running

After my husband bought his first iPod, I reprimanded him for being suckered into spending money on a fleeting product. I don’t trust new things.  I hate following trends and I am anti-establishment.  I am difficult to manage and opinionated.

I have been faithfully pushing and following 6 meals a day for years. I have been taught that it is the best way to support a strong metabolism.  When I heard about intermittent fasting a few years ago, I was not interested. Anything that involves the word fasting feels dangerous unless God is involved.  My co-workers were raving about the benefits for years, but they were all guys. My daughter lost 20 pounds doing intermittent fasting but she considers ketchup a vegetable.  My other daughter started to send articles on the neurological benefits of intermittent fasting and hmm.  So when I was struggling with injuries, weakness, and brain fog I considered making a change to my nutrition.

I LOVE, LOVE, LOVE my breakfast routine. I linger around the kitchen perfecting my bacon while watching CNN and FOX News.  How could such a beautiful routine be anything but beneficial?  The only way I could have survived the past year of morning news was my regular dose of bacon.

I impulsively made a decision to start intermittent fasting over a week ago. I rushed home to finish my dinner by 7 pm. It took a lot of self-control to make changes to my nightly routine but I stopped myself from grabbing another spear of asparagus and so it began.

I am loving this new plan.  I have so much energy and more time in the day.  I believe we should all become students of our own body.  The first few days were not great but things started to change.  My family knows not to call me 15 minutes before my feeding. My girls compare me to a vampire because of my attitude toward to 8-hour feeding schedule. Only two weeks in and I am not as crazy. I am more relaxed and my pain is gone. My brain feels different.  I have my six-month neurology appointment on Thursday and I am feeling pretty good about my choices.

 

You can google “the importance of 6 meals a day” and find a lot more articles promoting the benefits.  I would encourage you to watch the youtube video at 13.58 and research the research.  No one should tell us how to think because they don’t know how we feel.

What is intermittent fasting, and is it healthy?

 

 

I will keep going on this until I don’t feel well.

On Sunday, September 18th, I will be running the Philadelphia Rock ‘n’ Roll Half Marathon. It’s not my first race, or even my toughest one, but it might be the one that it is the most meaningful. I am racing for my niece and goddaughter, 6 year old Calliope Carr. Cal and I share the same birthday, December 23rd, and a devastating diagnosis. At the age of 40, with three young daughters, I learned that I had MS and that same year Cal was diagnosed with leukodystrophy. Leukodystrophy and MS are both white matter diseases. In these past four years, Cal has lost the ability to walk, talk, and eat. She receives hospice care. Since my diagnosis, I have fought to regain a sort of balance and reclaim control of my body. With determination, hard work, and the support of my family, I have fought my way back and am in the best shape of my life. I am ready to run, and I want to raise $5,000 to help kids with leukodystrophy.  These funds will support pioneering research that will help find a cure for leukodystrophies in a decade.  

It is not a great time to be adding  anything to my life.  Sending three girls to college within four years of each other was bad planning on my part twenty years ago.  Working full time in multiple positions has been taxing on my mind and body.  In addition, my MS moved forward without my permission.  This numbness in my feet that only disappeared after two miles into each run even in the summer, was the disease-not the cold New England weather.  I also discovered at my last neurology appointment that the unexplained pain in my jaw that had sent me to multiple dentists was Trigeminal Nueralgia.  When my Dr. said that some patients felt it was as painful as childbirth I said, “That sounds about right.”  I have also been feeling the heat.  My skin feels like it is on fire at times, especially this extra hot summer.

So today, I went for a run and ignored my feet because my legs still work.  I am lucky that there was no pain in my jaw when my alarm went off at 5 am. And, I am thankful we are out of a heat wave today. 

So why did I jump into this project and come out of race retirement? This spring, as we were quickly approaching the 4th anniversary of Cal’s diagnosis, I was reminded of phone calls from my sister four years ago.  Those phone calls have changed on both sides as both of our tragedies have progressed.

Four years ago, I realized that when someone you love is going through hell words are cheap.  I learned that I don’t know how she feels and her pain can not be my God’s plan.  I learned that I can not carry her load or give her a break from suffering.   I learned that this is her journey and I am just watching from the sidelines.  I have gone to her numerous charity events and cried.  Although I consider myself a beast in my life, standing in her corner makes me painfully weak, but I refuse to leave that corner.

This spring, my regular phone calls and texts were met with dead silence.   I kept reaching out to my sister but she would not call me back or respond to my texts.  She finally called me back and confessed that the typical conversation starter, “How are you?” is the most painful question when you are in the midst of a tragedy.  When you love someone all you want to do is help, but offering to help is just a waste of words. I made the decision to not talk about helping and do something.  

Honestly,  I did not always appreciate my big sister.  Growing up, I found her strength and conviction incredibly annoying. We were five years apart and she was Marcia Brady. I can still remember a bottle of Jean Nate’ she had received as a gift that she never opened and allowed to collect dust on her bureau for years.  I desperately wanted to crack open that bottle and become Farrah Fawcett with one Jean Nate’ bath.  I sat and watched that bottle go unused while she was busy participating in yearbook, French club, Latin club and more.  I am not sure all those clubs even existed but I did hear her drone on about all her activities. In high school, I refused to join any clubs as a way to rebel against the establishment.  I hated to conform to what anyone in our town expected from its high performing students.  Yes, I was a pisser and owe my parents a big fat apology.  So, while that bottle was never opened, and eventually disappeared when she went to college, it represented our differences.  I never understood my big sister and when people would tell me how great she was I couldn’t hide my surprise.   

My 80’s obsession

We were polar opposites growing up, but we have both changed and grown closer with time.  Even so, I am convinced that she would not open that bottle of Jean Nate’ and I would feather my hair and wear a red swimsuit with that bottle, no question.  

However today her determination is no longer annoying as I witness the beauty in her resilience.

When Maria started the Calliope Joy Foundation years ago, I came up with the idea to have a 5K in the Fall to raise funds. She was all on board until she came up with Cal’s Cupcake Challenge . Of course my sister would pick an event all about sugar and nix my run.  I love my sister, and her idea was brilliant. All plans for my run were dropped immediately and my sister redirected her focus on making her new goal a reality. In the past four years she has made Marcia Brady look like a slacker.   (Read her blog post about it: Four years later)

On September 18th, I will finally get to run for Callie and for my big sister. My MS has progressed, Cal’s disease has progressed, and both our lives have become more stressful. It will never be a good time to take on a new project, but it is time to make this run happen. When my sister and I speak, instead of asking the normal questions that have become too painful to answer, we discuss running jerseys and fundraising.   

I know you get asked to donate to many causes, but I need your help.  I have learned that every charity event is not about the t-shirt or food at the end of the race. Those names on the running shirts have meaning.  There is a smile, laugh and story that belongs to each name.  I will now begin every charity run with a little prayer.  I will pray for the name on the shirt, because they are so very special.  I will pray for the people that organized the race, because they’re hurting. I will pray for the strength to make a difference because this life is too short.

Please join me in supporting The Calliope Joy Foundation by donating or joining me on the run.  I’m hoping my sweat will be hiding my tears on that day.  I wish I could be stronger in front of my sister, but no matter what, I am in awe of my sister’s strength and Cal’s beauty. 

Although I will be weak from standing in my sister’s corner, I plan on PR’ing on this run, and hope that you can join me in supporting this tremendous cause.  I need your help to fill the streets of Philly with sweat drenched cupcake shirts and Cal’s name. We need runners for the 5K on September 17th or the Half Marathon on September 18th.

Join Team Cupcake

If you can’t join me on the run, please consider donating

Please donate here

Beginning a blog is a daunting prospect, especially since I don’t have faith in my writing skills.  After struggling with my words for years I was surprised to hear from my clients that I need to go public with my story.

At times, my train of thought can be described as a crop dusting of brain farts.  I was diagnosed with a learning disability at a young age and when you combine that with the distractions of motherhood, screen time and my most recent MS diagnosis, let’s just say this experiment could be a train wreck.   I will do my best to find some clarity in my calamity.

In 2000, I was living with Lupus and switched my career to fitness because I had seen the benefits it had on my health.  For 10 years I had a good run.  I completed multiple marathons, an Olympic distance triathlon, and a 200ish mile relay race. In addition, I survived three high-risk pregnancies. I was teaching spin, yoga, Pilates and training.  I was in a rush to live this life and did not want to waste a day.  

In 2010, my Lupus appeared to be in remission and I celebrated by bragging to all my fitness classes. I was a walking advertisement for the benefits of exercise.  I had grown accustomed to living in constant pain but I was thriving.  

36 Pounds ago!

36 Pounds ago!

A few months later I was out running and felt weakness in one side of my body with discomfort lasting 2 miles into the run.  At rest, I had tingling in one arm and vibrations down both of my arms.  I was exhausted all day and every day.   The final straw came when I was in Lenscrafters getting my eyes checked without any successful results.  It only seemed appropriate that such a life altering moment should happen at the Burlington Mall.

My doctor scheduled an MRI immediately and that was when they discovered the first lesion on my cervical spine.   My diagnosis was transverse myelitis and eventually MS.  

MS is not an easy diagnosis and the MRI was just the beginning of my journey with this disease. It’s a club that you would prefer not getting an invitation to, but I got the official invite after years of testing. The process for a diagnosis is  time-consuming and easily took over my life. First opinions, second opinions, and excessive tests.  Waiting rooms, needles, lab technicians, nurses and doctors became my social outlet. I slept during my scans and blamed it on my morning runs sandwiched between teaching two spin classes.  I discovered the best place to get a scan with warm blankets and good music.

I became the Roger Ebert of medical procedures. I was lucky to have a 5-star neurologist perform my first lumbar puncture. He was a true artist with a needle. He was delicate but efficient.  He played his role with the unique charm of a true veteran in his craft.  I cried and laughed before it was over and knew that he was the only neurologist I would trust with my spinal fluid.

I used to tease my husband that I thought my neurologist was just into me and that’s why he kept asking me to come back. After all, how many almost 40-year-old hotties did this guy get to see on a regular basis?  

During this time I was trying to be a good mother to three girls;  two in high school and one in middle school.  I vividly remember my OBGYN, after my third daughter was born, warning my husband about the impending hormonal craziness of the teenage years. Just like any good oracle priestess, her enigmatic prophecy became a reality at the most stressful time in our life.  I can still remember one dinner where we watched PMS get passed around the table like a bad cold.  

The peak of teenage years.

The peak of teenage years 2011

The worst of the high school drama was happening while I was losing my dad and coming to grips with MS.  My plan to move forward was unconventional and some would say crazy.   There was no manual for this life, so I had to write my own.  

January 2016 working on my balance.

Along the way I have shocked my doctors and friends.  I am strong and fit because of lifestyle choices, nutrition, fitness and NO pills. I even gave up my daily ibuprofen for pain(2400 MG a day). In addition, I have lost 36 pounds and transformed my life. Some people talk about all the amazing things they are going to do in this life and quit when things get tough… I used to be less inspired than those people. I used to be afraid of announcing a goal or aspiration.  It took me a long time to be different.   

Committing to and completing my goals is something I have learned in this crazy life.  I know if I eat a donut I will wake up in pain… so I don’t do donuts.  I know I could be in a wheelchair or using a cane in ten years if I don’t workout every day… so I get off the couch.  I force myself out of bed at 5:30 AM even when my body screams “no”.   

My next goal is to provide a weekly blog post. I will share how I handle stress and what motivates me to keep moving forwardSubscribe to my blog by adding your email address to the form on the right. You’ll be the first to hear about how I have shocked my doctors and friends!