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I support rare disease day

I support rare disease day

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Rare disease day is here! This is the one day where I can celebrate my uniqueness. With a bunch of other uniquers. Haha! It’s nice to talk to people who have DM and get that ‘uh huh’ and ‘oh yah!’.

Even though the word rare means

rare1
re(?)r/
adjective
  1. 1.
    (of an event, situation, or condition) not occurring very often.
    “a rare genetic disorder”
    synonyms: infrequentscarcesparse, few and far between, thin on the ground,like gold dust, as scarce as hen’s teeth;

    we still have a large amount of people with rare diseases. I think it’s like 30 million people in the US have a rare disease and there’s around 7, 000 rare diseases on the list. It makes it hard to get funding for research, hard for people to connect with others with their same condition. I read this somewhere (don’t quote me on this) but I think it said like 95% of rare diseases don’t have one FDA approved treatment for their disease.  That’s just nuts.

    I’m going to link a few places to check out, if you’d like to spread the word, read up, or meet some people like yourself. 🙂

     

    National Organization for Rare Disorders

    Rare Disease Day USA

    World Rare Disease Day, The Global Gene Project

    Offices of Rare Disease Research

    The Voice of Rare Disease Patients in Europe

    Eurordis Rare Diseases Youtube Channel

    I hope you all are having a great day. I’ll be back to blog soon.

    Until next time,

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,

Pepsi Refresh Project; Cure JM in 4th Place!

Pepsi Refresh Project; Cure JM in 4th Place!

Introducing the Pepsi Refresh Project. Pepsi i...
Image via Wikipedia

I posted earlier about Cure JM having a chance at a $250,000 grant from Pepsi and we still do! Voting is open until the end of August. In July we were in 12th place and as of today we are in 4th. Woot Woot!!  The top two will each receive the grants.  This is so amazing, it is truly within our grasp if we all vote and pass along to our friends to vote too.  Will you please take a moment and text to vote, stop in at Facebook and vote and please ask your fb friends to do the same.  It is such a worthwhile cause, I know firsthand the pain and crippling effects this disease has and I can’t even imagine a child having to go through any of it.

To find out more about Juvenile Myositis and the organization Cure JM, check out the video and follow the links below to vote. Pepsi is giving us an amazing opportunity to help our kids with JM and we are so close! Thank you to all of you who are following this and voting. God Bless!

A message from the facebook group:

Thanks for making a difference by helping Cure JM move into 4TH PLACE in the Pepsi Refresh contest, where we are competing with over 400 organizations for a $250,000 grant.

We need to be in the TOP TWO at the end of August to win this grant. Every penny of this grant will go towards research, including an important JM genome study and a cardiovascular risk study in patients with JM. The remaining funds will go towards the Cure JM Program of Excellence research center in Chicago.

We would like to share a recent Facebook post from a JM family, who has played an integral role in the Cure JM Foundation:

“Know how I remember to vote everyday???….Inserting Mason’s feeding tube, giving the IV meds he needs this morning to keep him alive, plus the other meds used to strengthen his depleted bones, and the meds to lower his blood pressure so his enlarged, calcinotic heart will hopefully get better; replacing the pain patch…”

Please vote so that Mason and all of the children with JM can have hope for a better future. Vote THREE times each day, everyday to help Cure JM:

– Text Vote to Pepsi (73774) Type: 100850 to vote *(Stnd txt msg rts apply)
– Vote via FB app: http://www.facebook.com/l/0a580WbtmPvlJZ9FqZauzEfO3eg;bit.ly/CureJMonFB
– Vote for our entire “Kids to Win” team at: http://www.facebook.com/l/0a5806ZfUlE2jdhvEYHUpKnXhvA;pep.si/CureJMKidstoWin4

Sign up for Daily Voting Reminders (and be entered into a contest to win a FREE iPad if Cure JM wins!), please register here: http://www.facebook.com/l/0a580eNdDWUEzr_ZtywByGjqW2w;www.curejm.org (Note: Names and emails will NOT be shared with anyone and are only used for daily voting reminders).

Cure JM Partners in Pepsi Gulf Projects
These groups in the Gulf Projects category are heavily supporting Cure JM. Thank them by using your additional votes in the Gulf categories, which are completely separate from the “regular” Pepsi Refresh voting. Voting links for the three groups we have aligned with are as follows:
http://www.facebook.com/l/0a580NC02G4Vkimv5W1P6uJBcgA;gulf.refresheverything.com/plci
http://www.facebook.com/l/0a580iI6HECgEjWhCqQJHh4J3Kw;gulf.refresheverything.com/mhc
http://www.facebook.com/l/0a580W_EmhYhDIGCaajmFqVCDLw;gulf.refresheverything.com/homesofhope2

Buffalo Humps and Muffin Tops, Welcome to the World Of Prednisone!

Buffalo Humps and Muffin Tops, Welcome to the World Of Prednisone!

This video is by Lisa Copen, founder of Rest Ministries; a Christian non-profit for the chronically ill.  Rest Ministries puts out Hopekeepers Magazine as well as hosting a social networking site called Restministries and Hopekeepers Sunroom.  I’m a big fan of Lisa, who started this all up on her own while battling crippling RA.  If you check out the site you’ll find a bookstore that has some really good books on chronic illness, invisible illness, and more. She’s definitely one of my inspirations, one of my heros!

OK, here’s my disclaimer.  This is not a paid advertisement for any of the above. This post is my opinion, from my perspective.  With that said, here ya go.

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Until next time

Docs playin peek-a-boo with diagnoses

Docs playin peek-a-boo with diagnoses

I have some good news-(drumroll please) I finally got Medicare ( woo hoo!!!!)!!!  I went 3 years with no insurance after I lost my job.  The amount of money I owe for medical bills is astronomical.  I think I can safely say that my credit isn’t credible anymore. No one will be giving me any loans in this lifetime, ha!  Good thing I have The Big C.  I told him if he tries to leave me I’m grabbing on to his ankles and he’ll have to try and run with me holding on.

Anyway, back to the Medicare.  My primary care doc has given me a referral to be seen at the big state teaching hospital.  Yeeeee hoooooooo!!!!!  I finally have some kind of coverage that gets me in the door.  I am so happy.  For the past 3 1/2  years I’ve had doctors scratching their collective academic heads and going hmmm.  Then I get a diagnosis, and I get it taken away.  Peek-a-boo! It’s here and then it’s gone…  The only one that hasn’t been taken away is the small fiber neuropathy.  That’s because I had a biopsy and they could actually see it and diagnose it.  It sucks that so many autoimmune diseases don’t have one clear test.  It’s more of a symptom game and then you have to have a rheumatologist who’s willing to put their neck out and actually diagnose you before the average 6 to 11 year time-frame.  As soon as I told my rheumy that I was going to be seen at the teaching hospital, he backpedaled on the Still’s and dermatomyositis.  Even though I have the rashes and skin issues that go hand in hand with each and solid bloodwork.  I just can’t wait to be seen at this hospital, I’ve been too sick for too long.  I’m going to be seen in the rheumatology clinic but was assured that they would take a team approach on me and try and figure out what’s causing my Cushing’s and chronic edema before I explode.  It wouldn’t be pretty that’s for sure.  I am flaring with my RA right now ( I mean UCTD again) so I’m in a lot of pain in all of my joints and it makes it worse from my hips down because of all of the water pushing the bones in my feet apart and the pressure in my knees.  As me and C would say, Oy! My pancreas! It’s what we say when we realize that either one of us is going on and on and on about body parts.  It means, shut up, you sound like one of those  people that like to tell you all about all of their aches and pains when you say hello.  If you could feel your pancreas hurting, your pretty much hurting everywhere.

Change of subject: Here’s kind of a happy thing, for me anyway-  I finally got Photoshop elements 8!!!!  I am a digi scrappin fool I tell ya!!! I also got a few new kits from a wonderful designer and friend.  And, I bought My Memories Suite. Yeah!!!  That’s where I’ve been spending my free time lately.  I am hooked. I could spend days just cruisin the online shops for kits, actions, or just elements.  But-I don’t have much free time, or not as much as I would like that is.

The other day I was searching for the video camera.  Our house is a little ‘cluttered’ now that I’m on a break from housework, ha!  I was going through stacks of stuff in the corners of our family room and I found my bag of knitting.  I just stared at it and was like, oh wow.  When is the last time I’ve seen that bag and how did I ever have the time to knit??  I remember sitting on the loveseat upstairs at night and going through new patterns.  What life was this in?  I swear there aren’t enough hours in the day now.  And I’m home all day so I don’t get it.  It seems like I had more time when I was working full-time, but how can that be?  Maybe it’s like money.  The more you make the more you spend.  The more time you have the more you need.  I don’t know but I felt a little sad just thinking about it.

I’m off to check on some websites and figure out which ones I’m going to drop.  I have way too many social media sites and I’m thoroughly addicted to those too so this is going to be hard.  I know for sure I’m keeping my Christian women sites, all of my photography sites, and facebook.  The rest is going to be hard to choose.  I’m leaving you with a few shots from this time last year.  Right now we are having a cold spell (12 degrees at night brrr) and at this time last year we had this freak snow-then-ice storm that left us without power, freezing, and me taking a million shots of the ice.  Enjoy and until next time

2michelle

Reaching
Reaching
Ice on Top
Ice on Top
Stuck in the Middle
Stuck in the Middle

no copy or use of photos allowed without express written consent from genius, uh I mean blog author  🙂

New Lupus Foundation Message Boards!!

New Lupus Foundation Message Boards!!

I’ve said it before I’m all about social networking.  When I got the email announcement from the LFA group from Facebook talking about the new message boards I thought, “yay!!!”.  If it hadn’t been for a Lupus message board on yahoo, I wouldn’t have met some wonderful people that I am so grateful to have in my life right now 🙂  I also wouldn’t have learned from some ‘veterans’ on the board how to keep good medical records, how to be my own champion when it comes to insisting on my full 15 minutes with the docs (if your doc won’t listen to you, leave em) and the importance of having a good packet made up for ER visits.  If you can’t speak for yourself during an emergency it’s good to have a file of the meds you are taking, the conditions you have, your rheumatologists number, etc.  Anyway, I’ve just signed up for the new message boards and if you wanna check it out the link is here.

a little funny

a little funny

I have been having a ‘sick day’. Been in bed most of the day and just got up and started perusing the internet. I came across this cartoon and thought it was funny. I recently read a story about a guy who was fired after he called into work sick and then posted pics of himself on his facebook partying in a fairy costume complete with makeup.

Good thing I’m already fired and I can post whatever I want, he he he

Monday continued…

Monday continued…

Have you ever tried social networking sites? I started out with a lupus support group when I first got sick. It took me 2 months to write my first post. I tentatively wrote with a question of which I had a million. I got a lot of responses and immediately forgot about the site. I was sick. I was scared. I was completely overwhelmed. One night I was in incredible pain and I wrote asking for some moral support. The response I received was overwhelming. Somehow I had found the place that would ultimately save my life and my sanity. I made “friends” with dozens of wonderful women from here to the East Coast to the Netherlands to Australia and Ireland too. I learned so much from these women. I learned to be my own advocate when it came to dealing with doctors, how to do research from reputable sites, how to speak up for myself. I lost my best friend when I got sick and I found so many new ones in cyberspace. A few of these women I consider to be my ‘best friends’ and we’ve never met in person. The power of social networking is unbelievable.

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