Why I Participate in the Lupus Walk, Now it is My Mission. Please help support.

 

It is the middle of October and you know what that means to us here at Butyoudontlooksick.com and in my family… It is Lupus Awareness month. For this month, I try to post mostly about Lupus or lupus related stories, reviews etc. I also spend a lot of time talking about my efforts with the Lupus Walk in my local area. It is getting closer…there is only 1 week left to fundraise until the walk (On Oct 16th). We need your help to reach our goal.  Yes, I rarely ask for your support, donations etc. on this site– but one time a year I do and now is the time that I ask for your support!
My personal walk page: http://www.firstgiving.com/fundraiser/Miserandino/miserandino

Many people have asked me why I choose to participate in the Walk Along for Lupus. Of course there are many other things I can be doing with my time on an early Sunday morning. Asking a women who has lupus, fibromyalgia and arthritis to wake up early and walk is certainly asking for a miracle. This year will be especially hard to get out of the house with a toddler. Hasn’t anyone ever thought of a sleep athon??

1. First and Foremost, I walk because I CAN. As basic as that sentence is, it is a simple rule. I made a promise to myself that when I started doing the lupus walks 15 years ago. That I would keep doing the walk, as long as I physically walk it. Well, in the beginning it was more emotionally hard then physically hard. I was still getting over having a diagnosis. I didn’t fully realize what lupus was and how it would effect my life. Although my body wasn’t hurting at the time of those early walks, I remember all the people I walked past as they struggled with the support of their families. Some on crutches, or walkers, and some quietly getting the support from holding tight onto some loved ones hard. In those early years, as I walked past these people, I realized that some day “those “people” could be me. I promised myself that every year- no matter what I am doing, I will walk…as long as I can, in this walk- because I can.

Now – don’t get me wrong…as time went on there have been times when I didn’t want to walk…maybe because of poor health, or bad weather, or just being too depressed that I even have lupus at all. My health has failed me a few times too scary to mention. But I will never forget, because this disease has not been cured. This disease hurts women like me in the prime of their lives. This disease not only hurts the person living with it- but it hurts the family and the friends.

I will walk…as long as I can, in this walk- because I can walk.

 

2. I walk because since my daughter was born, I have never went to bed more afraid, more stressed on how the next morning will be in my life. I need to feel good to be the best mom I know I can be. When you lie in a dark room and wonder if you will ever be the amazing and loving parent that you had dreamt you would be…because you might be in so much pain, that you can barely stand. I have an anxiety attack even thinking about if I wake up and can’t lift her or play with her…Then somehow she smiles and it makes all the pain and fatigue worth it. ..at least for another day. What is scary is that as an infant she had no idea any of this whirlwind of thoughts go through my head as we sing “the Good morning” song.
I walk for my daughter to have a healthier mommy. I walk so my family can worry less about me. I walk so that hopefully we find a cure, or treatment that will help the scenario of my daughter needing to help me. I want to be the one who helps her. I want to be the one who has sleepless night worrying if I will make it through the next day. I never want my daughter see or know my pain.

I walk for my daughter to have a healthier mommy.

3. I walk because I have turned this disease upside down, and instead of making this walk about something sad…me and my family turn it into a fun walk celebration. It is the one day we get to laugh in lupus’ face. We sing, we walk, we walk as a team. Young, old, friends, and strangers have all joined the team and join in the fun. WE have all these years. I have friends who I might not hear from in years- who always show their support for the walk. I have family members who send checks, or donate online every year. I have had friends who could barely donate themselves- so they decided to help by passing along the email and link to anyone they thought might be able to donate. Every little bit helps! For the past 16 years, after the walk we all gather at my mother’s house and we have a party!  No, it is not a “Yay Christine has Lupus Party”…. now that would be crazy! But it is a Yay! “Christine has a great life DESPITE Lupus Party!”. It really is a fun great day!
I see walking as a way to celebrate my life- 1 day a year. It’s better then a birthday!

4. Lastly, The Lupus Alliance of Long Island/ Queens has helped me and my family in so many ways that I want to give back. Whether I volunteer, work on their websites, talk to others with Lupus at symposiums…. or with this raising walk money- I do what I can. They have helped me- now it is my time to help then find a cure.
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What is Lupus? Lupus is a chronic, autoimmune disease that is hard to diagnose, difficult to manage and if not treated, can become life threatening. It disrupts the immune system’s ability to protect the body against viruses, bacteria and foreign substances. Lupus’ short circuiting of the immune system’s identification process causes it to create antibodies against its own cells and tissues. There is no cure for lupus; it affects both sexes and can strike at any age. Lupus affects adult women 10 times more frequently than men and is more prevalent than sickle cell anemia, cerebral palsy and cystic fibrosis, yet it is the least known of all major illnesses.
If you can walk- come walk with us by joining our team, registering online, and raising money. It is not too late!
http://www.firstgiving.com/fundraiser/Miserandino/miserandino
If you can donate! (Every little bit helps us reach our goal!) Then please donate. **Just imagine if everyone who read this, didn’t buy a cup of coffee, etc and instead donated just $5… there would be thousands…. everyone just doing their little part.
http://www.firstgiving.com/fundraiser/Miserandino/miserandino
If you need to send a check– please let me know and I will give you the address.
Many thanks for your support — and don’t forget to forward this to anyone who you think might want to donate too!
Thank you for your support!!!!
-Christine
www.ButYouDontLookSick.com

©2019butyoudontlooksick.com
  • Vickie Foster

    God bless for all you do! Hope you have a big spoon day…

  • Dottie Balin

    Good Luck on the walk Christine. Thanks for all you do for us with Lupus and “Spoonies”. 🙂

  • This posting brought tears to my eyes. Last night could not sleep and was so frustrated at Lupus, insurance companies, lack of understanding, lack of compassion, and having a flare- you know what that leads too. I have posted before and I also do Lupus walks, but this posting struck a chord today because iam also a mom. You represent so many of us fighting. Some quiet, some loud- but most of all=STRONG, FIGHTERS, LETTING LUPUS KNOW WHAT WE ARE MADE OF. Good Luck with the walk
    Know that you are touching lives everyday. Jennifer