Perspective

I didn't realize that it had been so long since I updated this blog.   My recovery continues at a slow pace, but it has now been  almost 11 and a half years, so I'm just thankful that there is still ANY kind of progress/improvement, no matter how slow and small.  

About two years ago, I really started to feel (or rather, PAY ATTENTION TO) a pull on my heart.  Words and phrases were  being shown to me,  that I recognized as words i had said in the telling (and re-telling and re-telling) of my story

   Over the past 11+ years,    through everything that has gone on, I've heard the same things from so many people... telling me, "You're so lucky," You're so strong", "You're so brave.","I  don't  know how you do it,"You inspire me"...All wonderful sentiments, for sure.  Who wouldn't want to be told those things?  It helped in a way, especially during those early months that were so very hard.  The problem is, that on some level, I started to believe that I had done it all on my own. (As I went through and re-read my previous posts here, several times I wrote about how I was strong, or how I figured things out or I did this or that, etc.    It took a long time, even YEARS, before I  began to understand  that if anyone saw even an ounce of strength or courage in me,   that  it came from God alone.   On my own I was (and still am) just a scared, weak,  broken, messed up woman.  I would say that, at the time of my stroke, and even for quite some time after,  I was, at most, a believer  in its most basic form, but I was not a Christian.  I was not looking for God, I  had no real concept of who He even was or what He would want with someone like me.  But He was there.   I didn't know it then, and it even took me years afterwards to really know it, but I'm convinced of it now. As far as I'm concerned, there's no other  explanation for any of the events that took place, not just  "that day", but also in the weeks, months and years that have followed.    All thanks and glory to HIM.

they moved!!!

About a week ago I was laying in bed.  It was around midnight. I was  tired.  Completely relaxed, eyes closed, getting ready to go to sleep.  Suddenly it occurred to me that it really felt like I was moving my wrist back and forth.  I  didn't completely trust the "feeling", so I actually LOOKED, and saw that, while it was subtle, it was definitely moving.   
 Not expecting anything to happen, because it had always resulted in a FAIL before, I attempted to move my fingers.  you can't imagine  my surprise when they MOVED! Again, it wasn't a lot.  It was just some slow, ugly, clumsy wiggling, but since my left hand has spent the last almost 8 years clenched in a fist, even a little bit of wiggling was huge to see and feel!   I have to admit that I didn't get much done the entire next day because I spent so much time just watching my fingers  actually move!!  haha.   It's been a week now and I still am amazed, but also afraid that it will "go away", so several times throughout the day,when I'm sitting and watching TV or things like that, I'll be "practicing" They do get tired pretty quickly, but I guess that makes sense...they've been  useless for a long time, so they're  pretty weak now, but I try to use them a little more often than I was before.


Many, many times over the years, I've had dreams that I was suddenly, miraculously, and completely  "cured", but  even after regaining everything physical that my stroke took from me, I couldn't remember how to do anything.  I think about that a lot.   For example.. Three of my kids have learned to tie their  shoes without me being able to help them. In my mind, I try to go through the motions of tying shoelaces, but if I suddenly got back full use of my fingers, I'm  not 100% convinced that I would remember how to do things like tie shoes  or put my hair in a ponytail..... I know how silly that sounds, but I think I've forgotten some things after not being able to do them for so long (I've learned how to do almost everything with my one good hand, but those are two of the things that have continued to kick my butt.


 I've had  a couple of people ask me what my "secret" is  for  making my fingers move after such a long time. I have no secret...if I did, I'd have gotten the use of my hand back years ago.  I didn't do this.  God did.  He is in control, and I know that any further improvements and victories will be given to me in His time, and if I don't get any better, it's because that is His plan for me.


 The night when my fingers moved, I was so excited, I grabbed my black berry and posted it on Facebook.haha  I felt so blessed as the comments of support and friendship kept rolling in for the next 24 hours.  I have the BEST friends and family who I know I can count on to celebrate even the smallest of milestones with me.   


Thanks for reading...be blessed!!
~Sam

another victory

 It started with a loaf of bread.    I always write the date on it, to keep track of when we bought it, and this morning, for the first time since my stroke, I put the marker in my left hand.  I realized that was something I had never even tried.  I couldn't stand the thought of finding just one more thing I couldn't do (even though I *knew* it in my head), so I just never made the attempt.  But I was alone...no one to watch me fight with  fingers that don't cooperate, or give up and throw the pen across the room out of frustration, so I gave it a try.  And I did it.

It was not pretty, by any stretch.  My 5 year old has better penmanship.  but that isn't really the point.  The point was that I did it :)  If I have learned anything from all of this, it is to be thankful for every little thing...no matter HOW little it is.  So for me to write the date, even if it was a mess (though I thought it was legible)was huge and it just cemented in my mind that there is ALWAYS hope.  Way back in the  very, very beginning of all my rehab, I remember being told that at 6 months-post, I'd probably be as "recovered"as I should expect to get.  I am happy to say that whoever it was who told me that was WRONG.  Granted,  most of the *big* stuff happened in those first six months, and it slowed  way down after that, but to be able to say, after 7+ years, that I am still having "firsts" is definitely more than I used to hope for or believe was possible.

An unexpected blessing

December 2004...after being not quite sick...but feeling a little "off" for a couple of weeks, I went to the doctor, thinking maybe I had an ulcer or something.  He asked me if there was any chance I could be pregnant.  The thought had never even crossed my mind, so I immediately said NO.  He ordered a pregnancy test anyway.  I was so sure it would come back negative.  I'd had three babies...I knew what "morning sickness" felt like and this was not it.  So I was SHOCKED a few hours later when the nurse called and told me that it was positive, and  I should schedule an ultrasound ASAP.

I am beyond ashamed to admit this, but my initial reaction was not excitement or happiness.  I was upset.  Not only was it not exactly "planned", but I was SCARED.  I was just over  a year post-stroke..still sort of learning how to take care of MYSELF,  and didn't know how in the world I was going to take care of this tiny, helpless newborn.  I wasted much of my first trimester being afraid and feeling guilty for letting this happen...I was 32 years old...it wasn't like I didn't know how to NOT get pregnant.

  My fears settled down somewhat during the second trimester, but picked up again as my due date got closer.  There were just so many questions that no one could answer (of course...even in a normal pregnancy, no one can guarantee that there will be no complications).  I understood this, but it didn't do much to make me feel better.  In addition to my regular OB, I had one visit with a neurologist, and I always sort of got the feeling that no one knew what to do with me.  Again, I understood--how many women do you know who gave birth post-stroke?  I was told that I would "probably" be ok.  I  not only questioned whether or not I had the strength/stamina to give birth naturally, but then started to wonder if the strain of pushing could cause another carotid dissection and, thus, another stroke.  Questions no one could answer, so we decided to schedule a c-section for August 2,2005 which would have been 38 weeks. I still didn't know how I was going to take care of him once he was here, but at least I felt a little better about how he was going to get here.

Although the pregnancy was technically considered "high risk", all was normal. It was harder on me, physically, than the first three had been.  I was older, and my body was just different...I  felt every ache and pain so much more than I had with the other boys..when really I felt great all the way through  (other than tired and then...fat).


I did end up having some non-stroke-related complications late in the third trimester, which resulted in our little Samuel being born via c-section on July 26, 2005, at 37 weeks.   Now there was definitely no turning back and I was going to have to figure out how to do this.


As always...I did.   It was not easy, but also not what I was expecting.  I figured it out.  The dressing, the bottle-making, the holding and comforting. The one-handed diapering was tricky because you  know...you gotta be quick with those baby boys, so I got peed on more than once as I "practiced", but  I never dropped him or hurt him in any way, like I had been so afraid of doing, and, most importantly,  I stopped feeling so guilty for ruining him by "making" him grow up with a disabled mother.   It doesn't seem to bother him at all.

It's a great day to be alive

I have been back and forth about writing something to "celebrate" this day.  I wanted to be able to do it right, I just wasn't sure if I could.  I'm still not sure, but I'll wing it and see what happens.  :-)

Today is the 7th anniversary of my stroke. I was 30 at the time.  I had none of the risk factors for stroke.... it was just "one of those things", a series of unfortunate events that led up to it.  I wasn't taking care of myself.  I had 3 kids (they were 7, 4 and 14 months at the time) and 2 jobs.  I was constantly on the run.  Not eating. Not sleeping.  Taking care  of  myself   wasn't a priority, and it manifested itself in a way that no one could have predicted or prevented.   Sometimes it feels like it was just yesterday, and other times it feels like a lifetime ago. I guess that, in a way, it WAS a lifetime ago.  It was a different lifetime.  I barely remember myself before the stroke.

In started in early October of 2003,  when I was diagnosed with mono (though follow-up tests all came back either negative or inconclusive, so who knows...), which turned into pneumonia.  As for what happened … the theory was that the mono (or whatever it was) and dehydration had weakened my right carotid artery.  Then the pneumonia set in, and my non-stop coughing and hacking  caused a carotid dissection (a tear in the carotid artery)and that either caused a clot to form, or allowed one through, and BANG!    Luckily I was sitting in the doctor’s office when this happened (I use the term “lucky”, but it was more than just that—I fully believe that God was watching over me that day, and in the days leading up to it).  I still get this sick feeling in the pit of my stomach when I think about how just the previous day I had driven Joel to school in the morning and spent the day at home with David while Shane was at work for 12 hours. The “main event” took place on a Friday, and Shane was off that day, so I made a last-minute doctor appointment and was able to get in right away. For as bad as this was, it could have been SO much worse.

  I lost big chunks of time from that day, and much of the following few weeks. I have some memories, but they are very foggy. I had no concept of time whatsoever…I think I was conscious the whole time, but was very “out of it”. Detached from everything that was going on, like I was watching a dream.   I don’t remember that $5000  Life Link flight to the hospital.  I don’t remember being told that I’d had a stroke or that moment when I first realized that the entire left side of my body was, for all intents and purposes, GONE.  I couldn't keep track of what day it was, but somewhere in my mind, I knew (or *thought*) that if anybody knew that, they’d think something was wrong with me (yes, I do realize how dumb that sounds! haha), so I  made sure to look at the whiteboard on the wall first thing when I woke up—the nurse would always write the date on there…so when the swarm of neuro docs came into my room every day  and asked me  what day it was, I knew what to tell them.

 I wasn’t allowed to have anything to eat or drink those first few weeks, because of the weakened muscles in my throat and tongue, and somewhere about halfway through that initial hospital stay, I had surgery to put a feeding tube into my stomach and spent a couple of weeks getting a stinky liquid concoction pumped in through that. Within the first few days of November, I transferred from Minneapolis to St Cloud and spent another 3 weeks doing inpatient rehab. When I first got there, I literally couldn’t even sit up straight—forget walking.  I couldn’t. I was learning how to walk at the same time as my son (though I’m sure he learned faster than I did!) I took my first steps on November 14, 2003.

I have never really considered myself a particularly "strong" person, in any sense of the word. I spent the first year post-stroke feeling very negative and depressed. Everything was "why me?"  " poor me", blah blah blah. I cried a lot and was generally probably not very much fun to be around.    Obviously, I'm not thrilled with what happened but, with time, I was able to look past what I had lost and see the ways that it has blessed me.  And it has! It got me out of a job that I hated and that I felt incredibly burned out on and allowed me to be at home with my kids.  We never thought we could afford to be a one-income family. It was not the way I wanted to make that happen, but the end result is the same. I have awesome, supportive, encouraging friends, and I was shown the lengths that my parents and other family members—and, in a handful of cases, even co-workers and people that I hardly knew, were willing to go to help me out.  We always feel like we "know" our families and friends will be there in those times of crisis....but mine proved it by going above and beyond.  On the flipside of that coin, other people who I thought would be there...really weren't. And that's not necessarily a bad thing to know. I pray more now than I ever did before. 

Seven years later, I still walk with a noticeable stagger/limp, sort of like I’ve had a few too many, my sense of  balance sucks, and although I have regained *some* movement in my left arm, my hand has really not come back to a functional level.  I'm pretty good at doing EVERYTHING one- handed. Thank God the stroke took my left side, and I am right-handed.  I don't multi-task as well as I did once-upon-a-time. I get easily overwhelmed, flustered and frustrated…but so what??? I've always been clumsy and scatterbrained and a little on the forgetful side...now I just have something to blame it on!    :-) 

I still notice small changes...certain things coming back, or feeling stronger. They are not big changes...probably not things that you'd notice if you don't spend a lot of time with me...but *I* notice.   I may never be the way I was "before". I hope and pray that I continue to improve and regain as much as possible, but if this is as good as I ever get...I can honestly say I'm okay with that. I don’t see that as “giving up”-I just know I’ll be alright.  Maybe I’m a little bit tougher than I thought I was.