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!)

Wednesday, August 28, 2013

All In My Head

Picture From Facebook
There was a lot I didn't know about strokes until living this reality. The little I thought I knew was mostly mistaken.

FAST Signs of possible Stroke. Act fast! - From Pinterest
I guess this can be said of almost anything we don't have direct knowledge or experience. I know it was true of me for infertility, for miscarriage, for ME/CFS.

Even though I offer support to women facing stillbirth or infant death or other kinds of chronic illnesses, I may know more than average about these conditions because I immerse myself in these worlds, but I will be the first to tell you that my experiences (and by extension, level of comfort and understanding) are, at best, only second-hand. I have never lived it. I just cannot actually know!


About strokes, I believed the myth that they only happened to "old people." This just simply isn't true. Sure, I had heard of a few cases of infant strokes, but typically for micro-preemies, infants born so terribly early that they were not prepared for life outside the womb, thus had brain bleeds. But I've since learned that even healthy, full-term babies can stroke, both in and outside of the womb. Children can have strokes. Teens can suffer from strokes. Young adults, in their 20s and 30s. Middle agers in their 40s and 50s.

I honestly never gave much thought to strokes, one way or the other. I would hear of someone in their 80s or 90s, who died from a stroke, but I just thought of it as another cause for elder deaths. I would hear of someone in their 60s or 70s who was hospitalized from a stroke, then either seemed to me to soon be better and back to life or maybe in a wheel chair and non-verbal after that. Again, something I never really even thought about trying to really understand. Strokes simply happened, but they weren't part of my world.


I feel like I need to preface the rest of this post by clarifying, once again, that I am not a medical professional and have no medical training, whatsoever. This information is based upon personal patient research and represents only what I understand of these facts, to the best of my ability.


There are two primary kinds of strokes, both Ischemic stroke (about 80% of strokes, often caused by a blood clot or plaque blocking flow to an area of the brain) and Hemorrhagic stroke (usually cased by a weakness or budge in the artery leading to, or even within vessels of the brain itself, in my case, caused by a tear in the artery). Stroke is stroke, so it really doesn't matter so much what kind a person had. It is lack of oxygen to that part of the brain, however it happens. For what it is worth, Ischemic stroke is the stroke caused by lack of blood flow (suffocation) to part of the brain tissues while hemorrhage stroke is stroke caused by excessive bleeding in the brain. To the best of my understanding, I initially had two massive Hemorrhagic brain bleeds when my artery was shredded, followed by four (relatively) smaller Ischemic strokes as my artery tried to heal over those next few weeks and kept throwing clots (blocking blood flow to different lobes of my brain) until two surgical interventions (similar to the picture in the link, but using a heart sent basically to sew the artery back together, so not this picture really, but it was the closest illustration I could find) repaired the artery enough to no longer throw new clots.

Several years before my stroke, I met Kate online, though small business networking. I read her book and thought her story was amazing, simply because her circumstances with stroke as a young mom seemed so unheard of (to me, anyway). 

Later I met my friend Becky, who came to my church for a few years before moving cross country. If she told me she was a stroke survivor, the reality never penetrated to my heart until she told me about her life-saving surgery that went arey once again, after my own strokes. I thought all her deficits were the result of a car accident that caused traumatic brain injury (and they ultimately were, I just didn't understand that stroke was part of the overall picture). All the years I knew her in person, I didn't realize that the accident had precipitated a stroke as well.

Then several months before my strokes, the blogging community was abuzz with news about Joanne, The Simple Wife,  and her stroke. I read, I prayed, I felt sad, then I probably never thought much of her circumstances again. I didn't know her, it wasn't happening to me, and I had no idea that her life, as she had always known it, was forever changed! I figured her family would go through a few rough weeks, maybe months, and then life would move on, this season behind.

But as October rolled into November, that fall of 2011, and I became more alert and aware of my own circumstances, the realities of all these brave, strong women, and their families, slowly began to clarify for me. (Brave too are Kendra and Katherine and Denise and Ruth and Jenny and Art and The Stroke Coffee House gang and so many other amazing folks I have met through this process. I don't want you to think I'm leaving you out, I simply was reflecting on my own, limited, pre-stoke exposure to the stroke world!) Even so, I had yet to fully begin to grasp what stroke actually meant for the long term. As I told my husband just a few months ago, when I heard of someone being in a car accident or even something like that which I could pretty reasonably relate to, I always thought life returned to "normal" within weeks or months.


It never even crossed my mind, except perhaps in severe burns or paraplegia or something like that, that the weekly appointments and therapies and daily challenges of living would still be so demanding even years down the line! So if I never understood that in situations I knew, like accidents, even where people had to relearn to walk or were forever confined to wheels thereafter, it certainly never occurred to me in lesser known (to me) trials, like strokes!
OK, so that's my take on the physical reality, but what of the invisible changes in our worlds, those that you likely don't see (at all, or at least not nearly on the level of our behind-closed-doors realities)? Sure the limps or wheelchairs or slurred voices or crippled arms or facial droops or other telltale signs are often pretty obvious, but I bet nearly any survivor reading this page would agree that those are not our biggest injuries. There are the emotional and spiritual, likely the two biggest area that are forever changed and where so much healing needs to come. But I'm specifically talking brain injury now.

For many (most?) who experience brain injury from serious strokes, I think their damage would be classified under the heading of ABI or acquired brain injury, as it is often the result of a slow process that builds to the point of crisis. If I understand correctly (please correct me if I am wrong!) the cause of the bleed or clot develops over time, such as plaque build up in the arteries, birth defects (often of the heart that aren't realized for decades, or even of the cells or structure within the brain itself), a slowly progressive illness, medications, or other related circumstances where a stroke is eventually "acquired."
For a few of us, like my friend Becky in her car accident, several strokie friends who were victims of violent assaults, or my own case, there was sudden, physical trauma that brought about brain injury, thus classifying our strokes as TBI or traumatic brain injury.

It really doesn't matter how you classify it (and stroke is something I never thought to classify as "brain injury" at all, but unless you are talking some cases of only very "transient" symptoms and only temporary brain bruising, a stroke is, by definition, brain cell death of area deprived of oxygen), but either the result of trauma or an acquired condition, a stroke is still brain injury! Different causes, same end result! We are working to rewire around deaded parts of the brain, but baring a direct healing from God or the development of new kinds of medication (as is the hope for the drug study I participated in last fall), there is currently no way to actually rebuild or recover the areas of the brain that have been lost.

Web search

So I mentioned that my strokes are the result of TBI. This is absolutely true for the first two strokes, that happened at the moment of injury. The case can be made that the next four were also TBI, in the sense that the were ultimately still a result of the original trauma. But because they unfolded over the next few weeks and actually came about from the original injury throwing clots as it was attempting to, but unable to heal itself without two surgeries, I wonder if that doesn't make the later four all ABI then? Still I can be absolutely truthful in saying I have at least six distinct clusters of dead brain cells, all ultimately resulting from a traumatic injury. How you want to technically divide them up is up for debate, but the bottom line is that it is all brain injury.


I want to come back to this post and edit in information on right/left brain stroke impacts and on various areas of the brain and their function, but I've been working on this, off and on, all day and I need to go to bed now!

Edited on Sept 2, 2013 to add, I thought I had already added the additional information on brain function last week, but somehow I didn't manage to get the new information here, but just pulled this down off my website back into my drafts for the weekend instead, so I'll try again...

I had research and written out all kinds of additional information and research illustrations and was going to add a ton of new material here. Then I found it all explained more concisely in this eight minute video, so if you truly want to take the time to understand mechanism of different kinds of strokes, this video does a much better job than I was doing!

 I had already been giving this topic (left/right) a ton of though before Kendra shared some unique frustrations of a left hemisphere stroke.
(Picture from web search.)

Additional editing, Sept. 12, 2013:
So I thought I should share a little more about brain function here. You can type in the names of any of these regions of the brain structure map pictured here into a search engine and find much more detail, but I thought it might help to know a little bit more about where I stroked and some of the effects (as well as the surprisingly not-so-impacted areas).
My biggest two strokes we in my Brain Stem and Cerebellum. The brainstem is responsible for basic reflex and life support. I was on a feeding tube, had a machine breathing for me, spent weeks with a urinary caterer (and many, many more months relearning full bowl and bladder control, something that I have mostly mastered now, but still not 100% even yet) and needed similar assistance in other every day life functions.
The Cerebellum, also called the "Little Brain" or the "Brain's Brain," is similarly critical for basic function. It is the part of the brain that, when a person becomes so inebriated you might describe them as "falling-down-drunk," that this is what is actually responsible for their lack of physical control due to temporary brain impairment. Many things like speech clarity (slurring), balance, reflexive  reactions, short term memory and more are housed here.
The vast majority of my damage was to the right side of my brain (impact left side of my body), though there was some damage, I believe from the two bleeds, that also suffocated some cells on the left side of my brain. While most people can reference their "stroked side" and "good side" of their bodies, and I often think like this as well because one side is SO MUCH more severely injured than the other, truly, I don't have a "good side," only a "more severely" and "less severely" stroked sides.
After my first two strokes, several friends commented on how well I was talking. Yes, my words were slurred and I occasionally struggled to recall certain words, but overall, my speech was not heavily impaired. Doctors had explained this to me in that many strokes (the ones we as a society are more familure with in general), tend to happen nearer to surface of the brain. As mine were mostly so very deep within my brain, there was little impact on my speech or language ability. I have some language processing issues, but the speech centers were, thankfully, relatively unscathed. I talked about my zebra-type-strokes a bit last year.
My last four, clot-induced, "smaller" strokes were all in "various lobes" (the most specific description a doctor ever gave me). I do know that I lost much more use of my left hand (I feel this was the cause of most of my left arm pain and loss of function and my shoulder troubles, though my mom tells me I had already lost a significant amount of left arm function with the initial strokes - I just know I could grasp and tear  toilet paper with my left hand before the final three strokes and this was my first sign that morning that something significantly wrong had occurred overnight) with my final three strokes (all happened overnight the same night) and my hearing loss, that I believe likely stemmed from one of the first two strokes, but perhaps was made worse with the additional damage, was finally tested and definitively confirmed after the final three strokes as well.

My vision blurriness, vision doubling and profoundly paralyzed eye were all results of one of the first two strokes. The inability to walk (that I started regaining during my weeks of rehab, maybe taking my first tottering and assisted step around 5 or 6 weeks, and was doing mostly without the walker (just a cane) at about 10 months) we lost with the very first two strokes. 
All the jaw and face pain may have come from my third stroke, my first clot. This still seems to be tied into my hearing loss, so possibly this happened at the same original injury, though I am told I failed my very first hearing test a few weeks earlier, up in ICU (I had no memory of having had any prior tests). It is possible the A-TN and TMJ pain were already there from the first two as I do not have a real clear recollection of timeline and only remember what room I was in when I first became aware of this pain. It is the room where I experienced my third stroke, but also the same room where I really started to grasp and process the concerns and realities of my first two strokes, so it is hard to say if this was already an issue I became aware of prior to the third stroke or was a direct result of it.

Something that has been most pleasantly surprising for me is that I have very little facial paralysis. In fact, I notice it when I study my face, but looking at me, you might not even be able to tell! I guess the only things that account for this are God's plan and the very specific areas of my brain that were (and were not) wiped out. That a stroke always causes facial drooping was another misconception I had about strokes. I guess this is why there are three different areas that must ALL be evaluated when trying to decide if you should call 911 for a person, if both sides of their face remain totally even, if they can equally lift and hold both arms outstretched at chest level, and if they are processing language well and can clearly repeat words and phrases you give them without slurring, hesitation, difficulty, or confusion.
One thing I have learned a lot about over these past couple years is "plasticity" of the brain, or the brain's ability to work on remolding and rewiring itself, to heal and retrain and learn new things. They tell me that the younger you are, the more quickly and thoroughly this can happen. One example is this little girl who had half of her brain surgically removed and is doing amazingly well now! Another is this guy who lost much everyday understanding but gained artistic genius - I  totally relate to the description that "he can't not be making art," although for me it is writing, as my mom has actually described me the same way, that "she can't not write" long before we ever encounter this story. I love his description about how engaging in his passion/compulsion feel as if he is transcending time and reality as I have also described my writing world this way! 
The older you get, the last "plastic" your brain becomes. The recovery journey is one of the few times it is a significant plus to be a younger stroke survivor! I was told in the hospital that because I was under 50, therapy had a greater chance of helping me than if I were a decade or two older. Actually, in brain years, I guess even an additional year would have been to my disadvantage.

Saturday, August 24, 2013

22 Months

I'm on my new computer. Still working out learning a new system, but mostly up and running. :) Thank you, Rick. You do so very much for me!

Today I presented two, identical, back-to-back, one-hour workshops. Only 1 person came (well, 2, if you count the one second session lady who said she was there for resource gathering rather than personal need), but I think it was a productive first hour, and better one person that is open to allowing you to speak into her life, than 100 who are physically there, but not being impacted.

We had prayed that God would bring exactly who He was calling to each workshop this morning, so while the overall lack of conference turn out and my specific workshop attendance were humbling and disappointing on one level, I think the one-on-one interaction was a great way for me to break back into public speaking. I learned a couple of valuable lessons about myself and presentation this morning (specifically how a couple of thing have changed for me and need to be taken into account since the strokes, things I never could have learned without just doing a "first" to gather post-stroke experience). I felt like today was the first step in the next chapter of my life and was quite blessed both by the one lady I got to really talk with and by the conference organizer as well.

Tomorrow morning will mark 22 months since this all started. In the early weeks, even the early months, I couldn't have imagined reaching even 6 month or one year, not to begin to conceive of nearly two years now! So many changes in these past two years! And yet, I feel like I am me again, where-as, I initially thought of my pre-stroke and post-stroke selves as to entirely different people with different lives, different experiences. I referred to the woman who lived my pre-stroke years as "her," but now I am embracing the fact that I am still me and that while everything has changed, nothing really changes who I am, God's purpose in my life since the day of my creation.

Physically, even emotionally, mentally, and most assuredly spiritually, I continue to grow. I've made enough progress that I have asked both the friend who has been coming over weekly (for well over a year now!) to help me clean house, and my emotional counselor, to drop visits down to every other week now. I know I am still making progress, but the huge gains have significantly slowed, so there is little new to specifically report. Instead, if you are looking for a current update, I recapped it all fairly well a  few weeks ago.

Oh, I know the pretty big deal thing I haven't shared her yet! Double vision update! Over my right shoulder, I have been able to fully turn my head and be able to pull the twin images behind me together for a moment twice now! I still can't turn my head nearly as far to my left, and what I do see starts doubling fairly immediately to my left side, so trying to see behind me is still pretty impossible that way, but that I have been able to get my head turned so far to the right AND to achieve single vision a few times is more than incredible! This makes me hope driving might really be possible again some day?

My balance seems to be much better this week, so maybe me water instructor was right in thinking we were seeing a profound physical impact from all the emotions of the schooling changes for the kids? This week, my balance was enough improved that she could easily identify which moves still make me really dizzy and off balance, things I hadn't even identified for myself yet (I'm so used to being dizzy, I rarely even realize unless it gets REALLY bad any more) and develop some working coping strategies for more safely making related movements that don't set me world spinning nearly as much!

My shoulder is still more sore than it had been before this flair up, but has tamed down a LOT since when I last posted. My hip is also really tamed down. Thank you for the prayers!

I was facing some pretty nasty ear pain on my ear that was recently worked on, but it seems to be doing better now too. Today, we had to climb in  elevation enough on the car ride home from the conference that my mom commented that her ears her just popped. Soon afterwards my right ear popped (my left has a tube imbedded in the ear drum, so there is no need or ability to "pop" with pressure changes now) and my left jaw popped at the same time. Weirdness. I wish someone could figure out this crazy interplay of facial pain, hearing loss, mouth numbness, and jaw pain! Today was one more reason for me to think some sort of nerve involvement is impacting it all.

I went to visit J.'s teacher in the rehab hospital on Friday. She feels so is making little progress and is discouraged by the tediously slow process, but she looks great compared to what I was expecting! Please keep L in your prayers, yes for continued physical recovery, but even more for the emotional and spiritual battles she is facing and those yet before her!

I don't have my fun library of graphics built on this computer yet, so sorry today's post is so non-descript. :( In lue of my normal Bible verse, I leave you with this devotional that I played with the concepts as part of my talks today: Building An Ebeneezer (Thank you, Lisa! This is such a good line of thought!)


Wednesday, August 21, 2013

Computer Down

My computer has been struggling for a while and finally decided it was done for good this weekend. I am on my tablet and after much juggling between my email account, cell phone and Google, am able to get into my blog and hopefully post this quick update. Rick bought me a new computer last night and hopes to set it up this weekend. Unless something big happens this week, this will be the only update that I will go to the struggle tto send.

Prayer requests:

My left hip has been really aggry for nearly two weeks now. Stiff and sore and not wanting to work. It does seem to be improving (yesterday was the first moring I didn't wake up due to pain there), but is still not behaving too well.

My left shoulder is extra grumpy today. It hurts to even breathe. Lots of different kinds of movements cause a sharp gasp of pain and I generally have a pretty high pain threshhold. I think I slept on it wrong last night.

I will be leading two, one-hour workshops on Saturday. This is my first public speaking since the strokes. I am nervous and excited.

My friend K is expecting and has a history of miscariages. She is really sick and we are thinkimg this os hormonally good news, but pretty miserable! We are praying for the baby's life, but also for strength for K for this season.

Our son's home room teacher from last year had a brain stem stroke on the second day of this school year. I am trying to find out more details and hope to visit her soon, but the news really shook me up! It wasn't good any time, but for our son's sake, I am so glad this didn't happen last year!

My book, that I have been thinking was "almost" done for months now, I kept finding sections that were not finished. I sat down and checked it, section by section, last week, only to discover I,ve only written about HALF of the book!  I was so sure I was so close to finished. I must have dreamed a lot of sections done that never were! This is as discouraging as if I had written them and lost them in a computer crash or something like that. I would be blessed by your prayer for wisdom, speed, perserverance and grace in getting this book actually finished and published!


God is doing big things in our marriage.

The kids and I all seem to be adjusting well to the new schooling lifestyle.

Rick's dad thinks he can help fix our van without much expemse.

I am getting a new computer.


Saturday, August 17, 2013


From Facebook

It has taken me a couple weeks (several days of serious typing this week, but re-reading my own hand writing and single-handed typing takes a LONG time), but I finally got three posts from early August up and live. They are from Aug. 2, August 3 (AM), and August 3 (PM). Sorry it took me so long. I realize some of this information has already changed since these posts (like our daughter getting in charter school), but I tried to post written, without editing to change my thoughts at that time.
From Stroke Survivor on Facebook

Quote: “Prayer is not an attempt to get God to agree with you or provide for your selfish desires, but that it is both an affirmation of His sovereignty, righteousness, and majesty and an exercise to conform your desires and purposes to His will and Glory” ~ John MacArthur
"And we all, who with unveiled faces contemplate the Lord’s glory, are being transformed into his image with ever-increasing glory, which comes from the Lord, who is the Spirit” (2 Cor. 3:18).

Wednesday, August 14, 2013

Ups, Downs, and Spinning Around

All our kids are in school (picture at link) this week. I went back to bed after they left and slept for over two more hours this morning! When I woke up, it was with a jolt of panic at how late into the morning it was and fear that my kids were unsupervised all that time. What a relief to relize I was allowed to sleep like that and they were being well cared for.

So far, they are having a blast and I am not too lonely, delighting in the relaxation hours, though of course I do miss them. Really, since the kids moved back home, a quiet moment alone is a rare thing (not that I'm complaining, just stating facts). Actually, for a few months now, I have been able to count on a relatively uninterrupted hour to think my own thoughts every Tuesday afternoon, waiting for my ride on the ACCESS bus, but that isn't the same as being in the quiet and relaxation of my own home.


Maybe it is because I am trying hard not to let my mind go there, but I really am not having anywhere near the identity crisis I expected I would over no longer being a homeschooling parent. I more think it is God's amazing answer to prayer that I am so peaceful about this change. Because I know the kids will be coming home at the end of each day (unlike when they were living away from home the first several months after I came home), I feel very peaceful about them being gone for so many hours each day.

Remember how I said Sunday morning that I had yet to serve a meal to my family? Hubby had a meeting on Monday night and did not get home until after dinner. So I made up my mind and just did it. It was slow, sloppy, a little messy, and probably didn't look to pretty, but I accomplish my goal and served dinner to my children that night, rather than passing the serving spoon off to one of our kids!

Generally, I've had a hard week, physically. Actually, looking back, the less balance issues have been going on for a couple weeks now, starting on my birthday, so this pre-dates my last ear surgery that certainly didn't help the balance issues, but can't be held entirely responsible either. It was all compounded when I made the mistake of trying to wear 1-inch chunky heals for the first time, this past Sunday. I figured that they were very sturdy and the with of the "heal" was as wide as the shoe, so I though I would be able to manage. I figured wrong! I was unsteady when we left for church, but assured Rick that I always have to re-learn slight muscle variation any time I put on a new pair of shoes and I would soon adjust. Actually, I did pretty well at church (even received an encouraging, "Look at you go!" from a friend, but after sitting in the car for a few minutes after church, I was totally thrown off balance again and could hardly walk! Rick had to hold my arm or hand and guide me for almost every step.  Back to only totally flats for me.
Picture from Facebook
Since then, I am still pretty thrown off. I don't know why exactly. If it had only lasted a day or so, I still would have been blaming those silly shoes, but today is Wednesday, so I have a hard time seeing how a few hours in unwise shoes last Sunday could still be throwing me off so much even now? I am using my cane to get around the house quite a bit again, especially when it is dark, I'm especially worn out, or I have to move quickly (like the restroom). I haven't consistently needed to use the cane inside my own home in months now, so this is confusing! Maybe I'm fighting some little virus that I wouldn't even notice were it not manifesting itself in this way? My water therapy coach notices a huge difference and has been quite concerned, but finally seemed to conclude this is my body's way of coping with all the changes of having the kids go to school this week - I'm not yet sure if I agree with her theory or not. Maybe???

Weeks ago I talked about pain issues being so bad that I was thinking about returning to a wheelchair. Not much has changed there as far as pain, but I have been learning to cope better and rarely contemplate returning to a chair due to pain now. However, if this balance doesn't improve, I'm currently thinking I may need to go back to a walker, if not a chair, here before long, as a safety consideration. I've really scared myself a few times lately. :(
Found on Facebook
Speaking of scaring myself, I woke up choking at 2 this morning. I think I had simply swallowed spit wrong in my sleep. I coughed HARD and drew in several noisy, raspy, strangle-ly breaths before I could clear my lungs and start to breath easily again. I was a horrid way to wake from sound sleep, terrified my husband, and woke up our daughter from down the hall, who came running into the room in a panic. I fought vomiting for another hour (because I was coughing so very hard when I sat up choking), but all seemed fine after that, though I didn't sleep well (disturbing dreams) until after the kids went off to school. Who knows what that was all about.

I'm generally quite joyful now. I think of the future and see definite plans unfolding (God's continued guidance and blessings, public speaking, new books, etc.). I look at the present and am thankful (deeper relationship with the Lord, husband, children, parents, not just living in "survival" like that first year or so, abilities doctors said I would never be capable of regaining, health insurance that is covering many of my needs, an army of caring healthcare givers, great friends...). And yet I must guard my heart and focus on these blessings. It is so easy to get caught in the comparison trap, to envy what others have or the abilities they have struggled for and gained back. I can much too easily get caught up in feeling put upon because I don't drive, am no longer in good shape to teach my own children, or envying other skills and material possessions (hearing aids, adult trike, etc.) that I think I should have. I have to consciously remember to be thankful for what I do have, including my very life, a great schooling provision for our kids (going to elementary parent night tonight, went to high school last night), a husband who loves me and has stuck with me though a terribly hard season (happy 21-years tomorrow!), children who well could never have been in our lives, and so much more!

I am going to work on transcribing my handwritten journal entries from Aug. 2 and 3 into this blog now. I'm not sure how much I will get done before the kids come home as the first was 15 pages long (but I write really big and sloppy, so the word count shouldn't be too bad). I will be back-dating those three posts to the actual dates they were written.

One last thought, if you don't have a penpal yet, please prayerfully consider contact Art. His information is listed at that page and, to my knowledge, he still doesn't have a buddy yet. He was heavy on my heart in the early hours of this morning.

For my mom (both of these)...

And hubby...

Sunday, August 11, 2013

Personal Victory

There is a television show that will be coming out this fall. I can't tell you the name or even if I would like the show or not (probably not), but this one commercial totally cracks me up, every single time! It has Michael J. Fox and his character displays his real-life disability (MS?) and goes to serve his family dinner, with slow, deliberate, ataxic (tremor-ry, shaking) movements. While he only has the serving spoon slowly stretched about half way out to the first plate, his wife snatches it from his hand and quips something like, "This isn't the time for a personal victory. Your family is starving here!"

Let me be clear that if someone selfishly discounted my efforts like that, I would be hurt! I think the reason the commercial tickles my funny bone though (apart from my PBA very odd sense of humor) is that it highlight how ludicrous it seems to struggle with every "simple" activity, all the while trying to function in an able-bodied world. Who thinks twice about serving a dish with a spoon? I have not served dinner to my family in nearly two years now...

All this to share another personal victory this morning! I put steam rollers in my own hair! I don't know that I did a great job, but it is a first for me since the strokes! My mom has done it for me. My daughter has done it for me. But I have never done it, not one curler I don't think, for myself! I haven't had enough function of my left hand to hold anything at head level, much-less manipulate rollers! This morning I did my whole head! This used to be pretty much a daily task, pre-stroke, and even with waist-length hair I could manage my whole head in 5 minutes. Today took over half an hour to get the rollers into shoulder-length locks, but I did it myself. We'll find out the results when I take the rollers out after this post.

Quote: “We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” ― C.S. Lewis
The Lord is my shepherd, I lack nothing.
    He makes me lie down in green pastures,
he leads me beside quiet waters,
    he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
Even though I walk
    through the darkest valley,
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me. - from Psalm 23

Friday, August 9, 2013

Chocolate, Coffee, School and More :)

My internet was down for several days, then I was out of town. There were several big bits of news from the past week (ear surgery results, hiking accomplishment, etc.), and I will go back and edit the post I hand-wrote into the days I actually wrote them soon, but meanwhile I wanted to get back on track from this date.


The biggest answer to prayer is that we got a call last night, that our 10-year-old has an opening in her class, so will be getting into the charter school with her brothers. Praise the Lord!!! Classes start Monday! Thank you for praying with us!


I do not feel like I have gained any new hearing ability (positives, like less pressure on ear will be addressed in a post-dated update, coming soon), but I must have regained a little as it is hard to identify where sounds are coming from now! Something to my right sounds like it is in front of me, something in front, I think is behind and maybe to my right, to my left everything (if I hear it at all) is just a low mumble. The mis-identification of direction is actually encouraging at this stage, as it is evidence of some binocular hearing again and the brain trying to re-learn how to process a bit of input from each ear! :)


I took an online cognitive test last night. At 21+ months post strokes, I scored 1/2% (4 out of 800) on "divided attention" (multi-tasking) skills. I know that this has improved so MUCH already. My therapist and I would laugh that I couldn't walk and chew gum. (Well, I couldn't walk, period. But in therapy, re-learning, I froze up if anyone else was walking with in line of sight, etc.) I can do that now, while it is with a cane, I literally do walk, in crowds, and chew gum at the same time these days, so there has been progress, but I was stunned and sad when that's what test scores said last night! 


I know the test was not stroke-specific and just a free, online evaluation, so isn't too detailed, but even if my score were to have been 40 rather than 4, it is still an area where I am pathetically lacking and folk need to be aware of this deficit in my brain function. I simply had no idea that I still needed to work SO HARD to compensate in this area! Other low areas that "could be improved" were eye-hand coordination (I knew that one, but was still disappointed in the 17 out of 800 rating), memory, attention, motor control and perception skills. Thankfully I did score higher than average for my age group in "working memory" (funny, because this is one area I would tell you was deficient, but they are looking at a specific part and function of just one area of memory here, so maybe not the areas of m) and also scored average in "spatial perception," so it is nice to know there are at least a couple parts of my brain that aren't so broken!


This kind of goes along with thoughts I posted to one of my stroke groups this week, "Do you ever wonder how you look to others? I wonder if I "look disabled" or not? I know the cane and the limp give a clue, but people are starting to treat me pretty normally again. For over a year you could tell with one glance that things were seriously wrong. I know I don't look as injured as I did then, but I wonder how others think of me. I just don't honestly know. Anyone else ponder these things?" It isn't so much that I am embarrased or anything, just honestly wondering how others perceive me, how I would think of me if I were on the outside. For over a year I felt like a different person, not even myself anymore. I would ever refer to myself, who I was before the strokes, as "her," and couldn't even identify with "her" life or "her" reality at all any more. Now I just feel like I have lived one life, am only one "me" again and this "me" is the same person I was, just with a few newer challenges. I wonder if I am still "me" to others or if they still relate to me in two realities?


A sneak-peak at the back posts I need to fill in, on Monday I wrote, "I had to share my excitement. I PLAYED with my family, in a swimming pool, for nearly two hours this weekend! I am SORE now and exhausted and more uncoordinated than normal (pure fatigue), but a year ago I could only stand in the water, holding onto the side of the pool. Even turning on my own was impossible. Yesterday I walked in the water without support, repeatedly threw a ball, picked it up with my left (more stroked) hand several time, and even swam several widths of the shallow end! Praise God!"

I don't do coffee, but love the other vegetables! (From Facebook.)
I did take a nasty fall later Monday morning and still have a swollen, scabbed left knew and even more painful left shoulder. Not fun, but it is what it is. Poor balance, but no more falls since then.


It is interesting what foods I do and don't like now. I've never liked coffee (well maybe when I was 4 or 5 and wanted to be grown up), and that hasn't changed. I do have to be sure any beverage isn't too hot (especially) or too cold or I will choke on it, sometimes burning myself too! I have loved tomatoes (like plants and plants worth) and am told I didn't like them at all for several months after the strokes. I like them again now, probably almost back to the extent I did before. I had also been a big banana eater, but can remember, starting as early as the hospital, not liking them any more, but I was also on potassium in my IVs at the time, so I suspect that may have been why, and/or a texture/swallowing issue. Now I can take them or leave them, though I think this past spring I started noticing I was enjoying them more again, but sometimes still have texture issues there. I like the taste of raw carrots, but not the texture, unless it is cut up or shredded finely enough. I can't chew well enough to make eating larger carrot pieces (like you would often find in a salad) enjoyable. I don't find cooked onions as disagreeable, flavor-wise, as I did before the strokes, but they still give me indigestion. I found out over the past couple weeks that I love both cucumbers and raw zucchini sticks - didn't dislike before, but didn't crave them either. I've commented to my husband a couple times now, always in surprise, that scrambled eggs are really good now. I've never really been an egg fan, but the gooey yellows of a medium fried eggs were about the only way I cared for them at all then, and scrambled, unless loaded with bacon and/or cheese, were my least favorite. I'm sure there are many other food surprise changes to explore, but that's all I can think of right now.

I am in a social group for (mostly) younger and (young-at-heart) stroke survivors on Facebook. It is called a coffee house because the idea is mostly fun chatting with others who will get the odd humor we share. A couple weeks ago I made an onery post that is true and might make you feel like you know the non-stroked me a little better: "Confession. I hope I'm not excommunicated from this group. ;) But I feel like an imposter of this coffee house. So here goes...
I don't drink, I don't even like, coffee. It is "false advertising." The smell is FANTASTIC but the taste is NASTY! 
There, got that out in the open. Please pass the tea..."

It sounds like I am, hopefully (paperwork still grinding), to start voice training, up at the university, once a week, starting next month. I will also be leading two, one-hour work shops, down in Carson City, on homeschooling through hard times (ironic since my kids will be in public school by that point, but materials are built upon lessons gleaned from my prior season of illness), in about two weeks. It will be my first public speaking since the strokes, I am both very excited and quite nervous too. Please pray I have the physical energy for the day, the mental clarity to prepare and present, and clear enough voice and hearing to be able to communicate clearly that day.

I am thrilled for my kids that they will all be getting what they really need in school now, but I'm starting to feel pretty sad to. I hope Monday and next week go well. The first day is only a half day, so that helps! I'm excited about being able to work on my book more and having the time to focus on my other therapies, but it didn't start really hitting me, emotionally, that all the kids will be gone, every day, until having Princess R enrolled became a reality, late yesterday. I am hoping to go forward with the next phase of the stroke (medical) study I participated in very soon (they had hoped it would be starting up again this past June and there is no word yet) so if that goes soon, I will be staying plenty busy this fall! Plus my mom and I eventually want to take an art class together and/or maybe start scapbooking again, do more days of gym therapy, and simply have some "play" time.

"God's purpose is to enable us to see that He can walk on the storms of our life right now. If we have a further goal in mind, we are not paying enough attention to the present time. However, if we realize that moment-by-moment obedience is the goal, then each moment as it comes is precious." - paraphrased from Oswald Chambers, via my friend Jade
I love this picture, found on Facebook! Sometimes God calms the storm, sometimes He calms the child!

He got up, rebuked the wind and said to the waves, “Quiet! Be still!” Then the wind died down and it was completely calm. - Mark 4:39