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Wednesday, November 27, 2013

Losses and Gains

My stroke has take things away from me (some I'll never get back and others might come back):

- The first month of Carter's life. I'm trying to make up for lost time now, but I won't get that time back ever.
-The breastfeeding relationship we started to develop the first week of his life. That is gone forever, and is a huge disappointment for me given that I wasn't able to have one with Evan either (and even though I know it's okay, and both boys will be fine, but it was always something that was very important to me).
-A month of Evan's childhood, where he seems to be changing a lot and turning more and more into a little boy.
- The first Thanksgiving as a family of four.
- Parts of me - the thing I notice the most is I can't remember when I really laughed the last time. Right now I call myself "stroke Alyssa". Will I ever be "before stroke Alyssa" again, or just someone different?

Are there gains? Sure.

- My relationship with DH has strengthened - it's amazing that a tragic event can make that happen.
- I appreciate our families so much, and how life is easier and better when they're close by.
- There are so many wonderful people out there willing to help, even if you're not close with them.
- Accepting and asking for help is a skill I need to work on :)
- I have more of an appreciation of how lucky I am to even be here right now.
- More interest in how the brain works, the causes and effects of strokes, and  just wanting to know more.
- Wanting to become and advocate for or somehow help other stroke sufferers.

PS: I'm really considering writing a story/book about this experience. That seems really daunting though.

Sunday, November 24, 2013

Oh yeah...

...this is why we were on the fence about having another child.

The Newborn Phase

Don't get me wrong...I love Carter, he's cute, and wonderful, and *insert all the other love-y stuff I'm supposed to say here*

But O.M.G.

The constant cycle of diapers, feeding, calming, getting him to sleep...the crying, the middle of the night everything. Yikes.

I know I should enjoy him in the moment, and every phase is a great phase..blah, blah, blah...but I find myself longing for the days when he will be a little older - 5-6 months? 1-2 years? If that makes me a bad mom, then so be it. I for one, think these feelings and thoughts are totally normal and totally warranted given what a lifestyle change it all means! I can't be the only one...in fact, I know I felt the same way when Evan was a newborn too.

Thursday, November 21, 2013

Typing


One of the most challenging tasks for me right now is typing. I think it's because it involves fine motor skills on both side and verbal communication - combining both cognitive and physical abilities. It's frustrating that I can't do it nearly as fast as I once could  - those darn "o's" and "p's" are tough sometimes (that little pinky on the right side needs more practice) - but I  have already seen an improvement. Even a week ago, it was a lot harder for me to type. What's good (in my mind) is that it's the physical that needs to catch up to my mind - what I want to say is there in my brain already. I don't seem to have issue coming up with thoughts and the words to express those thoughts. I guess as a scientist, I tend to value my cognitive abilities more. So, if there's a mistake on my blog, just assume it's because I can't type well ;)

As with everything with my recovery, it's just one day at a time. Somethings have improved much faster than others. My general physical ability  recovered fairly quickly. Things that take concentration are a bit slower to come back (like typing and knitting). But, what's awesome is that I'm doing them anyway!

 I try to find things everyday to be thankful for, and to enjoy life as much as possible right now. This might not be my idea life right now, but it's my life now, and it is what it is. Luckily, I have lots to be thankful for to hep get me through my days and the frustrating times. 

PS: The reason I keep writing about this is so people get some sort of insight into what it's like to be recovering from a stroke, especially since it's so common (even though my particular experience is extremely rare)... and really just for my own records. 

Wednesday, November 20, 2013

Six weeks with Carter

Today, Carter had his last check-up with the midwife. He is six weeks old now. He was born at 8lbs 12oz, 51cm long, and a head circumference of 35.5cm. At 6 weeks, his is 12lbs (80th percentile), 61.5cm long (95th percentile), and a head circumference of 40cm. He's growing ver well, and is bigger than Evan was at the same age -- and we thought Evan was a big baby!

He's doing so well! Eating like a champ, but not  breastfeeding (due to hopefully obvious reasons - I figure having a stroke and brain surgery is reason enough). Look, I'm already in mom-guilt world! It's too bad, since things in that regard started off really well this tim around, but what can you do? I think we made the right decision in the end, considering the circumstances. He'll still grow up to be a strong and smart boy, I'm sure!
Here are some of the first "milestones" he's reached:
- making eye contact
- tracking objects with his eyes
- moving his head toward sounds
- starting to "cool"
- we've even seen a few smiles (not just due to gas)
- he had good head control so far
- hates tummy time and baths, just like his brother :)
- Loves his swing!




Realization

Earlier this week, I remembered that I could not read the clock in my room at the hospital. This was scary for me. Afterall, that is a fairly simple thing to do at age 34. What was most scary for me is that I started wondering were there other things I thought I could do and couldn't - either at that same time, or since then? Are there things now that I think I can do, but can't?

A similar thing happened when I was working with an occupational therapist and had a hard time adding two numbers together - another task that should be simple, and something that would have been easy for me before the stroke. At the time, I had to check and re-check my adding until I got it right. I started crying then because it was such a simple task and I had problems with it.

With these experiences, I now find I second guess myself a  lot - am I doing a task correctly? did I really hear that sound or see that? Am I remember correctly? Did I say that right? It's messed up, and screws with my mind. The other day, I made a meal I've made 100 times and I forced myself to read and re-ready the recipe so that I could get it right. Even then, I still checked and re-checked. The same goes when I type a short email or Facebook update - I constantly check to make sure everything is right so I don't look like a fool (yes I do the same here, so don't mentioned any typos to me, please!).

It's messed up, and screws with my mind. Yes -- my mind is screwing with my mind. How messed up is that?


Monday, November 18, 2013

Road to Recovery

The bleed in my brain occurred on October 14th, just over one week since Carter was born. Surgery was performed on my brain to remove the bleed in order to reduce the pressure on my brain. They also removed about half my skull - taking off what's called the left bone flap. That will be replaced in another surgery in the next couple of months. I will also have another CT scan performed to check if the vessels in my brain are changing for the better (that will be on Dec. 16th).

I was discharged from the hospital and transferred to a stroke rehabilitation centre on October 29th. I did very well there - strengthening both my physical and cognitive abilities. Thankfully, much of those had been regaining since the surgery already, and I had a strong base to work with already. While there, I even managed to write and submit an application to teacher's college (which I've been hoping to do for years!).

Just over two weeks later, I was discharged from the rehab centre, and I came home on November 13th. The transition to being at home will take a lot of work and energy - especially figuring out how to care for two kids and myself, and do everything else we need to do to run a household! My in-laws are still here, which is helping a lot. I will also be getting some in-home therapists visit to assess how I'm doing.

One thing I've realized through all of this is I want to learn more and more about the causes and effects of stroke. I hope to become an advocate somehow for others who have suffered from a stroke - need to think on this more. If anyone has any recommendations on where I can learn more (I have started reading My Stroke of Insight that Cath recommended in the last post).

Though it sounds minor, the one thing that has bothered me the most is my ability to hear has decreased. The surgeons said it should have nothing to do with the surgery, and all the other doctors have basically ignored it and have said it'll just come back. It's annoying enough that I'm going to try and see an audiologist. Not being able to hear is a big problem, and is also very isolating. Hopefully I can get it fixed one way or another.

The next few weeks mean a lot of follow-up appointments with specialists who worked on my case, and getting assessed and re-assessed.  I hope to update more!

Tuesday, November 5, 2013

Brain Bleed

Well things have kind of hit the fan since Carter was born.

About a week after he was born, my midwife was over to do a check up, and I had a sudden headache right in the middle of my forehead and my blood pressure shot way up. I went to the ER, and it turns out I had a bleed in my brain, so they had to do brain surgery, I’ve been in the hospital ever since.

My condition is called postpartum Vasculopathy - basically a constriction or deformation of the blood vessels in my brain. It is related to pregnancy,and is expected to correct itself within 3 months of the birth.

I lost some physical and mental functions – mostly fine motor skills (on the right side) and some memory issues. Right now I’m at a stroke rehab centre in town, and am working with all kinds of people (physical therapist, occupational therapists, social workers, speed therapist, etc, etc.).

It’s all been a blur, and very weird sometimes,

Luckily, it seems I’m recovering well (though sometimes it doesn’t fee like it to me. I get frustrated when I can’t do things as easily as  I used to – like reading, talking (!) and typing for example.)

Thankfully I get to see the kids and DH, and I even get to do home visits now. Just last weekend we finally got to celebrate Evan’s 3rd birthday.


We are very lucky that both sets of grandparents were able to come out to help, and DH’s parents and my mom are all still here. Its been amazing having so much support and help , especially knowing the kids are well taken care of.