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…

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“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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We had an amazing vacation thanks to Memories of Love!

To travel is to liveI love to travel. I love to visit other places and think I love it even more now after my surgeries. I always feel most alive seeing a new place!

Fortunately, I have had the opportunity to travel much in my life. However, my fun travel has been limited this past year due to my health.

Thankfully, we just came back from an amazingly special vacation! Ironically, it’s similar to the one we took last March, but this is so much more meaningful.

After our family vacation to Florida last March, I ended up in the hospital diagnosed with another stroke. (It had been 14 years since my last stroke.) I was then diagnosed with a rare brain disease, Moyamoya disease. There is no cure for Moyamoya but the recommended treatment is brain surgery. I had to leave my children to fly across the country with my husband to California in June for two brain surgeries a week apart. It was a trying time but I was able to get through it with faith, support, courage, amazing doctors and love.

We returned to California as a family in January for post-op testing and received the amazing news that my surgeries were successful.

Upon our return from testing, my husband and I discussed the possibility of a family vacation. Many of our friends were traveling out of the country which wasn’t an option for us. We weren’t sure what we could/would swing when an amazing opportunity basically fell into our lap.

A fellow Moyamoya patient on my Facebook support group posted about a family trip that she just took thanks to a nonprofit organization called Memories of Love. Their mission is to create joyful memories for children whose parents have a life-threatening illness.

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Created in loving memory of Marty Gottlieb, Memories of Love helps create lasting and loving memories by sending the entire family for five days to Orlando, Florida for a fun-filled vacation which include five nights/six days in a hotel and tickets to Universal Studios and Sea World. (www.memoriesoflove.org)

I was intrigued and soon spoke on the phone with the organization to learn a bit more. The staff was just delightful and so helpful. We were advised to fill out an application for a wish.

We knew our window of opportunity for escaping the New England winter was short and a bit limited due to other obligations. Yet, just two days after submitting the application electronically, we were sent a hotel confirmation for March and instructions for getting our amusement park tickets. This quick turnaround enabled us to make flights to secure our trip.

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We are so appreciative of this giving organization. It’s been a rocky year so we were overjoyed for this opportunity. Relaxing by the pool and experiencing the fun of the amusement parks created amazing memories for all of us. We were treated so well the entire time- I can’t sufficiently compliment his generous and loving organization! I probably took 300 photos but here are a few of the highlights.

Visiting Springfield, Home of the Simpsons, at Universal Studios
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Enjoying a Butter Beer at Harry Potter at Islands of Adventure
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Family smiles at Sea World
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The Shamu Show at Sea World
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Enjoying the pool at our beautiful hotel!
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Meeting Shamu at Sea World

A huge THANK YOU to Memories of Love for giving us this opportunity.

Again and again, I feel so blessed.

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!

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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.

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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!

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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.

Please take a moment to subscribe to this ISurvivor blog (on right) so you don’t miss my next post!

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.

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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??

A blog without a plan

I will laugh at myself soon. I launched a blog without a plan. This is not what the professionals do. This is not even what I typically do.

Yep, I am Type A and like things organized and planned. However, I ignored all my conventional wisdom and just launched my blog page. I would never have done this a year ago.

Perhaps it’s because I was scared last year. Maybe it was because I used to think I had control (which I don’t!). It could be that I was trying to make everything perfect…now I am just doing it. There is freedom in this – and humor.

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My husband asked me yesterday how often I would be posting. Not sure!

What is my theme? Unknown.

Have you drafted your first few posts? Nope.

But I have been dreaming of writing and sharing for years so I am just winging it. This would have panicked me in the past but now, as a 40-year-old, brain surgery survivor, I’m just writing when I feel like it. I predict a plan in a few months, but until then, I’ll just see what happens. This is bound to be an exhilarating yet terrifying journey!