Starting October 25 of 2011, "InfertilityMom," 39-year-old Jennifer Saake (founder of Hannah's Prayer Ministries), experienced 6 strokes, all due to vertebral dissection at a chiropractic office. The largest two strokes were brain stem and cerebellum bleeds. Jenni remained hospitalized until nearly Christmas 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 (please read more and watch short video). Jenni is now walking (with a cane or wheeled walker), has recovered much eye-sight, some hearing, partial use of her hands, cares for most of her own personal/toiletry needs, and is currently writing three books, maintains multiple blogs, and stays active on both Facebook and Pinterest. Near the five-year recovery mark, Jenni has renewed her pre-stroke excitement about the unique Lilla Rose hair Flexi eight jewelry she sells and has finally regained enough hand/arm function to regularly use! (The biggest ongoing losses at the 4 1/2-year point of recovery are left-side nerve pain, inability to drive, loss of homeschool teaching capability, significant sound processing issues (often triggering nausea), and some profound physical ability limitations such as a limp, balance challenges, clumsy use of right hand and only large motor function in left hand.) Here is her resume.

Since Jenni's chiropractor carried no insurance and moved out of the country soon after the accident (thus avoiding any legal or financial consequences), if you would like to help contribute to the Saake (pronounced like the two small words, say and key) family's massive financial needs (medical expenses alone are estimated to cost between $1- and $1.5- Million in Jenni's lifetime), please visit Jennifer Saake's Stroke Survivor GoFundMe Page. (This support information has been added in direct response to several reader requests.) The Saakes sincerely thank you for your prayers and if God prompts and equipts you to send any monetary assistance as well, this is a significant added blessing.

Jenni is clinging to God's grace through the entire experience. Here is her unfolding story, documented in her own words (typing with only her right hand), as she perceives it happening in real time, messy, honest and to the glory of God...

Thursday, April 25, 2013

18 Months

Grab your cup of tea. This is a long post! (I've been working on my thoughts here for over a week.) :D

A year and a half! Honestly, I didn't think we would ever get this far! I still know that I almost moved to Heaven on this day, a year and a half ago. It was a Tuesday morning, "should" have been my last on earth. God had other plans. I still question the length and circumstances of my earthly destiny, but more and more I am coming to terms with the reality that I am still here by God's love, ordination, and for a purpose.
I love this (and the author,Tricia Goyer too)!
That I survived at all took me a long time to begin to accept, but I know my husband fought so hard that I be given every chance at a rehabilitated life, even when all medical counsel said to just give up because I could only ever achieve enough recovery to remain bedridden in a nursing home. The quality of life I enjoy today is a direct result of his fight for me to have a chance. Thank you, Rick! There's no one I would rather journey through this life with, even when the climb is so treacherously steep. I love you! (I love and am so very thankful for our kids too!!!)

Mentally, I am becoming more aware of my deficits. I feel fairly intelligent in most areas, but know I am lacking in higher functions such as math, geography is having to be relearned (what a blessing that my kids and I have been focusing on the 7 continents, that I wouldn't have even been able to name at the start of the year, and key facts of world culture and geography all school years), English rules (thankfully I have always written more by "feel" than technicality), short term memories (one reason I love Pintrest so much is that something I loved enough to pin just last week, seems totally new again when I read it today) and even a few random and very specific longer term memories of various people, places or events.

I used to feel so frustrated when someone would ask me weather or not I remembered a specific person or event or fact. I've come to realize that is a very legitimate question. I does not minimize the extensive and details I do maintain, nor my inelegance (as I interpreted the question to mean in the beginning), but it is reasonable acknowledgement that information I once possed may or may not be there any longer. One day I commented about something that was no longer as I thought it was and Rick replied, "You really don't remember that? It's OK if you say no." That was so freeing, just being granted the "permission" to not remember that which honestly could never be recalled. He's made a few similar comments at various times, always carrying with his acceptance such a measure of relief!

As a friend (who I have absolutely no pre-stoke memories of even knowing, who has been brave enough to re-enter my world, perhaps or perhaps not, the only person totally erased from my recollections) who also had a mild stroke years ago, recalled her experience and put words to my own. She explained that it is like a hot needle has randomly poked through my brain, taking with it the most unrelated mix of facts and experiences. It's like popping balloons of information, what was there simply is no more. No amount of prompting or reminder will bring back even remote or fuzzy memories of what just is not there, of another's life or experiences. As C. described, it's not like you can talk enough about something that you eventually say, "Oh yeah, I think I might sort of remember something about that..."

My pre-stroke memories are crystal clear, sharp and detailed about most things other than the days immediately proceeding the first strokes. Even several of those memories, such the timeline of events leading up to my hospitalization, are really quite good. But like a restaurant that I have been told closed a good six months or so before I stroked, I was surprised to see it closed the first time we drove past after I came home, because I have NO recollection of them going out of business. A few events of this past year and a half, especially those from recent months (the first months following the strokes are rather a blur), are also quite clear, but the things I am missing are simply GONE.

Click here - StrokeOfGrace.blogspot.com/2013/04/why-i-wear-combat-boots.html.
It seems SO MUCH LONGER than a year and a half ago that our (my entire family!) lives changed, and yet, for the first time since the strokes I can honestly say it seems it couldn't possibly have been so long ago already. I still feel so new to these changes, in many ways. Still, I think that whole, "I can't believe it has already been..." to accompany the existing, "time is passing SO slowly!" mindset is a measure of progress! :) So I will keep lacing up my combat boots and keep keeping on. The battle belongs to the Lord!

I still have occasional dreams that include my old abilities, like recently dreaming of Signing (Sign Language) fluently with both hands. But it has been long enough now that such dreams usually don't shock me, grieve me, or cause me to be jolted back into my currently reality, like they did for so many months. The dream thing was an odd progression where my dreams were initially only able-bodied and caused such cutting anguish each time I awoke to such an altered reality, then there was the trauma of the first time my mind started including my waking limitations into my nightly terrors, then there was a long season where my subconscious had yet to fully grasp the transition and my nights were quite the mix of pre- and post-stroke realities (the per-stroke ones seeming the most cruel because they were so terribly unattainable). Now I am finally just typically the post-stroke "me" weather I'm waking or sleeping (with a few random pre-stroke dreams simply being a reminder of the life that was once mine, but typically not being so taunting of what will never be again). 

In fact, I feel enough back to myself now that I am often surprised to hear the slow drawl of my own voice, feel/see the shakiness or lack of strength of my arm, by my own stagger or tendency to trip, by my wavering attempts to capture a note of song (but I am thankful my voice has any range now at all, compared to the simple monotone of earlier months), by lack of stamina or loss of capability in accomplishing once-simple tasks like general housework, by a stab of pain, by muffled hearing, or doubling vision. Whereas the first 18 months was marked by an acute and constant awareness of my many injuries, I seem to be slowly entering a phase where I "forget" that I have stroked until something brings me a vivid reminder.

Found at unbrokenbygrace.tumblr.com. A year ago, even a few weeks ago, I absolutely couldn't have fathomed ever being able to sing (and mean) these words. But truly there are moments when God's glory eclipses affliction now and I am momentarily unaware of my losses and shortcomings!
There is a JJ Heller song (see toward the bottom of the sidebar for my post-stroke theme, also by Heller) with the lyrics, "Be gentle with me, Jesus, as you tear me apart." I think that pretty well captures my heart this past month. If you haven't read it yet, my recent rose gardening story (especially the part between the larger two graphics) talks a lot about the spiritual journey right now.

Deep breath... I'm not sure I that I am really brave enough to actually post this, but I'm taking my courage cues from Kendra who has boosted confidence with her comments about my voice (thanks, sweet friend!) and gotten quite brave to share pictures on her blog lately, so here goes. My current singing voice, how dramatically it is improving, and how far I still have to go. I recorded this last week (my voice seems less clear this week, but it gives a general idea of where I am now). I think, of all the therapy tools I have tried, I have The Listening Program to most think for this amazing improvement.



I went to the dentist for a routine check up and cleaning last week. My jaw / face / neck got so sore as a result. :( My ears (especially the left) really rung for several hour afterward. It was disconcerting to "hear" through my teeth, and I guess because of nerves, feel a high frequency hum in my left ear when he touched certain teeth with the polishing brush. The hearing thing hasn't happened at any of my post-stroke appointments before.

I have always been blessed with great teeth, having only ever had one cavity / filling, and this not until my later 30s! I kind of expected I might have new problems discovered at this appointment, due to the ongoing numbness in my mouth and probable inability to detect any problem that might have been brewing on the left side of my mouth. I also am known to sometimes still "pocket" food between my left gum and cheek, if it gets over there, though I can mostly keep all my food to the right now.

To my happy surprise, the left side all seemed fine (other than the significant dis-alignment of my teeth and jaw that was instantly notable on the x-rays), but I was sadly shocked to learn I am possibly developing three, small, new cavities on the right (the teeth that do double duty because they handle all my chewing now) and have to watch them. I will likely need fillings (including replacement of the one existing filling, as one of the cavities seems to be forming just at the edge of the old one) at my next appointment in six months. It probably seems rather small and petty, but this news was quite upsetting to me, yet another blow to my already wounded ego. :(

It was, however, a pretty interesting process to have the teeth actually cleaned. At one point (I couldn't feel what he was actually doing at the time), something triggered my gag reflex and due to my swallowing challenges, I started to choke on my own saliva and nearly threw up on the dentist. Thankfully I did not! Just a nice coughing scare. As for the actual cleaning of the teeth, it was interesting to observe what was still totally numb, what had some tingly feeling, and what had improper feeling, like where something benign registered to my mind as stabbing pain instead. At one point, I didn't even realize I was in much pain until I felt a tear rolling down my cheek.  The strangest sensation was when the dental hygienist was wiggling floss between my teeth and I could typically feel at least pressure at the top of my teeth, but sometimes couldn't feel when he got down to my gums. Strange!


Last month was my biggest "retail therapy" (shopping) month ever. It became problematic enough I had to talk to my therapist and put a lock on all but our smallest bank account. :( The last couple weeks have been much better, but it is very hard. This is one of my mechanisms for coping with stress and feeling I have an area of control in my life, even if the very lifestyle is exhibiting out-of-control behavior. There are other areas where, with the damage to my brain, it would be rather common if I were dealing with impulsive and self-destructive behaviors, so I'm thankful God is protecting us in many other areas, but whatever the reasons, I am working to become more accountable for my actions.

Our oldest son is getting taller than me. And our younger two are sure blessings, but keeping us on our toes as their parents! In moments like these (which I keep reminding myself could happen, strokes or no strokes), I just make a conscious decision to remember how easily we could have remained without them at all, how very blessed we are that they even joined our family! I love them so very much, am ever so thankful for these amazing little people. But some days, more than others, they sure have unique ways of keeping me humble!

Our daughter is awaiting her new glasses we just put on order this week. They are really cute on her! She acts somewhat upset about having to get glasses. I think it is just that, mostly an act. Secretly, I think she is really excited about the change.
May is stroke awareness month.       Picture from Pintrest.
I guess the only other big change this month comes in the form of a new chronic condition diagnosis, hypoparathyroidism. This very rare diagnosis, while not enjoyable in symptoms, actually brings great relief because it finally answers many long-term questions that have come about, but don't necessarily fit the normal pattern of post-stroke complications. (But when do I do anything "normally" anyway? That I'm even here is terribly abnormal. I've long-since come to realize that, as Kendra puts it, my recovery falls so far outside the text books that doctors really don't have a clue what to do with me!) I am so thankful that I have been able to see this endocrinologist and that we have these answers finally, though it may take months or years to try to bring this hormone imbalance into balance. I'm still a bit nervous about the insurance situation here, but as far as we understand, they have covered the majority (all but a few hundred dollars) of this investigation. Thank you for praying with me! (More parathyroid information.)

I have been physically feeling really quite yucky this week. Needing to go to bed, pretty much without any warning, for 2-3 hours in the middle of the day, almost every day this week. I'm guessing that is because we did address the parathyroid issue for a week, then had to suddenly cut out treatment (due to allergic reactions). I think treatment made SUCH a difference, that coping again without treatment is pretty overwhelming. My pain levels are also so terribly high now that it is interfering with both my exercise routine and my time with my physical therapist. She was very relieved to hear I will be seeing my neurologist for a scheduled check-up on Friday. I will be following up with my endocrinologist on the parathyroid issues, to see about treatment alternatives, next week.
“Truly my soul silently waits for God; from Him comes my salvation; He is my defense; I shall not be greatly moved … My soul, wait silently for God alone, for my expectation is from Him. He only is my rock and my salvation; He is my defense; I shall not be moved.” Psalm 62:1-2, 5-6

3 comments:

  1. Thanks for sharing your heart, and life. I am praying for all areas of your life.

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  2. I'm so thankful for you! Psalm 62 is one of my favorites. I'm praying for you right now, Jenni!

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  3. I think your voice is awesome. Totally understand the dentist thing as the same thing happened to me.

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