happiness

Yesterday, as I trained for a marathon I broke down thinking about how 11/11/11 was the beginning of bad news.  I remember sitting in a waiting room feeling like a warrior.  I was a Lupus survivor, mother of 3 with a healthy happy family just going in for a simple MRI.  After my MRI, I was quietly escorted from the public waiting room to a private room for a phone call from the doctor, and so the journey began. My potential MS symptoms matched with the two lesions they discovered on my spine.

I drove home and called, my rock, my dad.  He promised me that doctors knew nothing and that I was fine.  The miracle man guaranteed me a life with no pain and suffering and I believed him.

In less than 6 months I was in a different hospital back in yet another private room hearing another doctor tell me that my dad had cancer.  As my dad danced around the room promising me another miracle, I couldn’t be as optimistic and broke down.  You could tell that this was a different talk from his team.

We fought hard for miracles and his first round of chemo was considered a home run, according to his oncologist.

During that time Cal, my niece, and his youngest granddaughter would be diagnosed with MLD.  He fought that diagnosis with his faith and we argued about what terminal meant.  After Cals diagnosis the second round of chemo was not a home run.

Dad and I spent the next months having some intense discussions about the power of prayer and miracles. I argued that we cannot pick our miracles.  We are not promised a life without pain and suffering, and sometimes we have to redefine what we view as a miracle.  Sometimes we have to fight for those miracles. Our family was not immune to pain because God was not our private genie in a bottle. Babies could be terminal and spiritual men could die. We were not allowed to define our pain threshold. In my typical harsh way, we argued and cried. I never left his side but I couldn’t pretend that his youngest grandchild was going to escape MLD simply because of his connection to God.

However, I defended the miracles man’s decision to not sign a DNR and I secretly dreamed that he would get on a plane to Greece for one of his famous pilgrimages and come back cured.

Instead, he declined quickly, as did Cal.

Within months my dad and Cal both entered hospice care.  I had no idea what hospice meant, but now I was screaming at hospice nurses to fight for my dad to stay alive. I pleaded with my dad to fight for a miracle, but it doesn’t work that way. In 2013 I lost my miracle man, just a few days after the birthday I share with Callie.

Cal is still in hospice, and I am witnessing those miracles that Dad promised.  My neurologist cannot understand the progression of my disease.  He considers my MS to be subtle, and because of research, fundraising, and mothers like my sister, MLD kids are going to school. Cal won’t be one of those kids, but without Cal and the other families that have witnessed this disease, this wouldn’t have happened.

Running a marathon is such a small part of that miracle but that is how it works. It’s a lot of people doing small things that build up to real change.

I broke down on my run because I wanted to apologize to my dad for arguing about miracles.  I wanted to tell him I was fighting for miracles because of him and everything he promised me.

 

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

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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.

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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.

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.  

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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.

 

 

 

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.

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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.

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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.

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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

 

 

 

In 12 weeks it will be Halloween.

mean girls

Personally I missed the Girl World generation of dressing up for Halloween. As a teenager I used Halloween as an opportunity to wear my favorite overalls and looked for a costume to indulge my love of comfortable clothing. Halloween has changed as times have changed.

When I was new to parenting, Halloween was an opportunity to showcase my parenting style, that I dubbed “lazy-creative”.  I promised  my oldest that this ensemble would help her achieve a new level of social status among the other trick-o-treaters.  I called it “package that fell off the truck”. Smart phones were not around during this time and our lives were private.  I was content to be a costume designer, make a wonderful meal, eat candy all while I wore my stretchy pants on Halloween night.  There were no smartphones to document my choices.

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Now, with camera phones and social media, Halloween is a time to post great pictures. Just like any other event, people want to share  their lives with the world.  Some people go all out with the family costume or theme costume.  Some just love to get those timeless shots on Facebook or Instagram, so they can hold onto that moment in time. And now as Facebook shares those memories we are reminded of those cute costumes and adorable kids.

In 12 weeks it will be Halloween and the smart phones will be coming out.  I want to challenge you to find a new level of success in 12 weeks.  When you hand out Halloween candy this year, avoid temptation because you have never felt so good. I want you to add new clothes to your wardrobe that only emphasizes the hard work that you will be putting in over the next 12 weeks.  So join me as I prepare to dress up this Halloween as my best self.  Even if you won’t be sporting this Wonder Woman costume, you could if  you were was so inclined.

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