Update: The In Darkness Sing blog at JenniferSaake is experiencing prolonged technical issues, so I'm temporarily posting back here on my old Stroke of Grace blog.

Thirty-nine-year-old Jennifer Saake (founder, Hannah's Prayer Ministries), experienced 6 strokes via vertebral dissection at a chiropractic office, including brain stem and cerebellum bleeds, in Oct. 2011. Jenni remained hospitalized for nearly 2 months and was not expected to live (near death experience) nor recover, but if she even survived, she was slated to live out her days in a nursing home or, best case, to maybe come home but wheelchair-bound and needing 24-hour care. At 5 years, 7 months God showed how He was writing her story from the beginning.

Jennifer is currently writing more books and stays active on both Facebook and Pinterest. Stroke of Grace became In Darkness Sing in early 2018 and has moved, along with all five of Jennifer's active blogs, to one location at JenniferSaake.com. (Please see above temporary update note above!)

Monday, December 31, 2012

Year End Reflection

I don't know the author, but I like this quote: "Prayer calls me to abandon the present as my only lens on life and to commit to look at life from the perspective of eternity." - Paul David Tripp

On Saturday, out of the blue, I started sobbing. Now I have cried a LOT over the past 14 months, until I thought it was not humanly possible to even make more tears, but I think Saturday was the hardest I have ever cried. I don't even know exactly why, but I just sobbed and sobbed. Rick wanted to know why I was crying and all I could splutter out was, "It's been a long year." So very much was racing through my mind, but that about summed it up.

I think a part of Saturday's tears came from thinking a little more about my 3rd stroke. It is the one I try to avoid reliving. It is the one that was too terrible to even talk about. I went unconscious early in my first two strokes (and before I went unconscious, I was aware of the direness of the situation, but found the strange responses of my body to sort of tickle my funny bone too, plus I had such an amazing experience that is really my focus when I think about these strokes). I had my final three strokes in my sleep one night, so I woke up to the scary consequences, but slept through the actual events. So only for the third one (fairly major too, though not quite as bad as the first two) was I pretty much awake and aware for the whole thing. They did have to sedate me for my MRI, so I seemed rather unresponsive for a while, but remember hearing and being aware even when others thought I wasn't. I remember the paralysis and being "locked in," only able to move one blurry, non-paralyzed eye. Of feeling like I would drown in my own vomit. Of feeling so incredibly dizzy, and a doctor asking me if I was prone to motion sickness (I guess that accounted for the severity of my nausea). I remember the horrid gurney ride down to MRI, where every jostle of the bed felt like a brutal attack against my system. That's all I can manage to recount, but it was so much worse!

Yesterday, I didn't dare even try to sing at church. I knew if I opened my mouth, opened my heart to the music, I would start sobbing again and be unable to bring it under any sort of control. I was feeling fragile enough, that even without singing, I was in serious tears about 3 times during the service and teary most of the morning, then again at bedtime last night. Rick is good at getting me giggling when I'm crying and I'm so thankful for his sense of humor and his grace.

After the service yesterday (a little tiny part of our story was shown on the big screen at church - I did pretty well through it, but one of the times I lost it was at the very end) a friend came and sat with me and just held me while I cried. She even cried with me. It was such a gift to not have to try to put to words a grief that I can't even explain, and just cry.

It is strange because I CAN'T cry around most people (except poor Rick, with whom I can't be alone and NOT cry, with anyone else I pretty much can't cry, at least not one-on-one, the group dynamic of church usually doesn't stop tears there though, as church attendance is my 3rd most likely place to cry) but this is the second time I have shared tears with this same friend, something almost no one else has experienced. Thank you, L. (I haven't even ever cried at counseling. I think this comes from working so hard not to cry in the face of so much different pain in the hospital? Now, in addition to the brain damage that impacts emotions, there seems to be my own emotional blockage now.)

A few odd things a stroke can do, that most people do not realize, is just as it can cause external paralysis that is visible, it also can equally impact the internal.  We know it has impacted my eustation tube in my left ear, made my digestive track sluggish, and much more.

2013 will actually be my third calendar year with stoke effects (I stroked in 2011) and there have been some really good things about this past year (like learning to walk) but it has been a hard road. I'm ready for a fresh start! Many of my friends are posting theme words they want to focus on next year. I think I am choosing "Restore" as my focus word.

I need to close out now. I started having another ocular migraine about half way through this post. I've been able to manage up until now, but can't see what I'm typing anymore, so need to give up.

From the Jesus Calling by Sarah Young Facebook page.

I’ll never forget the trouble, the utter lostness,
    the taste of ashes, the poison I’ve swallowed.
I remember it all—oh, how well I remember—
    the feeling of hitting the bottom.
But there’s one other thing I remember,
    and remembering, I keep a grip on hope:
22-24 God’s loyal love couldn’t have run out,
    his merciful love couldn’t have dried up.
They’re created new every morning.
    How great your faithfulness!
I’m sticking with God (I say it over and over).
    He’s all I’ve got left.
25-27 God proves to be good to the man who passionately waits,
    to the woman who diligently seeks.
It’s a good thing to quietly hope,
    quietly hope for help from God.
It’s a good thing when you’re young
    to stick it out through the hard times.
28-30 When life is heavy and hard to take,
    go off by yourself. Enter the silence.
Bow in prayer. Don’t ask questions:
    Wait for hope to appear.
Don’t run from trouble. Take it full-face.
    The “worst” is never the worst.
31-33 Why? Because the Master won’t ever
    walk out and fail to return.
If he works severely, he also works tenderly.
    His stockpiles of loyal love are immense.
He takes no pleasure in making life hard,
    in throwing roadblocks in the way:
34-36 Stomping down hard
    on luckless prisoners,
Refusing justice to victims
    in the court of High God,
Tampering with evidence—
    the Master does not approve of such things. - Lamentations 3:19-36 (The Message)

Saturday, December 29, 2012

Lewis Quote

There are a couple of articles that I know I am going to want to go back to (and you may want to read too), so I better post them here so I don't loose them!

When Christmas Hurts an interview with my sweet friend, Holley Gerth (from Dayspring).

Learning to Embrace Pain Uncanny how this article addresses so many issues I struggle with, right down to photography and the cane issues. Comments even talk about Photoshop, something I brought up just yesterday. Some day I hope I can view these issues with such maturity...
Picture from Facebook, quote by C. S. Lewis
Then Jesus said to his disciples, “If anyone would come after me, he must deny himself and take up his cross and follow me. For whoever wants to save his life will lose it, but whoever loses his life for me will find it. What good will it be for a man if he gains the whole world, yet forfeits his soul? Or what can a man give in exchange for his soul? - Matthew 16: 24-26

Friday, December 28, 2012

Post Christmas Life

Christmas went well. It wasn't quite as big of a gathering as I had anticipated, so I enjoyed all who were gathered (and missed the "sister" who couldn't come). About the most stressful part of being away from home for a few days was the lack of grab bars in the restroom, but even that was doable, just not terribly easy. I had to explain to my nephew why I was staring at him during prayer (lip reading) and about short-term memory loss that significantly impacts how I play games (interesting when you can't remember from one round to the next what was played in the hand immediately before), but mostly there were just a few fairly minor adjustment and modifications made around changes and new needs. Thank you all for being so gracious and subtal in the changes! It all went much more smoothly than I anticipated. I am thankful! I was thrilled to be able to attend my kids' play in person on Sunday!!!

The one thing I was very most tense about (I'll let Kendra share on her blog if she wants) was a goal accomplished on Christmas morning!  Once I reads that news I felt the knot in my stomach (that I didn't even know had been there) release. I feel like I have had Christmas now. Way to go, Kendra! It is not a final thing yet (took me about a month to confidently feel I was actually getting the hang of it consistently and on command) but this was a HUGE landmark! So very excited, my friend!!!

My hubby also surprised me with a new Samsung tablet on Christmas morning. My speech therapist had shown me how handy these little gadgets can be and I mentioned my intrigue to Rick months ago. Apparently he's been looking for a good deal ever since. Poor guy - the first one he ordered for me got lost in delivery, so he had to order a used, refurbished one to replace it in time for Christmas. Now he's dealing with the whole insurance claim thing. Single-handed typing is SO much easier now. This makes a great therapy tool on so many levels (and would be an incredible gift even if I weren't needing adaptive or therapy equipment)! Thank you, Rick.

Our gift to him was that my parents took the kids and I to the Target a half hour from home last month, to our nearest location that still has a photo studio. We got pictures taken, as a surprise for Rick. My first professional photos since the stroke, so a landmark too. I have posted here before, how very much I despise having my picture taken now, so it was probably the most emotionally costly gift I could have given. I literally had several nightmares about giving this gift. But it went well, I think. 

Rick's got to Photoshop a few images before I get brave enough to post any (I've had horrid acne since the stroke and wouldn't be nearly confident enough to share the pictures as they are, for this reason alone), but I do hope to eventually share a few. It was fun being able to pull off this surprise and the photo lady asked to take a photo of our daughter's skirt to use as a photo frame background. So if anyone else did holiday pictures at a Target this year, and you were offered any pictures framed in grey plaid, that's my daughter's skirt (I think it went into a national database that any Target studio could use).

Speaking of Target, one of our friends got such a giggle out of my last Target story, that she sent two gift cards so my mom and I could go get lost play again. We did yesterday (play that is, nobody got lost this time ;) ) and found some great after-Christmas clearance deals! If you are reading this post, thank you, Laurie! :) We had a blast, mom got two pair of leggins (she sais I'm dragging her kicking and screaming into current fashion) for way less than you could normally pay for one pair, and I love my lacy new long top! I stocked up on clearance gift bags (I've never been so thankful for gift bags as I was this year, since I still can't use my hand well enough to traditionally wrap) and some clearance school items for the kids' upcoming changes too. It was a great way to spend my afternoon after counseling yesterday. I think retail therapy is definitely my favorite form of therapy. ;)

Yesterday was the anniversary of our first miscarriage.  Every other Dec. 27 (since 1994, when she died, except probably last year when I was still too unaware to notice the date), I have been teary. Yesterday passed without one tear. Yes, I still feel a little melancholy for the missed out years without Noel, sad for what might have been, sad for me, not for her. For the most part, I just envy her. She is in Heaven. I am more jealous than anything else. (If you don't understand why, here's what I've recently posted on this topic.) After years of recurrent grief triggers, this is a strange, new experience for me.
I'm only about less than 10 devotionals from being DONE with my current manuscript and being able to query publishers, but I have hit a motivation slump (not really "writer's block," just loss of focus) and done basically no new work on the book since October. Please pray for renewed motivation and inspiration to finish well. Harvesting Hope from Heartache - join me on Facebook. :)

We tried to go to water therapy this morning. The pool is closed for cleaning until the new year. We (and several other women suiting up in the locker room) had no idea our class had been canceled until we were already there. The exciting thing is that Mom and I hit the gym equipment instead and I was able (on the very lowest resistance levels, of course) to use all but one machine I tried. Getting in and out of those things was therapy in and of itself and I'm glad no one had a video camera handy to document the "creative" ways I sometimes resorted to, but I did it!!! I am sure feeling it now, but think we got a better (or at least different movements) work out than we usually do even in the water.

I only gained one pound during the holidays, so hopefully will get back on track fairly quickly there.

Be strong in the grace that is in Christ Jesus! ~2Tim 2:1 (I love the thought that grace IS found in Jesus!)

Tuesday, December 25, 2012


I have this post pre-set to auto-post (while I'm busy enjoying family time) as a reminder of why we celebrate Christmas at all.

Here, I've been struggling all year to find my own "purpose" but it is so clear to see why He came.

If you are looking for my 14-month (today) update, I posted it a week early.

I offer humbly, because it is not even my gift to give in the first place, but the biggest blessing I can think to give you today is to wish you overwhelming peace as you contemplate your relationship with the Christ-child.

Merry Christmas!

Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.” Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, “Glory to God in the highest, and on earth peace to men on whom his favor rests.” Luke 2:11-14

Saturday, December 22, 2012

Christmas changes

I got up this morning and put on the same shirt I'm wearing in this picture:
I have avoided wearing this shirt this holiday season (even tough it is covered it tiny, adorable candy canes and bows) because the sight of it reminds me too much of the hospital. I told my husband that there was no day better day than our oldest's birthday (thank you for 13 wonderful years, Son!), to intentionally wear it and work on "making a bad memory into a good memory," so that's exactly what I am doing. Hopefully the sight will now remind me of this amazing landmark of celebration rather than of my final days in rehab.

It looks like we will be having a white Christmas. We woke up to a dull brown world, but by early afternoon it was all white and is supposed to keep snowing, off and on, for the next few days. I make my husband really nervous when I'm walking on ice (he's so sweet and protective and so careful for me!) and I make really funny footsteps with two feet and a cane, but the snow is pretty.

Tomorrow morning (presuming it is not too icy and snowy to go), our youngest two will be participating in our yearly church Christmas play. I am so eager to attend in person, rather than just on video, from a hospital bed, like last year! We may even get to see a friend, who was a fellow patient in  rehab, there in the morning! :)

I think I finally got all my Christmas cards in the mail. If you don't get one and want to read our family letter (mostly detailing my strokes), please get me your mailing address (Sue F., Debbie, I know I don't have your current addresses, and probably several others either - the letters include some details not shared here) and I will get one in the mail, even into the new year, if I hear from you. I am sad that most of my letters won't get to their destinations by Christmas day, but I met my goal of having them to the mailbox before the 25th. :)

I had a nightmare last night that I was in a really horrid car crash, that I had driven into the back of a semi truck, and that's what had caused all this damage. My loathing of photographs played a big part in the dream too. After I had cried all my fears and frustration out once again, and my husband assured me it had only been a bad dream, I lay awake thinking for quite a while. That's about what this feels like, as sudden and life-changing as a semi truck against a little car. I wonder how long I will continue having dreams of being able-bodied and feel it all suddenly jolted away? My counselor says (from several different thing I have shared with her) that I have post-traumatic stress. I just know that my mind loves to find creative ways to keep reliving the panic and desperation and loss. No fun. :(

This next week I will attend the largest family gathering I have been to since my strokes. I'm excited to see everyone but a little nervous too, especially with such fragile and unstable emotions.

Other big changes our coming to our family in a couple weeks, a total change in my daily routine. This will take some work to get used to, but we pray that it will turn out to be a good change in our schooling plans, in the end. The reasons mentioned in the other article are valid, but considering how much therapy and how many doctor's appointment we are still trying to juggle, the change in daily schedule will hopefully be helpful from this perspective as well. Not easy, but good I hope.

I can use the extra time (next fall) to focus more on writing, as I currently have three different manuscripts in progress. I had hoped to have one manuscript ready to submit to a publisher by the end of this year, but it is going to be 2013 at this point.

May God comfort you and make Himself so real to you, as we celebrate His birth this week, and throughout the year to come!

Rather than a Bible verse, today a quote:
"What if Christmas, he thought, doesn't come in a store. What if Christmas, perhaps, means a little bit more."
It's true, Mr. Grinch.
Christmas is a great celebration
Of the one who came to save all the nations.
The angels sang of Joy at His birth,
And wished for peace upon all of this earth.
May all of our hearts grow three sizes this day,
And pay forward His love as we go on our way.

Friday, December 21, 2012

End of the World

I took probably my hardest fall yet, about an hour ago. :( Nothing broken, but I'm fairly jarred and my confidence sure took a hard blow. I expect to have a few bruises from this one. I was trying to step over a short laundry pile and my foot came down on the linoleum, but must have caught the very edge of a piece of laundry, because I slid, both feet shot out from under me and I came down hard on my tail bone. Fortunately, I don't think my body twisted at all, so no weird muscle pulls that way. Also, when I sat down  so hard, I plopped right onto the padding of the laundry pile, so that padded what otherwise might have much more injuring. My right elbow feels rather raw (though it doesn't look skinned as far as I can tell) and my left side feels pretty jolted, so my shoulder, jaw, hip, and foot are all pretty grumpy right now, even my ear, just from the hard jolt, I guess. I'm praising God for His protection that we aren't fitting another ER trip into our morning!

Yesterday, I had a big day. I went to an hour of occupational therapy, immediately followed by an hour of physical therapy today. (Tuesday, I didn't think I would be able to go because my cold was still so bad, but thing started finally noticeably improving yesterday, so it just feel pretty much like a plain cold now.)

The PT gal, it is only my 3rd time seeing her, works me HARD. Sweet gal (actually mt sister-in-law's sister's best friend!) but did she ever take me seriously when I told her that even though I was out of the traditional recovery window, I didn't want to back off of progress now. She works me harder than any therapist I have had since I was discharged from the hospital (and I though some of them were pretty hard).

After those two therapies I had an hour break where Rick surprised me by meeting for a quick lunch (I was SWEATY and stinky after therapy), then I had an hour of counseling. It is always a good hour an very helpful, but emotionally draining too.

I came home, took a shower (there was a time when a shower on my own wasn't even doable, and usually it about takes all my energy for the day, so this was quite a feat to do in conjunction with such a big day!), then pulled the chicken Kathy had going for me back out of the oven, coated it in Italian dressing,and stck it back into the oven to crisp up.

Probably the most exciting thing that happened yesterday was that my hair is finally long enough to brush the front back and get it into a small barrette. I have only been able to even tuck it behind my ears for a month or so (if I had it trimmed up, I probably wouldn't be able to do that at all), but not all gathered back to clip yet.

What was even more thrilling is that I was able to put the clip in myself, holding the clump of hair with my left (!) hand, and snapping the clip closed with my right. It wasn't as smooth as I wanted, even after a few attempts, but even a week ago, I couldn't get my hair even presentable enough to go out in public, in this style, by myself! It was a disaster by the time physical therapy was over and I couldn't get it back fixed again (why I knew I had to take a shower), but it was an exciting start!

Our oldest son becomes a teenager tomorrow. Is that why they say the world is going to come to an end today? ;)
“No one knows about that day or hour, not even the angels in heaven, nor the Son, but only the Father. As it was in the days of Noah, so it will be at the coming of the Son of Man. For in the days before the flood, people were eating and drinking, marrying and giving in marriage, up to the day Noah entered the ark; and they knew nothing about what would happen until the flood came and took them all away. That is how it will be at the coming of the Son of Man. Two men will be in the field; one will be taken and the other left. Two women will be grinding with a hand mill; one will be taken and the other left. “Therefore keep watch, because you do not know on what day your Lord will come. But understand this: If the owner of the house had known at what time of night the thief was coming, he would have kept watch and would not have let his house be broken into. So you also must be ready, because the Son of Man will come at an hour when you do not expect him.
- Matthew 24:36-44

Tuesday, December 18, 2012

Coming up on 14 months of stroke recovery, this Christmas

Christmas Day will mark 14 months of survival since my first two strokes. I doubt I'll be able to post then, so an update a week early. Thank you to everyone who has stuck with me this long. I know in our microwave society, we are typically willing to invest in others, heartaches only if we can see quick resolution. Since I don't have the choice of "fix it quick" I guess I'm here for the long term. That anyone still cares, more than a year after the initial crisis, is a real testament to your faithfulness. Thank you!

I got the best night's sleep I have had in a week, last night. It felt SO GOOD to actually sleep again, only waking up once all night! My voice was stronger than yesterday, when I first woke up this morning, but it is pretty much gone again now. My drug study doctor called for her post-study interview and she could hardly hear or understand me at all. I got a call from a fellow patient that I've been trying to connect with again ever since the rehab hospital (he's close to my heart because he took such a grandfatherly interest in my kids when we were both in rehab, and called me "the kid" because I was one of the youngest there), but he left a message while I was at therapy a week ago and I have been too sick to even try to return his call yet. :( I figure it is OK that I am missing therapy these days, because my core muscles are getting a major workout from all the coughing I've been doing anyway! (Ouch! My rib muscles are so sore!)

Thinking back over this past year, I would have to say my eyes have been the most amazing part of recovery. In February (about 4 months post-stroke, and by then already somewhat improving from my hospital memories), the doctor said my double vision was "too bad" to even consider surgery until my eyes stabilized and corrected more. Surgery was presumed to be a sure thing, dependent on enough improvement to even attempt it. We were hoping to see enough improvement quickly enough to be able to schedule surgery for sometime in 2013. By June (just 4 months after that), my eyesight was already "too good" to even consider surgery!

In October of this year I tested at 20/20 vision (even better than pre-stroke, when I wore glasses!) and had only one degree on frontal double vision (it had been at 3 in June and 30 in February). I still have pretty dizzying peripheral vision (it had been around 60 degrees UN-synced, in February), but even that slowly continues to improve. I actually have briefly seen some single images when looking over my shoulder a few times lately. My left eye is still the weaker, tends to get "lazy" and travel when I'm tired (by the evenings or when I very first am trying to wake up), or stressed, but I am usually able to bring my vision back into alignment if I really try, something no amount of effort would accomplish earlier this year. Wow! Praise the Lord!

It isn't graceful, but the second most amazing gift has been relearning to walk this year. (My dream is that someday it will be graceful again, maybe even cane-free.) I was never "supposed" to walk at all again (said all doctors but one, who gave us a glimmer of hope that it might be a possibility, but would be at least a two-year process). I remember laying in bed, last fall, and being amazed (OK, and often a bit envious too) at the ease with which most people carried themselves on their own two legs. Now, it isn't with "ease," but I am one of those people again! Yes, I have worked VERY hard, but this is all God folks! No matter how hard I had tried, it wouldn't be possible unless He granted the ability.

Wait, I take those statements back. The three most amazing gifts have been a closer relationship with God (and all the wonder He continues to unfold and the forever altering, treasured glimpse behind the veil He allowed), seeing such mind-blowing gentleness and dedication blossoming from my husband (from a marriage that I really questioned for many months),  and having our kids living back home again. The two physical miracles have to be bumped down to 4th and 5th places.

There have been so many other blessing too, more than I can name! Thank you for the extra special investments made in my life this year by so many friends. Mom and Kathy, you both stand out in my mind, especially. (Happy birthday, Mom!)

I would say the biggest disappointment (well, other that wanting my whole me to be back to who I was before, especially emotional processing and all the crazy, ill-timed laughter and tears, though I am VERY thankful that the unwanted rage and yelling has pretty much dissipated and the rest is a little more manageable) has been my hearing. I am blessed to have semi-functional hearing at all. I, in no way, take this for granted. It is just sad to me, having always LOVED music, and previously having perfect pitch, that after two surgeries I still don't hear very well. With such miraculous healing in other areas, it mystifies me a bit as too why God hasn't done the same in my ears. I can only conclude that I serve Him better with hearing impairment now, but He has given me back both my eyes and feet (the two thing I first prayed for in the hospital) as unmerited grace.

Other areas that still are especially problematic are my left jaw and side of face (TMJ and trigeminal nerve), left side of my neck (not the side I stroked on (remember, even though the left side of my body is primarily impacted, that means the right side of my brain took the largest impact), but the issue that started this whole mess, for those of you that know more of my story), and left shoulder (that is slightly less painful over time, but I have pretty much resigned myself to the fact that it will likely always be weak and sore). Touching me, even gently, on pretty much any part of the left side of my body (especially, foot and arm), when I'm not expecting it, still makes me flinch in pain.  If my legs are up in the recliner and my kids brush past and touch my foot on the way, even when I am watching and expecting, it really, hurts.

The blood flow issue (purple foot) finally seems to be mostly resolving, as long as I keep putting weight consistently through that leg (good barometer to remind me when I'm not carrying my weight evenly or shifting in too much over my right leg). It hurts to cross my legs with the right over the left. When I'm sitting down, it is important to keep my legs elevated, not dangling down, so blood doesn't pool in my left foot.

I'm, thankfully, able to use my left arm fairly efficiently for some large motor tasks now. I lifted a pan of shepherd's pie (thanks Mom!) into a hot oven by myself last night and didn't break the dish or burn myself! (I had to have my son lift the hot pan back out of the oven.)

I still can't use my hand for fine motor tasks. I tried to label Christmas gifts with my husband last night (he did the writing, I was just going to tie them onto packages) and was in tears because it seemed like such a simple task, but I absolutely could not do it. I had no idea how much fine motor skill this easy little thing actually demands! My 9-year-old eventually took over my task.

I still type single-handedly, but am trying to force myself to practice a computer, piano learning game with both hands. I finally got through the very beginning, basic song (after at least a month, maybe closer to two)! My left hand registers about 1/4 strength or ability of my right, much better than when I could basically not coax any movement from it at all! It takes me about 20 or 30 minutes to peel an orange.

The left side of my mouth seems a little less numb except for along the left outer edge of my tongue. As the mouth numbness receeds abit, I am more aware of numbness  in my lips (on that left side).  The inside of my left cheek is still fairly numb too, but does register pain when I bite myself. The "burned" feeling primarily only toward the far left side and tip of my tongue.

Kendra, this picture is dedicated to you, my dear. I know this is such a long process. But you are working SO HARD. I am terribly proud of you, little sister. There are countless challenges every day, and yet you keep pushing through. There is no such thing as a small or silly victory!

Edited to add a comment I put in the cooment replies section, but I will want to find again in the future. It took a good 10 months  or more (I don't remember exactly how long, but I think that's a fair estimant) before I could trollerate wearing jeans after the strokes. I think it was just a textural thing. I tried to wear jeans for the first time in the rehab hospital and the texture was just too neurologically stimulating - I was in tears and crying, "Get them off!" within less than 5 minutes. Now, I am glad to say, I have one really soft pair I can wear. Yes, big victories in seemingly very small things!

Monday, December 17, 2012

Strength To Hold On

A song that pretty well captures exactly where I am right now:

Happy Birthdays *Cough-Choke!*

I've had to sleep upright in my chair a couple nights this week, because I couldn't breathe laying down. I woke up this morning (4am, never got back to sleep after that) to hardly any voice at all. Several times today I've tried to say things, and no sound comes out at all. I can usually squeak out a word or two by a second or third attempt, but often with a huge coughing fit between each word if I do manage to get any out.

I quack, and groan and croak and sound like a frog or a strangled duck, when I'm that fortunate to make sound at all! Makes me even MORE (I already have been, more than I can say) thankful that aphasia (loss of speech or even total language ability) was not a significant symptom of my strokes!!! I canceled speech therapy for today because I told my therapist (actually, my daughter had to call her) that there was no sense in doing therapy if I couldn't even speak "normally" to begin with! I also didn't make it to water therapy this morning and figure that's probably not going to happen again before Christmas, at this rate.

I'm just home from the doctor again. I was getting sick for Thanksgiving and ended up on antibiotics then. I had about a week healthy and have been sick again since the middle of last week. My doctor says my body is being an overachiever these days. Like last month, I first had a viral infection (in this case, a common cold) that created a "perfect storm" in setting me up for a nasty bacterial infection to brew. I now have antibiotics, probiotics, and in case I need it, Dyflucan. I hope to be feeling much better and past contagion by then (I sure hope!), but it sounds like I will be on antibiotics for Christmas too. :( At least this is better (hopefully, I guess that's somewhat yet to be seen) then last Christmas day when I threw up all over Rick! Happy holidays.

My mom's birthday is tomorrow, our son's is later this week, the kids are in a Christmas play at church on Sunday (I missed last year because of the hospital), and we plan to be with out-of-state family for Christmas. This set back was so not in my plans! We are postponing my mom's celebration and my new goal is to hope we are all healthy enough to enjoy our son's big day - becoming a teenager at the end of this week! I have three important therapy appointments between now and then that I would rather not miss either.

Back to the medical topic again, I think I forgot to ever tell you about our excitement several weeks back (before I got sick the first time). I was drinking a cup of warm tea and suddenly couldn't swallow, spewing tea all over myself and across the room. My daughter asked if I was OK and I felt fine, so went to answer, "Yes!" but suddenly realized I could speak, cough, breath or move any air at all, so ended up vigorously shaking my head, "No!" instead.

I continued to be unable to breath, due to my airway cramping (called a "broncho spasm," I've since learned), and couldn't talk, so I pushed my emergency call button because I was starting to feel like I would pass out and I was worried about leaving the kids in a crisis without any help on the way. We set off the panic alarm and all four us were doing pretty much exactly that, panicking. The good news to come from that is that I am now much more eager to wear my emergency necklace, something I had become a bit lax and reluctant in doing.

It seemed like 10 minutes or more before an operator came over the line to confirm we needed medical assistance and it wasn't a false alarm (if I had been unable to answer or if only my kids answered, she would have dispatched help immediately), but my son says it was only 90 seconds or so. By the time she came over the intercom, my airway had somewhat relaxed and I was breathing on my own. I still sounded about like I do today, very whispery and course, but I was able to get up close to the intercom and answer her questions well enough to cancel our EMT call.

This happened a second time (not the alarm, but the spasm part) a week or 10 days later, while I was eating warm soup. This time the spasm didn't last as long or scare me as much (because I knew now what was going on and that if I were to pass out, my throat muscles would stop clenching and that alone would allow me to breathe again). Because the soup was already in my throat when it stopped moving, it did burn me pretty badly though. I had a raw, blistery feeling for a week after that one!

I have stopped drinking/eating warm liquids and haven't had anymore scary events like this since. I did try a sip of warm tea once, a week or so after the second spasm, and had a real coughing fit, but never stopped breathing. I don't know that warm liquids are the trigger for me, but they are the only link that makes sense, and avoidance does seem to be decreasing my choking episodes. This seems to possibly be part of brain stem stroke recovery, in and of itself, maybe even an acceleration (due to the medical study drugs???) of what my body would have done anyway. No one is sure.

How I love a cozy cup of tea! I've really missed that, especially being sick so much for the past month! And of course, human nature being to want whatever we cannot have, I now have quite the soup craving, something I rarely was even particularly hungry for before I started avoiding warm liquids. Ice cold is about the only thing that seems to temporarily soothe my throat now. Seems to be the wrong time of year not to be able to enjoy warm drinks!

Psalm 23:4
Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

Friday, December 14, 2012

1 Year Home

I came home from the hospital a year ago today (I think, it might have been the 15th, but I really think it was the 14th). Looking back at all the changes and improvement this year, it is truly amazing. Thinking of where I was pre-stroke, where I would like to be again, I still have so very far to go! Kendra, praying for you as you mark 8 months tomorrow!

We are all sick again here. :( I'm so not a happy camper right now! Rick's bad enough he's stayed home from work, two days in a row. This almost never happens! I think the youngest two seem on the mend. The rest of us are pretty bad and I can really feel the bigger picture impact as I stumble around the house with poorer than normal balance or coordination. I'm praying everyone feels good for the kid's Christmas play at church (I had to watch from the hospital, via video last year, so I really want us all to be there in person this year!) and to enjoy time with out-of-town family for Christmas Eve and Christmas day!

Funny of the day (from Facebook). Made me laugh so hard because it totally captures what I feel!
I never quite understood verses like, 1 Peter 4:8, "Above all, love each other deeply, because love covers over a multitude of sins." I really appreciate the insight offered by this article, so I share it with you, but post it more so I can find again in the future.
If you are interested, Hannah's Hope is currently on reduced price on the NavPress website. I don't know for how long, but right now it is $8.99 rather than the $14.99 list price! https://www.navpress.com/product/9781576836545/Hannahs-Hope-Jennifer-Saake

P.S. I have posted a few resources for coping with news of today's school shooting on my Harvesting Hope from Heartache blog. 
But God chose [The Amplified Bible says, "selected" (deliberately chose)] the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. He chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, so that no one may boast before him.  It is because of him that you are in Christ Jesus, who has become for us wisdom from God—that is, our righteousness, holiness and redemption. Therefore, as it is written: “Let him who boasts boast in the Lord.” 1 Corinthians 1:28-31

Wednesday, December 12, 2012

This 'N' That

My friend, Sue and I, addressed 124 envelopes this week. If you count mistakes that required do-overs, probably many more than that! I would be nowhere near done with my list if it weren't for help. Thank you, Sue! We got it done! I think my handwriting was getting a bit better after all that practice! I guess I've written more number than letters, this past year, as they came easier.

I've also sorted 4 Rubbermaid big storage boxes worth of Christmas ornaments this week. Two are packed back up (with hand-made ornaments from my grandma, packed away since we aren't up to doing a tree this year), the contents of about one box is around our home (my son's train set, a few Nativity sets, some Christmas linens), and stockings have been found for Christmas morning. One box of less sentimenal items is being given away. I am so proud of myself to have willingly parted with 1/4 of the things I sorted.

Our 9-year-old daughter made gingerbread cookies this last week. I supervised and helped a little. Our 6-year-old was really into using cookie cutters. It wasn't like old times, but it did feel cozy. I found out my body just does not process wheat well at all. After three or four mall cookies, over a few days, I gained back 3 pounds just by adding that little bit of wheat! I guess good to find out before being tempted by holiday goodies.

All five of us are down with colds again. Our 9-year-old is really sick, her second day fully down in bed. :( Our 12-year-old is pretty sick too. Our 6-year-old feels just good enough to be a real hand full. It's hard because when I feel bad and really need help more than ever, we are contagious and need to turn all help away. (You understand, Kendra! At least it is not tummy flu at our house. You poor thing!) I guess if we are going to get sick, I would rather get it over with before Christmas. (Edited mid-morning to add, our 9-year-old just threw up. I managed to get her blanket in the wash by myself, and she got into the shower to wash the mess out of her hair, Fun times!) I had about one healthy week between viruses and infections. I'm hoping this round doesn't set my stroke recovery back so badly.

At this time last year I was still in the rehab hospital. I was starting to use a (specialty) walker under close supervision, but was in a wheel chair (or a hospital bed) any time I did not have direct supervision. I was taking meals in the regular dining room, on a regular diet, with milder swallowing issues and just a few food limitations. I still needed a lot of help, even with the basic like toileting, showering, or washing my hands. My vision was still so bad I could not read the big E on the top line of the chart. I'm so very glad to be home! I hope to never need to re-live the first year, especially the first six months, of stroke recovery again! Here are a couple of my stroke-related Christmas thoughts.

In water therapy, my instructor took away my floatation belt for most activity last week. It is MUCH more exhausting to work on staying upright without that safety support! I had no idea I relied on it so heavily. I'm glad the first day was only 45 minutes rather than an hour! It's a good thing, a step forward, but another reminder never to get comfortable where I am, but to keep striving forward! I still cannot be in water past my shoulders in depth, as I don't have enough strength to swim or to right myself if I slip under water. I've tried to drown myself, even with the belt on, a few times already.

I don't know if I will ever be able to trust my left arm or shoulder to hold me up so I can swim again? Generally, I love being in the pool now (I wasn't a huge fan of swimming before the strokes) and feel such freedom of movement. I totally dislike getting out of the pool and feeling gravity kick in so powerfully again.

Monday we had a different instructor than usual and she is a professional dancer (I've been told) so she didn't pace the class to my needs at all. I realized, part way through the class, that I was shifting most of my weight to my right foot in effort to stay balanced with her pace. My left foot was more purple (blood flow issue) by the end of class that any time in recent months. I guess walking has been the most important think to address blood pooling. Her I though purpleness meant to should keep my foot up more, but I guess it means I need to keep putting weight through that left leg consistently.

I don't know if it is the stormy weather, the exercise strain, the cold, or what, but my jaw (and my shoulder) are unusually painful and flared up the last few days. All I know to do if keep consistent on my stretches. Prayers appreciated.

Last week I was trying to reach over for my husband's hand in the night. I ended up poking him in the eye instead. Talk about inappropriate laughter! He came straight up, in pain, and I was in a fit of giggles. I felt terrible, but laughed so hard. :( My tears still come much too easily , and frequently when there is no call for tears, but seem to be calming down a little. When I cry, it is more "normal" crying down, not the body shaking sobs (usually) of before.

Sunday, December 9, 2012

Anatomy of a Brain

My participation in the stroke drug study is pretty much over. I went last Tuesday, anticipating to bring home my final week's worth of medication, but when my doctor coded me into the computer, it said I was finished with the medication phase. I go in this week, just to finish up a few things and say goodbye to the wonderful office staff, and I do an exit interview, but otherwise I am done. Maybe I will be invited to the final phase of the study as well, but if so, that won't be probably until later in 2013.

The big, unspoken decision I asked you to pray about a few weeks ago is still not to resolution, but looks like it should (hopefully) be finalized this week. Thank you for your ongoing prayers.

I think I've rather stunned most of you into silence since last week's post about my near-death experience, but thank you for your continued friendship, support and reading of this blog. I don't know how you are "supposed" to respond or react to the announcement. I don't even know what I am supposed to do to process all this! We are entering uncharted waters together.

If I know you in person (and have a current mailing address) you should be getting a Christmas letter from us soon. I still can't write well or quickly, so a friend from church is helping me address about 100 envelopes. For every two she addresses, I maybe get about one done, and mine look like they are written by a Kindergartener, but as long as I think the post office can likely make them out, I'm going with it. If you get a note (please be sure to send addresses if you want a letter and you have a new address within the last two years - jsaake AT yahoo DOT com) you will be able to tell at a glance if I addressed it myself or if Sue did (the difference between huge, childish scrawl  and neat, tiny, adult script). Even Sue seemed amazed at how nice my handwriting used to be (and how much it has changed) when she saw what I'm doing now, compared to the old writing in my address book. And that is with over a year's therapy to improve it! I'm told that in the hospital, I would get proud of writing efforts that were still illegible, at all, to anyone else.

I know I had 6 different strokes. I know the largest two were in the brain stem and cerebellum, while the smaller clot-caused strokes were farther up in the brain, in various lobes. I was beginning to think (from other's descriptions) that maybe the cerebellum was housed somewhere within the brain stem itself?

I had to look this up for myself and find the two distinct structures that were severally damaged and give me so much grief. Initially, it was the cerebellum damage that doctors seemed to focus on so much (specific kinds and complications of balance issue, reflexes, and more), saying I had "cerebellar disease" as a result of the stroke damage. At about 6 or 7 months, they started speaking with much greater emphasis (or at least I was more aware of the concerns and comments) concerning my brain stem, thus leading me to the confusion on anatomy.

I guess both stokes were (in my surgeon's words) "quite significant" and damaging in their own rights. For anyone else who wishes to gain a clearer understanding, here is a sketch of a health brain, thanks to Wikipedia.

Psalm 73:26
My flesh and my heart
may fail, but God is the strength of my heart and my portion forever.

Monday, December 3, 2012


I mentioned on Nov. 16 that I had shared the most important facet of my stroke journey on another blog. I was trying to take the easy way out and not have the work of double posting, but since this is the very most important part of my story, it needs to be recorded here as well. If you read no other post I write, please take time to read (and share) this one!

If you want to know what else I've been up to lately, I've recapped it all (many stroke-related thoughts) here.

From my prior post (condensed version):

Today I am thinking of the glory of sunrise, pale in comparison with the mental picture I'm about to describe, but the closest to what a camera can actually capture, of anything I can describe. My daughter asked me the other day about my favorite time of day, and I would have to say usually it is early morning now (a total reversal of the time of day I most dreaded, early in stroke recovery).

I have rarely shared the following story with anyone, for I know once my thought are "out there," there will be no way to take them back, reel them in and make them mine alone again. As I told my pastor, I have been quite shy about all this for the past year. Today, I share with you, not in sensationalism, but in wonder and humility:

When I had my first two, most serious strokes, I could not move, speak, hear, open my eyes, or in any way communicate with the world around me. I knew I was in bad shape, had heard the beginning of the 911 call being placed before I lapsed into unconsciousness, and we have pieced together that the following experience must have taken place just after I was loaded into the ambulance, when EMTs were trying to get any response from me but I could not hear them and was unable to respond at all.  My body was significantly posturing, I was not expected to make it to the hospital alive, and my situation was terribly fragile and precarious.

I, very vividly, consciously and lucidly, remember "waking up" and thinking through my senses one by one, looking for any response from my body or clue to what was happening to me. I could not feel, move, speak, see or hear anything. In fact, I had no sensation of being connected to my body in any way.

One of the first coherent thoughts, that I would have shouted out as a statement if I could was, "Don't pull the plug! I'm still here." Before even one wave of panic could overtake me, I was filled with such profound peace! I heard music (remember, I was totally deaf, and remained so to anything happening around me) unlike anything I had ever heard before - so beautiful! And while every other memory from the next several weeks remains vague and shadowy, most have slipped away all together, this one is crystal clear and bathed in golden light.

I have always before wondered about and somewhat feared death, but after this near-death experience, I felt cheated and angry that I had survived and was suicidal for about 6 months
(I just wanted to hurry up and get to Heaven, now that I had a foretaste) until my husband challenged me that if God wasn't finished with His plan for my life here on earth yet, neither should I be. I still feel great excitement and eagerness for Eternity, but I am much more willing to bide my time here on earth now.

After being challenged to find and fulfill God's purpose for my days on earth, it became evident to me that as wonderful as Heaven is that Hell must be just as awesome in terror. I promised God that I would spend the days assigned to me to help anyone who would listen to avoid such fate, for I cannot even imagine the horror.

So with that background in mind (I know how like a lunatic my experience must sound), you can see why I'm passionate about my views.

I believe that there is only one God, Jesus Christ. That to believe Him, I must abide by what He says, namely that He alone is God and there is no other, that He is the only way to the Father and that many paths are inviting, but only one leads to eternal life.

I believe that we are all born as sinners, separated from God, and the only remedy to clear us of our guilt, is acceptance of the death and resurrection of Jesus, the only sinless man ever to live.

It is not through doing enough (or any) right or good things, but by simple
faith that God is who He says He is and did what He said He did. It isn't just about believing the facts, but taking them to heart. If I tell you a chair can hold my weight, I can tell you that all day, but it really means nothing until I exercise that belief by taking my body and actually sitting in that chair to show us both that I believe what I say, that I am willing to act upon what I say is true. It is like that with God too. I can say He exists and maybe even say I'm willing to see the work of His hand in my life, but until the "good works" I do are because of my love for Him, an expression of my adoration and acknowledgement of all He has already given for me, not in effort to earn forgiveness or grace, they mean nothing. As Scripture says, such works are as useless as filthy rags!

Picture via Pintrest.
Don't worry, I'm not likely to try and cram these beliefs down anyone's throat, but it is clear exactly where I stand now. I wish you all peace (the intense kind, like I found in that ambulance) as you explore these issues for yourselves. Feel free to leave a comment or email me - jsaake AT yaohoo DOT com - if you want to talk more specifics. I am not an expert and don't pretend to have all the answers, but I'm happy to share what I am convinced about and explore questions to keep on learning! 

Here are a few videos I posted, mostly songs related to my thoughts surrounding this post. And the original post about my experience in its entirety, if you want a little more background.
By faith he made his home in the promised land like a stranger in a foreign country; he lived in tents, as did Isaac and Jacob, who were heirs with him of the same promise. For he was looking forward to the city with foundations, whose architect and builder is God. - Hebrews 11:9-10

Jennifer Saake's books and related blogs (and sometimes Facebook pages too):

First Published Book: Hannah's Hope : Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss or on Facebook at https://www.facebook.com/HannahsHopeBook

Book-in-progress on drawing on the fruit of the Spirit in times of trial: Harvesting Hope from Heartache or on Facebook https://www.facebook.com/HarvestingHope

Next book-in-progress: 6 strokes at age 39, Stroke of Grace or look on Facebook under "Stroke of Grace by Jennifer Saake"

Future manuscript in the plans: Given Me a Thorn, the apostle Paul's story as applicable to living with chronic illness, or on Facebook at https://www.facebook.com/GivenMeaThorn
You are also welcome to join me on my other blogs at InfertilityMom (general life and motherhood after infertility and pregnancy/adoption loss) Inner Beauty Girlz (healthy, usually natural, affordable, beauty tips for body and soul) and the accompanying Facebook page at https://www.facebook.com/innerbeautygirlz.

Tuesday, November 27, 2012


I got lost in Target today. More specifically, Mom and I got separated. I was panicky for a moment, then calmed down, prayed and picked up my cell phone. It wouldn't dial my mom's cell number for some reason, so I called my dad at home (that worked by the second try) and had him call my mom and tell her where to find me. About that the time I hung up, a voice came over the loud speaker, paging me to meet my mother at the snack bar. I knew how to get there, so we found each other. But I realized that is the first time I have been unchaperoned (away from our house) since the strokes. And yes, Kendra, the dizziness REALLY kicked up when I felt the stress of realizing I was lost! I seriously thought about going up to an employee and telling them, "Help. I lost my Mommy," but wouldn't have begun to know how to explain that one beyond the first statement! LOL Do you know any other 40-year-olds who get paged to meet their Mommies in stores? It was quite an adventure. We left the store in a fit of giggles and neither of us even made a purchase. 

I do have an infection impacting lungs and sinuses (she didn't specify what kind) so I started antibiotics yesterday. Praising the Lord that it doesn't look like an antibiotic-resistant strain this time! Overall, I've been up and going (today was a busy doctor appointment day, with the Target trip between two appointments), though it took longer than usual to get going this morning. Kendra's therapist told her that even a slight cold can put a stroke patient back in recovery by 8(? - how many, Kendra) weeks.

My test study results were dismal this week. I have regressed significantly over the past week. This may be, in part, attributed to not feeling my best because of the infection, or it could be that I had taken the real drug for the first three weeks straight and (my speculation) started the placebo a week ago, or both of these issues combined.

I asked my doctor if my previous speculation (about possibly being the only brain stem stroke patient in the study) could hold any validity? She informed me that I am one of at least 4 brain stem participating that she is aware of, but that it could easily be that I have been on the real drug while the others may have started their first three weeks just on the placebo and they haven't gotten to the real drug yet. Since I am the first study participant at our location, I am a few weeks ahead of most other participants, so this is quite possible, mathematically. We shall see (though not until the study is finalized). She did agree that a brain stem stoke would likely be much different in reaction from other forms of stroke.

My mom is waiting to see a second (and possibly third, depending on what is decided at her next appointment) doctor, concerning her knee, this week. We may be looking at a knee replacement surgery in the near future (the other was replaced a few years back). Please be in prayer for wisdom for the doctors and peace for Betty (who has a huge, swollen knee that, at very least, will probably need fluid drained this week). Mom does almost all my laundry and driving still. And it is my Mommy we are talking about here! Thank you for the prayers!

Rick came home from work, sick tonight. He is hoping to sleep it off tonight and be better by morning. I'm not as optimistic, having watched each family member fall to this bug, one by one. Prayers for him too, would be greatly appreciated!

A friend sent me a card with the following poem:
Angel of God,
my guardian dear,
to whom his love
commits me here;
Ever this day
be at my side,
To light and guard,
to rule and guide.
I don't subscribe to today's popular "angel theology" that can run so rampant, but I did love this verse because it points out that God commits me here out of love. (If you don't know why this idea is so profound to me, read What The Camera Can't Capture.)

I still struggle with this thought often, and today it clicked a little more of why I struggle. Actually, it started to form as a gelatinous thought at church, a week ago. We were singing, "Cast me not away from your presence, Oh Lord, and take not your Holy Spirit from me..." and I started to cry. I am thankful that I have the New Testament assurance of salvation, that God promises to never leave me or forsake me, that I have no need to plead for God to not take His Holy Spirit from me! Tears of overwhelming thanksgiving on that count!

On the other hand, I have likened sunrises to a dim glimmer of Heaven. This morning, I watch a glorious sunrise. I watched just a sliver of it, mentioned it to Rick, and he opened the blinds all the way so I could see it more fully. With the pull of the cord, he quickly plunged the room back into darkness, to finish getting ready for the day. 

That's when the thought solidified for me, that for the past 13 months I have been wrestling with the Lord about being "cast away" from His presence. Like the sudden shift from the beauty of sunrise to the depth of darkness in our bedroom, I have grieved the unheralded shift from Glory and grace to earth's dullness and pain. I think the jolted realities are best described as culture shock!

As I waited and my eyes adjusted, our room wasn't nearly as black as it had first seemed. In fact it was filled with early dawn light and I could watch my husband's preparations for the day pretty clearly. It had only seemed so black because of the sudden contrast from such brilliance to lower light.

Sticking with the sunrise theme, it occurred to me that the prettiest sunrises are the ones with clouds. A cloudless sky is often described as "best," but when there are no clouds, there is no brilliant shifting of color, nothing to reflect the sun's rays. When there are too many clouds, the light from the sun isn't evident for a while, but the sun is still just as much there, just veiled for a while, but still just as certain! I believe it is the same with the Son - that the absence of trials prevents His Light from being magnified, but He remains a constant even when troubles strive to overshadow His goodness. 

I'm going to keep playing with these ideas. You will likely see further evolution of these thoughts in my stroke book. While only a poor reflection, I am making an intentional effort to find beauty now, for the same God who authored Grace, molded these mountain and painted these sunrises, for my enjoyment. Rather than focusing on lack, I want to transition into the "restore unto me the joy" phase now, thanking God for the gifts He has given.
My counsel for you is simple and straightforward: Just go ahead with what you’ve been given. You received Christ Jesus, the Master; now live him. You’re deeply rooted in him. You’re well constructed upon him. You know your way around the faith. Now do what you’ve been taught. School’s out; quit studying the subject and start living it! And let your living spill over into thanksgiving. Col 2:6-7 The Message

Sunday, November 25, 2012

13 months

I have a cold. Not a big deal, right?

Since I had private rooms most of my two months of hospital stays, thanks to an antibiotic-resistant infection that still wasn't clear (according to my medical records) 6 months ago when I went back to the hospital for one of my surgeries, and I'm already having issues with my throat (breathing, swallowing) under every day circumstances, I feel entitled to whine over this current concern a bit.

If I don't wake up feeling ready to return to water therapy in the morning (it's been 2 weeks since I've gone, because all three kids past around the cold virus part, then my mom got it and it went bacterial on her, so she is on antibiotics), I'm calling the doctor. As my stroke friends and I are discovering, there is rarely anything "simple" in stroke recovery. Even if it is just a "normal" cold, it could potentially become very dangerous and/or take a much longer time to recover from, for me.

So, in case you don't hear from me a bit, that is what is going on here.

I think I had another reason for deciding I should post tonight, but I have no idea what I was going to tell you now. I guess one good thing is, for the first time since the stroke, I made it through most of the day before I even realized this date was another "anniversary!"

Racking my brain, the only other fleeting observation that might be interesting enough to post is that I still read slower than my 6 year old can (though reading speed has slowly improved a bit) but my short term memory seems to be improving a bit too. Until recently, I could remember most longer-term things (like childhood or Rick's and my dating days or early years of marriage), but not a conversation I had a week ago. A while (couple months maybe? - whenever I started seeing my counselor) ago, I realized that I was finally able to recall things as recently as three days back.

Last night, I could recall a portion of a conversation from 5 minutes earlier, but still not the things just said, or when I'm counting off therapy exercises, I count 8, 9, then in the span of time I've counted 9 numbers, I can't remember which ten-count I'm in, so I don't know if I should count "30," "40," or "70" when I get to the end of that 10-count. I figure the advantage of this is that I always default to the lowest count I think I may possibly be, so I probably end up doing an extra 10, 20, 30 or more repetitions of exercise this way. :) That may just about evens out for the times I might unintentionally skip 10 or more repetitions in a block.

I'm still blogging daily (so far, even while I'm sick) over at InfertilityMom. While there are some bits about infertility, loss, and chronic illness, much has been about the strokes. I am surprising even myself with the memories and details I have been posting over there, this month! Here's today's post.

And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him. Colossians 3:17

Thursday, November 22, 2012

Jumping for Joy

I jumped for the first time in over a YEAR, yesterday at therapy. Granted, I could only jump an inch or two off the ground, only straight up (not sideways), and I had to hold onto a ledge (counter, sideboard, windowsill, etc.). I was able to do it a few times in a row at therapy, then a few more jumps, one at a time, to show family members throughout the day! This may sound silly, but it left me giddy, in a way even more exciting than learning to walk again, I think because although it is something I had missed being able to do, I hadn't obsessed over the lack or striven for it like I did with the ability to walk again. That I was able to do it (something I did not imagine would ever really happen again) without all the anticipation, took me by happy surprise. This new-found skill is what I'm ever-so-thankful for today.

I have been fighting a sore throat for about 12 days now. Originally it was from burning my throat (I had a couple of life-threatening broncho-spasms a few weeks ago, where my airway totally constricted and I couldn't breath at all, swallow, speak or move any air) when I had warm soup caught in my throat and couldn't do anything to move it. Finally, last Thursday and Friday I had about a day and a half with no sore throat, then I've been trying to fight off a cold since then. Yesterday, I finally gave up the phrase "trying to fight," when I woke up with little voice, and had to admit that I do have the cold now. I'm really praying this doesn't mess my ear up again, sine the eustation tube still can't equalize pressure well.

Yesterday came with a rude awakening in more ways than one. I'd either switched from the real meds to the placebo for my 8:30PM dose on Tuesday night, or from the placebo to the real medication. I woke up about midnight and was stunned to discover that my legs would hardly support me to walk again! I used the cane (even in my own home) to get around yesterday morning, but by about mid morning and an hour of focused therapy, I was getting around fairly well again. My speculation is that I have just made the switch to placebo and that the alternative pathways my brain has been building this past year just took a few hours to kick back in after the medication has been working so hard to bring the primary pathways back on line over the last several weeks. Of course, that is just my patient guess, not known medical reality in any way, but that's my current take on what's happening within my own body.

I also successfully took a bath tonight. We didn't make the water too warm, we set the timer for 15 minutes, and Rick helped me in and out, so we avoided most of the problems from last time. I'm thrilled we found a more workable solution. It still wasn't as enjoyable as pre-stroke, but it was better than a month ago!

Other than being very tired and drained today (this cold seems to put even the healthiest of people down hard in bed for a day or more), it has been a surprisingly tear-free day, for which I am also thankful. I focused a lot on unhappy memories from last Thanksgiving when I first woke up this morning, and felt rather melancholy at odd times throughout the day, but overall it has been a better day than I expected. Praise God!

I think there will be other big changes coming to our household in the near future. I hope to announce once everything is finalized in another week or two. This change brings both surprising relief intermixed with a measure of huge disappointment, but I think will be for good in the end, though it will be a massive change to our lives! Even the consideration of possibilities leaves me both excited and sad/nervous. I know I'm not giving much detail, but please pray for Rick and I to have wisdom in this very huge decision.

My parents came over today with homemade pies, stuck a turkey and several sides in our oven. Rick mashed potatoes and we had a lovely mid-afternoon dinner. I'm so very thankful for family!

My goal this year is to find reasons for thankfulness and my prayer is for the Lord to more fully restore joy in my heart again. It has been a long year, but God remains faithful. This last week, I feel as if I'm starting to emerge from a long, dark tunnel in a new way. I told my therapist, I now feel like I'm at about 70% acceptance to 30% frustration. That's much higher on the frustration side than a want to be, but a far cry from where I was even still a couple months ago. God is good.
Since, then, you have been raised with Christ, set your hearts on things above, where Christ is. For you died, and your life is now hidden with Christ in God. Col 3:1

Friday, November 16, 2012

Bearing My Heart

I just posted a story on my InfertilityMom blog that I consider to be the most profound, soul-bearing, some might consider TMI post, I have ever shared online. It really belongs in this stroke journal, but since I just posted it elsewhere, I would love if you go there to read it (because I'm trying to take the easy way out and link instead of copying and re-posting here. Something I plan to still do later unless hit count indicates that it has been well read by my stroke readers). I would say this is the very most critical and pivotal part of my stroke story!

While I am revealing such intimate details, here are a collection of nearly all the pictures this camera-shy gal has allowed to be taken over the past year. These take a ton of guts to post, because I have so hated seeing what the camera (or mirror) tells me about my body changes this past year.

I did have one exciting, new-to-me revelation that a friend (also with severe brain damage) shared with me this week, concerning our loud and uncontrollable tendency toward laughter. Now I will try to think of this tendency (that I have hitherto been embarrassed about) as the spilling over the joy of the Lord. :)

It was the right side of my brain (linked to left side of my body) that was primarily affected by my strokes. I don't *think* I still have many of these issues (at least not too profoundly anymore), but then again, it says I wouldn't probably realize if I did, so who knows? This week, The Stroke Network posted the following helpful information:  

What is right hemisphere brain damage?

Right hemisphere brain damage is damage to the right side of the brain. The brain is made up of two sides, or hemispheres. Each hemisphere is responsible for different body functions and skills. In most people, the left side of the brain contains the person's language centers. The right side controls cognitive functioning (thinking skills).

Damage to the right hemisphere of the brain leads to cognitive-communication problems, such as impaired memory, attention problems and poor reasoning. In many cases, the person with right brain damage is not aware of the problems that he or she is experiencing (anosognosia).

What are some signs or symptoms of right hemisphere brain damage?

Cognitive-communication problems that can occur from right hemisphere damage include difficulty with the following:


left-side neglect




problem solving


social communication (Pragmatics)

Attention: difficulty concentrating on a task and paying attention for more than a few minutes at a time. Doing more than one thing at a time may be difficult or impossible.

Left-side neglect: a form of attention deficit. Essentially, the individual no longer acknowledges the left side of his/her body or space. These individuals will not brush the left side of their hair, for example, or eat food on the left side of their plate, as they do not see them or look for them. Reading is also affected as the individual does not read the words on the left side of the page, starting only from the middle.

Memory: problems remembering information, such as street names or important dates, and learning new information easily.

Orientation: difficulty recalling the date, time, or place. The individual may also be disoriented to self, meaning that he/she cannot correctly recall personal information, such as birth date, age, or family names.

Organization: trouble telling a story in order,giving directions, or maintaining a topic during conversations.

Problem solving: difficulty responding appropriately to common events, such as a car breakdown or overflowing sink. Leaving the individual unsupervised may be dangerous in such cases, as he or she could cause injury to himself or herself, or others.

Reasoning: difficulty interpreting abstract language, such as metaphors, or responding to humor appropriately.

Social communication (pragmatics): problems understanding nonverbal cues and following the rules of communication (e.g., saying inappropriate things, not using facial expressions, talking at the wrong time).

What treatment is available for individuals with right hemisphere brain damage?

A person with right hemisphere brain damage should see a speech-language pathologist (SLP), a professional trained to work with people with communication disorders, in addition to his or her doctor.

The SLP will work with the person and develop a treatment plan designed to improve his or her cognitive-communication abilities.

How can I communicate more effectively with a person with right hemisphere brain damage?

Ask questions and use reminders to keep the individual on topic

Avoid sarcasm, metaphors, etc., when speaking to the individual

Provide a consistent routine every day

Break down instructions to small steps and repeat directions as needed

Decrease distractions when communicating

Provide appropriate supervision to ensure the person's safety

Stand to the person's right side and place objects to the person's right if he or she is experiencing left-side neglect

Use calendars, clocks, and notepads to remind the person of important information

P.S. I reported on Kendra's story yesterday. If you haven't had a chance to read it yet, it is highly (emotionally) entwined with my own, so you really will want to take a few minutes to read!
Psalm 19:8
The precepts of the LORD are right, giving joy to the heart. The commands of the LORD are radiant, giving light to the eyes.