This is what I feel like the "healing" is for me.  I shared this photo with the High Level Aphasia group.  Many times it seems like I'm not getting anywhere - like with the figuring of addition and subtracting fractions.  BUT just when I think I can't do it - it comes to me (now it took a long time but it did come).  I know the doctor's and Sunlife check up until 2 years after the stroke, but it will take me longer to get back to what I was (and even then...who knows if I will get back to the same person I was before).

I am not the same person anymore - I have a brain injury now and it's very different!  I am really comfortable in my own skin and I don't like to have a lot of people around me.  That's different than before the stroke (BS as I like to call it 😉).  Even with me writing this blog, some people that I knew BS, don't want to read it.  I think it's because if they read it, they will have to admit that there is something "wrong" with me and that makes them uncomfortable.  It's okay though, because I can't "control them" or what they think of me now.

It will change my life forever.  I'm trying to accept that what ever comes my way...I will be fine (at least I keep telling myself that).  I don't like having a lot of people around me and I really don't like to call attention to myself.  In the summer, I like to sit outside (on the deck) and read.  When Richard comes home, we eat outside (when the weather is nice) and then watch television or I read some more.  It's quite wonderful!

I know I have spoken about going to Switzerland, to the wedding in Ontario (about four months after the stroke) and then we went to Anaheim this last January.  I really want to say, it was wonderful going but it is quite stressful when I have to go anywhere.  We have another wedding in August in London (UK 😕) and I am really not looking forward to it.  I must say though, I am looking forward to seeing the family and such but it will be very stressful again and it makes me feel very self-conscious with talking and stuff.  Even with everyone "helping" me to get there and trying to make me feel comfortable - well you know.  I just don't like all the strangeness when talking to new people and I ALWAYS tell whoever that I had a stroke so they know there are some things that it takes me a while to figure out.

I have to say one thing though, the family and the extended family 💞 have been (and will continue to be) WONDERFUL!!!  They are very helpful when I have to travel and they always ask if I'm doing alright or if I need to rest a bit or whatever.

It still frustrates me because I can't do the things I could before the stroke 😞), and that isn't changing, at least in the near future.  So I have to manage with it and ASK when I don't understand something and I also have to ask the people around me (whether they are family, friends or strangers) when I need help.

(June 4 - 11, 2015)

So after I was admitted to the hospital (I'd say about the 2nd or 3rd week), Richard brought my I-pad and my I-phone to me.  He brought the I-pad for me to start reading books on it (I have my Kindle app) and Richard also downloaded "Drop Dead Diva" for me to watch.  He also brought me the phone in case I wanted to call any body.

Weeeeeeellllllll, can I just say, Richard had to take the security password off both of them, because I couldn't remember them because of the stroke.  I tried and tried, but the digits weren't coming back to me.  So once that was done, well another problem happened, I was looking through my texts on the phone and I couldn't remember over half of the people, where I knew them from or anything.  So I just put the I-phone away.  Also, I couldn't talk very well, so I didn't want to talk to people unless I could sit face-to-face so they could see me.

The I-pad was a really good relief because at the time, I had maybe 1 hour of therapy every second day so I had a lot of time to kill 😀.  I have to say though, I had to go over and over the episodes that I watched because it took me a lot of time to understand and digest what I had just watched.

Reading was terrible for the first 5 or 6 weeks after the stroke.  I had to have it extremely quiet because I couldn't focus on what I was reading if there was any kind of distraction to me.  Even when I started to read, it was like going back to the start of my reading "career" because again, I had to read things very slowly so I could understand the words and what was going on in the story.  Even now, I have to revert back to a dictionary quite often to look up words that I can't pronounce and to see what they mean.

That was and is probably one of the most frustrating things on a daily basis.  I read a number of books before the stroke and after, oh my goodness, it was so different now.  Before when I read, you know I could read a book probably every week, some times two books in a week.  Now it may take me up to two or three weeks to read just one book.  Even now, sometimes when I go to purchase another book that I've seen (one good thing about Kindle 😏), it will tell me if I have already purchase the book.  It's amazing but quite often now I don't remember reading the book so I go back to the Kindle and read it again.

The I-phone, well I've gotten better with it 😊.  But there are still some people that I can't remember but that's ok, I guess it will come back to me as I go through this process.  I use the Contact Names, I use the Calendar (a lot with all the therapies going on right now) and I use the Notes when I go to the Aphasia group with the notes I have to talk about.  I'm hoping that eventually the words will come to mind and I don't have to keep everything written down, but for now, it's how it has to be!

And to anyone out there, the other thing I did when I got home, was I purchased a "password" book so that I could write down all the passwords for anything on the computer (like Facebook, I-phone, I-pad, Pinterest, Google and everything else) just in case, you know?

I have traveled past this sign a few times over the past couple of weeks.  Now I know it is about speeding but there are a number of reasons a person can suffer a brain injury:  stroke or a heart attack can cause it, you can trip and fall and bump your head (it would have to be quite a bump though), skateboarding, a car accident (without speeding), skiing with a bad tumble, and I'm sure there are others that I can't think of right now.

I know, I have said it before, I have come a long way since my stroke, but there is still so much to learn again to even get back to half the skill I used to have.  I'm still trying to learn fractions, and that was really very simple to me before I had the stroke, typing and even printing takes a lot out of me because the right hand side is weak and I can't print or write very much because it makes me tired and I have to think did I use the right word to describe something.

If anyone had told me before the stroke, that I would have so much trouble trying to get back to where I used to be, I would have thought you were crazy.  I really don't like speaking very much to anyone, and only when I HAVE to.  I used to be the "life of the party" but now it is difficult and quite often I can't contribute "fast enough" so I just sit back and listen.  I don't like to go out with friends or even family, because again, it makes me tired trying to think of things to say and did I say them right.

I used to travel for work and for recreation, but it really takes an effort because I can get lost if I am traveling by myself and I don't like to hold people up but now I have hold them up because I can't get around as well.  It is very frustrating!  I don't even like to go to movies any more because people talking around me can often make me miss something in the movie and then I have to think about what I've missed.

As I sit here right now, I like it, because there is no one home right now and I can think about what I want to type without anyone rushing me and there isn't any background noise to distract me.  I can think of a lot of reason's from "before the stroke" but the one thing the stroke has taught me is that everyone should be patient and kind to other people - because not everyone can think like you do or do things as quickly as you can and you just never know why.

(June 1-7, 2015)

I went for a couple of tests this week to find out why I had the stroke.

First, can I just say, anyone who has been in the hospital for something like child birth or has some paralysis of some kind - it's really rough.  You have to rely on everyone around you, I mean EVERYONE.  When I think back now, I don't know how I came through it.  Mainly I think it's because you don't know, at the time, that you're not "normal", everything seems normal to you.

I had to wear a diaper (I know, GROSS!), because I couldn't get up and I couldn't feel when I had to pee (part of the paralysis).  Even eating - I couldn't "operate" the fork or spoon to feed myself.  I couldn't shower without the nurse's help (basically I sat in a wheelchair and the nurse would shower me).

That first weekend, my cousin Michelle, and my friend Sonia (she flew up from Texas to make sure I was okay), family and my bosses from work were there too.  Again, Sonia was crying when she first got to the hospital room (again, I didn't know "why").  Richard called Michelle after I had the stroke, and she was crying at work (we talked about it the weekend of March 26, 2017).  Something I can't comment on because I didn't "know" what was going on.

It's weird, but I remember when Keven and Tami (from Accliamed) were there.  Tami brought my paperwork for unemployment insurance and I remember thinking "well that's dumb, because I'm going back to work in a couple of weeks".  If I only knew!  Even now, two year's after, I still have a lot to do to get back to where I can do the things that I used to do before the stroke.  I guess the mind and body know what is best for me because again, all I wanted to do was sleep and recover.

At that time, my Auntie Joy, was in the hospital too - she had cancer.  Even though she was going through her own pain, she and I got to visit each other when someone could wheel my chair down to see her.  Auntie Joy was on the 4th floor too, just in a different section of the hospital.  My brother Keith came down to see me too (he and I are not that close) but he came when I had a test the next day, and I wasn't do very well because of the test.  When Keith came into my room, he came over the hug me and I started bawling.  It took me a while to compose myself.

I have to say, my friend Pam (Wood) Thompson, came to see me as well. We hadn't seen each other for a few years, but she came when she heard the news.  I also have to say, Pam is hilarious!!!  She knew just what to say to make me laugh when I needed it.  I can never repay her for the times she came to visit me at the Grey Nun's and the Glenrose!  I needed Pam to keep my spirits up!

The Chaplain, Brian Greenwood, came to talk to me at the Grey Nun's.  We were talking, while he was talking he said "oh you're Rae" and he made an "X" with his arms (it was something back in the day that my friend's used to do).  I felt bad because I knew I should know him from somewhere but I couldn't remember where from.  Again, it was something I couldn't remember no matter how I tried because of the stroke.  Now, I can remember, I was friends with Karen and Brian (I actually was the Guest Book attendant at their  wedding).  It bothers me a bit now, because I couldn't remember him when he came to talk to me.

#stroke #brain injury #greynuns

It has been a couple of weeks since I've written in here.  That's because of a few things that have been going on:

1.  Zach moved out last Tuesday, and the living/dining room was a mess because of all the boxes he was packing to go.

2.  I went to Brooks last weekend to visit Michelle, my cousin.

3.  I really didn't feel like writing anything because I was feeling a bit depressed or sad b,ecause it's taking me longer (a lot longer) to recover from the stroke than I ever thought it would.

Sometimes it seems like everyone around me doesn't see the disabilities like I do (and trust me - it is a brain injury I am suffering from now - and still recovering from...quite possibly for the rest of my life).  Everyone is cheering me on, or they say "you can't even tell you had a stroke".  All I can say to myself is "Yaaaaa right!"  But I'm not going to get into all that (right now at least 😮).

The one thing I did receive in the mail was our passports (Richard, Zach, Kennedy and me).  Now, before I had the stroke, it was really quite easy to get them - you just filled out the form, the passport office would received them, and then you'd receive them back in the mail - quite easy, right?!  Not any more!!!!

I had to really think about: was I putting everything in to the right place on the passport renewal info, I had to get the right addresses in the right spot, I had to get the positions right (for our jobs) in the right spot, I had to get the reference information as well in the right spot.  It wouldn't have taken me long (before the stroke) - but this time (after the stroke) it really took me a lot of time and effort to get all the information together.  The other thing was the writing - it took me soooooo long to write everything down because of my right side being "slower" than it was before.

One thing this disability, that I now have, has taught me is that no matter what, you have to keep trying when things look bad (or different than it used to look).  The "reward" of doing all the applications for the passport renewal is that WE GOT THEM!!!!  YES!!!!!!!!!  They didn't come back looking for explanations or anything!  I also got them for 10 YEARS (which means I don't have to think of them until 2028 😀).

So even when things aren't going the way as I want them too, or if it seems it is taking me a bit longer that I think it should be going - there is always something positive in this recovery of mine!

(May 28 - June 4, 2015)
After I got a little bit of rest the night before, I woke up in the hospital room and Richard was on the phone with his nephew, Sean.  I looked around but that was all I could do.  My right-side was completely useless. I was paralyzed on my right side - I couldn't get up to go to the bathroom, I couldn't wash my face or hair, I couldn't change my clothes or anything like that.  It was so frustrating.  Plus I couldn't talk to let anyone know how I was feeling.

Ken and Terry came to see me at the hospital (again, I'm not sure of what time it was).  I think I said "Hi" or at least that's what it sounded like to me.  Terry was crying and I couldn't figure out why she was crying.  I couldn't say anything other that "hi" and I believe that shocked her.  We had been friends for over 30 years and I couldn't say anything, I couldn't move my right side and I couldn't comfort her that I would be okay (and really at that point, I didn't know that I was going to come out of it or in what capacity).  They would return on Sunday to see how I was doing.

Richard, Zach, Aaron and Kennedy were around on the weekend.  It's funny, because Zach is a worrier, Aaron keeps things to himself and Kennedy just had it in her head that "mom will be fine".  I'm not sure if I ever will be truly "fine" the way I was before the stroke, but at this point, I just wanted to operate my right side and I needed to speak words, not just "hi".

The first weekend at the hospital, the staff couldn't feed my anything other than "mashed" meat, potatoes and vegetables.  Because the doctors couldn't evaluate my swallowing and such until the following Monday. It was really quite gross!

I know people were reaching out to Richard to find out what was going on with me and how they could help.  He didn't really have any answers though, and Richard would have to wait until the weekend was over.

When Ken and Terry came back on Sunday to visit me, I guess I must have been saying somethings better, because Terry was a little more relaxed.  It frustrating even now to me, that I couldn't say more (it wasn't aphasia because I have to learn to talk all over again...like a toddler).  Plus the I still was paralyzed on the right side but that didn't seem to bother me as much as not being able to talk.

The next week, the days sort of blend in to one another. I was able to each small portions of food, and the doctor's sent me for a couple of tests to try to see why I had the stroke.  The doctor's said everything "looked all right".  So the next week, they would send me for some more tests.

People came to see me that first week, but really I couldn't understand and it was really quite tiresome.  All I wanted to do was sleep.  They say that is the body's way to recover and I had a whole lot of recovery to do.

The Day of the Stroke

I am going to tell you about the stroke from my perspective (the words at the beginning were written by my husband).  I am going to tell you what I was feeling when I first had the stroke and the days at the Grey Nun's Hospital and then at the Glenrose Hospital.  Some of the items I may be repeating because my husband wrote about them too.

May 27, 2015

It was a Thursday after work, my husband (Richard) and I had just finished supper and we went downstairs to watch something on television (we are in a split level house).  I was feeling totally fine up to that point.  As I was watching something (I can't remember what), I suddenly felt nauseous.  So I sat for a few minutes and when I didn't feel better, I thought I would go upstairs a lay down for a bit. Now I thought I had told Richard but as you can see by the words he wrote, I didn't say anything out loud to him. I walked up the first three stairs and then I fell down.  Weird, but I just thought I really must feel sick if I could trip on the stairs.

I finally got up to our room, but there was no way I could get to my side of the bed.  Again, another weird thing but I flopped horizontally across the bed, and I must have managed to slide over to my side and I closed my eyes.  I figured I would just need to sleep it off...what ever "it" was.

Now according to Richard, he came up to see where I was (because I didn't tell him anything).  He came in the room and asked what I was doing.  I THOUGHT (again, I thought I responded quite normally) "I have to sleep because I don't feel well".  As you can see by what Richard wrote in his post, it didn't come out right.  He asked me again, and I said again, "I don't feel well".  He then said I could to one of two things:

1.  I could get in the car and he would drive me to the Grey Nun's hospital, or;
2.  He would call an ambulance to take me there.

Wow, I thought for being sick with the flu or something like that.  I managed to get out the word "wait" and the word "no".  Richard said he didn't care, those were the only two things I had to choose between.  So I got on a pair of jeans (I never go out anywhere in my sweat pants 😉), and off we went.  The hospital is only about 10 minutes from our house so we got there right away.  Remember, I didn't know what was wrong at this point.

We went to the Grey Nun's Hospital Emergency Room and I sat down while Richard talked to the nurse.  Then I heard him say, "I think my wife is having a stroke".  I was sitting there and thinking to myself, "Oh great, is he going to look like over-protective husband when the nurse checks me and sends me home because I've got the flu".

The nurse came around the partition, and said to me, "Can  you squeeze my hands as tight as you can".  I thought I squeezed them both very tight, but again, my right side was getting weaker now, and it just slid down her hand.  The nurse said "You're right, she is having a stroke.  You get her checked in and I will get her to do a CT scan".  This whole time, I'm thinking you both are going to looked dumb when a doctor comes and says she just has the flu.

I don't remember much at that point, apparently I got to the hospital in time for them to give me the tPA (tissue plasminogen activator), which would help me after the stroke (you can only have it if you have a ischemic stroke within 3 to 4 hours after the stroke).  Then the nurse said they are getting a room ready for me.  During the time I was having the needle, Richard called all three of my kids (Zach 22, Aaron 22 and Kennedy 19).  I must have been dozing on and off, because the next thing I remember is my oldest son, Zach, being there.  Now again, things were very different for me because, it seemed like Richard and Zach were having an argument.  Richard told me afterwords they weren't arguing at all.  Zach was telling Richard that he should have called the kids right away because they all should have known and Zach would have come down immediately.  I remember they were talking and it seemed so loud to me.

By this time, it must have been about 11:00 pm, Aaron and Kennedy got there.  Again, I could hear them talking and such, but I couldn't talk back to them.  The nurses got me to a "stroke" room right across from the nurses' station on the 4th floor.  That night, I didn't get very much sleep because the nurses had to check on me every hour to make sure I was awake and to see if I could answer any of their questions, since I wasn't talking at that time.  Also I totally lost all feeling and senses on my right side.  I couldn't walk and my right arm was useless at my side.  And still, I didn't think I had a stroke, I just thought...I don't know what I thought.  It's very weird even now, almost two year's later, it's like everything was so loud but there is a peace as well because it was almost like I was observing outside of myself, what was happening to me.

I am going to separate the posts about the initial days because this will take a bit to remember and I want to include as much as I can from the days at the Grey Nun's and the Glenrose.