Friends Finally Meet: Meet Carrington

Since I've started blogging almost 5 years ago (Wow!), I've had the opportunity to converse via email and sometimes phone, with brave strokies from around the world. It is a privilege and a blessing to be able to connect with these wonderful inspiring individuals and I can't tell you how much they have taught me. Despite going through 1 stroke or FOUR (yes, four), they've carried themselves with an incredible grace and good nature that folks who haven't gone through a medical condition don't seem to possess. I am continuously floored by their bravery and hopeful spirit especially on days when I am not feeling my best.
I had my first email exchange with the beautiful Carrington in 2013. She had 4 strokes on the left side of her brain. I have officially nicknamed her badass. Her doctors didn't recognize this at first and sent her home instead of admitting her. Her story echoes so many of ours. Being young strokies, doctors fail to recognize signs in us. It's one of the things I still get mad at and so does Carrington. We texted, we emailed but never met since Carrington doesn't live in NY but then last week, I got an email from her saying she was going to be in the city with her husband and wanted to meet.
You guys, I don't get thrilled by just anything but the prospect of getting to meet another young strokie, especially one who I had been in touch with for a year, made me grin from ear to ear. I can't explain it but there is an indescribable bond I felt when I met her. We both had tears in our eyes and couldn't stop talking. Apologies go out to her dear husband who sat by very patiently while we talked a mile a minute about blood thinners, shots, numbness and our love of liquor. From the picture on the right, you would think we both won the lottery haha. She is hugging me with her dominant arm and I am hugging her with my dominant arm. These small little jokes are just a few things that made us laugh in our short time together. Words can't express how much this meeting meant to me. I am so grateful I got to meet her in person. She's just as beautiful outside as she is inside.
Carrington is almost two years into her recovery and is still on the hunt for what caused her strokes. If anyone has a stellar neurologist they would recommend in the DC area, please let me know!
Be well!

Send Some Comfort To Tiny Strokies

Ava and her Mom Shana are starting a WONDERFUL new tradition. Ava suffered a bilateral stroke in 2013 when she was less than a year old. She is continuing to make progress every day and is growing into a beautiful little lady! Mom Shana is starting a strokiversary tradition to help other tiny strokies. If you know someone who has suffered a stroke, you know how important it is to feel soft comforting fabric against the skin. Please read all about it below and pass along to others who may want to help! Let's help turn negatives into positives!
#teamava

Ava's Quilt

From Shana:

We've decided that we want to start a new tradition on Ava's strokeaversary every year and it all started with this quilt.
While we were in the ICU with Ava our nurses brought this quilt in to Ava. It was a quilt donated to the PICU by volunteers. It meant so much to us! Maybe handmade items don't mean as much to everyone but they do us. This sweet little quilt changed Ava's hospital room from a cold, scary, impersonal space to a cozy, inviting space.
That being said, we want to donate as many quilts as possible every year on January 14th, Ava's strokeaversary.
I would love it if all of you would join us! You have 3 months to whip up a little quilt of love to donate.
If you would like to join us, message me on Swim Ava Swim! and I'll give you our address to mail your quilt to.
Don't quilt? You can also help by donating to buy fabric or just mail me fabric!
I can't wait till Ava can deliver these quilts to the hospital so they may brighten someone's dark day.

You can learn all about Ava on her Facebook page Swim Ava Swim!

Title Help/Writing Therapy

So, I'm writing a stroke play and I can't for the life of me come up with a witty title! It's about a young woman named Darla, a strokie, one year out.

Who has a cool name? So far I have "Darla's Dream" but I know I can do better. Some play on word action, something neuron like or whatnot.
...I'm not making much sense am I?
Have you guys written anything as part of your recovery? Any strokie artists out there? I'm looking for you too! Do you have a poem, a haiku, a painting, something you would like to share? Comment and let me know. I will post it!

Guest Stroke Blogger: Meet Lauren

Meet Lauren who suffered a stroke at the age of 23.  Lauren had an ischemic stroke due to 3 little holes in her heart she was born with, something that wouldn't have been found if she hadn't had her stroke. Isn't it scary how you can go through your whole life not knowing that there is an underlying condition hiding in your body? I'm so happy that Lauren is doing well. In reading her post, I couldn't help but feel good. Despite all she's been through, Lauren's smile shines brightly through her post. 

She is so strong and refuses to fall into the "why me?" slump. I wish her nothing but the best on her road to recovery. You can read all about Lauren's brave story HERE 

I love this quote from her post. 

"I need to have the discipline to embrace what has happened to me and get past it."-Lauren

You wear your badge of stroke honor proudly, Lauren! Welcome to the strokie club!

Show Me Your Stroke Ink!

Happy New Year Fellow Strokies!

I hope your 2014 started off happy and healthy. For readers in the warmer parts of the world, please send some sun to NY! We could really use it.

How have you chosen to celebrate your stroke? I know. Really, Eljon? Celebrating your stroke? I stand by that statement. When going through recovery, you have to remember, you're getting to know your new self! So why not celebrate it? No matter what you have lost due to stroke, remember that you are a warrior. I read something in class that struck me and I think it applies to this situation. "Ask anyone who has ever changed a career, ended a long-standing relationship, or recovered from a serious illness or injury; they will tell you it is like a death, a dying of one's former self so that a new self may be born in its stead."Have any of you felt like that?

Recently I've been getting some emails about my stroke tattoo and have been encouraging readers to send me pics of their beautiful stroke ribbon ink. Below is Nicole's new stroke tat and her description of her body art. She is a two time stroke survivor.

The meaning of the purple cross-spirituality and courage. These are things that hit home for me, plus it's my son's favorite color. If it wasn't for him, I would have given up my fight. He keeps me going. I chose blue so it would tie in with the other two colors. -Nicole

Remember to speak to your doctor if you're going to go down the path of getting a tattoo after stroke. For me, I had to wait until I was off Warfarin for a few months. Blood thinners and tattoos don't mix. Seriously. You don't want to go to the hospital after getting freshly inked because you're bleeding out!

Please send me your pics if you have a stroke tattoo and I'll happily post them.

Be well!

Guest Stroke Blogger: Meet Ava

This weekend I had the pleasure of getting an email from Ava's Mom, Shana. Little Ava has an amazing story. This brave, little fighter is just 10 months old. She suffered her stroke when she was just 7 months old. I wish her and her family the best on their road to recovery. Please read to learn about this beautiful little girl.

Little Ava before her stroke.

1 in 4000 infants have strokes. 

Ava Pearl was born June 1st 2012 at 1:45 am. She weighed in at 7 pounds and 22 inches long. She was a perfect baby! We went home after the standard 24 hour stay. For the next 7 months she was the happiest, healthiest baby. She got her first two bottom teeth at 4 months, and said her first word "hi" at 4 1/2 months. She loved playing the piano with her Dad, snuggling with Mom, and hiking in our gorgeous Alaskan outdoors. You could say we led a charmed life...

On January 14th, 2013 we woke up and Ava was acting a little off. After calling our Pediatrician (who said not to worry), we decided to bring her in to an Urgent Care anyway. Once at the urgent care, Ava started to crash. Her blood sugar was a shockingly low 28. They immediately called 911. We were whisked away in an ambulance to our local emergency room. 

Ava in PICU at Providence Children's Hospital

At the ER she went through a battery of tests including, a spinal tap, CAT scan, X-rays, and numerous blood tests. Although we were at the ER they still couldn't get her stable. They placed a breathing tube and called the helicopter. Life flight transported her to Providence Children's Hospital. Once we were there, we were checked into the PICU. The first two days were touch and go. More lab work, IVs in every limb as well as a central line were placed.
Her lab work showed very low blood sugar, acidosis of the blood, and extremely high ketones. She also had an MRI done, which is when they told us she had a bilateral stroke in her basal ganglia. Her right side was slightly more affected but she sustained severe brain damage as a result. Five days into her ICU stay and she finally opened her eyes for the first time! They were able to take her breathing tube out. One week after arriving and we were moved to the pediatric wing.

For the next two weeks, she had daily blood draws which led to a blood transfusion, chest x-rays, eye and hearing exams, two EEG's, multiple medications added, and daily therapy. On January 31st, she went in for surgery to place a G tube. The stroke caused her to lose all oral motor skills. She won't even suck on a pacifier. One week after her G tube surgery and we were able to come home! It was a long and emotionally exhausting 3 weeks.
Then, the real work started. Appointments with gene specialists, neurologist, pediatrician, physical therapist, occupational therapist, speech therapist, and multiple trips for lab draws. She has therapy twice a day, five days a week.

Although we have had multiple blood and DNA tests done, we still have no diagnosis as to what caused her stroke. The specialist thinks it's a metabolic disorder. We've already tested for all the metabolic disorders that her symptoms line up with, yet all have come back negative. Taking her to therapy and doctor appointments has it's own draw backs.. Even a small common cold would put her back in the hospital. 

For now we're just pushing forward with an aggressive therapy schedule. Ava doesn't smile or laugh yet but the one thing she does seem to enjoy is water. During bath time, she relaxes and we're able to bend her limbs and work through her severe muscle tone. In the last week she's now been diagnosed with severe dystonia (basically full body spasms) as well as having epileptic activity on her last EEG.

With our newest set back we can't stress her out so therapies must been done at home where she is most comfortable.  In efforts to try and keep home and therapy separate we want to build Ava a therapy room at our house that contains a therapy pool for her. So we're actually getting a 5k run set up to raise money for her. 

Through all of this we have met some amazing people trying to help our little girl and we will continue to pay the kindness forward any chance we get.  Thank you so much for taking the time to read Ava's story and we wish you all the best.

Shana, thank you so much for sharing your story with me and with the world. You followed your instincts and took Ava to Urgent Care even when the Pediatrician said not to worry. You saved Ava's life. Your family is in my thoughts.

I'm Still Looking For You!

Had a stroke at a young age? 

I'm looking for you!

Tell your story here. 

Let's expand out stroke awareness community together!

Guest Stroke Blogger: Meet Stacy

Meet Stacy, a wonderful young woman who found me through searching for other young stroke survivors online. She is an inspiration. I'm so glad she found me! It's awesome to be able to email with someone who has the same concerns you do. Below is her incredible story also featured on http://www.stroke.org/

My husband and I, John, got married on September 18, 2010. We thought everything was going our way. John got a permanent position as a store manager at Sherwin-Williams, which we thought at the time would be impossible, I got in to the dental hygiene program at Bellingham Technical College so I wouldn't have to move to the Seattle area. I started school the winter of 2008 and graduated the summer of 2010. In the meantime we got engaged! I was so excited to start planning my wedding. We decided that financially it would be smart to get married in the fall after I graduated. So I started planning our wedding in the midst of tests, state board exams, and juggling the fact that I now had a fiance. Our life for those two years while I was in school was turned upside down. He knew that my late night studying and fretting over the state board exams would soon be worth it.

 

As graduation and our wedding day was fast approaching I noticed this soreness in my neck. As most people do I took some ibuprofen and went on with my busy schedule getting ready for the wedding. The pain came and went and as we neared the wedding day, it was more of a dull ache. Since doing dental hygiene I thought that maybe my sore neck had to do with my posture and I made a mental note to sit more straight up to take the tension off my neck. The wedding day came and went seamlessly, and within a couple days we would be off to Maui for our long awaited honeymoon.

Maui was amazing! We stayed at a very nice hotel in Maui and were very excited when we found our the hotel had Starbucks. On the fifth day of our honeymoon my neck really started to hurt, we went back to our room early after dinner and I took a couple ibuprofen and we went to bed early seeing that we had an early morning of wake boarding in the morning. The following morning we woke up, the pain in my neck had gone away completely and we were off to go wake boarding! We were about ten minutes away when I all of a sudden got really dizzy. John pulled the car over and asked if I was okay, at this time my tongue went numb and he called 911. He tried to describe where we were, while he got out of the car and was now holding me. I couldn't stand on my own and my whole right side went tingly. The ambulance finally came with what seemed like hours, I could hear everything that was said but was unresponsive. They put me in the ambulance and rushed me to the hospital and told John to follow. In the ambulance they were having a hard time diagnosing what was wrong with me seeing that all my vitals signs were normal. They put the oxygen mask on me and that was the last thing I remembered.

When John got to the hospital he was told that; "I was in bad condition." They rushed me off to take an MRI and they saw that I was having a stroke. The vertebral artery in my neck dissected and caused a blood clot. Because I got to the hospital in 46 minutes I was able to get the drug tPA. This drug thins out your blood to dangerous levels and melts the blood clot. In a small percentage of people this drug can cause you to bleed to death and because of this John had to sign a waiver okaying this drug to be given to save my life. A huge decision for a man that just got married 6 days ago, you hope that you never have to make a decision like this but since he was left with no option, he of course signed it. When a person has a stroke you only have a small window, 3 hours, to be able to get this drug in hopes that the person will not have permanent damages. The neurosurgeon that did brain surgery on me was able to get the blood flowing again to areas of my brain that were deprived of precious oxygenated blood. One of the side effects of the drug tPA is bleeding in the lungs. I started to bleed in my lungs and was quickly put on a ventilator. I was on the ventilator for 6 days while the doctors tried to control the bleeding in my lungs and John was told that worst case scenario if the bleeding didn't stop they would have to take out one of my lungs. After 6 days the bleeding stopped and the ventilator was removed. Was the brain damage too extensive? Would she be able to live a normal life again? And most importantly, would she know who I was? Being on the ventilator and heavily sedated I couldn't communicate, all I knew was that I wanted my husband next to me. I tried communicating with the nurses and was told that I pointed to my ring finger and they knew then that I wanted my husband. When he got to my room I squeezed his hand and he knew everything was going to be alright. When the bleeding stopped and the ventilator was removed they learned that my memory was fully intact. My two years of dental hygiene school were still there. What wasn't was my fine motor skills. I struggled to hold utensils in my right hand and do anything with my right side. In the hospital they had to re-teach me how to do the everyday normal things one doesn't think about, walking, swallowing, and using my right side again. Through the 2 weeks in the hospital, John never left my side for a second. The first thing I told him was, do you still want to be married to me? He told me; "What kind of man would I be if I left you when you needed me most?" We said our vows just a short 10 days earlier, to death do you part, through sickness and health, through the good times and bad. We tested those vows and strengthened our very new marriage.

Through this John has taught me that he really loves me. He showed it to me before the wedding and there was no doubt in my mind that that I married the perfect man for me, but he showed it after. Very few people can say their significant others' saved their life and I can. He is exactly the man that I would want for our daughter and exactly the man I would want my son to be. We were fortunate in that we didn't have any children, so my recovery has been all about me. Because of him I love deeper, the relationships that I have with people are deeper. When someone tells me that they have a terminal illness or that they know someone with a terminal illness I really feel for them. I did before, but it's different now. Our marriage is unbreakable, we don't sweat the small stuff anymore and we never miss a chance to tell each other we love them. This stroke has been the best thing for me, I was fortunate to have it at age 27 so I can go my whole life looking at if differently. Since September 28, I was told that I would make a full recovery in 6 months. When I got home I went back to the basics, I had to relearn how to do everything again, including holding my dental hygiene instruments. I went to the gym daily and got my strength back in my right side. I was very fortunate to have such a caring boss that told me to take as much time as I needed and that my job would be waiting for me when I was ready. I was back to work in 3 months, my worries about starting a new job were just magnified by my stroke, was I ready? Could I do this again? Could I communicate effectively? Being the determined person that I was, failing was just not an option.

John saved my life in every way imaginable. He is my soulmate, my best friend, and my husband. He is my other half, I feel whole when he is around. I ache when he isn't there. Some people say that they climb a mountain to get where they want to be, we climbed a range. He has been my rock and has been there for me when I needed him the most.

In the hospital I was diagnosed with a rare disease called Fibromuscular Dysplasia. This disease primarily affects woman of child-bearing age and is usually diagnosed after a stroke. Fibromuscular Dysplasia affects primarily the arteries or kidneys and is noted by a "string of beads" appearance.

My stroke was of a catastrophic magnitude and I was told I am very lucky to still be alive today. At first, I went through the normal emotions of "why me" and "it shouldn't have happened to me" and unfortunately it did. I moved passed those feelings and tried to focus my energy on the good that came out of it. I am still here and I really believe that I am because I was put here for another reason that I initially thought. I am here to educate others that strokes can happen to anyone. You can recover! At first I was told in 6 months I would make a full recovery. A long the way I realized that stroke recovery is a life long process. It's up the person to determine how far their recovery will go.

Recovery from stroke is a life long process and journey! I love that! I find myself learning more about myself every single day. You are one brave survivor!

Guest Stroke Blogger: Meet Dave

Meet Dave, a friend of mine I went to college with. Last year I heard Dave had a stroke too. I'm so glad he is recovering nicely and also to have another person to talk to about recovery. Below is his story.

It was five months ago – October 24, 2011 – that I had a stroke about six weeks before my 31^st birthday.

I had just been offered a job in Richmond after a couple years of piecing together freelance work and a variety of part time jobs after finishing grad school.  I’d finally got a job!  I’d asked my mother to come along for a few days of apartment hunting.  I didn’t feel well and had been getting sick the morning we left, but I get butterflies when I get anxious, so I thought it was just a result of being nervous.  I knew something wasn’t quite right, so I asked my mum to take the first leg of driving out of Boston.  As we continued to drive, I continued to get sick, but being a bit overly persistent, I insisted we go on.  I started feeling a tingling sensation on my right side.  We finally stopped, at my mother’s insistence, at a motel off of I-684 in Westchester County, thinking that I had a flu and that I’d sleep it off and we’d get up and press on.

I took a long nap and when I woke up, I clearly wasn’t right.  The tingling on my right side had increased and my speech had become slurred.  I tried to walk, but I fell, and got back into bed, only to try to get up again and fall in the space between the bed and the wall.  We decided it was time to call an ambulance.

I was taken to Northern Westchester Hospital.  In the ER, they couldn’t figure out was wrong with me.  One doctor even wanted to send me home, despite my inability to move or speak clearly.  Aside from being overweight, everything checked out: blood sugar, blood pressure, heart.  They couldn’t find anything in the CT Scan.  I appeared to be healthy, they said.

with friend Brynne on a
recent trip to the West Coast

I needed an MRI to get to the bottom of things, so they moved me to the much larger Westchester Medical Center.  The MRI revealed a small ischemic stroke.  And I tested positive for syphilis.  That was as much a shocker as the stroke.  I’d never had any symptoms.  And is this the 18^th or 19^th Century?  (George Washington, Napoleon Bonaparte, and Franz Schubert all had syphilis; thankfully it is cured with a two week course of antibiotics today, rather than arsenic or mercury, which is likely what killed Napoleon and Schubert.)  A seriously nasty bacteria whatever the case – and a cause of stroke (and plenty of other terrible symptoms – think of the infamous Tuskegee experiment, one of the lowest points in the history of Western medicine.)  It’s prevalent enough even now, but curable with antibiotics.

I don’t remember when it was that I was finally able to get out of bed.  At first, I was so weak that they needed a lift to get me into a chair – sitting in the chair was pretty torturous at first when I was too weak shift my body weight.  Eventually, I was able to stand with a walker and get myself to the chair.  Then to the end of the room.  Then to the nurses’ station.  Then a bit farther.  It was slow going, but it was good to get out of bed.  

In a way it was good that I had to have the course of antibiotics before leaving the hospital, as it gave me access to physical therapy and occupational therapy that I wouldn’t have been able to receive otherwise.  I didn’t have insurance.  Despite trying everything imaginable to get a hospital in New York or Boston to take me on for PT (and the social worker at Westchester Medical Center was ace), we couldn’t get it to work out with Mass Health.

I continued to walk a little bit farther each day and a few weeks after the stroke I graduated to a cane.  By the time I left the hospital, I was doing laps around the neurology ward several times a day.  

I’m really grateful to all the doctors and nurses and residents and staff at the hospital.  I can’t remember everyone’s name, but there were some amazingly helpful and encouraging people: Dr. Marks and Dr. Birdi, resident Alexandra, the social worker Jeanne, and nurses Kathy, Alyama, Joan, Kwaku, Ailish and so many more.  

And my grad school friend Sara came up from the Bronx and my Aunt Rita from Baltimore and my parents were back and forth and back and forth from Boston.

I drove back to Boston with my mom, just in time for Thanksgiving with the family.  There was plenty to be thankful for – not least of which was a home cooked Thanksgiving dinner.  

I moved to Richmond at the beginning of December anyway.  I found my apartment over the Internet (and the local connection of my friend Alex) while I was still in the hospital.   Mum had been laid off from her job earlier in the year, so she decided to come stay with me to help me out.  My job takes me all over Virginia, and since I still have tingling on my right side, I haven’t been able to drive with the foot pedals.

At first I was pretty weak and it took me forever to walk anywhere, but that has been improving.  I ditched the cane soon after coming to Richmond and have gradually been able to pick up the pace.  I’m even walking to and from work some days, just over a mile from my apartment.  And I’m pretty much back up to normal pace.  I feel like I’m getting stronger and getting well.

I still get very tired – really, really tired.  And discouraged when I get tired.  I’m used to a pretty busy and briskly paced life and I can’t keep it up like I’d like to. Sometimes I worry that I’m not keeping apace, but perhaps it’s a sign to slow down a bit.  Not being able to use my body has made me all that much more aware of it and of its limitations, but there’s no question it’s getting stronger and healing everyday.  I just keep pushing myself as much as I can.

Mum is leaving next weekend after I have hand controls installed on my car.  She and I have spent a lot of time together over the last five months and I’m incredibly grateful for that.  We’ve even managed to have a lot of fun.

The story continues.  And I get stronger and healthier.  I’m grateful to see the adventure unfold. 

Thank you so much for sharing your story, Dave. You are incredibly brave! Here's to continued small miracles of recovery! 

Guest Stroke Blogger: Meet Heidi

Meet Heidi, a 21 year old stroke survivor. Heidi has been kind enough to share her story in the hopes of helping others like herself. I am blown away by her bravery.

Heidi suffered her stroke in September 2011.

Below is her story.

I was home alone when it happened. After losing the ability to control my arms and legs, I was somehow able to call my parents (who live 5 miles from my house) and they called 911. All my vitals were fine so the EMTs said I could stay with my parents and have them watch over me that night. My parents said “No, you’re taking her to the ER.”. After several hours at the ER the doctor told me I had a severe case of vertigo and to check with my general practitioner in a couple days. I saw my doctor 3 days later, told him I wanted an MRI, and waited some more. 2 days after I had the doctor visit I had my MRI, they detained me there while they read the results then sent my straight to the hospital to get on a blood thinner. I was admitted for 3 days while they did tests on my to try and figure out why I had a stroke.

They found the issue; a hole between the two upper chambers of my heart (Atrial Septal Defect) and decided I needed open heart surgery. I had surgery December 1st and am still trying to get back on my feet. The doctors are confident the problem is fixed and I don’t have to worry about a thing. I still worry; I think that’s natural.

I wasn’t on medication. I am not unnaturally overweight. I have always been active; I was on a recreational soccer team when it all happened. There is no family history of this. I have never had health issues. I am young! BUT I am so grateful this happened to me; it saved my life. The hole in my heart, if it had gone undetected, could have done major damage and maybe killed me. I get a second chance. I am going to take full advantage of this as soon as I am recovered from surgery.

Now I feel so-so. For how much trauma my body has been through in a very short amount of time, I feel great! When I get tired everything gets a little funky; my speech gets twisted, my coordination is a little worse, I can't make numbers make sense when people tell them to me, I just have some silly little quirks now (trying to stay positive!). I'm just super lucky; my stroke affected both sides of my brain so if it had been any bigger it could have done some very serious, life altering, damage.

Heidi, I'm so happy this was found before like you said, it could have gotten worse. Recovery time is slow but rewarding. Remember to celebrate everything! Small victories! Second chances are the best chances. :)