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!)

Saturday, October 31, 2015

4 Years

I'm 6 days late in making this post. No, I certainly didn't forget. 

Head covering from Kendra. These pretty little butterflies recently fluttered into my mail box!
The 25th came and went with me too exhausted to even open my laptop after a week of "single parenting" while my hubby was out of town for business while my kids were home from school half days all last week. I hit the ground at 5:45 each morning and didn't slow down until 9:30 each night (then was as late as 11 or even 1 before actually falling asleep). I slept for 4+ hours that afternoon so blogging never happened. Rick did treat to to an extra large chocolate milkshake for lunch before  my extended nap - yum!

The kids have been home full days this week (so weird not to have fall break near Thanksgiving!) but Rick is back home so I have gotten more rest. Yet, I've still avoided posting for reasons I can't fully sort out.

My lack of mobility had us living like an episode of Horders.
Same corner, early this week. It has driven me crazy for a long time, but I finally had the physical ability to do something about it!
I know I am physically exhausted, as my parents and I spent 6-10 hours each day, Tuesday through Friday, this week, re-working the doll house my dad made for me over 30 years ago, for my sweet daughter now - her choice of paints, about 1,000 itty-bitty roof shingles hand dyed and individually fitted and glued onto the roof, new railing, real wood flooring in two room, various repairs, etc. It looks beautiful, she is thrilled, and we are exhausted! Plus I restarted water therapy yesterday (exactly 7 weeks post op) and, being more mobile and balanced than I was for my first few years post-stroke AND being in no abdominal pain for the first stretch of time since April, I am actually getting some poorly neglected areas of my home cared for again - amazing when I had to lean over to inspect something down near the floor last week and my tummy didn't scream in protest nor did my head spin out in severe nor acute dizziness!

My old doll house with old paint job and needing repairs.
Repaired, repainted and refurbished for our girl! :D
Four years. I really don't think my physical exhaustion truly accounts for my avoidance of this post, even if I have fallen into bed too exhausted to care to even open my computer each night this week. It is something more to do with the fact that "three years" and "four years" were my mental benchmarks those first many months, the seemingly "too-far-away" and "never-to-be-realized" goals I held in awe, reverence even, to think that there were really people that had survived this long.

Another before shot in my room.
What I did not know then, what I have been so thankful to discover, is that each year has been easier than the one before. I have not lived four solid years of tortured anguish like I did those first several months, even first couple of years. For this I am ever-so-thankful!

Same spot after. I've cleaned about 75% of my bedroom and still have a way to go in reclaiming our bedroom.
While it is nothing now like it was say three years back, the fact is, I'm still not "all better," not by a long shot. I guess I haven't wanted to pronounce my 4 year mark, because, quite simply, I'm tired. I don't want to do this any more. I don't want to BE a strokie anymore. Can't I just resign from this job and have my old life back? I miss homeschooling my kids, the freedom and spontaneity of driving a car, hearing what people are actually saying rather than lip reading and guessing, not loosing abilities like being able to get out of bed un-aided simply because I want to take a few weeks off from going to classes at the gym.

From the gift box Andrea and Lisa brought me in the rehab hospital. I love it.
I guess I need to set a new mental bar, like a 10-year mark now. Am I thankful to be here 4 years later? I look at my kids and indeed am terribly thankful they didn't have to live through loosing their mom, so I will keep fighting to be here for them.  I'm really not as "down" as I'm afraid this post likely sounds, I'm just feeling a little lost, rather "Now What?" since I've now passed my "way out there" survival goal. I continue to make small yet rather consistent gains, yet have plateaued enough in recovery to have been at what my doctors call "normal" for a while  now, MY normal, my new normal, my no-longer-horridly-disabled so learn-to-live normal. So learning to live is what I'm striving to joyfully embrace. So days that's an easier goal than others.

My roses are still blooming prolifically.
We have our first freeze warning for tonight so this is likely the end of the garden for the year.

Look at the size of these blossoms, the size of the span of my hand!

Changing pace a bit, I seriously considered subtitling this post something like, "When Poor Balance Meets Blood Thinners." This was really a tiny mishap from house cleaning last week. I tottered a little and my shin connected with a wooden ledge, just right. I didn't even fall! I still have a painful knot on my shin though. And though the bruise has significantly faded in depth of color (looks now about like this picture seemed as the photo did not do justice to all the angry colors when I took the photo!), it now has spread down my leg nearly to my ankle, though the bump was up near my knee!

I have Oct. 25 marked as my birthday on Facebook. Here is what I replied to each person who sent me a happy birthday wish that day:

Thank you for the very many, kind birthday wishes. As you likely know, I am a stroke survivor. Today is actually my "re-birthday" or "stroke-a-versary," the day I have chosen to celebrate God's sustaining grace to keep me alive and going these past 4 years. Thank you for rejoicing with me!
Please feel free to follow my continually unfolding recovery journey atwww.StrokeOfGrace.blogspot.com or search here on FaceBook for "Stroke Of Grace by Jennifer Saake". Thanks! 

For personal record keeping: I'm down to 157 pounds. I was nearly up to (just shy of) 170 at my post-op check two weeks after surgery, 5 1/2 weeks ago. 169 is my record high ever, pre- or post-stroke. I'm sure part of that likely was still post-op fluid retention, but about 6 pounds of that is down from pre-surgery weight! I don't think an ovary, a cervix, an appendix, and a few spots of endo account for all of that and for better fitting clothes too. This no-wheat, low-sugar thing actually seems to be working. Now, to see if I can get break the 150 threshold that has held stubbornly in place since post-stroke weight gain! I'm so very tired of loosing, then regaining, the same 20 pounds over and over again. If I can get under 150, my next plateau (pre-stoke) barrier will be 143. My goal (where I feel best, where I had JUST reached a week before strokes when I went out and bought a brand new jacket that I was only able to wear that one week) is 120 (so nearly 50 pounds of total loss, around 35 more to go) but anything even around the 130 mark would feel so much healthier than where I've been hanging out the past few years!

Our daughter is a "social butterfly" this year. :D
Same wings I've worn every year for about 7 years. I'm so excited this shirt fits again finally!

Wednesday, October 14, 2015

Simple Joys

So TRUE!!!
Handwriting has been a TASK since that very first attempt after the strokes. I guess my earliest attempts at writing (that I don't even remember) brought grins of pride at how well I could still write, while no one around me could even decipher my squiggles and scratches. But from my earliest memories in the second week after stroke, I have found writing to be discouraging and horridly tedious. Even as penmanship has improved, it has still been a frustratingly, exhaustively, daunting chore!

I used to hand write in my journals by the hour, pre-stroke. Now, the simple task of addressing an envelope to mail is daunting. With mailing anything, it is the entirety of the task that used to take 2 minutes, and now takes an hour that overwhelmed me... gathering supplies like envelope and whatever needs to be mailed, looking up address, actually addressing and writing anything that needs to be written, stamping, getting it ready for mail box or post office - and to list anything on eBay now with those steps and packaging and insuring too, no thanks now, even though this was a big pre-stroke hobby! If I am going to send something to anyone, I often just order online and have it shipped directly there so I never handle it.

Both invisible illness and brain injury that includes the fairly visible stroke deficits as well as the mental processing and neurological issues that often prevent things I seem like I should be able to do by now, but can't, like hold telephone conversations or listen to loud sounds like music with drums or electric instruments or even loud brass horns, like easily take those cognitive steps required to mail a letter, keep up with daily household chores or drive a car!

Yesterday, I picked up a random pen from our collection, to jot a brief note of a Scripture reference for my book. I was thrilled to discover that I actually ENJOYED writing for the first time in nearly 4 years. I didn't write more than a single line, but the ink flowed smoothly onto the paper, the pen felt good in my grip! Of course, it was our only pen of that style I found in the house and it is very low on ink, so last night Rick had me order another 12-pack of these babies - PaperMate gel 0.7, medium tip, blue ink!

I eventually would love to try the Paper Mate Medium Point Retractable Gel Pens, 8 Colored Ink Pens (1746323) pack, as this would give me the same smooth gel-ink writing experience in colors like pink and purple too, but to start with, I'm just thrilled to find a pen that actually makes me happy to write!

I titled this post "Simple Joys" (plural), so please allow me to share another joyful story from this week.

After two cycles from the dryer, a load of laundry was still cool and damp. In frustration, I told the Lord that I was sick and tired of the way the devil has been continually messing with our family over the past four years. I asked if He would please repair whatever was wrong with the dryer and not give Rick one more thing to deal with. I cleaned the lint trap again, re-started the dryer, and set the timer for 20 minutes, figuring that was useless, but I would give it just one more try. 

The timer went off on this short, third attempt and I went in, expecting more of the same, but instead was thrilled to find everything warm and dry! 

I thanked God, and told Him I knew there was no logical human explanation but told him it still felt rather surreal, and that I could rather understand Gideon now, that I suppose this COULD potentially be explained by human logic that the load just needed extra time to dry.

I had no more than said this than I reached back into the dryer again and pulled out the next towel, cold and damp! "Great, so the load didn't get all dry after all." But as I continued to feel around, the entire rest of the load really was quite warm and dry! "OK, Father, you have my attention now!" 

And the next load dried in just one cycle!

God is in CONTROL!!! Whatever your circumstances, He see, He knows, He cares!

I was recently asked the above question about communication my needs to others. I replied, "In person, I typically do not explain myself very well, I don't think. Through online (blog, FB wall, etc.) I think I articulate well, sometimes maybe even "over-share". The result is often that total strangers know more about the specifics of living with my health issues than those in my "real world" life!  Sometimes I email specific links to my husband or mom or other friends if I want them to have a better understanding of a specific situation.

I have a doctor's appointment next week that has me rather nervous. God knows the details. There is 99% chance that this newest issue is nothing of great concern. After doing so many things in the "medically exceptional" department, I am striving not to park my heart in fear. If  nothing comes of next week's appointment, it is likely such a non-issue that I will ever need mention it again. For today, this week, I simply ask for prayers for peace. Likely I am totally "catastrphising" again, jumping to consider worst cause scenario that isn't even realistic concern. I know this in my head. I guess this is a part of the whole near-death, horrific PTSD journey because my heart is not willing to stay where my mind says my soul should be living today.

For God has not given us a spirit of fear, but of power and of love and of a sound mind. - 2 Timothy 1:7

When my anxious inner thoughts become overwhelming, your comfort encourages me. - Psalm 94:19 (Holman)


Friday, October 9, 2015

A Month Since Surgery

I've been getting a lot of surgery recovery questions. Today marks 4 weeks, so here we go:

Not really having much in the way of "hot flashes," just radiating heat almost all the time with an occasional "cold flash" where I guess I feel "normal" temperature for a few minutes. Actually not a bad way to go, except I'm freezing my sweet, non-complaining family when I keep the windows open at night and it drops to 40 outside. wink emoticon Sleeveless summer dress in October goes beautifully with the color-changing trees. grin emoticon The good news is that my muscles, that were already tightening up (stroke issue) before the surgery, as temperatures started cooling, are responding well to internal heat, so I'm walking with less spacitity now! 

The flip side is that because I have been out of water therapy for so many weeks, I'm loosing a lot of muscle coordination and fine motor skill - struggle to put a clip in my hair, have a bruise on the back of my "good" calf from pushing it so hard against the bed in efforts to stand and get out of bed, take serious near falls (like 3 within a few hours yesterday when I tried just my cane for Bible study)Doctor says I may go back to the gym Oct.30.

What I should be wearing!
Specific prayer request is that my mom will be loosing her gym membership at the end of the year (insurance had been paying for it and decided not to offer that benefit anymore) and can't afford to pay for it on her own, so at this point it looks like I won't have a gym companion next year!

Not in any major, sharp pain now like either before surgery or that second week after. Thank you Jesus!!! Still sore at belly button incision and get tummy twinges of pain if I step funny, sleep wrong, stetch too far in the wrong way, etc. Mom says that even a week after surgery I was standing up straighter than I had in months.

My daughter drawing for me.
I'm still sleeping a LOT but that seems to be tapering off just a bit.

I went wheat-free, and refined-sugary-junk-free (still eat some sugar, just not straight candy, and not eating flour takes most other refined sugar out of my life pretty naturally) about 9 days ago. I had one day with day with two variances from the new lifestyle plan, and one day with one, but I'm encouraged by a slightly flatter tummy already! I chose wheat as my one thing to focus cutting out because I don't do well on cutting all grains at once (I've tried that one a couple times and was miserable) and modern, modified wheat seems to be the biggest area of health concern, I think. As my mom says, " I think wheat is not what it should be or was 100 years ago." I haven't been anywhere with scales, but do feel my clothes are fitting slightly better.

In recognition of World Stroke Day 2015, on the 29th of this month, here's the letter I just sent my elected officials:
Almost exactly 4 years ago, at age 39 (kids 5, 8 and 11), I went to the chiropractor for routine neck manipulation. There, in the course of treatment, my artery was ruptured and I experienced 2 massive brain bleeds (strokes) there on the treatment table. I was not expected to make it to the hospital alive, live through that first night, survive my first week (out of what would become 2 months) of hospitalization. Obviously I did, experiencing 4 more strokes over that first month as my artery tried to heal and kept throwing new blood clots into my brain.
Today, I still cannot drive due to cognitive issues, am partially deaf, only have large motor use of my more severely impacted arm and a host of other medical issues, BUT I CAN walk again (took nearly a year and I still need aid outside of my home), see pretty well again (was blind and then had severe double vision for many months) and many other "would never happen" type victories. 
As a stay-at-home mom before the strokes, I did not have enough recent hours of work history to qualify for ANY form of government aid. Also, my chiropractor left the country about the time I was released from the hospital, so we had no legal recourse (and he carried no insurance) so no financial assistance there either. My lifetime stroke-related medical expenses are estimated to run between $1 to $1 1/2 Million. We have no idea where the money will come from besides God. 
I want people to know stroke happens. 25% of stroke happens to people under the age of 45. It can be severely debilitating. Thank you for your recognition! 
You may also be interested in this petition that speaks directly to the issue of chiropractic stroke risk: https://www.change.org/p/u-s-house-of-representatives-bill-… I had none of the typical stroke factors and have been told that my stroke was the direct result of trauma to this artery, as sometimes seen in a car accident or other harsh movement to the neck.

I'm reading an amazing book right now. (Inspired by the movie 
War Room that I got to go with my mom to see on Tuesday!) It is called Fervent: A Woman's Battle Plan for Serious, Specific, and Strategic Prayer by Priscilla Shirer. I want to read large passages aloud to about 30 different people - it is that good!
http://smile.amazon.com/gp/product/1433688670… If you are a Kindle reader, it is $7.99 for that device. 


Sunday, October 4, 2015

Putting Myself Out There

I just took a big step and emailed the women's ministry team of my church. Re-reading, I realize my letter sort of reads like a resume. And so I put up a page just for speaker questions and share my letter here, putting myself officially "back on the market".  (At this time I do not charge a set speaking fee, though welcome your love offering to help provide for family needs and expenses that come about when I'm called away to speak. I also appreciate the opportunity to set up a book table and sell books at your event. My preference is local, Reno, Nevada area, speaking. For out-of-area speaking, I do need transportation, food and lodging provided for both myself and a travel-companion / care-giver as I still am not ready to travel unaccompanied and do not have resources to take on these kinds of travel expenses.)

My name is Jenni, age 43, married to Rick Saake for since 1992, mother of 3 living children (and at least three more waiting for us in Heaven after a decade of infertility including 7 adoption losses and 3 known miscarriages). I am the author of one published book (Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage and Adoption Loss) and have several more manuscripts in the works to seek publication. 

I have spoken to local women's groups at Reno Christian Fellowship, Hope Community Church and Coram Deo (now Mountainside Community Church) and some out-of-state speaking in California and Washington and Texas (I've been invited to Kansas and Colorado as well, but had to decline these invitations), done multiple radio interviews including a Focus on the Family Weekend spot and have done a few television interviews such Family Life of Canada on their Marriage Uncensored show, mostly all on the topic of infertility and loss.

Nearly four years ago, in October 2011 (my kids were 5, 8 and 11 and were home schooled), I went to a chiropractor for neck manipulation due to headache. His adjustment ruptured an artery in my neck and I experienced 2 massive brain bleeds (strokes) right there on the table and was not expected to even make it to the hospital alive. I was unresponsive for 6 hours, during which I had a vivid near death experience, and in ICU for nearly a week, followed by a week in the main neuro unit at Renown, transferred to the rehab hospital, a return to Renown main due to additional strokes and two needed emergency surgeries on Thanksgiving morning, another week of total hospital bed rest, then back to rehab, coming home just before Christmas.

A lot has changed in our lives these past 4 years. Our kids lived with grandparents for 8 months, the new chickens we had just adopted lived in "foster care" for many months, our marriage nearly crumbled due to the severe mental/emotional processing deficits as I slowly re-learned how to manage, we had to enroll our kids in traditional classrooms when they came back home, I was not able to walk at all for nearly a year, I am still without a driver's license, We had to change home church (we have been at SRBC since Feb. 2014) due to neurological needs as far as sound volume (music too loud causes physical pain and makes me throw up, so early service here is just my speed now) and vision issues (those big screens here are SUCH a blessing). I still use a cane or walker outside my own home. Much eyesight is resolved, I have hearing in one ear and have reclaimed large motor function of my left arm. 

I am still slow in mental processing (my last book took me about 10 months to write. I have been working on my current one for about 3 1/2 years now with no end in sight yet) and have done no public speaking since my strokes, but feel my communication skills have improved enough to "put myself back out there" and let you know I'm available if you need me for either a small group or luncheon or whatever. I cannot drive, so need to work out transportation issues if/when/where you ever need me. I am also severely allergic to latex and cannot even be in the same room with tradition rubber balloons. I always want people to know these two things about me when we even start talking about the possibility of speaking anywhere. ;)


So, there it is. Next step. I'm ready and waiting for whatever doors God opens now...

I wanted to see the Super Moon eclipse last week.
This is about what I could see instead.
So here are a few favorite pictures I have seen posted that I have enjoyed instead.
In the meantime, it has been over a week since I posted any kind of update here. My first update actually pre-dates surgery. I never bothered to post it at the time, because I didn't think it had any lasting relevance. I had loaned out my new walker to someone with more urgent and immediate needs than my own. Just before surgery I went online to look around at walkers again, knowing I might really need one after surgery and that if I ended up with two, my mom was starting to need one, so I could give her my extra. I wasn't planning to buy as much as just looking at options.

Over Jerusalem
My all-time favorite shot, photo credit Cathy Croom.
I ended up finding a version of a pink rollator (walker with wheels) I really wanted, that I had never realistically considered before because it was nearly 3 times as expensive as my blue model (different brand, and slightly different style - sturdier but not three times sturdier) in a single box damaged sale, for slightly LESS than I had paid for my blue one! So yes, the day before surgery, my sweet, sassy, beautiful new PINK walker was delivered. I'm debating between the names Bubbles (she is bubble gum colored) and Flower (she is bright and Springy and has a flower-covered seat cover I added, plus this was the name of our first car Rick and I bought together!), for my new wheels. :) A Facebook friend took my cartoon picture I posted here and merged it with a picture of Bubbles/Flower (before I added the basket liner as a seat cover):

Second update. I am still sleeping ALL. THE. TIME. since surgery (23 days ago). For example, Friday night I was in bed by 7:30, slept all night until a little after 9:30 yesterday morning when I got up to have breakfast, was back asleep before 10:30 and slept hard until after two. Could have easily gone back to bed at 4:30, but forced myself to stay up until 7:30 again, when I went to bed bur read/prayed/played on my computer until nearly 10, then soundly slept all night again. I couldn't make it up in time for church but made myself get up (easily could have kept sleeping!) at 9:15 to watch second service online (turns out first service was just over and second service didn't start until 10:45, so I actually could have slept more!). After I post today's blog, I'm planning to go back to bed again. Here's the update I posted to FB this past Tuesday:
Home from post-op appointment. Doctor is very happy with my recovery. In fact, she let me cancel my second scheduled post-op and only come back again if I feel like I need to. She asked how I was doing and didn't even bring up hormones! (I was hoping to avoid added hormones as I really want to starve off new Endometriosis growth.) She supports that I have restarted my Metformin about a week after surgery and agrees that my body seems to need it, as I feel so much better on it. She said come back if I need to see her again, otherwise, I'm good to go. She found surprisingly little Endo but there were a number of spots throughout my abdomen (and she reaffirmed that with this crazy disease you can have LOTs of Endo growth with little pain or little with HUGE pain), including INSIDE my tube, several small cysts (typical of PCO) on my ovary and she said that while there was nothing terribly visibly wrong with my appendix other than incorrect positioning way down in my pelvis (and that the tiny portion they biopsied did not show problems in that one specific area of the organ either), based on my pain level changes I did a "very good job" in knowing my own body and asking for that to be removed! The sharp pain that was back last week is mostly resolving again and it turns out one of the largest areas of Endometriosis removal was right on that ligament, so it likely was post-op pain that was happening last week! I can resume regular activities in another month. My incisions are healing well . When she walked in the room, her first comment was that I looked perky and that I "did not look like I had just had major surgery." When I told her how crazy-much I'm still sleeping, she replied, "Good! More energy for healing!" (Not really the response I wanted! tongue emoticon )

Next item to share, our daughter stayed home from school on Friday. Wanting to help her feel better, I got creative and did a fancy job with her bowl of oatmeal, home cooked steal cut oats with strawberries, sprinkles of cinnamon and cloves, garnished with cinnamon sticks, served in a fancy flower-shaped bowl. I wasn't trying to work hard at cooking or put all this thought into fancy plating. I was just being a mom, trying to bring a smile to my sweet girl who felt rotten. And you know what? I not only did a good job with a great outcome, I really ENJOYED myself! It caught me totally off guard to try have fun, bring delight to my heart, by cooking and serving what I made, the very first time I have felt such pleasure related to serving food, since my strokes!!!

I'm reading an amazing book right now. (Inspired by the movie War Room that I hopefully get to go see with some ladies from Bible study on Tuesday!) It is called Fervent: A Woman's Battle Plan for Serious, Specific, and Strategic Prayer by Priscilla Shirer. I want to read large passages aloud to about 30 different people - it is that good!http://smile.amazon.com/gp/product/1433688670… If you are a Kindle reader, it is $7.99 for that device. 

So very thankful Rick Saake's answer to this was/is Yes! It is an easy decision to make, fine words to say, before the reality of brain injury (major mental, emotional AND physical hurdles to overcome DAILY) but he has stuck out nearly 4 years now and I am ever-so-thankful for his faithfulness through strain, stress and pain we could never have begun to truly grasp until it was upon us!

From last Sunday:
We missed church today. Got up, ready, and even into the church parking lot, only to see someone carrying balloons into the church. (I am HIGHLY reactive to LATEX and even going into a room that has balloons in it could send me to a hospital via ambulance!) Our student driver didn't even get to park. Rick simply said, "We are not going in there!" and directed him right through the parking lot and back onto the main road. 

I was disappointed as I haven't been out of the house in a week, but just getting up and ready, a quick stop for bagels on the way, then picking up a couple items from the store on our way home, I came home (back home by 9:30!) and slept HARD for over 2 hours! (Sad that I slept right through the internet feed of our services so I didn't even get to see those!)
Guess I'm not bounced back much from surgery yet. Counting it God's grace that we pulled into the parking lot at the exact time the balloons were being tak
en into the building so I didn't encounter another allergic reaction in my already stressed body!
‪#‎MyInvisibleFight‬ ‪#‎InvisibleFight‬ ‪#‎IIWK‬ ‪#‎IIWK15‬ ‪#‎LatexAlergy‬‪#‎WhenBalloonsAreScary‬ ‪#‎CrazyBody‬

I am posting further details over on my Given Me A Thorn blog if you want more details about my latex issues.

Last week I had 3 days in a row of scarily, badly choking on my own saliva again. Thankfully that issue is improving again!