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Should I or Shouldn't I?

Saturday, April 21, 2012

I'm currently in the process of fundraising for this year's Arthritis Walk. I did the Walk last year and raised almost $2100 and decided to try to raise near that again this year but didn't know if I could do it again. Well, as of this morning, I've raised $1875 and then this afternoon, I received the following email from my location's organizer:


Hi Joanna,

I have been watching your phenomenal fund raising efforts. When last we emailed you thought perhaps you would not be able to rival last year's performance but wow you are moments away from $2000.00

Joanna -- an additional part of my role beyond planning the Walk details is to create awareness about the Walk and its people and purpose.

Would you please consider taking part in a newspaper article with me in your community?

Next steps would be with your approval I would use the story from your Walk webpage to create a news release. I would send the release to you for approval. From there I would send it to the appropriate editor to ask for support and coverage. The reporter may cut and paste the release as is or may follow up with you for further details and ideally a photo opportunity.

As you can see below my signature I have done this a few times and found great success.

Ideally I would like the article to run early May so the article has a spin of "a month from now" or "next month" Joanna will be .......

Thank you again for your efforts, I hope this is an opportunity that interests you.

Sincerely,

Heather Pickles
Special Events Coordinator - Burlington Office
The Walk to Fight Arthritis - June 10th, 2012


And, here's what my page says for my arthritis story (thanks to TMANNY for some assistance on writing my story):

On Sunday, June 10th, I am participating in the Walk to Fight Arthritis. I am walking and raising donations to support nearly 4.5 million Canadians who live with the pain and disability caused by arthritis. Please consider donating to me and supporting this important cause.

In September 2004, I was diagnosed with the autoimmune disease, Rheumatoid Arthritis (RA). When you tell people about it they say 'oh ya, my granddad has thatí or `I have that, too. Itís in my knees'. All they hear is the "arthritis" part. Unfortunately RA isnít that simple. Basically your body decides that your joints and organs are its enemy and goes to warÖitís more of a chemical war than a hand to hand combat, so itís like having acid poured on your joints and organs. Now imagine what that does to your body. Not only is there pain, but fatigue, fever and flu-like symptoms. The pain you learn to live with and can push through it to do your day-to-day stuff but the fatigue is the one that can really knock you down. This is a fatigue like none you have ever felt. Personally, I need at least 9 hours of sleep a night and 10 is even better.

The medications that are available do help a lot of people but there are many more they donít work for or they work for a while and then just quit. It took my doctor almost 5 years to find a medication regimen that works for me. This is where the Arthritis Society comes in as they help fund the research needed to create new and better medications. The main medicine Iím on now is whatís known as a biologic. I get it by IV four times a year. It takes about 5 hours to receive. It has lots of scary side effects like progressive multifocal leukoencephalopathy, a rare brain infection, plus heart problems, serious infections, low blood cell counts and there are infusion reactions, too like hives, swelling, dizziness, blurred vision, drowsiness, headache, cough, wheezing, or having trouble breathing while receiving or after receiving it.

The other problem with a lot of meds especially biologics is the price. Theyíre very, very expensive. So you look at the medication choices and you think well maybe the meds are worse than the disease but then I think about the loss of mobility, the possible joint destruction, the possibility of becoming crippled, oh and the chance of deathÖ yes unfortunately RA can kill you. Now picture all of this in a child because kids can get RA too. Now decide do you want to help fight for a cure? Please help me in the fight of my life the fight to find a cure for RA and other autoimmune diseases.

THANK YOU!


So, should I or shouldn't I?
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P.S. This is not a solicitation for donations.

  
  Member Comments About This Blog Post:

CATHOLICCORGI 4/24/2012 6:52AM

    Go for it, Joanna!
My co-workers grandaughter is 8... she has Downs Syndrome AND RAD! As an adult, I can comprehend havign this disease and living with it. Hailey does not quite grasp it, but she is always cheerful and always smiling. How I pray to be more like she is!
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DEDICATED2HIM 4/21/2012 5:28PM

    hi Joanna,
YES, please do the arthritis walk on behalf of those of us who are sidelined this year! I was so excited to do the walk in May (in my area) and had to kiss those dreams good bye because of health issues. Go for it girl! and let me know how I can sponsor you...If the info is in the blog, forgive me....I'm going back to look.

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GAELA-I-CAN 4/21/2012 3:03PM

    Hi. You are definitely an angel. I have been unemployed since Nov., so I have no money to give you, but I can send you thanks and prayers. I am HLAB27 positive
. I have been on medication since I was forty. In Oct. I WAS diagnosed with renal failure, and I had to go off the meds. than I lost my job and I had no money to go to the doc to find any meds that I could take without damaging my kidneys any further. So here I am in constant pain, and I must go back to work. What a delema. Well I do thank you and look to you as a source of inspiration. emoticon emoticon

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March is Autoimmune Awareness Month

Tuesday, March 13, 2012

March is Autoimmune Diseases Awareness Month. Please share this graphic to help people understand the effect of autoimmune conditions such as RAD (rheumatoid autoimmune disease) on the body.

  
  Member Comments About This Blog Post:

KIMMYWIZZIE1 3/13/2012 8:04PM

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ELISOS 3/13/2012 1:51PM

    Thank you!!

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SEATTLE58 3/13/2012 10:53AM

    Thanks! emoticon

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NYKIMMIE 3/13/2012 9:13AM

    emoticon

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CATHOLICCORGI 3/13/2012 8:19AM

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Countdown to the 5% Spring Challenge - Assignment 5

Monday, March 12, 2012

Current Weight: 219 pounds
Target Weight: 208 pounds
By When: May 12, 2012

Daily Calorie Requirements:

Calories Eaten: Eat between 1,290 - 1,640 calories per day
Calories Burned: Burn 1040 calories per week
Weight Progress: Go from 229 to 209 by 05/12/2012

  
  Member Comments About This Blog Post:

SEATTLE58 3/12/2012 10:39AM

    Good for you in making this commitment! It really is a mind over matter, isn't it?! emoticon emoticon

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RA vs RAD

Thursday, March 08, 2012

I just finished a novel called The Secret Life of CeeCee Wilkes where the main character has rheumatoid arthritis (RA). So, I sent the following email to the author:

Good afternoon.

I just finished reading The Secret Life of CeeCee Wilkes by you and it was the first novel that I've ever read by you. I was intrigued to see that the main character has RA as I do as well. Recently, the Rheumatoid Arthritis Warrior (rawarrior.com) has spearheaded possibly changing the name of RA to Rheumatoid Autoimmune Disease (RAD) because as long as "arthritis" is part of the name, people aren't going to understand that we don't have what their grandparents have. Here's the blog about it in case you're interested:

rawarrior.com/we-refuse-to-be-mislab
eled-updating-rheumatoid-arthritis-ra-
to-rheumatoid-autoimmune-disease-rad/


If you're swayed and if you have characters in future novels with RA, perhaps you could use the proposed name (RAD) instead of RA. Just a thought.

I'm looking forward to reading more by you.

I hope you are having a good and pain-free day.

Joanna

And, here is her response:

Joanna, thanks for writing. You probably know that I also have RA. I love the idea of this name change. it's much more appropriate. I'll do a little more reading on the RA warrior site to see how I feel about it after educating myself to the pros and cons. Doubt I'll ever write another character with RA, but I do have a public forum through my blog and FB page and am happy to soeak up publicly once I've explored the issue a bit further.

Thanks for the heads up!

Diane

Cool, eh?

  
  Member Comments About This Blog Post:

ELISOS 3/13/2012 3:38PM

    emoticon emoticon

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SEATTLE58 3/9/2012 3:11PM

    Yes, very cool, so glad that you could suggest that! emoticon

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DEDICATED2HIM 3/9/2012 1:06PM

    Hi Joanna,
Great blog....good for you to approach the author of the book! It sounds like one I would like to read. I'll have to check it out...
BTW I LOVE your back ground and color choices for your page...Beautiful...
Come Spring, Quickly!
blessings


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SERENEMOM71 3/9/2012 12:52PM

  I believe that people might understand the disease a little better if it was RAD instead of RA. People think it is like OA and it takes a lot of explaining to educate them. If the word autoimmune was already in the name of the disease, it would be so much easier. Take it from the word of this tired "old" RN who would like help from the very beginning when educating family/friends about the illness! emoticon

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CAPTHAMMER 3/8/2012 2:59PM

    I hadn't yet heard of this proposal but I also highly agree with the value of the change.

I was first diagnosed at age 18. Like you mention, when told I had Rheumatoid Arthritis I assumed it would be like the sore joints my Grandmother complained about. If it had been more clearly defined to me as an autoimmune disease I might have been more aware of potential health issues down the road.

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Spring 5% Challenge Commitment

Thursday, March 08, 2012

The new 5% Challenge starts Saturday, March 17th.

Exercise - I promise to exercise for at least 30 minutes 5 times a week, which will include exercise DVDs incorporating strength-training and cardio and lunchtime walks.

Food - I promise to eat following the calorie range that SP has given me and I will eat within my calories for a minimum of 6 days a week every week.

I also promise to drink at least 6 cups of water every day that I'm not traveling or in meetings (for obvious reasons).

I promise to eat lots of fruits and veggies and minimise my bad fats/junk food.

I promise I will check in with my team daily and leave a comment on the Discussion Board a minimum of 4 times a week.

I promise that I will read and comment on team members' blogs when I have time.

I am committed to this challenge and I promise to do the best that I can and my hope is that I will lose my 5% permanently or at least significant inches!

  
  Member Comments About This Blog Post:

NYKIMMIE 3/9/2012 3:04PM

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SEATTLE58 3/8/2012 10:34PM

    So excellent, awesome and all that other good stuff! They say that it really helps to write goals down and you did! emoticon

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CAPTHAMMER 3/8/2012 12:15PM

    Double post because I meant it soooo much!

Comment edited on: 3/8/2012 12:16:39 PM

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CAPTHAMMER 3/8/2012 12:15PM

    Go Daisies! emoticon Go Daisies! emoticon
Welcome aboard. You've set up a good plan. Can't tell you how much I agree with your last point that inches are every bit as important as pounds.

I hope you find The Daisies to be the supportive, encouraging team that we attempt to be. And by the by, Loooove your new wallpaper. Gorēgeeēous!

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