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!)

Friday, February 27, 2015

Changing the Law

Friends, would you PLEASE take moment to help me? We need 1,000 petition signatures to even get law makers to look at the issue and currently have just over 200.

Please go to the link, add your name and share with others! We are trying to get a law passed simply to made the reporting and collection of data if anyone strokes within 120 days of a chiropractic neck adjustment (many, like mine, happy right on the table, but there are also times when neck adjustment creates issues in the artery that manifest as rupture and stroke many weeks later).

Right now chiropractic stroke is deemed "rare" but each individual case is locked away in private medical reports and no one has access to the statistics. We believe this is actually a fairly common occurrence, just nobody is gathering the stats! Please help us change this failure in accurate information.


Please post "signed" and/or "shared" on this thread as you take action so I can see what's happening where. :)

Tuesday, February 24, 2015

Anniversary Eve

40 months (3 years, 4 month) ago, my life was still normal. By late tomorrow morning, I will not be able to make the same statement. It is amazing how quickly life can change!

Last February I recorded this video sharing my story. Today I recorded much of the exact same script again (edited, updated and significantly shorted from 5 to 3 1/2 minutes) to submit it to the Neuro Film Festival and to be able to have an auditory and visual comparison of my progress over the past year.

This year's video.

Same basic script from one year ago, for comparison.

Something I noticed about myself today is that my eyes do not always both track when I read. I never knew that, but in this blooper outtake you can clearly see how my eyes initially tracked together, but after the first look away from words and then back again, one eye just stares straight ahead while my other eye is actually tracking the words. Wild!

Playing around YouTube today I discovered Jenny's story. Yes, we have the same name. She spells Jenny with a Y and my name is spelled Jenni with an I. ;) Yes we are both young mom stroke survivors. No this is NOT my own story, but I share it tonight because it is such a good visual documentation of the stroke recovery journey. I watched it and "cried" my way through that (felt all of the emotions of crying, even though I usually CANNOT get the physical release of actual tears now), feeling for Jenny and her family and remembering my own journey. My initial thoughts were to thank the Lord that I was "never that bad," then to realize, actually, yes I was.

Jenni Saake with an I (me!) taken at about six weeks after the strokes. No feeding or breathing tubes (still on soft foods and thickened liquids diet then)  but holding up own head and able to sit alone with moderate support. Eye remained this visibly paralyzed, causing over 60 degrees doubling of vision, for several months.

Our deficits may have been different, but my fragile life was just as precarious at one time. I couldn't hold my head up or sit up either. I had no trachea like Jenny (or Kendra!) because, against expectation, I was actually able to start breathing on my own with just verbal reminders, within that first week on a breathing tube. But I did have a significantly crossed and paralyzed eye. I never (other than briefly, for transport for the special needs shuttle from the main hospital to the rehabilitation hospital) needed a big wheel chair like that, in part because I could not even tolerate (nausea, severe vertigo, blood pressure drop, heart rate racing) being upright long enough to sit up in one - by the time I could handle being that upright long enough to use a chair, I had enough trunk and neck support for a standard chair. I had a feeding tube through my nose for the first several days, then we were able to go to an IV with no "belly button straw". I didn't use it long, but came home to a hospital bed too. I rode home from rehab in our car rather than an ambulance. I was hard to understand and didn't always make much sense (remember Mom "sitting on lions" last year!), but could talk later the very same day they removed my breathing tube. The intense similarities in our stories were learning to eat, swallow, control drool, physical therapy, cuddling kids from a hospital bed... This is going to be both HARD and amazing for you to watch too, Kendra!

Jenny with a Y (not me, but oh the memories!) - recovery photo documentation.

In considering the possible identity confusion of posting another Jennifer's story on my blog, I found this on Facebook:
Jenni with two Ns but an I instead of Y, throws a lot of folks. I guess it "should" either be Jeni or Jenny or even Jennie. I like to be Jenni though. grin emoticon Saake (pronounced like the two small words "say" and "key"), well, it is more common to get it wrong than, right, so we won't even go there!
I still can't get my camera phone to talk to my computer on a regular basis :( but if I can figure out a way around my technical glitches, I hope to start participating in #OneBeautifulThing each Friday. I know it is only a Tuesday, but here is a picture from last September (yes, that is a wild horse eating the lawn in our front yard - one beautiful thing about living in northern Nevada!), paired with a handwriting sample from earlier this month.


Tuesday, February 17, 2015

3 years, 4 months (almost)

Here's a beautiful picture taken this winter in Missouri by my friend Ruth Ann Dozier Branham. Sharing just because it is beautiful and makes me happy:

On one of my stroke support groups there was recently this chart posted:

I replied with, "3.5 here - I do walk with a cane for stability any time I leave the house, but I technically CAN walk (bounce off my own walls anyway) around my house without any help now. I can attend to pretty much all bodily needs on my own now though. Started at a 5.99, was a 5 for a few months, and was still a 4 or 4+ until a year or year and a half out!" 

I don't do family finances. I still sit, or very occasionally stand with grab bars, to shower. I cut 6 inches off my hair last month as it was to the point of not being able to care for it myself at all. I don't have a driver's license. But I CAN now plan and execute basic meals most nights, organize family schedules and health care needs, get myself safely in and out of the shower on my own, work on writing and VERY SLOWLY preparing a book manuscript for publication, stand safely at a hot stove to cook, execute fairly responsible sharp knife skills, carry a cup of water across the room without usually spilling (too much anyway), sort, wash and and wad (true folding is still rather hopeless) laundry, sing with about 80% accuracy of range, as long as I keep the tone and volume low, care for myself and children for extended time periods and without supervision, and so much more. As Kendra and I sometimes remind ourselves, "Not bad for a dead person!"

There was talk on the group about how this chart only seemed to address physical function. To several friends who are predominantly dealing with mental and/or emotional deficits, I wrote,"the cognitive and emotional battle is EVERY BIT as challenging as the physical one! If you had to give yourself a cognitive number from 0-6, where are you today? Where have you come from? How long has it been? I just said last week (using different scale than this) that I feel I am back to nearly 80% physically and about 70% emotionally/mentally now."

Out on the town, with friends, last September. I'm in the hat and holding the cane.
A rare unsupervised outing, though I still had to ask for a ride.
Talk continued on that thread, eventually hitting on people using the cadicapped parking stalls and restrooms when they don't need them. Right or wrong, this was my input on the bathroom issue: " I try to give grace to those who keep my legs crossed while I wait for them to get out of the one toilet stall I can use (not needed for size, but I DO need the hand rails still!) for four reasons: 

1. Before strokes, I used to fairly exclusively use the big stalls if I didn't immediately see anyone in need, due to truly severe claustrophobia. No I didn't "need" them physically, but I felt truly panicky in the smaller ones, like I couldn't breathe! 

2. There are LOTS of people living with chronic pain and/or other disabilities that aren't readily visable. Just because they aren't in a chair doesn't mean they were not in need of that stall too. Looks can be deceiving. Unless I know the details of their story, I can't presume! 

3. Sometimes people just don't think - it is not out of intent to hurt another, it just didn't occur to 
them. I've gotten to the point that if someone offers me an open stall because they see I'm waiting, in a normal volume of voice I just say sweetly, "No thank you. You go right ahead. I'm waiting for the big stall because I need the hand rails." This let's the person in the big stall know I'm waiting (except for the other day when I waited a LONG time and the user nearly smashed me with the door as she flug it open to come out - had her earbuds it while using that stall as a changing room) without being rude, and gives some education, something to think about, for all that might be in the room at that point (especially if I have to turn down empty stalls several times before I get to go in). 

And 4. I eventually might ditch my cane but still need the stability of those rails someday and then I would suddenly become the seemingly fine looking person who was taking up someone else's potty spot. With a cane, it sure would be nice if the smaller stalls that can't fit a chair still had rails so I wasn't taking the wide spot, but as most don't, that's what I still need to use." At this point, I would gladly take small stall claustrophobia if it mean I wasn't taking the big stall away from someone who might need it more than I did. After enough MRIs, those regular sized stall look absolutely mammoth now.

This in no way negates the fact that if someone is in a wheel chair they have absolutely NO OTHER OPTION than the handicapped stall, so I would ask that if just choose the big stall for no particular reason, please think about your other options. It is just my perspective from both the NEED and the pre-stroke side that helps me try to understand the choices of others. Also, a mom with little kids usually needs the big stall too, in order to change a dipper, fit a stroller and/or keep her toddlers in sight! As I've gained fairly regular bladder control, waiting is much less of an issue now than it was a year or two ago, but I still wish bathroom designers took the time to design their bathroom with infant changing tables NOT taking up the one and only wheel chair accessible stall in a public restroom! Another tip for public restroom designers, put handrails in more stall while you are moving the baby changing station out of the handicapped stall, please.

December, 2011, not quite 2 months post stroke

Picture, Sept. 2014, about a month shy of 3 years.
Handwriting, February, 2015, 3 years, 3 1/2 months after first strokes.
January, 2015
Taken "mirror image" with my webcam. so my left (more stroked side) is actually on your left in this picture.
As you can tell, my face was never terribly stroked-looking (my eye sure was!) but, while it is a day-to-day thing (the January picture was a particularly good day) there does to gain facial improvement as well as all the rest. It is still a week before my 40 month mark, but as this post is primarily a progress report, I am going to call it my 3 year, 4 month update.