Making the Leap For Lupus

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lupusleaper
New Member


Date Joined Jun 2007
Total Posts : 8
   Posted 6/25/2007 8:41 AM (GMT -7)   
HI,
Just found this forum. I was diagnosed with lupus in 1989 right after my first baby was born. I had three more babies after that. Then the lupus started to progress and I got sicker and sicker. To make a very long story short... I ended up in the hospital in 2004 and was put on life support. The Dr.'s didn't give me much of a chance. My family started to make funeral arrangements. My lungs were hemorrhaging and they couldn't get them to stop. My kidneys were failing also.

Obviously I didn't die! I pulled through in spite of it all. I had to be on Cytoxan 75mgs. every single day for over a year after that. I was also on huge doses of prednisone. The drugs are horrible. I was told by one Dr. that it's like using a jack hammer to drive a thumbtack.

After my friends and family watched me go through this horrible experience we had a fund raiser to gather funds and money for lupus research. We did this through the LFA in 2005. It was called The Leap For Lupus. We broke the Pacific Northwest Women's skydiving record at that event and raised over $14,000 for research.

This year we have created our own non-profit foundation and now we're having another event here soon. This time we are going to attempt to break the Pacific Northwest record skydive of both men and women. We'll attempt to get 70+ people together in freefall. 100% of all the profits from this and everything else we do will go to lupus research. All of our board members and people working with us are volunteers. We have got some really great people doing lupus research where we'll put our money we raise and we'll be able to post exactly where every dollar is spent.

This new foundation we've started is taking off better than I'd hoped! I've got drop zones across the country contacting me and asking if they can join in and have their own Leap For Lupus events! We're collecting sponsors and donors and pledges. I've started a list of drop zones on our web page that will let anyone take a coupon, downloaded from our web site, to them and make a jump and part of the proceeds will go to Leap For Lupus for research. People all over the country soon will be "Leaping for Lupus" to find a cure.

Anyway that is pretty much my story so far. I'm really hoping to get you all better drugs or a cure soon! At the very least, more people working on it. That is my goal! I need it as much as you do!

Hugs to all~

Valinda Mitchell
Leap For Lupus Foundation

www.leapforlupus.org

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/25/2007 9:03 AM (GMT -7)   
Valinda,

I loved your story. It's refreshing to hear of someone being near death and then coming out of it and making the kind of contribution you're making. I hope you're feeling much better now and want to thank you for sharing your story with us. We have a wonderful group of people here and would love to see more of you. I've tried to get involved with other lupus forums over the years, but ended up hanging my hat here because of the active support and involvement I found here.

I do hope you health is better now.

Many thanks,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


lupusleaper
New Member


Date Joined Jun 2007
Total Posts : 8
   Posted 6/25/2007 9:40 AM (GMT -7)   
Thanks for the nice welcome! My health is doing a bit better these days. Lupus never really goes away though. We all deal with it each and everyday the best we can. Luckily I have great support from friends and family in doing this foundation.

I've been on other lupus forums also but this one looks like it's more frequented than most. Sometimes it's hard to get replies back from other posts. This is great!

Hugs
Valinda
www.leapforlupus.org

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/25/2007 6:33 PM (GMT -7)   
Valinda, thank you so much for sharing your story with all of is. You are really an inspiration and your story is amazing. I went to your website and am very impressed with everything you have put together and how much you have done. It's people like you and others at your oganization who will keep getting us closer to a cure and better, more effective treatment.

You are right that this is a very active forum. We are kind of like a family here and always welcome any new members. You would be a great addition here and I hope to see you continue to post when you have the time. Thanks for sharing this with us.

Take care and I look forward to hearing more from you.


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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


Post Edited (hippimom2) : 6/26/2007 9:58:38 AM (GMT-6)


lupusleaper
New Member


Date Joined Jun 2007
Total Posts : 8
   Posted 6/25/2007 11:09 PM (GMT -7)   
This forum is wonderful. I'm really impressed. I have posted on other forums but they're not very active anymore. I'm looking forward to getting to know everyone here. Thanks for the welcome!
How far would you go to cure lupus?
We're going to 15 thousand feet above the ground.
Come with us!
www.leapforlupus.org


kish
New Member


Date Joined Jun 2007
Total Posts : 4
   Posted 6/26/2007 12:42 AM (GMT -7)   
HI

you are truely an inspiration. I'm new here too. I haven't been on a lupus chat site before. I think it helps alot to speak about this with people who are dealing with it.

I think its great with what you've done for research. I'm from South Africa and we don't have anyhing like that over here :( But if I lived close by I would of loved to join.
If there is anything I can do on my side please let me know thanks

lupusleaper
New Member


Date Joined Jun 2007
Total Posts : 8
   Posted 6/26/2007 5:38 AM (GMT -7)   
Hi Kish!

Wow! Wouldn't that be amazing to have drop zones all over the world participating in the Leap For Lupus, donating money for the cure of lupus?
Right now I'm trying to get as many drop zones in America to join in. When they do I list them on the web site. That way people can visit that web site and see if there is a drop zone near them, down load a coupon to take to that drop zone and make a skydive. When they do this, that drop zone will donate part of the proceeds from that jump to the LFL Foundation. I've also got several drop zones that are donating part of the proceeds from all their tandems during the weekend of August 17-20th which is our annual Leap For Lupus event.

There are millions of people that suffer from lupus. When I was really sick my family and friends were at a loss as to what they could do to help me. Some of them gave blood. Some brought food over to the house. Some donated money to cover our expenses. All these things were great but now there is one more thing that people can do. Go out and make a skydive!

The more drop zones that will participate with the LFL Foundation the more people will be able to do this. This is a great opportunity to show just how far you would go to find a cure or better treatments for lupus. Hopefully by doing this we can shed a little light on a disease that has been largely in the dark. Maybe more people will take notice of people that are going to extreme lengths in order to help. The more people that do it the more people will take notice. I'm hoping to get a page up on the web site where you can see people that have made their "leap for lupus".

These are the ideas we are running with right now. If there is a drop zone in your area it can't hurt to call them and ask them if they would like to participate. They can go to our web site and click on the "drop zone" link and there is a place there where they can contact us to sign up to participate. If I can get enough people calling up all the drop zones near them and bugging them about joining us then maybe we can eventually get all the drop zones to participate. That is our goal!
Valinda

How far would you go to cure lupus?
We're going to 15 thousand feet above the ground.
Come with us!
www.leapforlupus.org


CaptSue
Regular Member


Date Joined Jan 2007
Total Posts : 279
   Posted 6/26/2007 6:24 AM (GMT -7)   
Hi Valinda,

Welcome to the site. Like Patty, I've "hung my hat" here. You can feel love and support whenever you log in and even take it away with you when you are not on! Before I got too sick, I flew a hot-air balloon so I am a commercial pilot (limited to hot-air balloons) but I have some connections still so I will poke around your site and think about someone who might be able to help out.

You are an inspiration to us all.

Hi Kish,

A welcome to you too. Hope you will let us know more about you. My daughter is on your continent (in Morroco) so it was fun for me to see that our site reaches that far away. Guess Lupus knows no boundaries.

Stay Strong,
Sue
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (off now)


kish
New Member


Date Joined Jun 2007
Total Posts : 4
   Posted 6/26/2007 6:29 AM (GMT -7)   
Hi Sue

thanks for the warm welcome. My doctor put me off the prednisone and replaced it with cell cept. It's really helping me alot. you should ask your doctor about it. :-)

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/26/2007 8:28 AM (GMT -7)   
Hi Kish,

I want to wish you a warm welcome too! Isn't it great that we can all get together and support each other no matter where we live. I hope you'll let us know more about you. I'm also on CellCept and it has done absolutely wonders for me. If you want to know more of the folks here you start your own message and tell everyone you're new here and a little about yourself. Hippi's right. We're like a family here and we love to get new family members.

Valinda, I'm happy you feel comfortable with this group of folks and I think you and Kish will be great additions to the forum.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/26/2007 12:35 PM (GMT -7)   
Valinda - Awesome news! Welcome aboard. It is encouraging to see people who strive and live through the worst to rebound and help others. The ideas you have come up with for Leap for Lupus are pure genius. So how are those babies of yours? I bet very proud. I would love to give my daughter that gift of positive spirit. In fact, I'll print this for her. Would love to be able to sky dive, always wanted to. I'm from Southern New Jersey (not by choice), is there anything I can do for you on this side of the Continent? Please let me know.

Hi Kish, welcome to the "family". Glad to meet new people. Love the energy it brings. There is so much for all of us to learn about each other and the disease. This has been quite enlightening for me and everyone here a blessing. I hope you find comfort and help here too.

Wish you both the best - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 6/26/2007 7:14 PM (GMT -7)   

Hi Valinda,

   Welcome to the forum. I agree with the others that you are a true inspiration to us and thank you so much for sharing your story. I also agree you will be a great asset to this forum with your amazingly positive attitude and thirst to find a cure for this disease.  I look forward to getting to know you better and I will check out your website. Tks again, take care and keep us updated. You will be in my thoughts and prayers.

                                                                 Babs

Kish, I want to welcome you as well and glad to hear you are enjoying this group. These are some amazing people here. So caring and kind. I'm glad the cellcept is working well for you. I hope you continue to get better with each passing day. Please keep us updated and take care. You will be in my thoughts and prayers.

                                                               Babs


 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


kish
New Member


Date Joined Jun 2007
Total Posts : 4
   Posted 6/27/2007 12:19 AM (GMT -7)   
thank you so will everyone here be in my thoughts and prayers. :-)

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 6/27/2007 5:23 AM (GMT -7)   
Hi Valinda and Kish.  I just wanted to welcome you both to our family.  I'm very thankful for this forum and the help from all of my lupus sisters.  Any time you need support, need to vent, have a question or just want to say hi, there is someone (and often many) who can help.  I'm looking forward to hearing more from you both. Hugs   

Dx: SLE diagnosed in 2005, major depressive disorder, diabetes, fibromyalgia, asthma, gerd, sleep apnea, hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone 10mg, flexeril, prozac, lamectil, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, advair, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax, albuterol
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 6/27/2007 5:29 AM (GMT -7)   

HI there, what an inspring person you are!! I have only been a member here for a short time, it was the first Lupus support group that I found and it will be the last. Everyone here is so amazing, I can come here and vent and have people know exactly what I am feeling and going through.

I live in Canada and think that what you are doing is awesome.

Do you actually jump too or just organize it?

Keep up the awesome work, way to go!!!

 

Connie


 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/27/2007 10:17 PM (GMT -7)   
Welcome to you both, Valinda and Kish!

This is the best forum for support and information and friendship and encouragement and even some laughs every now and then!

Valinda, I'm glad you have found a way to raise funds and "honor" the miracle that is your story.

Kish, it's good that you found this site. I know when I did, it helped me sooo much, I never left!

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


hatlady
Regular Member


Date Joined Mar 2006
Total Posts : 33
   Posted 6/30/2007 11:50 AM (GMT -7)   
Hi Valinda!
 
I've mainly been lurking these days....been a while since I've posted.  I'm always so amazed by your story!  I like the moniker you chose for this board as well.  For the rest of the people here - Valinda and I met on a different bulletin board that is all but defunct.  This one is SO active it is wonderful! 
 
I have a Tshirt and hat from that first Leap for Lupus -- AND a little skydiver toy!  I'm looking forward to the chance to add to the Tshirt collection with a 2007 "Leap" shirt - and a donation to the new foundation!  I'm so amazed that you've been able to do so much, Valinda, and knowing that all the dollars will go directly to research is just fabulous.
 
Many hugs to all,
 
Hatlady
~hatlady


lupusleaper
New Member


Date Joined Jun 2007
Total Posts : 8
   Posted 6/30/2007 3:53 PM (GMT -7)   
Hi Hatlady!
Wow! We meet again on the lupus forums! I'm very excited about getting you new hats and shirts! We should have them up on the web site soon for all. Getting a new foundation up and running is a lot of work therefore this year is moving a bit slowly but we're getting it. I'll keep ya posted!
Valinda

How far would you go to cure lupus?
We're going to 15 thousand feet above the ground.
Come with us!
www.leapforlupus.org

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