Multiple Sclerosis

My first marathon was an impulsive decision I made in my 20’s before my frontal lobe was fully developed. Since that first marathon, I have run a total of 5 marathons and was celebrating a conscious uncoupling from marathons for the past 10 years.

The first time I ran a marathon

  • iPhones did not exist
  • Texting was fancy
  • I listened to music on an MP3 (because the iPod was a passing fad)
  • I had 2 weeks to train.

I was a young mom with three babies, 4-years old and under. I had survived three high-risk pregnancies with three healthy girls and was a trainer in a gym. I was living the miracle and felt a little invincible.

I had two weeks to train. I had no idea I was even on Heartbreak Hill during the marathon.  I decided that when you are not running really fast it does not matter as much. I did not know how many miles was in an actual marathon.  There was no “search engine” to fully understand what a marathon entails. My training was a 9 mile run the weekend before and a chat with an experienced runner on the bus ride to Hopkinton. That bus ride probably saved me a trip to the hospital that day.  Who knew those water stations were important?

Currently, at 44 my life and legs have changed.  My girls are calling me excited about their college classes.  My father is not available to get nervous about my crazy life choices. And, my life has helped prepare me for this marathon.   I made the decision to run this time for, Cal, my running motivation.

https://www.youtube.com/watch?v=VqvZabxJHqs

The training was going great until July. I had to take a month off because of weakness in my left leg and the summer heat.  Today I finally felt strong enough to run a solid distance.  It takes a lot of planning for me to run that distance, now.  I don’t understand how my body works but with a fully developed frontal lobe, I am very careful.

I decided to add caffeine to my life again and only drink one cup of tea before my run. I am still intermittent fasting which means it has to be timed perfectly in the day.  I am trying to add more yoga to my schedule. Today I crushed my 10 miles in under 90 minutes and was able to work a full day, walk the dogs, bathe the dogs, fold laundry and clean my house(“clean” might be a generous description of my house..cleaner is more appropriate).

I am thrilled that I hit my goal this morning and I am ready for next week. My goal is 11 miles.

 

 

Breaking up is hard to do, but last week it felt great.  I just renegotiated my relationship with my neurologist.  Six years ago I started my journey with MS. I was tired and weak. Last week, I asked my doctor if we could stop seeing each other every six months. It was a long road to get to that appointment

FullSizeRender (59)

No, I was not pregnant in this picture. I was getting ready to send my oldest daughter off to college and I was exhausted, stressed and very sick but life did not allow me to make any changes. I was on a crazy roller coaster for the past six years with many ups and downs.

I made many changes in the past six years but this photo was the BIG change.  I knew that I needed to cut stress out my life and make a complete overhaul with my nutrition. I told my doctor that I was not going take any meds after I snapped this picture.

IMG_2332

Yesterday, I validated my decisions and I bumped up my MRI to every two years instead of every year.  I will visit with my neurologist every year instead of every six months.  I am still med-free. I continue to read my body and make adjustments.

I have learned to run from stress and make the necessary adjustments to my nutrition and fitness.

Two months earlier I was hurting.  My left leg was weak and my knee was killing.  My pain was around a 7 and I was tired.  I tweaked my life and it worked. I quickly eliminated stress.  I was careful with my distance runs.  I focused on some balance exercises and added more yoga. My favorite change was intermittent fasting.

I don’t have the perfect plan for success. My emergency phone tree is completely different.  The quantity and quality of my support network were overhauled.   I love my new village!  I will continue to make adjustments and I am little excited for the next chapter but I am cautious.

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.

I am not a doctor and have no background in science. I am unwilling to study the why of my life. I don’t understand how my body works or why it won’t work.  It has been almost four years of this TMI life, and yet because I don’t wear a neon sign stating the obvious, smart and kind people dismiss my journey.

Second opinions were not enough for my diagnosis.  I have met with 4 Neurologists (two of whom were MS specialists ) and 8 Rheumatologists over my lifetime. I won’t include the countless PCP’s, OB/GYN’s, and all the extra doctors in the room during my appointments.

A conservative estimate of twelve specialists at the best hospitals in Boston questioned the diagnosis and have come to the same conclusion.  Please don’t see me for a few minutes and make a diagnosis from your kitchen counter.

Chronic illness can be invisible. Please keep that in mind when you hear about a friend with a diagnosis.

I stopped trying to categorize my symptoms and I don’t dwell on the hiccups of my life. I am, however, tempted  to get a neon t-shirt that says, “It takes a lot of work to look this good”.

I am not usually vocal about my illness unless I am sitting on a paper roll, but 93% of communication is nonverbal.   I was monitored for three high risk pregnancies and spent two months in the NICU with my premature baby. I listened to my doctor when she told me that my body was too weak to carry any more children.  After 26 years, my husband can read my pain with spidey sense. My cleaning lady knows when my sheets are drenched from night sweats. A keen eye can recognize my awkward gait after a long car ride. But, when people question my diagnosis it is painful and dismissive.

Last month, I had my annual MRI and my neurologist was impressed with everything.  I improved with every test except one.  I struggle to walk across a room with one foot in front of the other.  I promised that I would practice and next time I would dominate.  He laughed with my intense focus. I have learned that great warriors are neither perfect nor lucky, they just know how to handle adversity and know when to surrender. I am a warrior, constantly adjusting,

I run everyday and at the beginning it feels like I am Kaiser Soze from The Usual Suspects.  My gait is awkward and I can’t feel my feet.  It usually takes me about 2 miles to feel my body but I still run.

https://www.youtube.com/watch?v=rQv2-JCpKMk

My initial walk/run is awkward and slow but I can finish like Tom Cruise in a Mission Impossible trailer. I like to focus on the Tom Cruise image but that is not who I am.

Three years ago when I dropped my daughter at college, I was struggling with daily fatigue and weakness. During orientation weekend I made a quiet arrangement with my legs. I would respect my body and walk up of those grueling Ithaca, NY hills, but by the time my girl graduated I would be running the hills, not walking. I am on track to reach my goal from three years ago, but I am not comfortable.  I did not walk up any hills this year during my visits to Ithaca but she has not graduated from college.  

IMG_5707

Visiting my girls at college one week apart.  Same legs but the difference between running in Ithaca, NY vs. Philadelphia

Lately, I have experiencing random numbness and weakness on my left side.  I was exhausted last month and struggled to get going during the day, but today I feel good.  I am not immune to my immune system.  My crazy intensity has not cured me of anything but I will move forward and adjust.  

I understand that I have some individual successes from the past four years, but I am not satisfied with the results. I will work this year to maintain and get stronger for her graduation and beyond.  I will own my weakness and make it my strength.   I will practice my walk with my regular insane intensity before my next 6 month neurology appointment. I will run today and finish like Tom Cruise.  Eventually I will surrender with the understanding warriors are not born , they are reinvented every day.

There was a time in my life that every time I faced some bad news I would say “At least it’s not…fill in the blank.”  And life kept filling in the blank.  I stopped using that sentence as coping mechanism, because it became a painful foreshadowing.

So three years ago, when a medical test sent me to my couch for the day I decided to take it as the opportunity to watch a long list of sad stories with a large bag of chocolate. I figured that watching other people’s pain would help me see my life’s blessings.   I started with some Dr. Phil and giggled at those amateurs. I moved to a cancer movie with Joseph Gordon-Levitt.  When he used his disease to pick up ladies, I didn’t laugh. He ended up in a great relationship with a gorgeous girlfriend and his family came together as a team to support him. The pinnacle was when I watched the Piano and started to cry when I realized that this Holocaust victim had a talent and hope for the future, that I couldn’t see for my own.

When you spend a day watching sad movies and can’t find a storyline as difficult as your life it can be eye-opening.  I decided to write my own happy ending with my life’s new screenplay and had to stop waiting for my wishes to come true. My three years was a long painful uphill battle, but it felt like it was working.

In September, I came out of running retirement for my niece, Callie, and the foundation that will save children with her disease.  A disease in the same family as my MS. The run was challenging because of the distance and the unique humidity.  It was poetic that an invisible obstacle weighed me down. My shoes and clothes became a weight  that the world couldn’t see but it impacted every one of my steps.  I remember feeling like that humidity was similar to the white matter disease that changed the course of my life three years ago. My shoes were so wet it took days to dry and there was never a drop of rain that day.

It was an emotional journey and with every step, I changed.  I started the run with a sprint and  by the end, there was no gas left in my tank.  We were writing our own happy ending that day and sometimes that takes everything you have and even the hidden reserves.  My damaged spine and sick legs helped me raise over $6,000 in 88 days and carried me for 13.1 miles.  It wasn’t my fastest run but it was the most effort, because of my niece and the money we raised.  It was those quiet notes and gentle hugs from my new community.  Those lovely people that made sure I crushed my fundraising goal. Those beautiful people that helped me write a new happy ending. My happy ending did not grant me any of the wishes that I dreamed of on that couch.  Callie is not cured and I can’t visit with my dad in this new reality.  My happy ending has a new landscape filled with new characters and some of the best original characters.

Many people were worried how the training and run might take a toll on my health. I admit it was in the back of mind.  I was worried the extra physical stress would lead to a flare up.  I had a stressful summer managing my daughters, working and training.  My hair was not brushed during this time and I was close to having dreadlocks.

After my run, I missed my regular six-month neurology appointment because of my commitment to the fundraiser.  I was able to schedule a new appointment right away and I had a doctors appointment that seemed unimaginable from that couch.  My husband, doctors and I were giddy with the results.  The young fellow took notes about my recent half marathon and was shocked with my time.  He tried to do the math and asked if I ran a 10-minute mile.  When I told him it was around an 8:30-minute mile, he was shocked. I passed every physical test with flying colors. I felt like a gifted Kindergartner reading Harry Potter in front of the class on the first day of school.  The fellow referred to my disease as subtle and my husband joked that was the only subtle thing about me.  My husband and I celebrated our hard work over a quiet cup of tea and cookie.   It was a great day that I won’t soon forget.

Soon after during a short celebration, I had an unimaginable stressor pop-up in my life.  And in one day my legs didn’t work.  I didn’t sleep well and had a hard time walking the next day.  Those legs that carried me for 13.1 miles and helped me raise money, stopped working.  MS is a mystery, but for me it became clear.

It took me a long time to get back on track.  I followed some simple rules to rediscover my happy ending.

Eliminate Stress – I utilize “block caller” on my iPhone.  I go for a run or yoga class when  I need a mental break from life.  I ignore obligations and make selfish choices.

Nutrition- This one is tough to get started but easy when I am in entrenched in the plan. No processed food, no artificial sweeteners, no dairy, lots of water, healthy fats, and food tracking.

Workouts- I committed to moving every day.  My plan for fitness is a priority in my life. Moving when my body hurts is counterintuitive but it works.

 

 

 

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

Of course, living with lupus affected me in different ways; joint pain, numb extremities, difficult pregnancies and exhaustion would be the side effects of the disease but it would not define my life.  Initially I was terrified,  but as I began to navigate around life’s detours the landscape of my life changed. I changed.

When I was diagnosed with MS as a mother of three young girls, I used my life experience with lupus to help propel me forward.  I knew nothing about this new autoimmune disease but thanks to the Internet I had an opportunity to be terrified and calm all within one double-click.

Living with two chronic diseases changed me as a parent, partner and friend.  I lost patience and gained a new level of empathy. I knew pain and realized that I must respect the boundaries of my life without setting any limits to my potential.

I learned 

I must challenge my body every day. I run almost everyday with a phone and a mental note about who I could call if I don’t feel well.  I position myself by the door in hot yoga classes, to make a fast exit if something doesn’t feel right.  When I see a hill, I sprint to the top and catch my breath before I #HIIT the next hill. Being uncomfortable in this life was the only way to transform my life.

Follow me on Instagram and see my nutrition and workouts.

I need to listen to my body. I take a day off from life if my body demands, but I don’t take many sick days.  If I have pain I go see a Dr, and make sure my actions will not make me worse. Fear of pain is more debilitating than pain.

I can say no.  My time is precious and I have learned to be selfish.  Someone once told me that,  “You can’t clean someones else’s gutters, if your gutters need to be cleaned.” 

I will only surround myself with positive energy and love.  I  started to “block callers” out my life.  Today was a gift that was not going to be wasted on the wrong people.  

I do not let obstacles stop me from my goal. Obstacles are just opportunities to learn something new.   Failures, repeated failures, are finger posts on the road to achievement. One fails forward toward success. C.S. Lewis

 

My life was the example of respecting the boundaries of life without accepting any limits. I learned that being in fear of pain and failure was more debilitating than pain and failure. Wasting time obsessing about excuses would just slow me down, and grandiose failures were not as painful as setting limits.  My life lessons changed me as a mother/coach.

In high school, when my kids complained about sore muscles, illness, exams, coaches or teachers I listened.  My response was consistent and I reminded them words are cheap, just do your job.  I never filled their head with false praise. Participation trophies would be tossed in the trash. Life never gave you a trophy for just showing up.

If you want more play time , be better. If you want to do better on a test study smarter(not always more).  When they were injured makes sure it was not serious, but don’t waste an opportunity.

There was nothing worse than running with your mom who just had a lumbar puncture and suffering joint pain.   Yes, I get it hurts…so what.   There is nothing wrong with being average, but I was never going to manipulate the system to get my kid more play time or a better grade.  Everyone struggles along the way but it is how we get back up and learn from failure that matter.  And, I was a master at failure.

Anyone who watched my girls navigate a jungle gym or tryout for high school sports would be suprised with their future.  Both girls were recruited to play Division I sports at universities that exceeded their expectations.

IMG_2333

Running along Boathouse Row after a Regatta

At the age of 43, MS has given me some detours, my skin feels like it on fire at times, I have pain in my jaw that will stop me in my tracks, my left side has noticeable weakness and yet last weekend I charted a new path with this disease.Last weekend I went hiking for the first time since I was diagnosed and to celebrate my marriage of 22 years.  I was scared because of the weakness on my left side and my recent balance issues.

At the age of 18, I hiked my first mountain with my boyfriend, at the time.  When I told him that I needed a gallon of water at the summit, he carried my water in his pack.  I was young and fit and struggled to climb to the summit.  Half way up, I remember asking him if we could just turn around at the first nice view. I was young and in shape and struggled with no pack up that first mountain. I finished that hike with his support and that gallon of water at the summit.

firsthike

Of course, I was engaged immediately after that hike.  After being married for 22 years it was a good test of any relationship and it was why it only took us two weeks to know we ready to get married.  For the past 22 years we have both carried that back pack.  I carried his baggage as much as he has carried mine.

On our hike to celebrate 22 years married and 25 years together, I wanted to carry the pack with not just my water but all the supplies.  I flew up the mountain and ran with that full pack. I have improved with age, experience and my family and friends.
 

My husband did take the pack as soon as we hit this sign.

IMG_4220

It was a good call because the pack was so heavy that I almost fell back a couple of times. So, although I feel like I have #nolimits… I am #nofool.  I am conservative risk taker.

At 43, I am still married to the boy who carried my pack.  I have learned the difference between respecting life’s boundaries and working through the pain.  I believe that pain is weakness leaving the body only if you your respect your body.

I have been warned to not run, be careful with the heat and don’t get too tired.  I take naps but they are short.  I run on hot days and love my hot yoga classes.  MS is a mystery to me and I continue to learn more and more about this white matter disease everyday.  My journey is unique but my lesson is universal.

#fuwhitematterdiseases