The Sense of Being Gone

I had a horrible sinus infection in December. So bad that it took away my sense of taste and smell. Yeah, that bad. It hasn't come back fully yet. I can taste sour, sweet, salty and spicy so those are all good signs but smells? I miss smells, even the smell of the subway. That's how you know it's bad. I have been seeing an ENT for my sinusitis and polyps since the summer and had endoscopic nasal surgery in January. The procedure helped me breathe better, but my senses...

In our last few appointments, we discussed smell therapy. I have been doing the homework, smelling various essential oils and I've been doing well with those but there is something about smelling oil and translating that to actual food that isn't clicking. It's super frustrating. One of the joys I had was enjoying a cup of coffee in the morning while looking out the window. Now, coffee smells off and it hasn't gotten better. Smell therapy is supposed to retrain your brain to recognize smell by associating the smell with a memory. It's a very slow process. Last month, the doctor and I came to the conclusion that maybe my taste and smell were related to my stroke. Maybe my brain has scarring from the stroke and that's what is not helping smell connect. I want to get an MRI or PET Scan to determine if I have scarring. I was very determined to do this up until today. Today, I got scared. What if I do have scarring? Can I deal with that news? Am I ready to deal with that news? 

I share this to say that even though it has been many years since my stroke, it doesn't mean that it still doesn't affect me. It's a part of me forever. Most days, I'm ok with that, but today is hard. I long to taste and smell again. Moving about my apartment and not being able to smell home, feels like being in limbo. It feels like being gone, not really fully existing. My heart goes out to those who lost these senses due to Covid, sinus infection, bacterial infection, etc. I stand with you. I know you have hard days too. Sending you healing thoughts and a socially distanced virtual hug. Here's hoping we don't feel like moving in limbo for too long.

Memories That Stick

The rise in hospitalizations due to the variant of Covid has had me thinking a lot about my time in the hospital. Are the doctors and nurses as overwhelmed this time as when the pandemic first started? What are the age ranges they are seeing? Is the ICU where I was constantly packed? I think about the tiles on the ICU floor, the bed and the view. I think about the hallway, the nurses station and most of all, I think about the woman I shared a hospital room with when I was moved from the ICU to general. We were separated by a curtain and I never saw her but her presence was very strong. I knew she had MS. I knew she was young, probably around my age, and I knew she was just as scared to be there as I was.

We had an unspoken bond but thinking back, I wish I could have supported her. I wish I could have spoken to her and I still feel guilt about that. How strange that this feeling lingers with me almost 11 years later. I hope she's ok. I hope she's healthy.

Wow...It's Been Almost A Decade

 I don't post much at all but that doesn't mean that I'm not thinking of all of you. There's not a day that goes by when I don't think about my stroke, about how it affects me even today, about the closure I still want for what happened almost 10 years ago next month. I'm still here and I'm so happy I am.

Today, the first in a group of women I have the privilege of knowing celebrated her 10 year strokiversary. I am so happy that she hit this milestone. It has been a joy to see her living her life from posts. She has a beautiful family and is living life to the fullest. She and the other women I know serve as such wonderful reminders that life is amazing. Life goes on. We molt, shedding our old skin, for a new normal. 

I will just say that it has made my 2020 to be able to see my strokies flourish despite this trying year.  

Be well.

I'm Just Tired

I was a bit stressed out these past few weeks. No reason in particular, just life and all that comes with it. Because of this, I've started to notice little red flags, I was misspelling things, I was using the wrong words...and I brushed those things off as just having a bad day but I can't and shouldn't do that.
This is a lesson, not only for me but a reminder for all of us. If you don't feel well, pause, look at your symptoms, is it just stress? Could it be something bigger?
I've been keeping track of my health since then and thankfully, it seems my bad stretch has ended. My boyfriend told me I should go to the doctor and I know I should have, just to be on the safe side, but...I was scared. I don't usually get scared but yeah, I was scared and I let that get the best of me and I didn't go. Again, thankfully I am ok but I shouldn't be fearful, not when I know what fear and denial can do. Even typing that out, "I was scared", is not something I am proud of admitting. We shouldn't let fear and denial keep us from preventing something from happening to us. Health is precious and as I get older, I'm holding that closer and closer to my heart.
So today, I wish you awareness, I wish you energy to get you more in tune with your body. I wish you good health.
How are you doing? 

Luke

Luke Perry was one of my first crushes. My friend Ty and I would always talk about the most recent episode of 90210 when we would line up in the yard before school started. Conversations always turned to Dylan and Brandon. Hard to believe that he has passed at such a young age. Even harder to believe that it was from "a massive stroke". His death has once again started the conversation of how could this have been prevented and how a growing number of younger people are having strokes.  While I am grateful for an increased sense of awareness for the community, I am still left with the questions that will probably plague Luke's family for a long time. Could this have been prevented? Did they administer medicine in time? What else could have been done?
Life is fragile. To me, it seems to be more fragile as I get older. I'm starting to lose friends, some younger than me. They're leaving this world from heart attacks and blood clots...
How could this have been prevented?
A question I know we all ask ourselves after we get out the wails and the whys.
How could this have been prevented?
I should have known. We should have seen the signs.
But we can't know all the signs for everything...
And maybe, that's the hardest pill to swallow.

Woman's Best Friend

What a difficult December.
My 13 year old dog, Fiona, got really sick. Like really, oh no this might be it, sick.

I got Fiona 12 years ago from the ASPCA. I went in looking for my first dog, confident that I was ready to take on the responsibility of a pet. Little did I know that this pet would also be my best friend. The person who interviewed me said they had a small dog available but weren't showing her to a lot of people. She had been through a lot and needed to be paired with someone special. She walked me over to a room and told me to look through the window. There I saw a little skin and bones red min pin chihuahua mix pup curled up on a chair with a bright pink cast on her left hind leg. As soon as Fiona caught a glimpse of us, she started barking so we scurried away. I was told another person was interested in her and that my application would be looked at and I would hear from her. A week later, I got the call that she was mine. I went back to the ASPCA and where the woman placed Fiona in my arms and said to have a happy life. What, no advice? No orientation? Nope, just here. Take your malnourished, shaking dog with the broken leg and go be happy.
When I left there, I wanted to cry. Here was this broken dog who was terrified and me who was terrified, taking a cab to her forever home. I tried to get her to kiss me. Nothing. I tried to get her to look at me. Nothing but as soon as she stepped foot inside, this dog who wouldn't even make eye contact with me, did zoomies around the apartment and couldn't stop smiling. She finally looked at me and gave me a kiss. I saved her and she knew that and she thanked me.
When I had my stroke, Fiona would not leave my side. She comforted me, cuddled with me, slept with me. If someone came over to me when I was resting, she growled. She was my ever protective nurse. And now, my ever protective nurse, my friend, my first pet, was sick. The vet thinks she too, had a stroke. It's so hard to watch your pet in pain. They can't tell you how they are feeling or what hurts. You don't know exactly how to make them feel better other than to just hold them, pet them, call them good dogs and love them up as best you can. That's not good enough for me, not for my Fiona. It had been so hard to watch her in pain and not know what to do. It took 2 weeks for her medicine to help her enough so that she can walk again and eat on her own. I am impatient. I know. My boyfriend had to remind me that I had to give her time. He had to remind me how I was impatient to heal but I couldn't be that way for her. I could have the hope he did; that recovery could be slow but steady so today I am hopeful that she is going to continue to improve. She's an old girl I know, and one day, she will pass, but that day won't be today.
She's my nurse and my friend and I won't give up on her just like she didn't give up on me.

Time Oh Time!

We can't stop time. The most we can do is try and savor it as much as we can. When I'm at work, I catch myself sometimes saying "This day is going by so slowly!" and I stop myself. It's ok if it feels as though time is slowing down, that time is standing still. For someone in the world who isn't in the best health, time slowing down may be what they wished for. I'm really trying to implement this in my day to day.
It's hard to believe that 2017 is almost over. How did November sneak up on me so quickly? I feel like I ask myself this every year. Where did the time go? Nowhere but perhaps it's time to look at time differently. While we always celebrate the new year goodbye to the old and hello to the new, it's also always the right time to celebrate the now. As the winds turn stronger and the temperatures drop, my right side is ever there to remind me that winter is creeping in so I am savoring today and these 70 degree unseasonable temperatures and hoping that I can hold each moment a little tighter because it will all be over in the blink of an eye.

Blessed and Grateful

Blessed and grateful and giving pause and thinking about everything and hoping I climb higher and higher and still ever so thankful for the stroke that landed me in the ICU 7 years ago.

Be well.

Whoa, I'm Human!

Expiration dates...
It's not very often that I think about my own mortality. I mean, it's easy to say yes I know I'm going to not be on this earth one day but to actually process that in a real way is not something I tend to let seep into my mind. Is that weird? Or is it weird that I'm talking about it?
There are moments when I will catch myself looking in the mirror at the differences in my face, the new lines, the creases, the new white hairs. To me, we miss these things if we don't stare at ourselves every once in awhile. It's like with my parents. I stare at them sometimes. Whether it's me not allowing myself to see that they are aging or just not paying attention, I've let myself stare and I see them and it's a little scary. Not that they look scary! Just the way that life is short and time passes by so quickly. I find it does so the older we get.
We don't get many second chances. You can't hit reset on certain things and maybe that is what I mean by expiration dates. I think I had a moment like that this weekend. I am not a teen anymore. I'm 4 away from 40 and THAT is something I haven't come to terms with yet! Where did the time go so fast?
Maybe I'm just letting my mind run. Maybe I'm thinking about this because I'm writing about a death TV channel. This isn't meant to be a depressing post, more like a reality check for me and maybe it will inspire you. Really think. We all have an expiration date. What have you been putting off or dreaming about that you have to confront?

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.

Best Advice

When you're having a horrible day,
When you want to give up,
Remember (ha),
That you survived a life threatening trauma
And you're here to tell the tale,
Even if your words fail you,
Remember (ha),
You're here to tell the tale
In your own language,
In your own time,
You are the hero
In your book of life,
Remember (ha),
You've molted
And shed
Into a new self
That will be,
Believe it or not,
Your best self,
Remember.

Writing It Down

I saw a coworker feverishly writing into a notebook the other day. She said that she has been writing down every movie she's ever seen with her own little critiques carefully labeled for years. Just a quirk she has that she has been doing over the years to keep her writing skills sharp and memory keen.

I started my own document last year, not of movies, but of memories. I know the day is going to come, as it will for all of us, when our memories will fade; the time on the beach when I picked pink shells, or the party where I lost my favorite scarf because I was a dancing butterfly. I'm not ready to accept this and neither should you. In order to combat my fear, and perhaps revisit my happy memories, I've started a document detailing whatever memory comes to mind I don't want to forget. I am so meticulous with it down to colors of things, smells, you name it, it's written down. They've become happy little short stories I cherish when I have days that aren't so bright. I mean, hello, look at this blog! Talk about writing your story down!

It's comforting knowing that your story is written down. It warms me to read through my memories, including this blog. Call it validation of I was here or simply, just a hug from your mind to let you know, hey, look at what you've done! Either way, I'm happy I am doing it.

Honesty

I recently decided that it might be time for me to write something on my stroke. I tried to do this a few years ago but what came out was not something I was proud of. It wasn't completely honest and didn't ring true to my experience even though I was the one writing it! I don't think I was ready to delve into it, 100% honestly until now.
When I spoke about my idea, I did it in a way I hadn't done in the past. There was no shyness. There was decisiveness. This would be based on me. I wouldn't be pulling a story out of thin air. That took a lot for me to say because even though it has been 7 years since my stroke, I still am embarrassed about it to an extent. I don't know why. There are parts of me that still think I could have prevented it and many what ifs that will never be answered. After I spoke my idea into existence, I was initially PUMPED but then after walking down the street and letting it settle, I definitely broke down. I ugly cried. I know that this wasn't because of anything bad but because I finally got the strength to be able to put forth an idea that was 100% honest and I hope to remain true to that in my journey of writing down my idea.
Above all I have to remember, I'm not only writing this for me. I'm writing it for those out there who like me, didn't know there were others who experienced what I did at a young age. I have to remember, in times of block and doubt, that I was put here to do many things, and one of those things is to write this. :)

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

The Struggles Of The Supermarket

I have to laugh...
I treat a trip to the supermarket like I'm going to the mall. I don't know why. I just love going to the supermarket. Is it the music? The way I'm fascinated by new labels and things stacked perfectly and in size order? I don't know. I usually make a list of what I need. I don't take more than I can carry. I usually use my dominant arm to carry heavy things but also use this as an exercise to put a little more weight on my strokie side.
I have an obsession with canned beans. I like to be prepared. I always buy a can when I shop. The thought process behind this can only be attributed to when Hurricane Sandy rendered so many of us without access to food for a few days because all the supermarkets in the area lost power. Since then, I always make sure I am stocked on beans, rice, pasta and pasta sauce.
The past few trips I've gone to the supermarket, I've forgotten that I already have rice. Let me say that again. I already have rice. Like a lot of rice. Like maybe 3lbs of rice. Maybe I should stop buying rice. Eljon, stop buying rice BUT every time I go to the supermarket, I somehow have temporary memory loss and think, "Huh, I think I need rice." Now I have about 7lbs of rice in my kitchen cabinet. I have to laugh...Sometimes, we have to just giggle. Our memory banks are wired differently now yes, and that can be sad...but sometimes, when you look into your kitchen cabinet and see a little something extra, you have to laugh. Embrace the little quirks that are you, that are NOW you. It makes it a little easier when getting to know the new strokie you.
Be well.

Summertime And The Living Is Easy

I love Summer. LOVE. One of my favorite things in the world is to just lay out and let my skin drink up as much of the sun. I'm a firm believer that Vitamin D heals (as long as you don't get burned!). Of course I have no medical evidence to back this up. All I know is that when I am being touched by the sun, I feel like I'm getting a hug. My winter's cure is holding a cup of tea.
Sometimes we all need something to encourage and heal us. It can come from something as simple as being sunkissed or having a really good piece of chocolate. I would encourage everyone to find their "little piece of something" for when days aren't so great. It truly is the little things that can make all the difference.
Be well.

My Beautiful Broken Brain Doc

Happy 2016 strokies! I hope you're all doing well and thriving. My friend sent me a link to a documentary on a young woman's journey to recovery from her hemorrhagic stroke.  It debuts on Netflix on Marth 18th. I am SO EXCITED to see it. It is another way to further drive home that young people have strokes. I have always said, awareness is key and this is a powerful way to help bring that to the masses.
As soon as I heard about this, I shared the trailer with fellow strokie and friend, Carrington. My excitement can only be compared to hearing about a new Star Wars film. Yes, that's how excited I am to see this doc. I won't say too much more except check out the trailer here 
Yay!

That First Taste Of Cold Air...

My Dad is in town (Yay). He picked me up at my house this morning and we walked to my job which is on the way to the VA where he has a doctor's appointment all day. Today is the first day where I felt the cold air literally down to my bones. Ok, I'm being dramatic. It's only 35+ degrees BUT it still feels like -0 to me and I'm pretty sure he felt it too. At numerous points in our walk, he stretched his hand. I did the same. We didn't talk about it. We just went through the motions and continued on our way both conscious that each other knew exactly what was being felt.

Holding a warm cup of coffee in my dominant hand helped, a nice reminder that there can be comfort in small things. Small victories on this chilly Monday morning. What are your Monday victories?
Be well.

Switching Doctors

My Primary Care doctor relocated to another state. I knew this was coming. I received a letter maybe 2 months ago and it felt like a bad breakup. "How could this person do this to me?" I thought. Doesn't she realize that without her, I don't think anyone else will understand me? But seriously...it sucks and now I have to go through the process of finding someone else who will take my post strokey problems and not treat me like a lab rat. Not that I don't love being looked upon as someone special, I do, we all could use some of those glances every once in awhile, but if something is ailing me, I don't want to have to hear "very interesting" coming out of your mouth every two seconds. Just help me. My Mom is getting on my case about getting a new PC. I haven't been able to get past that letter of abandonment. I know it's not personal (duh) but I would have liked a good personal recommendation for someone else to go to instead of receiving the generic I'm out piece of paper.
So the hunt begins! I'm sure I will have some good stories :)