Tag Archives: living

Meet my #HeroOfOptimism

My husband is my #HeroOfOptimism for his unwavering support and calmness during the most tumultuous year of my life.

IMG_1439While perusing Twitter and FaceBook last week, I noticed a #LifeIsGood post asking people to share their Heroes of Optimism.  I immediately thought of my calm and positive husband, Brian.  He isn’t a fan of personal publicity but I would like to share this with my friends and family.

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Just over a year ago, as a 39-year-old mother of two, I suffered a fourth stroke. I had suffered three strokes in my early twenties and underwent debilitating treatment. Fortunately, I had been living a somewhat normal life for fourteen years when my fourth stroke occurred. After my last stroke, I was shocked to be diagnosed with a new rare brain disease, Moyamoya disease. There is no cure for Moyamoya but treatment is brain surgery I soon learned that I would need not just one but two brain surgeries. With the help of my husband, we made the courageous decision to travel across the country to a premier neurosurgeon for bilateral brain bypass surgeries.

With two children under ten, Brian was dedicated to maintaining a normal routine and life for them. Brian balanced his stressful career and being a full-time caretaker to me while keeping life consistent and positive for our kids. On top of being his usual involved father, Brian seamlessly took on the role of husband, mom, employee, boss, public relations consultant, advocate, confidant, counselor and family CEO. I was facing the battle of my life and had much anxiety and fear going into two brain surgeries. Brian remained calm and reassuring at all times- to me and the children. He selflessly devoted himself to my well-being, care and comfort before, during and after my 8 and 10 hour surgeries (one week apart.) He supported me when I had speech issues, making me signs to carry in case I needed to communicate. He held me when I needed assistance walking. He bathed me, managed my medications and pain and (literally and figuratively) did all the heavy lifting and caring for me and the children.

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Brian remained positive and confident in me and my course of treatment the entire time. He let me discuss my fears but always provided positive thoughts and optimism. He hugged me, held my hand and reminded me always that I would overcome these challenges. Brian, with the help of family and friends, created #teamlisa. Through my three weeks away, Brian religiously updated #teamlisa via social media. Not only was he my light of optimism and positivity, Brian provided that information and security to my family and friends around the country.

Team Lisa

Brian wasn’t in my life during my early health challenges, but I’m so thankful he was here for me during this latest, scariest one. I was able to stay positive and overcame a stroke and two brain surgeries thanks to my husband, Brian. He is my #HeroOfOptimism.

5 lessons learned; Reflections a Year After Brain Surgery

Today is a day of reflection. It marks the end of May (which was stroke awareness month) and leads into tomorrow which is the first anniversary of my first brain surgery!

I’ve looked back at the notes, messages and support from last year at this time and I’m just overwhelmed with emotion. I thought I would take a moment to review what I’ve learned during this past year. I hope my reflection serves as a Thank You to all of you who supported me AND reminds you to reflect on such lessons in your own life.

Strength

I have learned that I am braver than I thought. When faced with the tough decision of undergoing two brain surgeries, I made the decision firmly and with determination….and a little help from my friends and family. I was terrified but knew this is what I needed. Now, a year later, I see that it was the right decision.

Support

I don’t have the right words to adequately express how much and meaningful support I received this past year. My family, friends, community, old classmates, old teammates, my kids’ school, Brian’s work, American Heart Association colleagues…the list goes on and on.  I truly think that I had the biggest army of supporters ever 😉 I could write a book about ways to help somebody going through a tough time only because I experienced such amazing acts of kindness firsthand. Thank you #teamLisa. I will never forget what you did for me and my family.

Anxiety

I learned what anxiety feels like and how challenging it is to live with. Pre-surgery, I was fiercely optimistic but had many anxious thoughts and what ifs about dying. Post surgery, I was afraid to get back to life and didn’t have trust in my body. Losing my speech and suffering from TIAs were super scary. I felt nervous and anxious to do simple things like school pick up. I still have some anxious thoughts but I have come along way. I have gained a new understanding of people who suffer with anxiety on a regular basis and have become more empathetic.

New purpose

I have been a volunteer for the American Heart Association and the American Stroke Association for years but this past year has given me a new story to share with others.  In just the past few months, I have been positively rewarded with various opportunities to use my experience for good.  I served as a keynote speaker at the Go Red for Women luncheon in Boston and even filled in as a Passion Speaker at the Providence Go Red for Women luncheon. I flew to Atlanta to be part of the #StrokeHero campaign photo shoot and I was featured as the face of Alex and Ani’s Wings of Change stroke awareness bracelet.

I also became involved with a new cause, my new disease, Moyamoya disease. Never have I seen such a devoted group of patients,caregivers and doctors as I have found in the Moyamoya Facebook community. I was honored to represent this disease population when I attended Rare Disease Week in Washington DC.  I have lobbied at the State Level to increase awareness of Moyamoya Day and also hosted a small party for other local patients. Being able to take part in these activities and giveback has given me a new sense of purpose and a reminder of how amazing I feel when helping others.

Love

The most important lesson I have learned is recognizing what is important…which is love. I am blessed with tremendous, unwavering love from my family and friends.  I didn’t need to test that strength…but life-threatening illness will remind you how important you are to someone.  May each of you find such deep, thoughtful and compassionate love and friendship in your life like I have.

May is #strokemonth

I had my first stroke at age 21 on May 7, 1997. I was sitting at Georgetown University Hospital’s Emergency room when I spotted a banner hung up on the wall. “May is Stroke Awareness month. Do you know the warning signs?”

As I looked at the symptoms listed, I was suffering from most of them. I had no idea that stroke could happen to anyone. I soon learned that stroke doesn’t discriminate. Since that moment, I have become a huge advocate for creating awareness of stroke symptoms.

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I suffered the same symptoms a year ago which brought me to Rhode Island Hospital. As you likely know, this began my Moyamoya journey. Through my diagnosis with a rare brain disease and bilateral brain bypass surgeries across the country, I accidentally provided much inspiration to many of you. This month, I plan to honor my goal to educate you about stroke and Moyamoya.  Please read this information provided by the American Stroke Association carefully!

THINK YOU ARE HAVING A STROKE? CALL 9-1-1 IMMEDIATELY!

F.A.S.T. is an easy way to remember the sudden signs of stroke. When you can spot the signs, you’ll know that you need to call 9-1-1 for help right away. F.A.S.T. is:

Face Drooping – Does one side of the face droop or is it numb? Ask the person to smile. Is the person’s smile uneven?

Face Drooping

Arm Weakness – Is one arm weak or numb? Ask the person to raise both arms. Does one arm drift downward?

Arm Weakness

Speech Difficulty – Is speech slurred? Is the person unable to speak or hard to understand? Ask the person to repeat a simple sentence, like “The sky is blue.” Is the sentence repeated correctly?

Speech difficulty

Time to call 9-1-1 – If someone shows any of these symptoms, even if the symptoms go away, call 9-1-1 and get the person to the hospital immediately. Check the time so you’ll know when the first symptoms appeared.

Time to call 911

This information is taken from the American Stroke Association’s Stroke Hero campaign.  Fortunately, I was asked to be a part of the stroke hero campaign….so stay tuned this week for more information.

Please learn these symptoms and take action quickly if you ever experience them! Learn more about stroke at www.strokeassociation.com.

Taking care of myself is OVERRATED

I have been doing it for the past year. Taking it easy, going with the flow and just enjoying life. I must say that overall it has provided an awesome experience for me in regaining the “live for the moment” feeling. It’s also helped me lose a bit of my somewhat restrictive and controlling Type A personality. However, I am ready to get back to just live life without restrictions. They’re getting in my way 😉

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Starting last March, I was given many directives..

Rest and relax until you know more.

Let your body heal and see if the numbness goes away.

Rest and get your body ready for surgeries.

Let your body and yourself heal from the surgeries.

You can get back to some activity but you need to listen to your body.

Go back to living your life.

So I am able but I am struggling with the balance.

I’ve adjusted over the past few months to a slow but active daytime. While the kids are at school, I try to fit in some activities that are good for me physically and therapeutically as well as some that are fun and social.

I’ve stuck a nice balance but these nighttime plans are bumming me out. I seem to crash at night which is prohibitive to seeing my working friends. Again, I guess my lesson here is patience. But sometimes I just wish I didn’t have to keep learning it.

Monday was just one example of my daily internal struggle.  I played tennis  for about an hour and a half. I had a blast it tired me out.  I came home to take a nap…and hydrate…and lay on the couch.
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I was invited to a friend’s house to watch the Bachelor that night. I don’t even watch the show but wanted to hang with my girlfriends. I felt like I shouldn’t go and that I should listen to my body. My body was telling me to stay on the couch with a big glass of water and an early bed time. I really wanted to ignore my body and feel normal!

Bachelor

While I felt sad all day about having to stay in and rest, my husband came home and told me to go. He reminded me that I don’t have to stay all night…but I should go since I miss my friends. Considering that he is usually the cautious one, I knew that I should listen to him. He is wonderful and knows that I am working hard at taking care of myself…but also that my friends mean a lot. So off I went to watch the meaningful documentary  Bachelor, with a couple of my besties. The laughter, catching up and relaxing with them while watching junk television was just what I needed.

I need to practice patience and self-care but also need to find ways to nurture myself. Friends and an encouraging husband certainly help me do that!

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Flashback: Diagnosed with my fourth stroke at the Emergency Room

A year ago today, I was battling my left sided numbness…again. It started with my leg, then spread to my arm and eventually I could feel decreased sensation in my face. Brian and I discussed going to the doctor on day three but decided to wait one additional day…plus I couldn’t miss my daughter’s Cinderella play where she was performing as the Wicked Stepsister. She did a great job and we had a fun afternoon despite not feeling 100% and hitting my wall of tired/agitation at the end of the full day. I came home that night thinking that I had better go to sleep quickly since my left side was still numb.

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On the morning of March 16, 2015,  I woke up with my left side still numb and that gut feeling that I needed to do something. After all, as a National Spokeswoman, my primary health message to others is the importance of taking action when something doesn’t feel right. How could I not follow my own advice!?

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So, I threw some clothes on and knew I had to call the doctor. I knew that the doctor’s office didn’t open until 9am so I headed to Target after dropping the kids off at school. I wanted to do the few things I had planned so I could go to the hospital without a list hanging over my head. We needed milk and I wanted to get Lucky Charms for my kids for St. Patrick’s Day breakfast. As I walked around Target, I realized that I didn’t feel well- especially when I avoided talking to everyone I knew. My head was throbbing, my left side felt numb and I knew a trip to the doctor (at least) was inevitable.

On the way home, I left a message with my rheumatologist. I then called my local neurologist who informed me I should go to the Emergency Room.

“Can I just come in and see the doctor?”

“He’s not available today and you should go to the ER.” I was in disbelief.

So off I went with the promise of my Mom meeting me at the hospital. Brian was at work but waiting for me to call if needed.

Through my work with the American Heart Association, I knew that RI Hospital was a top rated comprehensive stroke center.  I knew that was where I needed to go.  It was a rough start parking at the very chaotic parking garage at the Rhode Island Hospital Emergency Room. It took me over twenty minutes to get a parking spot: I’m lucky quick action wasn’t needed.

RI Hospital

I was happy to have my Mom with me at the hospital. Still, I was panicked and flooded with memories of my past hospital visits in my early twenties. Plus, this time I knew I had a family. It wasn’t as much about me as it was about being sure the kids are okay. Thankfully, I was able to cover school pick up and activities with a simple text to my friends.

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The day was an emotional roller coaster. Initially, the doctors were surprised when I said that I had left sided numbness and worried about stroke. They took me a bit more seriously once I said I had already had three. They moved through the motions of an admission- taking vital signs, bloodwork, urine samples and many questions. After two hours, my rheumatologist finally called and forcefully ordered a Cat Scan and EKG. A bevy of doctors passed through my room and ended with the neurologist explaining that I was being admitted for a stroke.

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I tried to stay strong but my panic kicked in as my face immediately became flushed and I started to tear up. I can’t be going through this again. What if my disease is back? How do I stay calm and composed? Thankfully my Mom and brother comforted me with a hug.

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I then asked the doctor to clarify. “So, you think this could be a fourth stroke but will be doing more tests overnight to see if this might not be true?”  Yes, he confirms.

As the doctor leaves the room, I burst into tears thinking that CNSV is back and how I will have to start treatment again. What will the kids think? Will I be okay? Who will pick them up from school? What will they think when I am not home to tuck them into bed?

This is terrible.

Moving forward…one swing at a time

I picked up a tennis racket this week- exactly one year to the day when I played last. Boy did it feel great!

I never played tennis as a child. I loved and played many team sports- soccer, basketball, track and softball- but never tried the sport of tennis. I sometimes wish that I would have picked up on more individual sports that could have transitioned into an adult hobby.

Loving my Patriots as a kid
Loving my Patriots as a kid

In 2014, I realized that many of my friends were playing tennis. It seemed to be a fun exercise, game and social activity for woman my age. So I signed up with a couple friends at Fore Court and (literally) threw myself on the court. Playing tennis was fun, yet social but mostly it cured something in me that I didn’t know was missing- my competitive spirit.

 

ForcourtGrowing up, I played many sports but was never the MVP. However, I was always competitive. My hustle and positive attitude resulted in a decent athlete who could hold her own due to hard work. I forgot that this athletic spirit was missing…and loved how tennis brought that back. I moved up from lessons and to a league with a very talented partner. My friendships with my doubles partner and other players grew as did my skill. Playing in a league make me want to play better so I quickly found myself playing a couple times a week in an effort to increase my skill.

Playing tennis

I signed up again to play in 2015. I fell in love with how tennis made me feel. Alive, frustrated, successful and strong.

Last March, when I suffered a stroke, I didn’t go back to tennis. My doctors wanted me to rest – my body and brain- until answers were found. Unfortunately, the answers were not ideal and resulted in a new diagnosis and a daunting treatment of brain surgeries. I went from playing twice a week to sitting on my couch….for a year.

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My tennis friends soon joined my support system and were part of #teamlisa as I underwent my brain surgeries. The ladies even worked together to create a welcome home banner for me. So thoughtful.

Welcome Home banner from my tennis friends
Welcome Home banner from my tennis friends

Another fun fact: I stopped playing in March but the season went through June. My partner continued to play with subs while I was sick. Upon my return from surgeries, I learned that my double team “won” the league. I even received a trophy! So remember you can truly do anything while going through brain surgeries 😉

March 2016…I have known that my friends have been playing and even had a few invitations to join the league/drill/even play socially. I didn’t bite until this week. I am not in shape, heavier than I have been in many years and worried that it would hurt my body. I think my anxiety also prevented me from coming out of my bubble.

But, this week, I returned to playing and stepped onto the Court this Monday. I was nicely welcomed back from my old tennis friends and the Fore Court staff. My partner is a sweet friend who is a better player than me, but is playing simply to enjoy the game and have fun. Playing hard and winning is a perk but not the main goal. This is a perfect match for me as I return after not playing for one full year.

I had such a blast playing again! I almost turned my car around as I started worrying about all the things that could go wrong…but kept driving. I even checked with my husband moments before playing one last time to make sure it was the right decision. I decided to be brave as I hoped the risk was worth the reward. It so was!!

I stepped on the court and while rusty, my competitive spirit with myself quickly returned. I immediately started plotting how I can play more and be better. I also wanted to explain to my pro about my past year, but it just didn’t seem necessary. I guess I can officially say that I’m BBAACCKK!

Same feelings but not the same trip!

Everything this year reminds me something about my brain surgeries. This is my new reality.

For instance, I’m currently on a plane taking off from TF Green airport and I am feeling excited for my trip. Yet deep down, I am panicked as it reminds me of taking off from Boston last year to go to California for my brain surgeries. I’m looking out at a beautiful sunny day (just like last May) as the plane lifts off and am breathing deeply to stay calm. This trip has no similarities to that terrifying one (except leaving the kids) but I can’t help but to reflect.

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I was so petrified to go to California. I stayed positive but didn’t know if I was going to make it. I didn’t know if I would keep my speech or lose functionality of some part of my body. I would miss my kids terribly and worry about them the whole time. I’m tearing up and craving a Xanex even as I type this. Oh it was heart breaking.

Today, though, it’s a good trip. I am leaving to go to Washington, DC- my old home where I lived for fourteen years. I’m going early to see one of my best friends and her new baby. I’m catching up with my maid of honor and having a small reunion gathering of American University friends.

Most notably, I’m taking my scary new diagnosis of Moyamoya disease and double brain surgery survival story to a new place. I’m joining the other rare disease advocates to attend Rare Disease Week on Capitol Hill. I’ve been a heart disease and stroke advocate for years but this rare community is brand new to me.image

I’m nervous to break out of my comfort zone and meet all new people…but excited to hopefully meet some patient peers with whom to compare notes and to make a difference. That always makes me feel good!

I’m also honored and thrilled to be able to bring Moyamoya awareness to Capitol Hill.  The Moyamoya community is passionate, supportive and fierce- so being coincidentally being a representative for them is such an honor. I hope I do them justice!

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It’s all a mental game for me. I am not off to surgery. I am heading to have fun and do something that is going to make me feel good- feel like I am contributing to a better world for patients and their families. I am leaving my children with my husband and parents which is fun for them. I am turning something challenging into something meaningful. ❤️

5 ways school vacation rocks even for Mom!

As a stay-at-home Mom to two school aged kids, school vacation certainly has its pros and cons. I find my perspective forever changed after being away from the kids for almost a month last year. Now, I love time with my family! Not that I didn’t before…but it’s cherished even more once it’s been taken away. So, vacation arrived with an actual weekend off for my husband (who had been traveling for over two weeks!) and a relatively open schedule. Here’s the best parts:

  1. No early commitments! As a busy family, most mornings include me yelling at (ah, encouraging) the kids to do the routine! I never realized how difficult it is for two kids to get dressed, do their hair and teeth. After six weeks of 8:30 activities on Saturday and Sunday, I was tired of the morning scramble to get out the door on time. It was golden to have slow, stress free mornings throughout vacation.
  2. Wide open days! I admit, as a planner, days without a plan often give me stress…what in the world will I do with a whole day free? I have reshaped these days in my mind as opportunities. I’m actually able to ask the kids what they would like to do and do it! Our adventure this past week was to try skiing. I know they were nervous but they wanted to try so I brought them to their first one hour lesson. Ski weekends, here we come! 😉

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3. Quiet times with the kids…to do whatever they would like. We didn’t have to run to practice, hustle for homework, or squeeze in a shower. We played with playdoh, painted canvases, built lego ships, played Mario Chase as a family and watched movies while cuddling. Real life sometimes doesn’t allow for these precious moments.

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4. Reconnecting with other friends. We have a wonderful community of close friends who make up our everyday life. They are the kids’ best friends and my village of friends who support me and allow for a fun life! However, our busy schedules often prevent us from seeing other friends- my college friends, high school friends and relatives that we often see just for holidays. It was fantastic to catch up with some of these people over the break. It was even better knowing that I did some reaching out- which I haven’t done that much since my surgeries. Things are coming along.

5. Sibling bonding. When my kids have time together, they truly like each other and playing with each other. Vacation gives them this much needed bonding time. They hit the ski slopes together, negotiated watching movies together and had time just to be silly with each other. We often have the usual grind which doesn’t provide for time with each other so seeing them together just warms my heart.

I know vacation is over now but it was a nice break from reality. Now…where’s summer??