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...

Wednesday, May 15, 2013

Inevitability

I saw my neurologist recently. I asked him about the fairly intense variations of pain that I feel on my entire left side (and occasionally in waves on my lesser-stroke-impacted right as well) now, and have dealt with in varying intensity (it has built over time), since the first strokes. His answer was not any surprise at all, simply, "It was pretty inevitable."

(He offered me various nerve and pain medications, but since I have been allergic or in some other way pretty reactive to everything I've tried, I just keep some medication that I have fairly well tolerated, on hand for my very worst pain. If I absolutely HAVE to take it I also take Benadryl, just go to bed, keep the EpiPen handy, and know I will at least hive out if it is my best case reaction, so basically I just need to "tough out" the pain otherwise. I keep reminding myself that before pharmaceuticals, in people that didn't know about herbs, also a real potential danger zone for me, people didn't even have this option of emergency medication.) 

He went on to say that with the extent and specific locations of my strokes, "The pain is an inevitable result, just like it is pretty inevitable that your left arm will eventually lock in against your chest and become totally unusable."

Oh, really? I was startled by this prediction and kind of don't know what to do with this news.

At first I didn't think much about his pronouncement, I guess rather in a state of denial. Then came the weight of the inevitability, as my husband put it, "We need to know these things so you can prepare for the future." The doctor didn't say so, but for some reason the 3-4 year marks are my mental picture of when this might happen by.

Then came anger and a sense of "why bother," asking why I had worked SO HARD this past year and a half to restore large motor function of this arm (we have also worked on fine motor skills, but they have mostly refused all efforts at rehabilitation, so please don't hear anything I saw here as "If you only try harder, you are garenteed recovery!" since that is totally not what I'm saying, just processing my own thought right now), if I am only going to loose it all in the end anyway?  If I am to live with only one functional arm, isn't my time better spent in learning to perfect one-handed function, rather than trying to coax function from a reluctant arm that is destined for total loss of functionality anyway?
Ever wonder how to open a banana with just one hand? Pinch the "wrong end" and it opens right up! :) 
- Picture from Pintrest, tip from my husband!
I talked to my speech therapist about this (the first professional with stroke experience I saw after this appointment) and she was rather SHOCKED that he had actually given me this news, especially in light of my miraculous progress thus far. She said that if I weren't continuing to push myself so hard, or had refused therapy at all, she could totally see how I likely would have not have ever regained the limited use I now do have of my arm, thus locking it into non-functionality, but she has never heard of a "bell curve" in stroke recovery where a person fights back, regains something, then looses it again anyway.

Maybe my doctor was having a bad day or I caught him at an unguarded moment? Maybe he was just discouraged that one area he was hoping I might avoid was a full-blown reality now and he was voicing his concerns for the future? Anyway, I now know what he really believes and I guess my rebellious side is flaring now.

Will I eventually loose (again) the total function of my arm? Maybe. Maybe not. Only time will  tell. But the "why bother" is answered in that if I am going to loose function, giving up on therapy will only quicken and insure that outcome, while the continued push is my only possibility of proving my doctor wrong.

I met a lady at the bank last month. Her brother had also stroked in his 30s (I believe maybe 6 or 8 months before I did). She said he resisted all attempts at therapy. He is still in a wheel chair and not as far along in recovery. I pray for him, and as I told his sister, totally believe there is still physical reason to hope if he were ready to commit to therapy even now. But it was good inspiration for me to see what a year and a half of hard work (and God's grace!!!) has actually yielded.

Pintrest

My ST did remind me that it was equally inevitable that these strokes would kill me. When I didn't follow the doctors (plural!) expectations there, I was "NEVER" going to walk nor live independently again. In the words of Inigo Montoya, "You keep using that word. I do not think it means what you think it means."
 
From Pintrest

(I like this quote too. It seems appropriate!
Westley: Why won't my arms move?
Fezzik: You've been mostly-dead all day.)



And on the topic of recording this journey:
Count Rugen: [calmly] As you know, the concept of the suction pump is centuries old. Really that's all this is except that instead of sucking water, I'm sucking life. I've just sucked one year of your life away. I might one day go as high as five, but I really don't know what that would do to you. So, let's just start with what we have. What did this do to you? Tell me. And remember, this is for posterity so be honest. How do you feel?
[Wesley cries and moans in pain]
Count Rugen: Interesting. 

(Quotes pulled from http://www.imdb.com/title/tt0093779/quotes)

Pintrest

Kendra, mineral makeup isn't keeping me clear from deep, painful, cystic acne anymore, so I might have to give coconut oil a try too (thanks for the suggestion!), but the minerals (without bismuth or cornstarch) still do help a lot. I have a magnifying mirror and when I get really close, especially on my chin, and somewhat on the rest of my face and neck too, it looks like someone has drawn a line right down the middle of my face. The less stoked side is realitivly clear and smooth, while the left side is all bumpy and rough with underdeveloped acne, interspersed with the deep, nasty stuff. I have very little "regular" acne now, on either side of my face, but the yucky stroke-related kind is almost exclusively relegated to the one side now. I have some scars and discolorated areas (cover-able with makeup for the most part), and still get some renegade junk on my face (mostly nose, not often cheeks nor forehead now, though these can still happen) or neck or shoulders, but the constant patch seems to be on my left chin and sometimes beside my mouth or on my upper lip now. So I want to offer you hope that (as we already had concluded) there is no doubt that skin is impacted by strokes too and it really can improve! {hug}
 “I wait for the Lord, my soul waits, and in His word I do hope. My soul waits for the Lord more than those who watch for the morning …” Psalm 130:5-6

14 comments:

  1. Blessings and love to you dear.

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    1. Praying for you too. Thanks for the faithful friendship. I'm sorry the effort is rather one-sided these days but I do cherish your words, Denise!

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  2. Jenni, your doctor has no clue what he's talking about your arm locking up, thats only if you do absolutely nothing to prevent it. You keep passively stretching it out with your good arm and other exercises and it won't lock up. Your spasticity may never go away but the contracture he is talking about is not inevitable. Of course the other possibility is that your doctor is trying to make you mad.
    'I'll prove that idiot wrong and recover!'
    Dean

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    1. I have moved to the "I'll prove you wrong!" reaction. But if I had stayed in the "Why bother?" phase and given up??? Dangerous game if that was his hope! (Thanks for the encouragement about the arm, Dean!)

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  3. Jenni, read this on your pain, your doctor should have known about it.
    http://www.newswise.com/articles/weeks-after-stroke-some-patients-develop-chronic-debilitating-pain

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    1. Thanks. I just updated the post (the word "pain" in the first paragraph) with this link and added a second paragraph about the options he offered. I'll have to ask about magnetic or electrical stimulation to the brain. Hadn't heard of these options before...

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  4. Jenni,

    Remember, you are a patient of the Great Physician who is Ominpotent. He has NEVER let you down or told you anything false.

    Michelle B

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  5. I agree, you are mad and determined to prove him wrong! You go, Jenni!

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    1. Grrr... :P (What I say about his prediction.)

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  6. I hope Susan sees all your Princess Bride quotes!

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    1. I need to flag this post for her. I was thinking the words with a "lisp" while I wrote them, thinking of her. ;)

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  7. The princess bride quotes made me laugh. As for inevitable, he must have dealt with noncompliant patients today. I've never heard such a thing.

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    1. Maybe so, Kendra. This is the same doctor who, the day I walked into his office with a walker rather than riding a wheelchair, told me he was "never so happy to be proven wrong" as when his patients did things he thought they would never be able to do.

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