Thriving Through Injuries: My Active Aging Journey

At the age of 18, I transformed from a self-proclaimed couch potato into someone who walked and eventually ran to alleviate the pain associated with my lupus. Fast forward to today, at 50, I’ve learned to navigate a life filled with persistent pain through a combination of exercise, nutrition, and lifestyle. Remarkably, I achieved all of this without relying on costly gym memberships, spa treatments, or special interventions. Over the years, I’ve experimented with various approaches and currently, I’ve embraced functional training, wholesome food, the healing power of nature, and, above all, patience.

One critical lesson I’ve learned on this wellness journey is the importance of adaptability. Being ready to pivot at any moment has been the key to my long-term success.

Recently, I consulted my MS doctor about a new injury. To my surprise, he looked at me and reassured me that he wasn’t worried because he knew I’d find a way to overcome it. I’ve been under his care for over a decade, and he’s witnessed how I manage my health with an unwavering determination and patience that has been my guiding light.

Three months ago, I transitioned from running half marathons to being confined to a boot for two weeks, immobilized. I was advised to take it easy until I was completely pain-free, but the challenge was that pain remained a constant companion.

Though I might feel youthful and robust, my joints, feet, knees, and shoulders bear the wear and tear of 50 years. They’ve held up remarkably well, but there’s undoubtedly some mileage on this body.

Many people advised me to give up running long ago, warning it would be detrimental to my joints. Others discouraged me from hiking, citing its dangers. Now, as I sit with an ice pack on my foot after a short walk, I reflect on my choices and have no regrets.

I am ecstatic that I never heeded the advice to take it easy. I’ve cherished every moment of this active life and am grateful for the risks I’ve taken, which have gifted me countless cherished memories.

For three months, I couldn’t bear weight or walk, but I never missed a workout, tracked every meal, and stayed committed to staying hydrated by drinking enough water

As I begin a course of steroids to reduce inflammation in my foot, I’m aware that I’ve invested time in healing my gait, so that when I resume walking, it won’t result in the same problem. I have a remarkable team of doctors aiding in my recovery, but I’m committed to putting in the effort on my end to complement modern medicine’s efforts.

This active aging plan will propel me forward. I refuse to become a couch potato again, even when my body feels fantastic, out of fear of injuring myself. I spent enough years on the couch, and there’s no going back.

So, what advice can I offer for managing aging and pain?

  • Listen to Your Body: Pain is your body’s way of communicating with you. Pay attention to it and explore various methods to manage it, from bodywork to gentle movement. Avoiding activity altogether is rarely the best solution; instead, modify or avoid the activities causing pain.
  • Identify the Root Cause: If there’s an underlying issue, such as a gait imbalance, address it rather than simply enduring the pain. Correcting the original problem is essential for long-term safety. 
  • Keep Moving: Movement is crucial at any age. Sitting idle for extended periods, even when recovering from an injury, is not beneficial. Find exercises that facilitate healing without exacerbating pain.
  • Simplify Wellness: Sometimes, the simplest actions yield the most significant results. Prioritize drinking enough water, mindful breathing, and planning balanced meals. These fundamental steps require minimal effort and can substantially improve your overall health.

Remember, an active and healthy life is within reach, even when navigating the challenges of aging and pain. Embrace adaptability, listen to your body, and keep moving forward. Your journey is unique, and with the right mindset, it can be both fulfilling and empowering.

Aging with MS

This is a glimpse into 11 years of my journey with MS.

Aging alongside MS has presented its challenges, but it has also given me the opportunity to approach aging with a touch of grace. Reflecting on the past 11 years, I’ve encountered moments of fear, harnessed strength, and embraced vulnerability while navigating this condition. Observing other women my age who live with MS, confidently using their canes and relying on their support networks, fills me with inspiration, even though it underscores the uncertainty that lies ahead.

The nature of MS can be particularly unpredictable, with symptoms emerging unexpectedly, and it’s a reminder that even with all the right steps, the impact can still be profound.

I’m pleased to share that I recently had a positive appointment with my doctor, and I recognize that this outcome is a blend of both fortunate circumstances and diligent effort. Perhaps a little more luck than effort, truth be told.

To celebrate, I engaged in a workout session and some rejuvenating yoga. I’m grateful to have a profession that allows me to delve into the evolving landscape of wellness science. I also extend my gratitude towards the Empower Fitness program, which has contributed to an improved sense of well-being. While I acknowledge that perfection is elusive, especially considering I’m a 50-year-old grappling with MS, lupus, and unpredictable hormonal changes, I find solace in the progress I’ve made.

My ongoing goal of shedding those stubborn 6 pounds persists, and I’ve been pleasantly surprised by the positive changes my body has experienced through this new program. Witnessing similar transformations in the fellow participants who have been testing it for the past three weeks fills me with enthusiasm. Now, together, our focus shifts towards embracing the aging process like a well-aged bottle of wine. We anticipate change and, hopefully, an enhancement of our well-being as time unfolds. #thisis50#livingwithms#AgingGracefully

The 2020 Survival Kit

“Just go breathe”, thanks Captain Obvious, do you really think some meditation will help with my stress? During 2020, I woke up every morning with a plan to focus on healthy habits, but after a couple emails or news alerts the meditation minutes became an opportunity to repeat obscenities. 

Just like many people, COVID has taken a toll on my mental health and physical health.  The past couple of months were a tipping point for my stress, and getting the advice to just meditate and breathe was like a turn on switch for my stress. I am unique, stress is subjective and what works for one person might not work for me. 

Last year I was running a 50 Mile Ultra Marathon on the 8th anniversary of MS diagnosis, and this year I was spending time in multiple doctors’ offices trying to figure out how to walk again. It has been a long slow painful road to getting my legs back this year and rediscovering a new path to a healthy lifestyle was more challenging than training for a 50 Miler.

Completing a marathon or ultra marathon is wonderful, but it’s a selfish gift to myself. Living with a chronic disease is my real greatest accomplishment, and not finding the healthiest version of me has a domino effect on everything that I love. If I can’t get out of bed, my family suffers. If a flare up is serious, I can’t work. Living with a chronic disease is basically walking around with a ticking time bomb. Honestly, everyone’s health is a ticking time bomb, but people living with chronic disease are just more aware of their delicate fuse. 

How did I fall so fast? A healthy body is not a guarantee, and finding a way to navigate is the key to staying healthy. What worked in 2013 isn’t going to work in 2020, and daily reminders that it wasn’t working were only making it worse. 

The good news is that I am feeling better, and have found a way to stay accountable to my body. My MRI is scheduled for January and I am staying on plan for the remainder of 2020.

Here’s my survival kit for the remainder of 2020 :

Acceptance

I stopped waiting to see the light at the end of the tunnel and just adjusted to living in the tunnel. This might sound negative, but for anyone who has had a difficult road gets this. Stressors are not going to magically disappear at a convenient timeline to manage my health. I need to manage my health first and adjust my eyes to the dark tunnel. I won’t be angry when I am reminded of a time that I was faster, fitter, and happier. I will celebrate the journey and embrace the change. I will be the best me, today.

Goals

The concept of setting goals did not change in 2020. When I made the decision to manage my health, lifestyle setting goals were key, but I had more bandwidth to be intense when I first started setting them. Now the goals look very different. I am not as restrictive with my plan. I celebrate a little more frequently, and have lowered the bar without compromising the results.

My Community

Meeting a friend for a cup of tea at a cafe and laughing until we were kicked out was one of those pre-COVID activities I miss the most. Things have changed, but this is an opportunity to learn and grow from the people in my life. One of my favorite “new experiences” was a Kundalini Yoga class I joined during this unprecedented time. I am excited to grow my remote world and try new things.

I have also embraced my old community. I have been quarantined with my husband at it’s like we’re 18 again when we first met. In the beginning of our relationship we played Tavli (Backgammon) for hours, like Greek sailors. Now, the board is out, and I am much better. I am excited to play together at home and eventually on the beaches of Greece. 

Planning for after COVID

The pandemic will end and I will be ready. I am researching trips and new experiences that will be around in 2021. Things will be different, I will be different, but that difference is nothing but exciting. I am not going to be sad for what I have lost in the past year, but I am going to be hopeful because of how much I learned. 

I am confident that the next time I get on an airplane I won’t complain about the dinner being served, the leg room, or the movie options. I will only be excited about the destination and the people in my life. Being different is a gift.

Ask for help 

My middle name should be TMI. I have no filter and am completely transparent. It was a trait that developed twofold after I embraced my MS diagnosis. I discovered that pretending my life was perfect lead to more stress. The people who run away from the rawest version of me are not the people I want in my life. I am not needy, but I will look for any guidance and growth from anyone. I am a student of life and that means my teachers are everyone and every where. 

Be ready to pivot

If the same actions are not working be ready to be different. I have learned that complacency is a cinder block tied to my waist when I am trying to swim. I will always be ready to pivot and grow during this crazy time.  That does not mean closing doors, but finding new ways to open them. Life is too short to be angry.

Letting go of anger

This one is tough and doesn’t happen overnight. I am not a master of this skill, but I consider it a work in progress. I aspire to be a little better each day, and if I focus on everything other than my anger this will naturally follow.

Everyone needs to find their own way to manage their inner ticking time bomb. Embrace today as a gift that can all be an opportunity to celebrate the simple things in life. Going for a run and having a stranger start a conversation because he likes my shirt is a small gift. Decorating a Christmas tree with my three adult daughters was a special moment. Taking a nap in a warm cozy bed on a rainy day is wonderful.

Things are different and that will best thing that comes out of 2020.

Fall Reboot

Reboot, reset, or jumpstart call it whatever you want it, it is a challenge to change a lifestyle.

After my MS diagnosis on 11/11/11, I have been rebooting my lifestyle on a semi-regular basis. Managing MS and lupus without utilizing any pharmaceutical options requires discipline and focus.

November 11th is a reminder of the beginning of a very long journey to good health. Last year, I celebrated the anniversary of 11/11 with a 50 mile Ultra Marathon. This year, I can’t run more than a mile pain-free. My body is betraying me and I was not in the mood to celebrate the anniversary 11/11 this year. 

In 2020, for the first time in 9 years, I cancelled a training class because of the symptoms associated with my chronic diseases. Historically, I work through the pain. I did not cancel a class when I was suffering vertigo, I warned my clients that I might tip over, but I taught the class. When a MS hug constricted my breathing, I taught spin class. 

A historic pandemic, that targets a weak immune system and small businesses, is a tsunami of stress directed at my small, unprotected island. Coaching health and wellness doesn’t protect me from life. Let’s just say I got caught in a tsunami, and it wasn’t easy to get out.

I made the decision a few months ago to begin another lifestyle reboot. I am a work in progress which means I am always working to make progress. In the beginning of my challenge, I couldn’t sleep 8 hours at night or walk more than a mile without pain. Bed rest and exercise weren’t healing me. Now I am sleeping through the night, unless a stressful situation keeps me up. I am walking, but not running.

I am joining my clients for this six week Fall Reboot.   Let’s get healthier together.

What are my goals?

  1. More Hiking

Before the pain started, hiking was an opportunity to feed my competitive spirit. I heard about the NH48, a hiking patch for hiking all 48 of the New Hampshire 4,000 Footers, and I was taking it to the next level. I was on track to bag all the summits before my 49th birthday, until pain derailed my plans. My first solo hike, after weeks of debilitating pain, was something special. Now, I schedule my week around the weather and shut off my phone for those miles on the mountain. I am finding a new level of peace in the woods.

  1. Be a good example for my clients

I have a hard time understanding coaches who don’t walk the walk as they talk the talk. If the challenge is too difficult for me to manage with my busy schedule, how can I properly coach people? I am coaching myself for the next weeks and holding myself accountable to the challenge and my clients.

  1. Be patient

A healthy lifestyle is never about a quick fix. Patience is not by any means my strongest trait, but I am excited for growth during this Fall Reboot. I am working on balancing intensity with calm.

“Adopt the pace of nature: her secret is patience.” Ralph Waldo Emerson

I will not be perfect for six weeks, but I will be different, because the same is not working.

Graduation Weekend

I am posting my before picture because it represents a time in my life when I was deep in the weeds of life. I had lost my dad to complications related to his diabetes, I was helping two daughters with the college process and I was recently diagnosed with MS.
I had all the excuses to quit on my nutrition and just buy some better clothes to hide my choices. Instead, I made an agreement that I would be better, faster and stronger at my oldest daughters graduation from college in 4 years. I learned to focus less on the after photo and focus on showing up for the milestones.  Milestones are the greatest gifts to anyone living with chronic disease.
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I went public with my journey and invited friends and clients to join me. I had some bad weeks and some phenomenal weeks along the way, but those bad weeks were just learning opportunities. I did get better with time and with every obstacle I faced.
My daughter graduated last weekend and I hit my goal. I sprinted every hill in Ithaca.

I have been in this business for years and discovered the after photo makes people sick. Any stylist can make Oprah beautiful and that has nothing to do with good health.

oprah

A true transformation is focused on getting healthy and staying healthy. The waistline is the best measurement of health and wellness. Visceral fat(the fat around the waist) is the bodies way of saying that something needs to change.

The choices that we make today will be more powerful than any pill in the future. My favorite part of my job is getting calls from my clients on the way home from their physician. I get a lot of those phone calls. Those phone calls make me think of my dad.

I was a teenager when my dad came home with a “miracle pill” called Actos. He struggled with diabetes after living in this country. Living on an island in Greece was great but the US diet impacted his health.

For most of my life, I remember how careful he was with his diet. He listened to his doctors when they told him to eliminate sugar, but artificial sweeteners were fair game. He drank Tab and eventually Diet Coke like I drink water. He carried Sweet n Low and eventually Splenda for his coffee in his wallet. He was careful with his health.

https://www.nytimes.com/2015/04/29/business/takeda-agrees-to-pay-2-4-billion-to-settle-suits-over-cancer-risk-of-actos.html?_r=0

I lost my dad 4 years ago to bladder cancer. During his diagnoses, there were multiple commercials on TV about joining the class action suit against his miracle pill. He used to watch a lot of TV when he was recovering from his grueling chemo treatments and joined the class action suit.

I am passionate about everyone finding a healthy lifestyle because my dad would have been at my daughters’ graduation if someone had forced him to change in his 30’s or 40’s or 50’s or 60’s. There is no magic pill for anyone. A healthy lifestyle requires being consistent.

Success with a healthy lifestyle is a marathon. Find the right program for your family.  You can see with my weigh-ins that this marathon never ends. Success is about trending in the right direction.

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I would not be here without those challenging days. Set a goal and realize that it will take time and patience. I would not have reached this goal without the support of my community. Encourage your family and friends to join you in January.

3 Tips for Managing a Life with Chronic Pain

I want to begin by breaking down my relationship with chronic pain.  

After living with lupus most of my life and being recently diagnosed with MS, chronic pain is my life partner. My partner has many different names, Trigeminal neuralgia(TN), Proctalgia fugax, Pleuritis, Arthritis or Bursitis (ect) but in the end, the name is irrelevant.

We share a bed. We share meals. We watch movies together. Pain runs shotgun on every car ride. Chronic pain is with me all the time and weaved through most of my memories. Chronic pain is a relationship with a partner unwilling to break up.

friendship

As a mother of three girls, I am not diminishing the pain of childbirth but chronic pain trump’s labor pain.  I have given birth three times and two times without any drugs.

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My third girl tried to come 9 weeks early. One additional week meant a dramatic improvement of lung development, therefore, I was in active labor for one week and declined any drugs. That week of labor and a lifetime with chronic pain has certified me as a pain expert.

 

Childbirth pain will end with something awesome.I forgot the pain as soon as I held each baby. Labor pains are terrible but only last during labor with the best prize in the end.

Chronic pain can be anytime and anywhere and there is no purpose to the pain.  I never got a gift with chronic pain, I only get more pain.

 

You don’t have to be polite during labor. I remember screaming obscenities during my labor.  People were offering me ice chips before and inflatable pillows after.  I was encouraged to rest and recover with unlimited support.

When chronic pain wakes me up in the middle of the night I quietly get out of bed so I don’t wake my husband.  I feel bad for any friends or strangers that sit next to me in a movie because I am constantly moving trying to find relief.  I don’t want to stop on long car rides and make everyone extend the trip in order to stretch at multiple rest stops.

 

People care. Nurses in the OBGYN unit are the nicest people I have ever met.  They are constantly asking how they can help with the pain.

Chronic pain is invisible and most caregivers don’t know how to respond.  Coaches, trainers, and caregivers sometimes even roll their eyes.

My tricks for managing chronic pain

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Nutrition

travelplan

Nutrition works.  I don’t care if you try vegan, paleo or Whole30. Work with a professional and commit to at least 10 days. You will know instantly based on your pains scale.  I still own the same bottle of ibuprofen from 5 years ago. I was taking 3 pills 3x a day until I cut out sugar. I think this is the hardest part.  Make sure you have a community of support during this journey.

 

Fitness

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Work through the pain. It is tough for me to give this advice but it’s true.   Stretch and warm up properly. Don’t overdo it!!!! Hire an experienced professional. I love trainers who are goal oriented and listen to their clients. If you trainer, doctor or coach doesn’t listen to you, move on.

 

 

 

Stress Management

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Cut out the negative, first! If someone doesn’t bring you joy, don’t speak to them. Plan out a treatment plan.  Schedule a regular restorative treatment, stretch class or yoga class and find a healthy community for support.

 

 

 

Good luck on this journey to feeling better.  I was motivated to write this blog after meeting with so many new clients over the past month.  I am excited those clients are feeling better.

Working for women but managed by men

When I was hired by a large weight loss franchise five years ago, to “empower women through body transformation”, I was desperate. My oldest daughter was about to start college and we needed the regular income. I was 40 pounds heavier than I am today, but the commute was convenient.  Who knew that this one job would change the trajectory of my life and health.

Corporate orientation should have made me pack my bags and call Gloria Steinman, but instead, I sat for a week trying to memorize a sales script that made me want to wash my mouth out with soap and relinquish my ovaries.

Make them cry.

Remind them how their clothes don’t fit.

Show them a BMI chart and point to obese.

Don’t accept everyone into the program.

The best part of orientation was the final day. I sat for HOURS waiting for the CEO/Founder to come in and repeat the mission statement about “empowering” women.  While I sat waiting, I unexpectedly got my period.  This is a company designed for women, yet in their corporate office (run only by men), there was not one tampon in sight or out of sight. Trust me, I looked but there was no one to ask.

After being coached on how to speak to my sisters about body image and women’s health, by men with no degree in health or psychology, I had to march across corporate headquarters with my period and get a picture for their internal marketing.  I will give all corporate men a little heads up: when a woman gets her period unexpectedly, don’t take a photo.  My advice is to politely end the meeting and send people on their way.

And so my job began. I tried their sales pitch and it worked. Ladies handed me their credit card and I charged it up to $4,000 with that script.  After a few weeks, I did notice a trend and not a positive one. They regretted their choice and wanted their money back, but we had to force them to sign a “no money back” guarantee.

It felt wrong and I finally dumped the sales script and started to find my own voice and tweaked their program.  I worked hard to find the perfect plan for my sisters and followed it with my own results. I did like the weigh-ins and focus on results but dumped their product pushing and focused on real food with their family. I dropped weight with my clients.  I continually adjusted the program after LISTENING to my sisters, hearing their requests, and ignoring the corporate plan.

I was constantly in trouble for not following the corporate script or selling their nutrition and weight loss products.

Secret shoppers sent from the franchise were randomly checking in to grade my performance.  I failed when it came to following their strict rules, but was managing to exceed their revenue goals.

My loyalty went to my new sisters, my clients, and there was no way I would offend them by following that script or peddling unnecessary products. My plan worked, and women wanted to stay with the program and started sending their friends our way.

I never asked my clients to do something that I was unwilling to embrace personally. Why should they do it if I wouldn’t? So, when corporate forced managers to recruit clients for “transformation” pictures, I stepped in front of the lens. It was so hard to be naked with my story and let those men use my image.  They continue to use my image, words, and life with misleading information, even after they stopped signing my paycheck.

First, I would like to thank the founder for empowering me with their current advertising. I am feeling so empowered that I would like to share the sales script I currently use that helps so many of my clients maintain their healthiest, happiest weight.

First, I would like to thank the founder for empowering my transformation.

You are beautiful! 

Don’t do this to look better, just go spend your money on a new wardrobe if it is about appearance. 

Take the first step because you want to live longer and feel better. 

Eat real food and do safe workouts. 

Don’t allow anyone to body shame you, because we are all gorgeous at any shape or size.

I thought I was beautiful when I weighed 40 more pounds.

Our value is not determined by the size of our jeans, however, we need to listen to our body.

Do this because you want a front seat as a spectator in your families lives. 

Don’t do this for any man!

 

Tips for traveling

Going on vacation and traveling for work is the downfall for anyone trying to develop healthy habits.Unless you are planning to never travel it is important to create a plan that works. I have couple hard fast rules for success on the road.

 

My travel bag always includes snack packs of almonds, a bag of clementines, peanut butter or almond butter

If you travel on a plane just purchase Justin Almond Butter Packets. Security threw away my un-opened almond butter.

Purchase 16 oz of water before you get to the airport. Make sure you finish the bottle before you board the plane and refill it every two hours on the flight.  You will have 32 oz of water completed before you exit the plane for a two-hour flight.  When you get off the plane don’t stop drinking.  Make sure you refill that bottle 2 more times.

If you travel by car, just grab a cooler and fill it with these yummies pictured above. Don’t forget the travel utensils. I would also add some prepared foods. Any of the recipes will travel well.  
If you are on the road and need a grab and go here are some good options

You can purchase these goodies at any supermarket and leave it in the fridge or cooler

http://www.egglandsbest.com/product/hard-cooked-peeled-eggs/

Turkey Breast sliced thick with prepared green vegetables. My favorite is roasted brussels sprouts at Whole Foods.   

How to order at emergency restaurant stops

Subway or any deli- My advice for any unsuspecting Subway patron.  Don’t do the salad. It is a scary adventure that is not worth repeating.  Order a sub with double protein and skip the bread.  You can add mustard. When I ordered my first sub without bread the butcher asked if I was from California, that is always a good sign.

Starbucks- Feta Cheese Wrap and skip the wrap

Boston Market – 1/2 a chicken with a double order of vegetables.

If you are stuck going to a pizza place because you are traveling with your kid’s sports team, don’t go in hungry with pizza and salad as your only option.  Try and add an order of chicken wings(not fried) to the order.  I have found that it is always a big hit at these team dinners.  
Don’t be manipulated by great marketing.  If something says “high protein” or “low fat” don’t fall for it.  Just grab your 200 calorie bag of almonds, peanut butter on a spoon or almond butter packets.

Cheats

If you see something delicious on a menu…order it and enjoy it. Don’t go on vacation and have a Snickers bar.  Just make sure you get back to the plan ASAP.

My travel workout.

I created this go-to travel workout because of my short-term attention span.  It takes me about 40 minutes.  You can add some extra minutes to the cardio if you want a little more of a challenge.

 

Run/Walk on a treadmill(on a scale of 1-10 it should feel like a 7) 5 minutes

20 pushups

20 air squats(make 10 of them jump squats for an advanced workout)

20 situps

20 lunges(10 on each leg)

Rinse and Repeat 4x (or more if you are feeling motivated)

11/11/11

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.

 

Training for the Philadelphia Marathon

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.