National Wear Red Day Reflections

National Wear Red Day was this past Friday- a perfect day to reflect on stroke, heart, volunteering and life in general.

Memories

National Wear Red Day brings me back to 2015 when I was serving as a National Spokeswoman for the Go Red for Women Campaign. That role of being the face and story of stroke for women around this country was such an honor. That was the year that I took initiative and created my Isurvivor page (www.facebook.com/ISurvivorLisaDeck) . My goal- then and now- was to share messages that promote wellness, good health and living actively with stroke and heart disease. Little did I know that it would lead to a new challenge of a fourth stroke and two brain surgeries. I still think of this day three years ago when my advocacy and volunteerism jumped to a new level. I’ve been in a lull this past month but looking at these memories reinvigorate me!

2015 Class of Go Red Real Women

Sisterhood

As part of the Go Red for Women campaign, I became a member of a group of strong, passionate, dedicated women with whom I instantly bonded. We connected because we share similar life-threatening experience. Yet, each of us is here today sharing our story and living full, long and happy lives. Social media has enabled us to maintain close relationships- especially considering we are spread around the country. We gain a new class of #heartsisters each year. On this special day every year, I love sharing in and seeing all the cool and amazing things my fellow volunteers and advocates are doing.

Another class of Go Red ladies

Community

I have been blessed by close knit relationships from many phases of my life. Seeing family and friends donning their red outfits in support of my cause truly warms my heart. Sometimes it’s a needed reminder of the support and love that surrounds me and my family. This feeling extends to my community elementary school where my son attends school. Each year they host a Wear Red Day and even raised over $400 this year the American Heart Association. How cool!

2018 Wear Red Day Collage

Volunteerism

Dates and special days are important to survivors. Wear Red Day gives me an opportunity to reflect on all that has happened in my life and feel blessed. I’m never quite sure what to do to acknowledge the day but volunteering this year sure seemed like a good option. I was asked by one of my favorite advocacy directors to assist her at a Tobacco Free Kids conference. Our goal was to collect reasons from teenagers to change the legal age to buy tobacco to 21. It was enlightening to see a group of teenagers engaged in a public health campaign. Spending the day helping also made me feel good inside.

Our family was hit by a flu like virus this past week. We had planned to attend an evening event on Wear Red Day but I had to prioritize our health. We had to opt for a low key family night. That brings me to reason #5 of why Wear Red Day is important…

My Family

My Family

My husband and kids are what I fight for as I battle my health challenges. They are who I want to learn the values of good health and a healthy lifestyle. They are the ones I want to teach about volunteerism and giving back. And they are my loves that I get to share my challenging, messy and awesome life with!

Two Decades

This past Sunday was a momentous anniversary for me- the 20th year anniversary of my first stroke. TWO DECADES!! It’s wild.

While it was heavy on my mind, I didn’t focus on my personal situation on Sunday since it was my son’s First Communion. I couldn’t think of a better celebration/distraction than his special day. And it was lovely- a beautiful day of faith, hope, grace and love. And in that way, as I look back, this dreaded day twenty years ago was also filled with faith, hope, grace and love.

My son on his First Communion Day

I still think about May 7, 1997 with a myriad of emotions… sadness, regret, unrealized dreams, and lost opportunities but also gratefulness, appreciation for life, deep emotional connections and continuous hope.

I have been mentally dwelling on this anniversary for the past few months. Mostly because I wanted to have a book written by this date…but that was just an arbitrary date set…and I am happy to report that I am working on a book, so hope it comes to fruition soon. (Add inspiring author onto my resume!)

I look back at that day the week before college graduation when I heard the words, “You’ve had a stroke.” I see my frazzled Mom arriving in my Washington, DC hospital room after an emergency rushed flight from Rhode Island. I remember all the friends who stopped by the hospital to bid me well even as they were on their way to our Booze Cruise Senior Week celebration, which I was supposed to be attending. I recall walking into the tan, sterile Emergency Room alone and noticing the sign listing the stroke symptoms- and realizing that I had all of them. I remember the friends who dropped me at the hospital and sat with me through the procedures and terrifying news. Mostly, I recall the fear of a stroke diagnosis, the throbbing pain of my headache and numbness of my left side, and the awful spinal tap (performed by a student doctor who had never done one before and missed my spine three times!) which diagnosed my stroke.

Lisa’s college graduation.

I also embarrassingly remember how naïve and optimistic I was about my life before that day and still struggle with that sense of loss. Until that point in my life, I had always worked hard to be an overachiever. I always gave it my all in sports, studied hard and received almost straight A’s in school and worked throughout school to be financially sound. I even worked really hard at having fun in college. I didn’t have a passion or purpose but know I was set up for success. I was ready to jump into the business world and give it my all. I literally had a start date ready at Andersen Consulting. I even had a tentative life plan…work a little while at Andersen Consulting (hopefully traveling to see the country) and then go get my MBA. I had California in my mind for that. I assumed I would get married one day and have a family. I never planned to be a stay-at-home Mom but I would be a good Mom. I just had this plan that I was ready to tackle life and have fun.

I didn’t even know it at the time but those dreams went out the window on May 7, 1997 with my stroke diagnosis. I mourn this loss- still to this day. I do a lot of wondering what could have been, should have been or might have been. However, I am older and wiser so I know that life happens while you’re busy planning. God had a different plan for me and despite kicking and screaming against it, I am living His wonderful, perfect plan.

Our family today.

I have learned that I am exactly where I am supposed to me. My life is just what it is supposed to be. I am married to an amazing husband and have two kids who literally make my heart burst (with joy most of the time…;) I don’t have a career but I have a fulfilling, passion filled life that I have created despite my limitations. My life of advocacy and volunteerism has more meaning than I could ever have dreamed of. I am here for my children; I help other survivors and patients; my story inspires others facing adversity; and I most importantly, I am here.

Twenty years ago I never would have believed you if you told me that I would go on to have four strokes, two brain surgeries, two rare disease diagnosis, chemo, menopause, trouble speaking, occupational therapy and many TIAs …but also a wonderful, loving family of my own, a safe nice home and fun beach house with my parents, a “job” where I get to speak to hundreds of people, a blog, a non-profit organization, life experiences through travel and the best friends and family I can ask for.

I don’t say this all to brag, but to remind myself that life is good. I mourn the loss I experienced twenty years ago yet appreciate the ride that life has given me. It hasn’t gone as planned but with acceptance and patience, I am living God’s will and cautiously celebrating twenty years of overcoming!

 

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.

Flashback…What would the angiogram show?

A year ago today was a huge emotional day in my journey through brain surgeries. Before this day, I hadn’t even entertained the idea of surgery. I knew the angiogram would be revealing but never expected it to tell me what it did…

I laid on my stretcher at Rhode Island Hospital waiting for my cerebral angiogram. I had been laying there for three hours since my procedure was running late due to some complications of another patient’s procedure. My nerves were on fire and I was very thirsty, hungry and impatient.

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Peter, the goofy male nurse, tried to joke with me to keep the atmosphere light but all I wanted to scream at him was “Give me the meds!” I knew that the two medications the doctors planned to administer would take the edge off and deliver me to a “happy place” 😉 These medications would allow the doctors to perform the angiogram procedure which was what had me very worried.

Deep down, I knew the procedure was relatively routine yet even the worry about the possible complications consistently brought me to tears as I thought of my children. “What if something goes wrong and I can’t be there for them when they need me? “God forbid, what if I die and am gone?”

My husband and my Mom were at the hospital but couldn’t be with me during this wait. Alone, I struggled with keeping my mind off of the negative feelings. Luckily, I was a distracted by the constant poking, tucking, covering and positioning that the nurses kept doing in preparation for my procedure. Eventually I was wheeled into the operating room since it was almost time for my procedure.

The neuro-interventional radiologist who would be performing my upcoming procedure, Dr. Jayaraman, appeared out of seemingly nowhere. I often compare his quick appearing ability to the butler in the movie Mr. Deeds…”Sneaky, sneaky.” I knew he was coming to discuss my old MRI films with me.

I still have a collection of the big yellow and white envelopes filled with my black and white MRI films from 2001-2009. Many hospital staff members commented on the films as I walked through the hospital with them. Today, MRI results on CDs or flash drives. I truly looked like a dinosaur walking through the hospital with the big envelopes.

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Dr. Jayaraman jumps right into his analysis of the films…”So, you have Moyamoya. It’s apparent on your films that you’ve had Moyamoya for a long time. Your first infarct happened prior your new stroke which isn’t consistent with Vasculitis….” He continued but I stopped listening there. It was 1:00pm. I had just been told after 18 years that I have a new disease. I have never been so shocked- EVER!

Fortunately, I had been administered my medications already which helped my reaction. But I immediately started giving myself a pep talk in my head: “Ok, Lisa, you knew an additional diagnosis was a possibility. Heck, you’ve heard the word Moyamoya mentioned before. However, he sure does sound confident of that diagnosis. I know this angiogram will determine it for sure.”

Since I battled health problems for over half of my life, I had begun quite adept at focusing on the positive. I continued my attempt at positive thinking. “But wait, I am okay with this. It is definitely shocking. I probably didn’t need to go through chemotherapy and prednisone for years… but I did and that’s my life. Without my CNSV diagnosis and three strokes, I would not have the life I have today. There is no way Brian would be my husband and my kids certainly wouldn’t be my kids. I hate that I had to go through it all that to arrive here again. But, I feel fortunate about where I am today. I truly believe that.”

I looked up at the clock and it was 1:15pm. I was staring at this random orange light bulb thing above my bed. I kept hoping that I would soon drift off to sleep when I felt the doctors beginning to work on my leg.”

Angiogram machine

That’s all I remembered until I woke up alone in the recovery area about 1.5 hours later.

I woke up thirsty- extremely thirsty. “May I have some water?” I whispered. One nurse finally brought me a glass of water. However, since the patient next to me was obviously suffering from complications, I was relatively ignored. I drifted in and out of sleep.

“Oh my…That diagnosis. Didn’t Dr. Jayaraman tell me I had Moyamoya disease? Was that a dream?” My thoughts started to plague me again.

I was also inundated with mundane thoughts such as the location of my husband and Mom, and how thirsty I still felt. I was contemplating my ability to move my leg again when Dr. Jayaraman did another an appearing out of no-where act (Sneaky, Sneaky!)

Mr. DeedsHe jumped right into an explanation which I couldn’t focus on since I was worried about someone being with me to hear all this. Somehow, Brian sensed my need and appeared to listen to this life-changing news.

Dr. Jayaraman reiterated that I have Moyamoya Disease. (Still shocking to hear!) He proceeded to discuss next steps which included a meeting during rounds on Monday to discuss my case with my neurologist and a neurosurgeon since it’s so rare. He explained what Moyamoya is and how it’s very rare. He also mentioned the possibility of sending my films to Stanford where the premier Moyaymoya surgeon can review. He explained that he did his residency at Stanford in the Moyamoya Center- which is why he easily recognized this rare disease.

He delivered one final shocking blow: “I think you are a good candidate for a brain bypass.” Brian and I were in complete and utter shock. What?? Brain surgery?!

“A brain bypass could alleviate your symptoms but also increase a healthy blood flow to your brain which will be good. It will also prevent the risk of bleed due to your small vessels.”

Dr. Jayaraman was convincing and reassuring.  Surprisingly I was left with a feeling of calm determination. Yes, brain surgery is scary but if it can lead to a better brain, why not? He also explained the risks and how it will make sense to do one more test before surgery.

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There was more information that we listened to but somehow I felt relief. Yes, I was petrified about what the future help but Dr. Jayaraman’s confidence despite delivering me a shocking diagnosis left me feeling calm. I was relieved to know and have a plan to move forward. These results weren’t what I expected coming into my angiogram. But thankfully, I had experience in knowing how to stay strong despite scary, unexpected news. This is something I would need to rely upon going forward.

Flashback…Feelings during the wait for a plan

This is what I am happy to share…some of my writing from last year that really gets to the heart of my situation. My journal, while my life line last year, is enlightening to look back on…

At this point last year, I was out of the hospital and having various appointments to follow up on my fourth stroke. I had reassuring appointments with two doctors but was still having the heaviness in my left arm and leg without an explanation. Those doctors reiterated that I was a complicated case and that it was possible that I would never find out what was causing my symptoms to show up again. I was laying low until my scheduled angiogram on April 7th that I hoped would show insight. Here’s what I was thinking at the time…

Deep Thoughts photo

“Why won’t my left side come back? I need it to “un-numb.” The frustrating fact of illness is that positive thinking can’t make it better. Working your hardest doesn’t guarantee anything. Isn’t that the kicker in life?? I think so! Generally speaking, hard work and perseverance pays off. That isn’t always the case with illness. I can’t stand that my left side is numb. It is also frustrating that it’s a total subjective feeling at this time. The docs certainly believe me especially given my pass but it’s not obvious…to them, to others and even to the basic medical tests.

I’m not like everyone else; this is a difficult and a tough lesson to learn. Not in the sense that I am comparing my accomplishments or looks or any of the things that women often do (but shouldn’t)…but in that my body isn’t the same as most people. I think I have gone so long feeling well and not having any issues that I started to forget that I’m unique.

I’ve only heard of a few other people in my life who have this feeling of left sided heaviness/numbness/ache. I think many stroke survivors have this feeling yet it’s amplified and renders their limb unusable. Some MS patients have this feeling intermittently.

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Then there’s me…CNS Vasculitis patient whose symptoms mirror Moyamoya disease. Still a rare disease and one that every single doctor I meet questions. Yet, I have gone 14 years without major symptoms. So, I started to think I was like everyone else. I dove back into life with a passion to do it all. After all, I seemed fine. I look like everyone else, I have a similar family to many, I enjoy doing the same things as my friends. BUT I AM DIFFERENT. My body reacts to stress, medications, exercise, food, etc. differently then others. My left side goes numb when I do too much.”

I was still resting at this time, so grateful for all the support of meals, cards, etc…and hugging my kids super tight since I didn’t know what the future would hold.  What a rollercoaster of emotions!

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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!?

Microphone Rhode Show pic

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.

Flashback: My life before everything happened…

I look back at the photos of my life last March and it seems like a lifetime ago. I was leading a very full and extremely busy lifestyle.

Happy familySure, I was probably doing too much (a lesson I’ve learned this past year) but I was loving life. I was serving as a National Go Red for Women Spokeswomen for the American Heart Association, serving as Vice President of the Parent Teacher Organization, leading a Girl Scout troop of 24 girls, playing tennis twice a week, doing my kids’ library twice a week, being a room parent, and driving my kids to/from multiple activities each day. I was busy but satisfied. A few key events that happened in early 2015 were our annual family vacation and an amazing heart month in February while serving as a National Spokeswomen.

Being selected as a National Go Red for Women Real Women in September 2014 was such a cool experience. I was asked to share my personal stroke story with a national audience along with eight other ladies (my heart sisters!) We were flown out to Los Angles for training and photo/video shoot. We were treated like the “talent” and didn’t feel like a bunch of survivors but rather old friends with something very special in common. I still giggle at my serious photo that was used nationally for awareness. So funny considering I smile most of the time.

Official Go Red photoFebruary was the busy month starting with a trip to New York City for the Go Red Fashion Show during NYC’s Fashion Week and culminating with the local GRFW luncheons. My heart sisters and I were also treated like celebrities during these events where we raised awareness and had a ton of fun. Some of the highlights are captured in the photos below.

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Our annual family vacation also took place in early March. I traveled with my husband, kids and my parents to Orlando. We laid by the pool, relaxed, went to Universal Studios where we rode every exhilarating ride, ate out tons and just had a blast together! You can see the pure joy in our family photos.

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Another highlight from last March was a friend’s 40th birthday party. Held locally, it was a fun mixture of some of my closest friends and some school acquaintances. The party was a great crowd with yummy appetizers, plenty of drinks and old school music. I may have even hit the dance floor 😉 It was a fun, carefree night that I often look back at as my last hurrah!

My last hurrah!

Flashbacks: Revisiting the emotions and experiences of the most turbulent year of my life

Snoopy quoteOne year ago this week, my life changed forever. March 16th began my “new story” of stroke, Moyamoya disease, double brain surgery and recovery.

Dain BramagedStarting this week, I am running a blog series- mostly for personal therapy- revisiting the events of last year. I documented throughout the past year as my coping mechanism. While I shared many posts and feelings, I certainly left some emotions and thoughts on the paper for my eyes only. Some of my inner most feelings were too frightening and depressing to share.

Yet now that I am on the road to recovery, I think sharing my experience will assist others going through tough times. You don’t have to be facing life threatening disease and surgeries to experience a range of scary and emotional moments.   Perhaps revisiting these times will help others…and I know it will help me to achieve full recovery!

SURVIVOR

So if you would like, feel free to follow this space to remember what the most terrifying…and joyful…moments of our life felt like.

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