I'm doing a Lupus walk

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Candii
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 9/28/2007 6:49 PM (GMT -7)   
Tomorrow morning my family and I are participating in our first Lupus marathon walk. We are walking 3 miles and it's supposed to be in the 70's. It should be a cool and wonderful day. We raised $270.00 towards Lupus research too. I am so excited. I finally feel like I am doing something positive and not letting Lupus get me down for one day. yeah I hope everyone has a GREAT weekend!!!!!!!
 
Rest and laugh all weekend!!!!
 
kitty
Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SLE '07,
Arthritis '07 ....Plaquenil, Relafin, Folic Acid (for mouth/nose sores), Multivitamin, magic mouthwash, Prednisone.


Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 9/28/2007 7:12 PM (GMT -7)   
Hey Kitty:

I'm so glad you feel up to doing to walk tomorrow. It's wonderful that you've raised money for those of us who lupus. I hope your day go great. Be careful of the sunshine tomorrow. I thank you for helping us out. You go girl and have a great time.

Love,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/28/2007 9:44 PM (GMT -7)   
I want to do the Lupus walk tomorrow too!!! You did great with your fundraising . . . let us know where you are walking!!

I wanted to do the Cleveland walk tomorrow . . . but I am just not up to the three miles yet. sad

Is your walk in Cleveland???? Sounds like our date and our temp!!

I signed up to help at the registration table or elsewhere, and I received a response that someone would contact me . . . but no one ever did confused

Its a pretty good drive from here, and I just don't want to get out there to be an "extra" person standing around, so I'm staying home mad trying to stay well . . . but feeling really left out too. *sigh*

On a good note, my son's Chicago Marathon Lupus fundraiser is up to $850 so far . . . yeahhhhh!!!

Have a great day at the Lupus walk!!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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hippimom2
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Date Joined Jul 2005
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   Posted 9/29/2007 8:48 AM (GMT -7)   
Good for you Kitty. Let us know how it was - the weather sounds great!! I'm going to try to do our lupus walk in Iowa on October 13 - the distance is 2 miles and I'm a little worried about making it that far, but I figure they'll have some help there if I can't make it.

Rosie, that is awesome about your son - make sure you give him a big thanks and a big bear hug from all of us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/29/2007 11:20 AM (GMT -7)   
Hi, Kitty. It sounds like a great day for a walk! I hope you and your family enjoyed yourselves. That temperature does sound great, but I hope you remembered to protect yourself from the sun anyway. It can still get you even if it's cool! Take care and let us know how it went. Good job!
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


Candii
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 9/29/2007 3:23 PM (GMT -7)   
Hiiiiiii Barb, Alwaysrosie, Hippimom, and Sharentrials!!!!
 
yeah   yeah yeah yeah
 
The Cleveland walk was FANTASTIC!! Alwaysrosie, I wish you could have been there. If you want I can find out how you can volunteer next year and someone will definetly call you back. And you'll have lots of fun. Oh and congratulation to your son on raising such a great donation!! He's great! Hippimom, even if you can't walk the whole 2 miles thats ok. Walk what you can and then just enjoy your time there. Take the whole family and have lots of fun.
 
I walked the 5K with my husband and our son (he's 8). And anyone who couldn't walk the 5K and were more challenged could walk a much shorter walk and still be involved. The volunteers were very nice. Starbucks donated coffee and donuts. And a realty agency donated lunch. There were purple, green and torquoise blue balloons everywhere. Anyone who was a Lupie got a hat. And anyone who raised certain amounts of donations got tshirts and sweatshirts. My husband and I each got a hoodie sweatshirt. And a lot of other stuff for Lupus. The walk was in one of the Metroparks and it was absolutely beautiful. It was in the low 70's. We saw an adult huge deer in the beginning of the walk and then a mommy deer and her two baby's towards the end.
 
I have never been to a Walk for Lupus before and I haven't been to a support group yet either. I guess it's part of my denial this last year. My husband and my son wore a huge sticker on their backs that said In Honor of....(my name). And that felt really good. I felt so supported. So this walk was very emotional for me. I didn't expect how many times I got misty eyed. Seeing how many people there that had Lupus really hit home. And there are families that have many members with Lupus. Also there were 26 people who had past away this last year in Cleveland alone. And they read there names and rang a bell for each of them. That was the only sad part of the walk otherwise the whole experience was very uplifting, fun and hopeful. Everyone was full of smiles and laughter during the walk. And the walk was a challenge for me. I was worried I wouldn't make it. But I just went very slow and I did it!!
 
I hope to do the walk again next year. And if you can't walk that far it's ok. You don't have to walk at all. Just be there with everyone and talk and laugh. We left there with our feeling so good and happy.
 
And now I'm going to take a nap. LOL. I'm reallllllllyyyy tired.
kitty  tongue
Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SLE '07,
Arthritis '07 ....Plaquenil, Relafin, Folic Acid (for mouth/nose sores), Multivitamin, magic mouthwash, Prednisone.


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/29/2007 7:23 PM (GMT -7)   
Hi Kitty . . . So you WERE walking in Cleveland!!! I'm SO sorry I missed the chance to meet you!

I got up early this morning and thought again about going, but there was no address on the site. It said Brecksville Reservation, but that is a huge park with more than one Entrance. I thought about just driving out there to check things out, but I just didn't feel up to it . . . I think I might have gone if my hubby had been able to go too.

I'm SO GLAD you had such a good time. I will make better plans next year to make sure I find someone to attend with me.

I'm so glad I heard about this event. I'll be watching for other events.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Bsime
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Date Joined Apr 2006
Total Posts : 1298
   Posted 9/29/2007 7:57 PM (GMT -7)   
We did one on the 23d in Naperville, IL and raised $83,000 as of last wednesday.  Money from pledges still coming in.  about 600 walkers and a few runners.
 
Not sure what our local support group raised but it was a substantial amount.  We are only in our 2nd year and beat Chicago which has been around for at least 10.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted 9/29/2007 8:39 PM (GMT -7)   
This may sound like a stupid question...

But I've always wondered how walks raise money. Once my friends did a walk for breast cancer, and they said they just walked. I know it raises awareness, but how does walking help? I've read in the above posts that money was raised and I think thats great. How is the money raised from walking though?
Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, nexium, furosemide, oscal + d


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/30/2007 3:26 AM (GMT -7)   
Hi Melissa,

When you sign up to walk, they will give you a personal web page. You are actually supposed to solicit donations by sending emails and making phone calls etc. The web page makes it easy for people to donate online.

My son is running in the Chicago Marathon ( 26 MILES ) in one week (Oct. 7) and went to an Internet site called Firstgiving where he signed up to run for Lupus. The Chicago Marathon isn't about Lupus, but Jason dedicated his individual run for Lupus. He and I sent out emails and gave the link to his webpage thru Firstgiving and he has raised over $900 so far.

I think many Lupus patients do the walk w/o soliciting donations. Oh, and there was a $20 sign-up fee to walk.

Great question!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Post Edited (AlwaysRosie) : 9/30/2007 4:31:30 AM (GMT-6)


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted 9/30/2007 5:53 AM (GMT -7)   
Thanks Rosie. It makes sense now. Good luck to your son.
Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, nexium, furosemide, oscal + d


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 9/30/2007 7:24 AM (GMT -7)   
There is a $25 registration fee, $30 if you sign up at the walk.  Participants can give more.  Teams are formed and these teams solicit individual and corporate donations as well.  The walk has sponsers and they contribute money to become one.  All the money goes to LFA of Illinois and is used for education and research on lupus.  The side benefit is that these walks raise awareness of the disease and make future fund raising easier. 
 
Many people struggle with lupus and don't know they have it.  So education helps many to get a proper diagnosis and treatment.  It also brings lupers together who can share their problems and support each other.
 
Overall, a good thing. 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Candii
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 9/30/2007 7:50 AM (GMT -7)   
Alwaysrosie, Ok next year lets meet in Cleveland and walk together. Or we can sit and enjoy lunch. We were only there for 3 hours and the time races by. I would love to meet you!!! We'll have lots of fun.
 
I raised most of my donations the old fashioned way of door to door knocking. I had a few donations come in online. But I loved going door to door with my son, talking to all the neighbors and getting donations. We had a blast. I want to walk again next year. But next year I'm going to take more breaks and walk slower in the beginning. This morning I'm still tired and a little sore but it was well worth it.
 
kitty
Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SLE '07,
Arthritis '07 ....Plaquenil, Relafin, Folic Acid (for mouth/nose sores), Multivitamin, magic mouthwash, Prednisone.


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 10/1/2007 6:49 PM (GMT -7)   
Hi, Kitty. You sounded like you had an awesome day! While I doubt I'd be able to do any walking, I'd love to be at a walk and do some kind of "sitting" volunteer work. Unfortunately, just keeping a support group going in this area of East TN hasn't been easy. I know a few years ago (long before my diagnosis), one already folded in Knoxville. There was only 4 including myself and my bf, attending the Sept. local support group meeting. We don't even meet all summer long, so Sept. was the beginning of the fall meetings. I just hope we can have more participation coming up because if there's not I'm sure the LFA won't continue financially supporting it. Good job for you though! Congratulations,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2007 8:01 PM (GMT -7)   
Hi Kitty . . . its a date!!! I really DO want to walk it next year. I talked to the one of the gals at the Lupus Foundation today . . . she apologized for not getting in touch with me and she said that they had more help than they needed . . . but I'll plan to come next year, Lord willing.

Hey Sharen!! Glad you are attending those support group meetings. I always want to go to ours, but something always gets in the way. I'm glad you are there at those meetings for anyone who may show up and needing some good advice.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 10/1/2007 9:04 PM (GMT -7)   
Kitty!! You go girl!!  That is awesome what you did.  And for everyone else doing this.  I think you are rockstars!  Good on YOU!
 
Love
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


kpeachy75
Regular Member


Date Joined Sep 2005
Total Posts : 250
   Posted 10/4/2007 1:18 AM (GMT -7)   
THat's awesome! I hope we can get something like this done in SW Ohio. I've been in touch with the Cleveland chapter about getting more stuff going on down here. (Although they are in the state, they're 5 hours away which has made the lupus conversations down here few to none.) Good luck!
Take care,
peachy
 
Diagnosed with lupus in May 2005
 
Daily Medications:
Prednisone, 5 mg
Imuran, 50mg 2x a day
Warfarin, 5 mg / day
Zoloft, 100 mg / day
Plaquanil, 200 mg 2x a day
Nexium, 20 mg / day
Tramadol, 50 mg 2x a day (as needed) and Tylenol
 
Supplements
1500mg calcium
2000 IU of Vitamin D
400mg magnesium
Centrum Silver (and I am 30!)

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