Walk to End Lupus Now 2014

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Walk To End Lupus Now

Cincinnati, Ohio Fountain Square

May 10, 2014 More details can be seen by clicking on the links below as to the time, etc.

Here are the links to my personal page and my team page in case you want to help out. Donations can be securely submitted online. 

My personal page: http://walktoendlupus.kintera.org/cincinnati14/jenlynn401

My team page is: http://walktoendlupusnow.kintera.org/cincinnati14/beautifulbutterflies or click on it from my personal page.

Each year, our area has a lupus walk. Since they began, I have participated each year. Do I walk? Well, the first year I tried and made halfway. Yay me! Since then, I have resigned myself to being a volunteer and leaving the walking to those who are more physically able to do so. This year may be different but for an entirely different reason.

This year I have a wheelchair. I might be able to go if I can have people to wheel me. Wow! Who knew something so simple could change things in such a big way.My team has grown so much and this year we are determined to break over the 1k mark in donations. Technically we did last year but did not get recognized because it was done the day of the walk, not prior when it counted towards a plaque.This year, we are determined to do more and have more walkers too. 

Many of my former classmates have joined in the fight. Last year, four of them walked and raised money. This year, we are hoping to have more classmates join us. Last year, three of my grandchildren walked along with a friend of theirs. They have said they want to walk again this year. I am hoping to get my kids to walk too. My mom has walked for several years now and at 74, she is almost the oldest walker there each year. My mom is buff, and athletic. She can do a walk like this in her sleep. It’s not so much that she walks, but that she is there showing support for me. It really does help me knowing my family is supportive by participating. My grandkids love to walk. They do not raise money themselves, but I raise it for them and they all earn their walk t-shirts and other prizes!

Why do I participate? Well, for starters, lupus can be a genetic disease and I have 13 grandchildren, 11 of which are girls and three of which are of an asian genetic mixture. My grandkids have a better chance of developing this disease than most “normal” folks. It’s important to find a cure before they go through what I have gone through. No one wants their kids or grandkids to suffer with a debilitating disease like lupus. I am no different, other than the fact they are at more risk for the disease so I am proactive in helping in any way I can to find a cure. 

In case you didn’t know i already, I participated in the drug trial for benlysta, the only new drug developed in the fight for lupus in over fifty years that was developed FOR lupus. Until this drug, lupus patients were using drugs developed for other diseases, that helped lupus, and fighting a myriad of side effects from those drugs. This new drug is promising and really helped me while I was on the drug trial. Science is working on many more biologics in the same way to try to pinpoint ways to minimize  the effects of this disease and aid in the quality of lives for lupus patients. I am proud to have been in the drug trial and hope by helping out now, I am in some small way helping out the future generations of my family, and many others, not to deal with the damage this disease can cause.

I also walk each year because it makes me feel like I am in control of this disease in some small way. I cannot control much of what happens in my diseases course. However, by doing the walk each year, it gives me control to raise money and feel like a worthwhile member of society. I had to quit working several years ago because of lupus. I gained a lot of self esteem working and enjoyed working very much. When I was forced to stop working, it really hammered my self esteem and feelings of self worth. In some small way, doing this walk helps me to feel productive again. It gives me a focus to channel my frustrations and move towards finding a cure. While I might not live to see that cure, I can rest easy knowing I did SOMETHING to bring about it at least. 

Another reason I walk is for those who have lost their battles with lupus. I personally have known several who are no longer here. The reasons the lost their battles are different, which is normal in lupus, and vary from heart issues, to lung issues, to kidney issues to even suicide. Yes, suicide. I have known one person who killed herself because she could no longer live in  the pain she was dealing with. I do not judge her. She was so inspiring to those of us who knew her and yet she was overwhelmed by the pain f this disease to the point she felt she had no other choice. I get that. Totally. If it were not for my faith, I could very well have done the same. There are days when I feel that I cannot go on. I do though because I want to show others that they can win this battle. I might not in the end but the example I am setting for my grandkids makes a huge difference in why I fight each day!

Our walk here in Cincinnati is a BIG DEAL to me! There are many more reasons why but I just discussed a few. If there is a walk in your area, please get involved. It can give you hope and strength to meet others who know your pain, your challenges and give you more insight into this hideous disease. At the top of this post, you can see the date and place of my walk. If you are doing a walk, please comment your walk particulars and in that way others who live near you or I can join in the fight for a cure. Start just by going. The first couple of years I did the walk the only one who walked with me was my granddaughter Audrey. Over time,more family and friends have joined int he fight and last year our team had around 15 people on it! Not bad for the simple beginnings.  

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