My Health: ME/CFS, EDS, young strokes
Are you specifically looking for my stroke story? If you want to start directly there, jump down about 6 paragraphs. Look for the bolded line about October, 2011, then back up one paragraph for a little more context.
I've lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since my teens. I am not cured, but thankfully my illness is (current as of early 2021) well-managed with rest, routine, and medication.
Having lived through decades of remissions and relapses, sometimes being so sick that it feels like the act of breathing is more demanding than I can muster, I've spent seasons whimpering in bed without the strength to even roll over. Even on "good days" ME/CFS is to just "being tired" what a hurricane is to a shower of sprinkles. Think of a time when you had a nasty case of the flu with aches, fatigue so severe you couldn't think straight, system dysregulation like unanticipated blood pressure drops and chills and fevers. Even at my amazing level of remission, my body still does such crazy health stuff that one of my doctors recently noted how my body presents with many quirks that are being seen in cases of long-haul COVID.
My personal favorite illness support resources are sweet Lisa Copen's Rest Ministries website and virtual support groups, as well as books - audio versions are my preference, though I do like to highlight and underline in paper copies too, so both a physical and an audio book together is my greatest ideal - and ministry by Joni Eareckson Tada.Chronic illnesses like ME/CFS are common among "zebras". In recent years, I've also been symptomatically diagnosed (to quote my doctor, still an "impressive" 9 out of 9 on Beighton scale, even when not diagnosed until a few years before my 50s, when my mobility had already begun to notably decline) with the connective tissue disorder Ehlers-Danlos Syndrome, hypermobile variant (hEDS). A full battery of genetic testing failed to find any EDS-linked genetic mutations, thus I have a clinical description of my hypermobility, but not a cause.
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| JenniferSaake 1 year before strokes |
We likely would never have known to consider EDS at all, were it not for my severe vascular injury in 2011. Due to the events of that year, I want to publicly reiterate that, though our family has since undergone multiple rounds of testing at several different clinics and genetic labs, NO MUTATIONS in the genes related to the vascular variant (the only form of EDS linked to arterial dissection) were ever found. I DO NOT HAVE vEDS! My diagnosis is hEDS, meaning that my joints are hypermobile ("double-jointed") and can be easily overstretched.
On October 25, 2011, my writing and online activities came to a screeching halt the morning I suffered an arterial dissection during chiropractic neck manipulation. I was 39 years old and had spent almost a decade homeschooling my living miracle babies who were 5, 8, and 11. I endured two catastrophic brain bleeds while still laying on the chiropractic adjustment table, instantly resulting in unrelenting dizziness that put the wildest carnival ride to shame, a seizure, total blindness, slurred speech, then loss of consciousness.
Search "chiropractic stroke" to see that this kind of event happens way more often than it should. You will find some celerity survivor and victim names pop up in your search! Though the site has been taken down since I discovered it a year or two after my strokes, in one large network of chiropractic stroke survivors and victim families, I read that their data collection of personal stories led them to believe that strokes happen an average of about 1 out of 40,000 chiropractic neck adjustments, or an estimated 1 to 3 times per day in America.
Our vertebral arteries actually travel through our top three vertebrae bones. Our arteries are like rubber bands stretching with each vertebral joint movement. A forceful, rapid yank on a rubber band across a hard surface will eventually cause the band to snap. (I did a demonstration years ago showing an alternative stretch my physical therapy taught me for gently achieving neck pain relief without rapid rotation. Sorry the video is shot sideways!)
Not having vEDS (where the "rubber band" is already compromised), the type of arterial injury I suffered cannot be pinned on my collagen makeup. Once the artery had already started to rip, the severe extent of my tear likely developed rapidly because of how far my connective tissue allowed my neck to hyperextend during rotation. Too bad I had no idea I had a connective tissue disorder when I walked through those doors of that office. Many zebras only find out after a catastrophic physical event leads to intensive investigation. I now suggest that anyone who visits a chiropractor avoid neck adjustment (even with a little "activator") because a stroke can happen to anyone at any time, even if you have safely received past adjustments. (I had received chiropractic treatments for well over twenty years, since age 16, so this was not a "first time" adjustment for me, as many have wondered.)
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| JenniferSaake 1 month after strokes |
Every doctor, nurse, tech, radiologist, or physical therapist who has explained the mechanism behind chiropractic VAD and stroke to me, has seen at least a few prior chiropractic stroke survivors during their careers, especially the radiologists (who read scans of both survivors and chiropractic stroke fatalities). I was not expected to be alive when the ambulance got to the hospital. My family was told I wouldn't make it through the first night... couldn't survive three days... wouldn't last a week... was "un-rehabable" and needed to live out my final vegetative days in a nursing home. If I ever got to go home again, I would require round-the-clock nursing care 24/7. I had no chance of walking again. The depressing list of their anticipations for me goes on and on.
Initially I was unresponsive for several hours, during which I was intubated in order to keep me breathing and, due to continuous projectile vomiting, to keep my airway clear. I spent nearly a week in ICU, living through a nightmare that felt like intense car sickness combined with severe food poisoning, while trapped on some non-stop sadistic combination of mechanical bull, twist-a-whirl at the fair, and roller coaster rapidly flipping me around upside-down in disorienting circles. My entire left side was totally unresponsive, my left eye paralyzed pointing in toward my nose, and my right-side reflexes were sluggish and unpredictable.
During my second week, just as I regaining core strength to enable me to sit up in bed without being held up by two nurses, was starting to learn to tolerate the continual spinning sensation, and my nausea was beginning to respond to medication to keep it somewhat quieted, my physical therapists tried to help me learn to stand and take a few steps with my walker. During this attempt, I experienced one of the two most horrific events of my recovery, a sympathetic storm that again left me vomiting with the same ferocity as the original strokes, sent me back into the noisy and coffin-like MRI tube to be sure there was no new damage, and caused me to spend one afternoon/evening totally locked in: unable to speak, communicate in any way, or move any part of my body other than my right, now color-blind and blurry, eyeball, only when I could manage to open that eye.
Within my first few weeks of ICU and neuro hospital units, I also experienced 4 more strokes, as the shredded artery struggled to heal (as it does on its own in 90% of simple dissections) and kept throwing new clots. Two compassionate-care (non-FDA approved, but emergency-authorized because I was dying anyway) surgeries on Thanksgiving Day finally stented the tear in the artery and stopped further bleeds or clots. (My ICU recovery from those surgeries was the other of my "worst two recovery experiences" for reasons I do not care to relive here.) Doctors didn't want to waste the resources on such a hopeless case, but my husband FOUGHT (twice!) for me to be given a bed at a rehab hospital.
I came home 50 days later, mostly wheelchair bound (but already starting to use a walker a little), legally blind, profoundly hearing impaired, incapable of caring for my own personal needs (thank you for all the toileting, showering, and feeding, Rick), but alive! Recovery is ongoing, but the earliest days, weeks, month, and first two years, were brutal and I often really wished I had died. With many physical deficits, but worse emotional (PBA) and cognitive issue due to six distinct areas of profound brain damage, depression was perhaps my hardest battle. Short term memory issues (often forgetting what topic I was trying to talk about before even completing my first sentence) were hard on our entire family.
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| JenniferSaake homecoming day, 2011 |
For the past several years, I have walked with balance issues and a limp; unaided at home, with a cane or walker for most public outings, and only requiring a wheelchair for extended ventures or in large crowds. I independently shower, dress, and care for personal needs. I swim. I have learned to use special needs transit options to help fill the void left by loosing driving abilities. I live by my phone alarm with reminders set all through the day to help me accomplish routine and repetitive tasks I would otherwise forget. I know that 2+2=4 again. I type one-handed. More because of my emotional and spiritual healing, than because of these hard-fought cognitive and physical gains, I'm (now) able to thank God that I'm among the survivors! I still have goofy memory and unpredictable emotions and emotional responses, but not anywhere like as bad as these were initially.
Brain injury is devastating to marriage! Nearly a decade later, we are still trying to feel our way and figure out various aspects of our relationship. But we truly enjoy one another again, have (usually) learned to laugh at my crazy PBA reactions, physical lack of control, and interesting logic and reasoning strategies. I can't count how many times I've slugged or deeply scraped Rick my finger nails while trying to gently move my stroked arm, sometimes in the dead of night when he is sound asleep. Because we both took our promises to God and to one another very seriously, we have clung to God even when we could barely manage to be around one another, at least one of us staying grounded in truth at all times. (For my many friends who were solo in a marriage where your spouse gave up, please know my heart aches for you and I pray for you often.) Our marriage is far different today that it was a decade ago, pre-stroke, but by the LORD's grace we are determined to persevere together. Having celebrated 19 years just a couple of months prior to my strokes, I know without a doubt that our love is far more genuine, mature, and deep, even in the hard seasons, as we look toward 29, then 30 years.
Due to slowed cognitive function, the limited household paperwork I now manage takes me 3-10 times longer than it used to. I no longer keep the checkbook or pay family bills. (I've been working on this single blog post, several hours each day, for nearly a week now.) I'm slow, but prepare 4 or 5 family meals per week - just please don't ask me to double a recipe as the results can be "interesting" enough trying to create simple dishes I'm made my entire lifetime.
With six areas of my brain destroyed, relearning emotional processing and interpersonal communication skill are still my biggest challenges. My hearing is now only a bit muted, so I no longer classify myself as partially deaf. My eyesight isn't perfect, is still a bit doubled especially when looking over my shoulder - I've embarrassed myself more than once by "winking" at folks when by closing just one eye in attempt to focus - but my sight is so improved that the neuro-ophthalmologist, that was anticipated to be needed at east yearly for the rest of my life, won't even see me anymore. I guess that is what happens when your survival years so far blow your life expectancy out of the water that doctors can no longer figure out what to do with you. As my stroke-survivor friend, Kendra, and I like to say, "Not bad for 'should-be-dead!'"
My brother helped me learn to start navigating the internet again in 2012. I started the Stroke of Grace blog, processing my recovery thoughts, emotions, spiritual, and physical journey. With severe memory issues, I needed to document my recovery. Over nine years later, the blog now hurts me more than it helps. I am putting my Stroke Of Grace blog to bed, at least for a season as I decide what information I want so publicly accessible any more.
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| JenniferSaake 7 1/2 years after strokes spring 2019 |
I will likely recycle the "Stroke of Grace" name someday because it so beautifully captures the story. I have never abandoned the conviction that I am a sinner, saved by grace, through faith in Jesus Christ who died in my place, then bodily rose to life again, and is now seated at the right hand of the Father. By His death and resurrection, my sins that separated me from God were fully atoned for, allowing me to one day stand in His perfect presence without shame or fear because I confess Him as my God.
With thought processes impacted by brain injury, I followed some theological tangents I am no longer in agreement with. I added *sensuality (feeding the senses) to Biblical Truth. With feedback and counsel from my pastor and my "not running in vain" encouragement and discernment/review team, I am unpacking my spiritual back story, exposing lies in light of God's Word, in my upcoming book. As I continue writing, please join my small gathering of like-minded *faith contenders at facebook.com/DeceptionUnmasked.
All Scripture on this post is quoted from the English Standard Version (ESV) as posted at Bible Gateway.
My books:
Please enjoy a free pdf version of the introduction, my personal infertility / loss story, and the first chapter of Hannah's Hope at www.hannahshopebook.com/media/HannahHopeChapter1.pdf
Visit me:
main social media page - https://www.facebook.com/HarvestingHope
Specialty pages:
infertility / loss page - https://www.facebook.com/HannahsHopeBook
stroke - https://www.facebook.com/StrokieGal
current book project on church deception - https://www.facebook.com/DeceptionUnmasked
Pinterest - @InfertilityMom
Twitter - @InfertilityMom
Instagram - @InfertilityMom
Please enjoy a free pdf version of the introduction, my personal infertility / loss story, and the first chapter of Hannah's Hope (written pre-stroke) at www.hannahshopebook.com/media/HannahHopeChapter1.pdf .
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