Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

11/29/10 Thankful

Written by Katie. Posted in Thankful

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Today I am thankful for the people who inspire me.  I am thankful for the living examples in my life that have either overcome, or are living with chronic illnesses in the most positive ways that they can…

I have family members and friends with MS who are running marathons, working full time jobs, raising kids…

I have family members and friends who have beaten cancer, or are currently in the process of beating cancer. 

I have a family member living life to the fullest with PAN Vasculitis.

I have family members and friends who live with pain from chronic illnesses day to day, but still CHOOSE to live life to the fullest.

These are people who I consider to be heroes. 

When I was being tested for Myasthenia Gravis, my friend Theresa put me into contact with a woman she sings in the choir with at St. Thomas.  Her name is Lisa Gigliotti and her story of overcoming chronic illness and pain is incredible. 

Lisa Gigliotti was diagnosed with Rheumatoid Arthritis AND Myasthenia Gravis in her twenties.  When she was wheelchair bound, both her Mother and her Grandmother who were her caretakers (think feeding, bathing, dressing) were killed in a car crash on Christmas.  The pain she had to deal with was insurmountable but through it all she has remained hands down one of the (if not THE) most positive individuals I have ever met. Lisa has gone from living in a nursing home in a wheelchair, to becoming a successful attorney and now, law judge (who can now walk thanks to, I believe, 9 orthopaedic surgeries so far).

I have had the fortunate opportunity to talk to Lisa on the phone a couple of times.  I will never forget the time she told me, “Katie, I am so proud of you.  Has anyone told you that?  You are being such an amazing advocate for yourself, and you are so positive and have such strength.”  Her kind words brought on such a flood of emotions as she told ME, what I thought about her.  Lisa has always ended our phone conversations with “CORAGGIO Katie” (courage in Italian).  

Lisa later sent me the two books she has released so far with personalized messages written inside.  I have read her first book three times.  Whenever I have my roughest days, I read parts of Lisa’s book and it immediately puts things into perspective.  I am not sure if it is usual for people to come across books in their lifetime that change their lives forever.  But for me her book has done just that.

Through Lisa’s writings and advice, she has taught me so much…too much to include everything in this one post.  But here are a few:

That being the victim is a waste of time, and a means to kill any hope that is out there.  That there is ALWAYS hope and options, no matter what a doctor says.  That Italian Testadura (Hardheadedness) will get you very far in life if you use it for the right reasons.  When things seem to be slipping more and more out of control, there is always SOMETHING you can find that you can control.  That it is so important to embrace your loved ones, and tell them how much they mean to you and how much you love them each day.  That self-love is key.  That caretakers have a thankless job and I must acknowledge this and give thanks where thanks is due.  That no matter how scared you are, it is important to always take action and be the best advocate you can be because no one else will do it for you. That having a gratitude attitude each and every day is important for mental health.  That CORAGGIO is the backbone of getting through anything.

Lisa will NEVER know the impact she has had on my life during the last few months.  Her influence has been life changing for me.  I look at her like she is a celebrity.  Or someone that was sent to me at just the right time in my life.  Or a heavenly angel.   I cannot wait until the day I finally get to hug her in person and tell her how much she means to me.

Lisa has a website that I look at often.  You can find it here.

I have read her books, Coraggio! Lessons for Living from an Italian Grandmother Despite Illness, Pain, and Loss, and I am currently reading, Coraggio! Lessons for living from an Italian Grandmother. The Courage to Believe in Miracles.  I am eagerly awaiting the next two books she will be releasing in the next year.

I also want to include the links of Lisa telling HER story. I have probably watched them a few dozen times already; especially when I needed a glimmer of hope, or a reminder that there are always things I can take charge of.  This is part One, and this is part Two of Lisa telling her story.

And this is the link to an interview she gave to a Detroit news channel about her ankle replacement surgeries, that saved her legs from being amputated.  The interview happened just days after her elbow replacement surgery.

Lisa Gigliotti is a hero.  And I am thankful for her, and all of the other heroes in my life. 

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