To Take Or Not To Take

To take or not to take medicine when you have a cold; that is the question.
Since the stroke, I have tried to not take medicine for things unless I'm really really sick. I don't like putting anything in my body that can cause any side effect. I don't care if the side effect is nausea, dizziness, or sleepiness. I don't want it, don't want to risk it, don't want to have anything to do with it.
Of course, when you have a cold, that can go out the window, especially when it's a bad cold.

I remember a few months post stroke, I got the flu. Correction, I got the flu when I had tickets to see Prince and I ended up not being able to go because I had the damn flu. I MISSED PRINCE! I'm still not over that. Anywho, even though I was suffering something awful, I didn't want to take any medicine. I was so scared that something else would happen to me, something worse than the feeling I got knowing I had to miss Prince. Eventually I broke and took Tylenol and of course, nothing happened to me other than peaceful slumber and my fever breaking.

I have the same fear right now though. I have the fear that something really bad will happen. I mean, how can I not especially when there is a long list of what could  happen if you take this medication. I go through the pros and cons of what would happen if I took said pills and think about how bad I'm feeling. Is the risk worth it? Of course the answer for me is yes, Eljon. You've taking these pills before. You're fine...but wait, you took those other pills before too and you were fine. You were until you weren't. It's this banter that plays in my head every time I feel sick. The script is always the same and 6 times out of 10, I end up taking the pills. What do you think won today?

Be well.

The Strokie Glove!

How COOL is this?? A man named Hoyoung Ban developed a "robotic hand" to help strokies regain control of their hands! This is amazing! It is operated through an app and uses games to help work the muscles in your hands and arms out and you can rent it for as little as $99 a month.
I am so thrilled of what this can mean for people who have lost control of their hands. Rehab is difficult on its own but now having a glove as an added source of strength training...well this will make physical therapy so much more supportive. I see you 2017! You can read all about this incredible invention here.

What Illness Can Reveal

I just read something truly inspiring this morning and had to share it with you all.

“Cancer has changed my life for the better. It’s made me a better human being. It stripped away all of the walls and the barriers...It exposes any lie in your life whatsoever. It exposes who’s not really there for you and who really is there for you,” - Shannen Doherty

This is 1000000000% true and hits home in more ways than one.  It exposes any lie in your life whatsoever is so striking to me. One of the things I will never forget (stroke joke) is how so called friends just disappeared when I was sick. I don't know what it is about sickness or change that scares people. It was incredibly painful to have to come to the realization that those who I would have immediately run to if they were sick, wouldn't do the same for me. In some ways, that was one of the worst parts of my recovery but I am thankful for it. It has made the circle I do have, tighter and stronger.

I'm often reminded of someone I was friends with in college who was suffering from MS. During my senior year, she took a turn for the worse and went from walking as any healthy person to using a cane, to being in a wheelchair.  We were in a class together. I noticed how hard things became for her and immediately jumped in to help her. No one else did. I was shocked that none of her peers would even ask how she was. It was as though MS was an elephant in the room. When we graduated, we lost touch but I still think about her. I think about what she taught me.

Remember, your illness can also be your blessing. Pay attention to all it can show you.

“It’s this brilliant thing where you just look around and think, ‘Oh my God, this person is amazing, they’re showing up for me in a way I never expected.’” - Shannen Doherty

Happy World Stroke Day!

It's World Stroke Day!

Let's use this day to spread awareness about stroke and to celebrate strokies. Go on, give your favorite one a hug. It's their day too!

To everyone who I have had the pleasure of speaking/texting/meeting through unfortunate circumstance, THANK YOU! You continue to inspire me every day.

Amanda, I salute you.
Amber, I salute you.
Ava and Shana, I salute you.
Carrington, I salute you.
David, I salute you.
Elizabeth, John and Jack, I salute you.
Erin, I salute you.
Farah, I salute you.
Heidi, I salute you.
Jim, I salute you.
Jodi, I salute you.
Katie, I salute you.
Kat, I salute you.
Kiara, I salute you.
Lauren, I salute you.
Lena, I salute you.
Melissa, I salute you.
M Daniels, I salute you.
Mira WhiteGirl, I salute you.
Nicole, I salute you.
Paul, I salute you.
Rama, I salute you.
Stacy, I salute you.
Tamara, I salute you.
Tim, I salute you.

Affordable Care Act...But At What Cost?

I don't have a permanent job. I freelance. I temp. I have to pay for health insurance like so many of us. The Affordable Care Act was meant to provide QUALITY care to those in the same position as myself but it is failing. I pay over $500 a month for my coverage. For this amount, what do you think I get?
I should get a spa with my coverage. Mani pedis for free. A massage. No, for over $500 a month, I get to go to a clinic style office. I can't see my neurologist. I can't see my hematologist. I go to a clinic style office that isn't the cleanest. I see doctors who are "affiliated with ___ hospital" but I can't go to that hospital. Only two hospitals are covered in my plan. One in my borough and one in another borough where NO ONE dares go. I have to stay in the dusty musty not so clean clinic and pray I don't get sick from being in the room. I can't even see the doctor when I want. I have to wait months for an appointment to be with someone who doesn't know my history and asks more about what happened to me for selfish curiosities  than treating me.

Does this sound ok to you? Does this sound like what over $500 a month should get you or even $200 a month should get you or even ANYONE should get? Everyone has the right to clean places to be cared for. Everyone. Why is this such an issue?
My boyfriend went to see his new Primary Care doctor today. He was so excited to use his health care to be able to actually go and see a doctor and when he got there he was met with unsanitary conditions and even worse, medical waste gloves in the restroom in plain view for anyone to touch or take. What is going on here?? We're supposed to be getting better, living a healthier lifestyle but how can we when we can't even see people who will take our insurance? Hospitals like NYU are resorting to only taking corporate plans. I couldn't even see a doc there if I wanted to. Affordable Care Act participants shouldn't be made to feel like they are being swept under the rug. We pay more for insurance than people who are covered through their employment. Shouldn't we be treated like people too?

Talk About Your Medicines Month

October is The American Recall Center's "Talk About Your Medicines Month" so I thought I would tell you a little something about when I used to be on Warfarin that almost got me in serious health trouble. I got the flu in 2011. Ugh, as if recovering from a stroke wasn't enough, I had to deal with fever, chills and nausea from something that made me feel 10x worse as I was recovering. You know if you've got the flu, you don't feel like eating. Your favorite thing in the world could be sitting in front of you laced in gold and you wouldn't touch it. This was the case with me. I felt so weak and sick that I didn't even want to eat and I didn't think I was doing harm to myself. I wasn't eating anything with Vitamin K...but I also wasn't eating at all (aside from a cup of tea or sip of broth). I still took my Warfarin as usual but what I didn't realize was that I was actually hurting my body.
I mustered up the strength to get my blood checked as I did twice a week while I was on my thinners and the nurse came in after pricking me with wide eyes. She said my blood had become pretty much like water and asked me what I was doing. I told her about my illness and she didn't even let me finish.

"Go out and eat everything you can." she said.
"Even greens?" I asked inquisitively.

She nodded which made me the happiest and the saddest girl in the world. On the plus, I got a free pass for the first time in several months. I was able to eat anything I wanted. On the other hand, I was sick. I didn't realize that not eating was so dangerous when you were taking Warfarin. People don't talk about what happens when you're sick and you get sick with something else. How does this affect our dosage and our bodies? Thank goodness I went to the doctor when I did otherwise I could have done serious damage to my kidney and liver not to mention my heart. If you even have something as small as a cold, talk to your doctors. Tell them you don't have an appetite. Your dosage may be tweaked during that time to help you heal. Even if you think it's an insignificant change, it's better to be safe than sorry!

For information on The American Recall Center including an article on Xarelto, a medicine to prevent stroke and clots, click HERE

Magic Helps Strokies Recover?

Interesting. I'm curious to see what you guys have to say about this.
Apparently practicing magic motivates strokies to improve their memory and motor skills.

"Practising magic motivates people recovering from strokes to improve their memory and motor skills. It also helps to build confidence and fight depression, reports Lorna Stewart."-BBC

I have several problems with that quote above. First of all, do we need motivation? I'm pretty sure we all want to get back to being ourselves. Second of all improving memory...obviously ANYONE would want to improve their memory. I kind of take a bit of offense to the way this is worded but I could just be too sensitive. Form your own opinion haha.

Anyway, check out the link to the article and let me know what you think about this form of therapy. At the end of the day, whatever gets you motivated and excited without having to do frustrating exercises should be the takeaway from all this. I would do this in a sec. Improve myself AND impress my friends at the end of the day. Win win situation.

Bigger and Better Stroke Detector

Hey, that rhymes!

The Reader's Digest recently posted in their current issue new and exciting medical breakthroughs, one of them being a better stroke detector. According to them, there is now a new test that may determine whether dizziness is being caused by a stroke or another condition preventing misdiagnosis's of as many as "100,000 strokes a year." Boy, I wish this was around when I had my stroke. Then time wouldn't have been wasted and it couldn't have been mistaken as a migraine.

How it works is that a patient wears goggles connected to a webcam and a laptop records video of eye movement as the patient looks at a target. If one is experiencing just dizziness, eyes wander off. If it's a stroke, well they stay focused. Imagine, a test that is better than an MRI or CT scan!

This is currently available at Johns Hopkins Hospital in Baltimore. Hopefully more hospitals will have this available soon!

Brain Games

So this just goes to show you how long I have been blogging. In the almost 3 years (whoa) I've been posting, I've written about brain games for the Nintendo DS and iPod games such as Bejeweled and now I have to say it.......the new game I am endorsing for being good for your noggin is none other than friggin Candy Crush. I know!!!! Addictive, addictive addictive and I'm not just saying this because I need lives right now but this game is good for your brain! It requires thought to solve puzzles and come on, that music? Totally relaxing.

I sound crazy right now, don't I?

Yes, yes I do but even still, you can't deny it's good for your brain. Maybe not so much for your eyes (screen gleam) but that's another post for another blog :)

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.

Annual Neurologist Visit

That's actually a lie, because an annual visit would imply that I went last year....and I didn't and it's not because I didn't want to go! No one told me to go. Wait, that doesn't sound right either. Ok, ok, in my defense, I asked my Primary Care Doc if I should go see my Neuro and she said not necessary but when I went to see her last week for my annual, she said maybe I should pay her a visit.

Of course this makes me nervous. Why do you want me to go if I didn't have to go last year?! WHAT CRAZINESS IS AWAITING ME ON THE OTHER SIDE OF THAT ROUTINE MRI?? Well, it's probably nothing and I'm freaking out for nothing but still...why would you say to go back if you told me not to go back before? I'm lucky that I love my Neurologist, Dr. Cardiel. She's the best. She puts you at ease and doesn't lose patience with you, especially if you are a repeat offender of phrases. I am not sure what it's like in other Neurologist offices but with hers, you don't feel like you're in a Doctor's office, you feel like you're in a lawyer's office. Once you enter her space, it's leather seats, a dark wooden desk, frames of degrees, and no examination table. It's like being on an interview...for your brain. If she deems it necessary to examine you, you're taken to a separate clinical looking room. I can't recall where that one is...did it open up via secret wall, or a door off to the side. I want to say secret wall but that's just because I think secret walls are awesome!

The soonest appt. I could get is for May. The woman is popular! I'm telling you, she's good! If you guys need someone and live in the NY area, look her up! It's so important to have a doctor who puts you mind at ease and treats you like a person, not a cash cow.

Be well!

Surviving Sandy

The Northeast went through the worst Superstorm in its history last week. Hurricane Sandy ripped through states leaving people without power, heat or hot water. While I was blessed to have a roof over my head, I lost all three of those for 5 days. There's only so much one can do by candlelight and by Day 2/3, I went a little stir crazy.

The darkness inside my apt. with candles lit.

People get sick, we all know this and we all have home remedies on how to get over things like colds, or coughs. Shots of rum and honey and lemon, a garlic necklace, etc. But what do you do when you're in a real medical emergency and have no way of getting through to anyone?
During Sandy, I couldn't help but think about how people in medical emergencies were faring. The pregnant Mothers, heart attacks and strokies out there who couldn't get in touch with the police or a hospital must have been terrified. What did they do? How did they get through it all being at home without access to medical professionals?

I cannot stress enough how important it is to have a first aid kit at home complete with all the fixins including ASPIRIN. I have gone on several rants regarding the power of aspirin. It saves lives. Please please keep a bottle of Bayer in the house in your first aid kit for times like these. You never know when you'll be in a situation like this. I certainly didn't expect the storm to be that bad and for it to cause as much destruction as it did. Be prepared!

Prepare for the unexpected!

Young Stroke Survivors Group In NYC

This week I was at NYU Hospital with my Mother for an appointment. We went to a separate section of the hospital I hadn't been to before. The place is a virtual maze! As we were waiting for the elevator, I looked at the notice board and saw that there was a posting for a Young Stroke Survivors Group. Below is the information for anyone who is in the NY area and can go. This is a great community and the first group for young strokies I've seen in the city.

I'm super excited about this! Hopefully I will be able to attend this month's group.

YOUNG STROKE SURVIVORS GROUP
WHEN: 2nd Tuesday of every month
TIME: 5:30pm-6:30pm
WHERE: Rusk Institute of Rehabilitation Medicine
400 East 34th Street Room RR 111-112
NY, NY 10036

RSVP to:
Pamela Singer Senior Social Worker
pamela.singer@nymc.org
Dina Pagnotta
geraldine.pagnotta@nymc.org

Flying After Stroke

With summer already in full swing, I have started to make some travel plans that require me to fly. While this is exciting in itself, I wondered if this would be safe to me. As it is, I will most likely find myself on a plane every 2 to 3 weeks until the beginning of August. Stroke victims have to be extra careful when they fly because of the risk of blood clots. This is called "economy class stroke syndrome". Mm, if I fly in first class, does this mean I'm safe? (rimshot-bad joke lol)

Folks should move around on long flights to make sure they don't contract this syndrome. The last thing you want on the way to some tropical place is to have a pesky clot go up your leg and to your hippocampus. If your calves or any other extremities are swollen after you fly, seek medical attention immediately! Risks for this can be reduced by drinking a ton of water, stretching rotating your ankles and taking a stroll up and down the aisle. You'll probably have to walk to the bathroom a ton of times after drinking all the water! Sure peeps will think you're crazy but I'd rather folks think that than have something happen to me!

Aspirin Therapy

Since leaving the life I had with blood thinners last March, I have been taking baby aspirin every day to prevent future clots. Recently, my Mother asked me if I could get off the aspirin. I don't know, I feel very comfortable taking the aspirin even if it is for the rest of my life. It has become a bit of a crutch for me. I feel like if I don't take it and miss a couple of days, I'll immediately go into shock and stroke out.

My Mom seems to think that if I DO continue to take it, I'll end up injuring myself. I've been doing some research online and found that it's pretty dangerous to just stop taking aspirin. According to the Mayo Clinic, your body can really go into rebound mode and trigger a blood clot! 

I hope someone out there reads this and is able to pass along this info to someone they know. Who knew something as simple as taking daily baby aspirin could hurt you?

Beautiful Way To Discuss Strokes With Kids

When Grandpa Comes Home
I came across this book about how to talk to children about strokes while doing some research on trials for new drugs and prevention.  It is such a great way to help children understand what's going on. The character of Grandpa is brought home after suffering a stroke and stays with his daughter, son, and granddaughter, Jane. It goes through Jane and Grandpa's frustrations with the adjustment of living with a stroke, not only with the patient but with the family.  You can read it online. 

I love it! What a creative way to help others understand what stroke does!

Did You Know?

On an average, every 40 seconds, someone in the United States has a stroke.

Strokes can—and do—occur at ANY age. Nearly one quarter of strokes occur in people under the age of 65.

Stroke is the third leading cause of death in the United States. Over 143,579 people die each year from stroke in the United States.


*www.strokecenter.org

H.O.P.E. For Stroke

http://www.hopeforstroke.com/ is such a beautiful, inspiring website filled with stories of survivors and support.

Healing
On
Positive
Energy

I was brought to tears reading all they went through.  If you are a caregiver, definitely go on this site.  You'll meet people just like you.  I know I am always talking about stroke victims.  I have to shout out the caregivers.  Your job is FAR FROM EASY.  Anyone who can have a smile on their face 24 hours a day while taking on the difficult task of taking care of someone else and not complain, not say a negative word should be immediately streamed towards sainthood.  You are the people responsible for making us feel better.  It takes a special person to do this.  Words can't express how much I respect you.

There are also touching poems and videos on hopeforstroke.  I'll close with a wonderful poem written by Linda Murray who suffered a stroke in 2009. 

Pocket of Rainbows
My pocket is filled with rainbows,
blue purple, and pink
pouring out on the grass
where people walk in their bare feet.
A storm is coming.
It turns the sky black,
reminding me of my stroke
so I reach to a cloud,
pull soft white paper down to cover me,
and push the stroke away.