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.

Jenni is currently writing more books and stays active on both Facebook and Pinterest. 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 equips you to send any monetary assistance as well, this is a significant added blessing.

Friday, January 22, 2016

Reclaim

It has been a busy start to our new year.


My hubby has given notice at his current place of employment and starts a new job in early February.


Our daughter got braces yesterday. I'm not allowed to post an "after" picture until after she does. She turns 13 on Monday and will be setting up social media accounts that day.


Between now and then, our baby hits double digits tomorrow! Yes, this is the little boy who was only 5 when he nearly lost his Momma!


At the end of last year I send Kendra a little package and proudly included a fairly long (few paragraphs) note. It took me an hour to write and package it all, so I'm still slow, but I wrapped it all by myself and my writing looked fairly nice. Kendra even replied back that my writing no longer even "looked stroked" at all. I know what my writing looked like before and still see evidence of deficit now, but her compliment meant a LOT to me.


Speaking of hands, here's something new I tried this past week, sewing on patches! No where near the skill I had when I hired out to sew military patches onto uniforms, for pay, but I managed to do two patches this week, with two styles on stitches.

 

Kendra's comment about my handwriting also got me thinking. Kendra's more profoundly injured hand is her right, previously dominant hand.  I was/am also right-handed, but my more strongly stroke-impacted hand is my left. She had no choice but to force more life back into her right hand and learn to do a lot of things, like writing, with her left, and does an amazing job at retraining a non-dominant hand! I took a lazier approach and, while I've worked to get large motor use out of that left arm, have been content to learn most fine-motor skills with just my right, typing, peeling a banana, using toilet paper, writing, kitchen work even tying shoes. Yes, writing looks pretty nice again (just slow, ask any checker when I sign a credit card slip!) but I use the hand that's been used since elementary school!


In honor of Kendra, I have taken on coloring this year. The twist? I'm doing an entire, more complex designs coloring book (less the one picture I forgot and was amazed at how well it went until I noticed I had done it all right-handed, the red flower "numbered" with the letter R, for right) with my non-dominant, more profoundly stroke-impacted LEFT hand. 



I am determined to force more fine motor function out of that injured limb, so if I must destroy an entire coloring book in the process, so be it! I certainly could not have had these good of results earlier in the process, but well into my 5th year of recovery, it is time to try.


I have been doing one a day, every day, until the last two days. I've taken a couple days break and plan to get back on track this evening. 


These pictures are TINY (photo comparison with dime and quarter),


The entire book is only 8 or 9 inches tall, yet each picture takes between 20-40 minutes for me to do, depending on size, number of colors used, amount of detail, etc.


I've experience several strange phenomena since setting out on this task...


The first thing I noticed, within the first few days, was a significant uptake in left-handed ataxia, a symptom that has gotten fairly quiet in most instances, over time. Basically, the left hand jerks spastically and uncontrollably, especially when trying to focus on a fine or specific movement.


Over the next few days I noticed much more clumsiness, such as frequent tripping and general mis-step (my husband wanted to know if I was dancing when I was simply trying to take a couple forward steps and did a little jig backward and to the side in trying to gain and keep my balance) and fatigue. Oddest of all, my mouth numbness, that has never fully resolved, grew quite strong again. 


After a couple weeks, I was noticing loss of stamina along with all the rest. I started thinking about early childhood development, how when a young child is learning a new skill, say skipping, a prior skill, maybe numbers, might temporarily regress. Thinking of this, I am thinking all theses "symptoms" are not of concern, but signs that my brain is putting so much energy into wiring and learning to master a new skill that it is taking a little vacation in some other areas right now.


When I got to Jan. 19 and saw my coloring progress and number writing starting to slip too, I knew I was maxing out and needed to take a little break. By not coloring the last couple of nights, my mouth feels more normal-ish sensations again, but I still made the decision to skip physical (water) therapy this morning as both legs were noticeably ataxic.


You can see right hand (5 - 10 minutes) pink flower marked R and why I needed a break by 19.


Thinking of skills changing this month, I think it is possibly that my left ear my, mechanically, be hearing a little more than just a few weeks ago. I specify mechanics because my brain doesn't understand the information transmitted. On several recent occasions I'll "hear" a question or statement "across the room" and not realize it is a conversation intended for me, that someone is actually rather near my left ear and talking to me. The difference seems to be that I wouldn't (I don't think) have heard it at all before, now it is there but seems very distant and impersonal and I don't recognize I should respond if I haven't been looking at the person already. I don't have any idea what to make of this recent change.

Me this week, with my almost-10-year-old.

Speaking of water therapy, I thought you might want to see what I wear.



I felt so very exposed in the traditional style suit shown on the video interview I did just over a year ago, that I made the style change soon after. I have already worn through one suite and was going to wait for a new one until I reached my next weight loss goal, but that suit literally fell apart on me just after the first of the year (two hours of chlorine each week is tough on swimsuits!) so this is my latest.


A friend introduced me to her son last year, an out-of-state pastor. She briefly told him my story when we met. "I've heard of you!" he exclaimed. I'm used to being "known" in the infertility and pregnancy loss worlds, but this was a first in the strokie world. Hmmm. Just hmmmm.

Saturday, January 2, 2016

Facebook Updates, Plans

While I had a couple of quiet weeks here on the blog, finally broken on New Year's Eve and New Year's Day, I was still sharing my heart on Facebook. Here in a collection of some recent posts there:


From mid December - More stokie fun. I've been fighting a cold since Saturday. Came on hard and fast enough I was too sick for church Sunday. Monday seemed a little on the mend but chest and ear were hurting. Yesterday I woke up really bad and called the doctor. First available appointment was for today. I actually got to feeling really good by evening and thought I had called prematurely and would need to cancel this morning. Had a rough night and bad voice again this morning and went on in. Lungs are full of congestion, especially the left more-stroked side. Apparently that lung is too compromised to clear itself - joys of stroke paralysis! So antibiotics and strong codeine-free decongestant on board. No wonder I wasn't staying improved whenever I started to seem to be getting better. Back to my post-stroke breathing exercise tool, lots of fluids and as much rest as I can get this week.


Physically, I feel nearly 100% recovered from September's surgery. The tummy scars are still rather red and puffy but not oozy. Since the little skin biopsy (negative for skin cancer) from June is still red and tender and even still oozes at times, I think these are healing wel! They are no longer sore unless pressed on directly. The endo pain and ovary and appendix area all feel at least 98% (probably 99) better, hardly ever even a twinge of issue there!!!
I'm up most night with some wicket hot flashes, so sleep improvement would be a blessing, but I'll take this over the pain, hands-down!



CFS-wise I'm feeling rather run down from the holidays and a recent doozie of a lung infection too, but I'm over the congestion, breathing better, and overall CFS I am feeling a significant amount of improvement between Metformin, Valcyte, getting those painful parts pulled out in September, and going wheat-free for a good 2-3 months now. I would say that today, a run-down season, I'll about 65-70% in the CFS area. The wheat seems to have made the most significant improvement in the area of headaches!



I want to talk with my doctor and may try cutting back on my anti-depressant a bit more in 2016. I KNOW I still need some help in this area, but I am seeing more and more reason to believe that with PBA (emotional processing issues from stroke) that taking anti-depressants MAY be tied to my frustrating inability to cry. When kids are back to school and schedules settle, I try to experiment with dosage a bit - please pray for our whole family to have wisdom and grace in this!


photo by Wendy Hagel Heinek
words by Adam Smith and Stephan Sharp
design by Tanya Leigh Oakes
My hubby got me some bone conducting ear phones for Christmas, to hopefully bypass all the confused and damaged area of the mechanics and confused brain wiring of my ears themselves. I tried them tonight. I guess I expected to somehow "feel" vibrations or something. I described to my daughter that I actually DO hear a lot more, I just have to retrain my brain now to understand where I am hearing from. Strange to hear through my face rather than my ears! I described it to her as the strangness she would feel if she suddenly started hearing through her nose. She didn't believe me until she tried them on herself and then said that was a really good description! I'm limited to bluetooth devices, but the gift of hearing is a pretty amazing gift! Rick Saake, that you so very much!!!


Used three times successfully. Can't wear long term because they cause my head to hurt after very long (trigeminal nerve), but right ear/face hears MUCH better and even left side has some notable improvement. Both calls were under 5 minutes, so this still isn't a total fix, but will make doctor phone calls so much easier!

photo by Wendy Hagel Heinek
words by Avalon
design by Tanya Leigh Oakes
I've been having intense knee pain for at least two months now, especially in my stroked leg. I got orthotics (insoles) this week and already love them! They took a couple of days to learn to walk in, I felt more tottery and off balance at first. Within the first day, the left knee joint was already feeling much improving. Today, the muscles around knee are rather angry because they don't like being told to act differently than they have been, but I think this is good!

photo by Wendy Hagel Heinek
words by Avalon
design by Tanya Leigh Oakes

Just after Thanksgiving, it was discovered that my mom (my primary driver)'s macular degeneration, that has been "dry" for years, decided to become "wet," thus accounting for the rapid vision deterioration that she had been experiencing over recent weeks. We spent 4 hours of her birthday (one week before Christmas) seeing a specialist and getting her pre-screened for a level 3 research study (medication already proved safe and effective, just trying to determine timing of dosage effectiveness). She was the only person screened in her office that day (out of 5) that was accepted into the study. This study assures she will receive the treatment she needs, will have her un-studied eye treated with already FDA approved treatment if she develops wet degeneration in that eye, any time within the next two years, and will even have a payment for her participation that will cover the next year of gym fees! She will receive monthly injections (or psudo-injections when the study spreads out dosages but needs to keep her thinking she has been injected) directly in the eye, every month for the next two years of study enrollment (then ultimately for the rest of her life, but perhaps will be able to have them as infrequently as every 3 months, depending on what this study concludes). She has already had her first injection and said it was unpainful, with the strangest part being watching the fluid flow into her eye. It was very dry irritated the day of injection, quite red the next day, and only slightly pink (allergy eye look) by day 3 when she was already starting to report some vision benefit.

It is my prayer goal to finally get my manuscript finished and published this year, please God!

Must Read! Just Drop The Blanket: The Moment You Never Noticed In A Charlie Brown Christmas

My new leggings, sold by my friend Tami. Yes, those are BEARS all over the legs! :D
This picture collage video, made by my amazing hubby, Rick Saake, was from 6 years ago, 2 years before my strokes, while I was occasionally using a wheel chair and undergoing weekly IV infusions (thus the bag you see hanging off my left arm in a few pictures) for unrelated-to-the-strokes health issues. Highlights of that year included our daughter's baptism and winning an RV rental for a week-long road trip to Monterrey, California and the Redwoods.  I'm so thankful that we had this experience, these memories and pictures, when I was still capable of being an active participant!
https://www.youtube.com/watch?v=TTSiIiz_lcc

Yes, I still need therapy too, but I'm trying to figure out how to set up a sewing machine again! I bought a beautiful sewing table this week for next-to-nothing at the thrift store (yeah Savers! ;) ) and my dad is trying to figure out how to retrofit it to fix my old machine while my mom and I take on a furniture refurbishing project. I want to write, to take up adult coloring (going to try with my non-dominant, more-stroked hand, to encourage fine motor skill, so it won't be pretty at first, for sure, get back to hand stitching like cross stick, and take on basic machine sewing (like mending ripped straight seems) again. Big dreams for the coming year! Wonder what I'll actually manage? 

 

Pre Stroke Family Memories



This picture collage video, made by my amazing hubby, Rick Saake, was from 6 years ago, 2 years before my strokes, while I was occasionally using a wheel chair and undergoing weekly IV infusions for unrelated-to-the-strokes health issues.  I'm so thankful that we had this experience, these memories and pictures, when I was still capable of being an active participant!

Friday, January 1, 2016

Yearly Words



I introduced my 2016 Word Of the Year last night. Here's a review of my 2015 word and year. (I forgot to mention that a large part of 2015 revolved around tummy pain, surgeries and recovery. Glad to leave that behind in last year!