle with autoimmune disease and how it affects both of them.  I wonder if she wanted him to, to help the cause.  I wish I could say thank you to him personally, I can’t so I will just say it here.  Thank you, from the bottom of my heart-thank you.  My husband and I watched your video and were both so touched.  You nailed it right on the head.

I’ve always said if more famous people would speak about autoimmune disease, the population would be soon asking questions about autoimmunity.  We really need more press and exposure.  A lot of you know that there have been no new meds for lupus in 50 years.  That’s just inexcusable.  That’s just one example of how autoimmune diseases are at the bottom of the barrel when it comes to exposure, research dollars, and just plain understanding.  How many people live with the pain and fear of their body’s attack on their body.  Even that sentence doesn’t seem to make sense.  None of it does.  It’s so random.

Done, off my soapbox now.  This is a video of Rob Thomas performing this song Her Diamonds live on the Ellen Show.  To see the video of the song, you can go to his website at www.robthomasmusic.com and click on the videos tab, or just click here.  🙂


 

 

*******UPDATE*******I added his video, Her Diamonds to my vodpod on the left side of the blog.  It is the first video in the lupus vids.  Have fun!!  Even though I want everyone to hear this song and talk about it, the song kicks ass. It doesn’t need a small town blogger trying to sell it.  Enjoy!

 

%d bloggers like this: