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!)

Tuesday, September 25, 2012

Stoke Resources

The main post today is my 11-Month Update.

Because this list has grown so large, I have moved my resource list to its own page as of July, 2013. Please visit blog-page_8.html for current version. Thank you. :)

As a personal resource, I just was wanted to start listing some other stoke, either personal stories or other websites and books (especially Christian-based and/or young stoke survivors) I'm coming across, as I had such a hard time finding them early-on and can maybe save someone else the time, effort and frustration of searching too. I expect this to be a continually growing list as I add in future links.

I'm being really brave here. I've been painfully camera shy, but I so wanted to see other's stroke pictures, so here are mine. (Added Nov., 2012 - I still hate the camera!

 Blogs and Personal Stories

He (God) comes alongside us when we go through hard times, and before you know it, He brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. ~ 2 Corinthians 1:3-4 (The Message)
How Jenni's strokes offered a window to Heaven. I have made several stroke friends through this blog and I ask you to please don't let anything I post discourage you if you are not there. I know I am blessed not to face some of your challenges (I can't imagine being non-verbal, especially for months or years, for example!), but even if we aren't on exactly the same course or speed of recovery (remember, timing is unique for each person - much of what I do today, I couldn't have dreamed possible six months ago!), there are likely some things in my recovery journey you may find yourself thankful to not be facing as well! I never want to hurt you by sharing my miracles. Please don't hesitate to share your progress (or frustrations at your areas of challenge) in my comments either!

Hope Heals - Katherine Wolf, brain stem stoke, April 21, 2008, age 26

Kate Adamson - double brainstem stroke, 1995, age 33 (includes information on her amazing book that I had read even before my own strokes, and hungrily re-read after)

Kendra's husband, Scott - Kendra's earliest days of recovery, starting April 15, 2012
Kendra in her own words - my dear friend, blessing and "stroke buddy," multiple brain stem and additional strokes, age 35

Maggie Youel - left hemisphere strokes, April 16, 2012, age 20
Here's a video of Maggie doing hand therapy.

The Simple Wife - Toben and Joanne Heim (mostly Toben) blog about family life after her January 11, 2011 stroke (I think age 39?).

My friend, Becky Gray. Her blog after a Jan 29, 2003, severe car accident causing traumatic brain injury and stroke during surgery (I think in her 20s?).

Hope Out Loud - car crash lead to near fatality and traumatic teen brain injury, but God is still praised.

car crash caused stroke, age 20, and electronic walking video

My Stroke of Luck  blog. "On March 14, 2011 I had a hemorrhagic stroke, just 2 weeks before my 49th birthday."- Jan Gomez Burkhar

The Stroke, blog post about how one 46-year-old woman slowly recognized the signs of her stroke even when the first hospital did not. Great explanation of stroke warning signs.

Dean's Stroke Musings

5 Years After Stroke, one man's story

18-year-old has a stroke from birth control pills, causing blood clot (radio interview)

Books, Movies, Media

My Pintrest stroke page is filled with more resources, stories and stroke-related thoughts. You might also find my therapy page to be a little bit helpful. My Facebook page is intended to be educational for the general public to be aware of strokes, but also contains a few personal stroke-related thoughts at times.

The Stroke of Grace (not mine, I just heard of this one and have yet to personally investigate), testimony of former NBA player Juaquin Hawkin (novel, 2012)

A Stroke of Grace: For Those Who Suffer and Those Who Care Strokes (again, not mine and I haven't read yet),David Loren McKenna and Patricia McKenna Seraydarian

A Stroke of Genius: Messages of Hope and Healing From a Thriving Stroke Survivor by Sandy Simon, Christiane Collins, Jean Goode and Sarah Laffe (I haven't read this one, but the title looks good.)

Stronger After Stoke: Your Roadmap to Recovery by Peter G. Levine. (I haven't had a chance to read this one either.)

Nathalie's Story by Nathalie Aubertin. I couldn't quite decide if I should list this with blogs and personal stories or books, as it really fits with both. Since the website is all about the book (I don't see an ongoing blog or anything like that), I am choosing to put it here. Nathalie states, "I had suffered a stroke at 15 years of age. As a result I am quadriplegic and speech impaired. I am now 39 years old. With the use of a mouth-stick I typed one letter at a time until the book was completed."

I was recommended to read My Stroke of Insight: A Brain Scientist's Personal Journey by a couple of hospital therapists. Upon coming home, I looked the book/author up on the internet and found a YouTube of the lady describing how she had "found nervona" through her stroke. While an interesting an inspirational speaker, I decided this book isn't for me, even though I have never read it. For anyone looking for resources, I thought I should mention that, as it is a popular and highly recommended title.


Stroke Statistics

Stroke Warning Signs

Support Resources and Organizations

Stroke Warning Signs - know the signs of stroke and when/how to act to obtain help.

Stroke of Faith - "This Christ-centered blog is designed to serve stroke survivors, families and friends, through sharing experience and faith. My own stroke came on May 8, 1998. God provided medical professionals, friends, fellow believers, and strength to get me through some struggling recovery times." - Jeff Porter, stroke at age 39

StrokeNet - stroke message boards, chat and community, where I spend a lot of time.

National Stroke Association

Bellaflies -  pediatric stroke foundation

Defeating Stroke - Facebook group for stroke survivors 55-years-of-age and under.

Therapy and Adaptive / Independence Tools

Several of my posts include therapy and rehab videos of various stretches and post-stroke exercises that may be helpful to you.

iHOPE webinars are "ideal for anyone interested in learning about medical and lifestyle issues that affect people after a stroke. Webinars are pre-recorded while Ask the Experts Q&A sessions are live. All are available on demand for free after their debut." Topics include issues such as aphasia, atrial fibrillation, caregiver needs, depression and emotional issues, fatigue, bladder management, medications, nutrition, sex, spacisity, vision and more.

Stroke Nation (at home therapy ideas)

From Pintrest

The Listening Program (brain reorganization and development)

Piano Wizard - not specific to stroke, but wonderful for brain rehabilitation in general. Just watch!

 BrainHQ Brain training exercises via computer games, based on similar research to Luminosity, but recommended by my therapist as specific to brain recovery or rehabilitation. Why you should use BrainHQ.

All cotton Compression Socks (diabetic or other circulation issues)

Re-usable, washable, traditional look/feel Incontinence Underwear
The National Stroke Association reports, "Research shows that up to 80 percent of stroke survivors suffer from incontinence after a stroke. The good news is that using multiple approaches has been successful in treating as many as 70 percent. Watch our newest iHOPE webinar, BladderManagement After a Stroke..."

Magnetic Button Dress Shirts (great for hands that struggle to work traditional buttons) "MagnaReady"

Resources for Family and Caregivers

How To Cope When A Loved One Has A Stroke 

StrokeNet - stroke message boards, chat and community, including resources both for stroke survivors and caregivers

Stroke Survivor Blog Kathy Bonchery shares 5 1/2 years of journals of her care for Steve (now diseased), along with resources for "stroke survivors, stroke victims, caregivers and others might find peace, hope and encouragement."

Sexuality After Stroke

Care Giver Burnout very short video

Resources for Family Caregivers

Stroke Warning Signs - know the signs of stroke and when/how to act to obtain help.

 Other Helpful Links (not stroke specific)

Joni and Friends - Great Support and Encouragement for Any Form of Disability.

Still trying to figure out what's going on with my Trigeminal Nerve. TMJ we think, but the strokes messed up my ear, neck and shoulder too, so it's not just classic TMJ! Update: I am still dealing with significant TMJ jaw pain, though this has recently been linked (by my neurologist) as also having atypical trigeminal nerve involvement/pain.A friend suggested The Facial Pain Association for support.

neuropathic pain

11 Months

I have noticed my regular updates are usually only read 20-30 times, while a monthly update is often read 160 times or so. I guess I better make this count then, even though monthly updates aren't really the bulk of the progress I share.

I made it nearly 3 weeks between crying breakdowns this month. That's a post-stoke record! Even when I did break down before we even got out the door to church this past Sunday (since I had already had an out-of-control cry, I made it through the whole church service without tears!) I manage to back under contol within about 5 minutes, also a record for me. Praise God!

This morning I cried again, but they were my first "normal" tears in 11 months. I watched part of missionary biography movie with my kids and when the men were martyred, I cried appropriately. The tears came when they emotionally should have, were not absolutely possessive of my body, then they dried up again when the the sad part of the movie was over. This was SUCH a relief and seems like a great gift for the 11-month anniversary!

My therapist thought yesterday that my 3-week gap between tears may be partially credited to the reorganization of my brain with The Listening Program. I think probably so too, but if that's the case, I so wish we had been using it earlier! Ultimately, I know the credit goes to God. Maybe it would have taken so long to see this progress and healing of the brain, even without other tools to aid the process? Anyway, the emotional has been even harder than the physical, so it is so encouraging to see this bit of light breaking through the storm!

The coldness and purpleness of my foot is also improving. All the exercise and being up on my feet more seems to really be helping blood flow. Last night I wore a tight sock-like ankle brace in the water for therapy and noticed my leg and foot were visibly purple and swollen compared to the part that was under the brace, so it isn't perfect yet, but even the purplishness last night was better than my average before! I have gone from feeling COLD all of the time to feeling HOT most of the time now. It will be nice when my body better learns to regulate temperature.

I am still going to physical therapy on a monthly basis, to check on progress and answer questions. They would rather I was still coming weekly, but we can only do what we can do. In the intrum, I am going to the gym at least twice a week, once (or twice) for an hour or so of water therapy, and an hour of "senior fitness" where everyone else in the class is probably 20-50 years older than I am. It is pretty sad that even in a "senior" class I can only do about half of what everyone else does and have to modify everything else to fit my needs. I have, so far, had to do everything seated, even if they are normally standing activities.

I felt significantly less coordinated in the water last night than I had a week ago, so I'm trying to decide if I am less coordinated, or just more aware of my lack with the passage of time? I really think last night it was a sign of physical exhaustion, as this is the second Monday in a row that I've barely been able to move my the time water therapy is over. They push you HARD in that class, even if I can't do many things and have to significantly adapt or abbreviate others for now. I'm so glad for the flotation belt they let me wear there, to keep me boent and on my feet when I lack so much balance. By the time I got home last night, I was tripping badly, even with the cane, over nothing but the floor and my own two feet.

My mom and I got another meal in the crock pot yesterday. It wasn't fantastic, but it was great to come in to hot food after my water class (thanks for doing this with me, Mom!) last night. We took a cooked pork roast out of the freezer, I added some natural chicken broth, pre-sliced mushrooms, and brocili pieces.

I cheated on my diet yesterday and ate a pop tart but I am almost back down (within a half pound) of where I was last week. Yesterday I was so discouraged by the 3-pound weekend gain that I was ready to throw in the towel and give it all up, but I am back on track now, I think.

This is international homeschool Spirit Week. The kids and I wore silly socks yesterday (I could not do Homeschool Away from Home day, as scheduled) and are in our jammies today. Fun! We are in week 11 of our school year already - even in normal school years we've been as late as Thanksgiving or Christmas even getting to week 6 or 7 before, so I feel really good about our progress so far this year!

For those of you who have been following along, you already know about my shoulder and ear. I have taken a week or so off from writing my current book to work on another project. Both are coming along slower than I wish, but well, I think.

My hair is getting long enough to be in my eyes all the time if I don't keep it pulled back. At first I used a barrette (thanks Robin!), then a headband. This morning I was able to pull enough back for a small jaw clip - it isn't smooth as I'm still trying to learn to do it single-handedly, but it is progress. :)

I guess the other major posts this month have been my thoughts on being Home Sick and reflections on My Own Private 9/11. If you haven't read the first one, you will probably want to, to get a better feel for my mental/emotional/spiritual state. The second offers thoughts on the life-changing events of a crisis, publicly known or not.
Job 27:10
Will he find delight in the Almighty? Will he call upon God at all times?

P.S. If you are reading this from http://strokeofgrace.blogspot.com/ rather than my Facebook page, could  you please click on the little blue button on the left side that says, "Join this site" with Google Friend Connect? It would really make my stroke story more attractive to potential publisher if I had significantly more than 14 "friends" here when I query the manuscript! Also, if you are on Facebook, all my blog updates (and more!) are posted to https://www.facebook.com/pages/Stroke-of-Grace-by-Jennifer-Saake/339888582731687 on a regular basis - I would love to have you join me there as well!

Friday, September 21, 2012

Shoulder, Ears and More

Friday! I'll be so glad to have hubby home for the weekend! :)

Did I mention Rick killed a Black Widow in our bedroom this week? Rick, my hero for so many reasons. :)

I'm hearing of lots of friends getting divorced after the 20-year mark, many that I considered really solid marriages and never would have guessed they had more than average relational problems. It is terrifying as we just marked 20 years and this one has been so rough, but then I think of how when I was pregnant, I kept encountering losses at my exact stage of pregnancy or a week or two ahead. I realized satan kept bringing these losses (at this timing) into my life to feed my fears and steal my own joy and thanksgiving. I could feel sad (devastated) for these families, pray for them, and pray over my child with more fierceness, but just because they had lost their babies didn't mean I certainly would, nor did it protect me from similar loss if that was the journey God ordained me to walk. Worry didn't change a thing but my level of peace. I'm trying to keep this in perspective with marriage too. I am so thankful for the man God has chosen for me to share this life with. I only wish I had more than brokenness to offer him in return.

I heard back the official word on my shoulder. The diagnosis is rotator cuffe tendinitus, specifically of the Supraspinatus (my doctor's medical assistant couldn't read the word at first and called it "Super Asparagus") tendon, the largest component of the rotator cuffe (responsible for lifting the arm). It is still possible that this could lead to an outright tear of the cuffe and require surgery, but for now it should slowly heal just with time and rest, as long as no further injury occurs. (Less serious, though potentially more painful than an outright tear.) Easier said than done as I am doing regular therapy - I guess we can work on getting the shoulder better and ignore the rest of the arm (potentially loosing the limited, hard-fought-for gains we have made), or we can keep working on the arm and fail to give the shoulder time to heal (as we have tried for nearly 11 months)? *sigh*

Tuesday I baked fish and we opened a big bagged salad. Rick did pork chops on the grill Wednesday night. Last night I tried my hand at a fritata (thank for the idea, Kendra!) and I thought it would be a total cooking flop as I thought to pre-wilt the spinach but I didn't pre-cook the mushrooms and it was watery and took forever to cook as a result. Rick and I agreed that next time I should add some diced ham or hamburger meat or bacon or something. The texture was off, but it still tasted pretty good and I managed with Rick's help. :) Tonight I think Rick will grill again. I'm down over 5 pounds (12+ from my very highest.)

My counselor is still working to get insurance approval. Please make this a matter of continued prayer! God has been a Wonderful Counselor, indeed, and I have gained clarity and healed, emotionally, much, but I still want someone to talk to (in flesh), and pray with, about many areas. I know if I keep listening to the Lord, He will bring answers and provide wisdom in His timing, but I also believe He didn't design us to try to go it alone and I'm very eager to glean wisdom from another godly woman's perspective and be mentored through this! I don't expect her to have all the answers, and I may or may not fully agree with even the answers she gives, but I think it will help simply to know some else is trying to understand the ins and outs of this journey.

I do seem to be hearing some better, though I still miss a lot, mis-hear what is actually said, and have to ask folks to repeat themselves often. I think we are now dealing with more of the effects of nerve damage (to both ears) than the scar tissue blocking the mechanical function of the ear now. Nerve damage cannot be addressed with hearing aids, so this may be about as good as it gets. I'll see the ENT again next month. The first thing I want to do after I get permission to get the ear wet again is take a LONG, soaking bath. I am so tired of swimming and showering with Vaseline on a cotton ball, stuffed in my ear!

I know the internal packing is not 100% dissolved, for though the ear feels much less "stuffy" than just after surgery, it still pops and changes pressure and volume often. I was sitting in a small group yesterday, with about 3 different conversations going on, and I had the hardest time focusing on the single person I was talking to or hearing an individual voice through the din of chatter.

The kids and I are finishing up week 10 of school today. I think we have (mostly) found our rythem and it is going well.

I haven't had any sobbing, screaming major emotional meltdowns in nearly 3 weeks now. This is a record! I almost lost it last weekend, when I saw a couple of hand-written labels I had made pre-stroke and was terribly upset over my loss of "beautiful" handwriting (though I never used it like it and thought I wrote like a child then, if only I'd known how much better that was than my scribbles now!), BUT I was able to bite my lip, change the subject, and regain my composure without tears - praise the Lord! Our kids and my housekeeping failures have me on the brink  of tears again this afternoon, so I don't know that I will successfully make it through another weekend, but I wanted to celebrate the progress while there was something good to report so far.

Several folks comment on how much better I am looking lately. One friend even said yesterday that I looked like me again - that meant a lot to me! I guess "winter" will not last forever after all, though it sure has taken "spring" a very long time to start coming.

I could only use an electric razor at first. Rick got me one, at my request, for Christmas. I had only shaved once, with assistance, in rehab, laast fall. I have been using a regular razor again for several weeks (over a month? maybe close to two?) but though I have feeling on the left side, it is diminished and apparently I am not a good judge of pressure. This week my left shin is sporting major razor burn and several small scabs because I just don't feel how hard I am pushing the razor, I guess.

I can't think of much else to share. If anyone has any questions, ask away!
And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus. For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God— not by works, so that no one can boast. For we are God’s workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do. - Ephesians 2:6-10

Tuesday, September 18, 2012

Belated Thank Yous

I am so blessed by my friends. <3

A. shared last week:
Jenni, I immediately thought of you while reading this. "When you stand & share your story in an empowering way, your story will heal you & your story will heal somebody else."-Iyanla Vanzant
Your my inspiration! Keep writing and fighting :)
L. posted to a contest I entered that I should win the prize (I didn't, oh well) because I am her "hero." My mom says the same thing.

M. faithfully sends me flowers, cards, and heaps of encouragement and love, even still.

My husband denies his wants to repeatedly provide to be sure my needs (and several wants too!) are met.

My parents help fill the gap left by my absence of driving ability.

Meals were abundant, far longer than I could have anticipated!

C. gives up nearly every Thursday to help keep on top of whatever I need done in our home. 

I could go on and on, especially in the hospital with the outpouring of cards, gifts and kindness in the months right after I got home from the hospital. Thank you, every one of you, especially those I was to ill to acknowledge at the time, for your sacrifice and blessings! Your words and acts of encouragement are such treasured gifts. I guess, in addition to a physical touch love language gal (something most of you live too far away to do anything about) I thrive on words of affirmation and encouragement. More than ever before, I'm learning to appreciate acts of service and gifts of loving grace as well! Actually, any expression of love feeds my heart.

My lifetime anticipated medical cost far accede 1 million dollars. I do not qualify for Social Security or other aid, partially because my recent work history has been writing and focusing on my children, so apparently that doesn't "count" for real employment. This is daunting and stressful to consider, but I keep reminding myself that God "owns the cattle on 1,000 hills" and promises to always supply our needs. We take it one day, sometimes one minute or one bill, at a time. If God sends encouragement when I especially need it, we must trust Him with the rest too.

I know I owe debts I can never repay to so many of you, for your kindness, generosity, faithful prayers, and encouraging words and/or deeds. Thank you for being pieces of God's provision in our lives. <3 I don't say it often enough, but I do realize a bit of how very blessed and loved I am. Thank you!

While Kendra is the only friend I know who really "gets" most of this journey (I am so thankful to have limited contact with her!), I feel so blessed that so many do everything in your power to help me carry the burden with whatever level of understanding and giftedness God gives you. Thank you!
2 Corinthians 9:10
Now he who supplies seed to the sower and bread for food will also supply and increase your store of seed and will enlarge the harvest of your righteousness.
P.S. So far I'm down 4 1/2 pounds on my diet, even from the lowest "starting weight" recorded at my fitness consult late last week, 163, about 10 pounds from my very highest, early last week, of just a fraction of a pound under 170. It's a small start, but it is a start. Seeing the scale move the opposite direction from what it has all these months, is such a relief and encouragement. Praise the Lord! The ability to walk (with a cane, but be mobile) has done wonders for my metabolism! I'm also stealing crock pot ideas from Kendra's food blog and have successfully prepared a couple of meals now (with a little help - thanks Mom!) so I think cooking for myself and having more say in ingredients also helps. If anyone has easy, low starch, dairy-free, sugar-free, high protein and fruit/veggies ideas that are also free of additives, chemicals, or processed foods, I'm looking!

So I don't forget, here what I've successfully made so far:

Salsa chicken - super easy, just poor a jar of good salsa of boneless, skinless chicken breast (I'm told thies work too) and bake at 350 until done (about 1 hour). Can also crock pot and/or add black beans and/or corn.

Crockpot Chicken Tortilla Soup
4-5 boneless chicken breasts (or thighs)
1 can black beans (rinsed)
1 can garbanzo beans (We didn't have these and substituted "Shelly Beans" just fine.)
1 can tomato sauce
1 box (2 cups) natural chicken broth
1 can Rotel original (Thank Mom!)
1medium onion chopped (I used dehydrated flakes.)
2 cloves garlic minced (Refrigerated, minced, I used.)
A few dashes of Worstechire sauce
1 can or equivalent of frozen corn (We just put in a quarter cup or so, so we could get the flavor without making the dish too starchy.)
Handful shredded carrot
Handful shredded zucchini (I needed help with shredding)

Throw it all in crockpot on high for a few hours, shred chicken (again, I didn't even try this skill!) and throw it back in (I added more chicken broth at this point, because it was SO thick and stew-like). Serve with cheese, tortilla chips, and sour cream (we skipped all these toppings). I ate 3 bowls! There were 7 of last night and the kids and I still have enough left over for generous lunch today.

Thursday, September 13, 2012


I got the preliminary report back from my MRI (more official word on Monday or Tuesday of next week) today. There doesn't seem to bear a significant tear anywhere, just fluid build-up and tendonitis. (Apparently, some possible tiny tears, just not through all the layers.) If I understand the report properly (?) the shoulder is still "moderately" sublexed, or at least dropped or sloped to the left. It makes me wonder, if this is moderate, what was it before when it was so visibly and obviously lower than the right side?  The good news is at least I know I am not continuing to aggravate a rip with exercise. Also it doesn't sound like this will need any kind of surgery!

The bad news is that since it can't be surgically addressed, this might be a long-term pain issue and I think I still need to (am blessed to be able to) push past the pain and work on strengthening the arm and shoulder in therapy anyway.  I am glad to no longer feel hesitant to push it, as I have been trying to use my arm left arm less and less, due to concern over what might be happening internally. It needs to stay active if I ever hope to recover more or keep from loosing what little I have!

I just started a low-carb, non-dairy diet. I don't have to count anything (carbohydrates, calories, etc.) and am to drink lots of water, eat lean protein, and eat all the fresh fruits and veggies I want. By default, the diet is low in salt, sugar and pretty much any processed food as well. While it will be limiting, I think it is more cut and dry (easier) than many of the other diets I've read, where you are allowed certain vegetables, but not others, for instance.

My goal is to loose 30-40 pounds in a year, since that's about what I've unintentionally gained since coming home from the hospital. We will see how that goes! I can"cheat" two days per week and I have a variance to keep drinking my daily 4 ounces of pudding (through a straw, to strengthen facial muscles) each day. In 36 hour I have already lost 1-3 pounds (depending on how you count starting weight). From my very highest, a week ago, I am down about 9 pounds. However you count it, it is such a blessing to see those numbers not continuing to climb, as they continually have for so many months.

I tried a senior fitness class today (on the advice of my physical therapist who can't see me as often as we would like, due to insurance limitations) that I do on an altered and very limited level, primarily seated even when others are standing. Today the regular teacher was out and a Zumba instructor was substituting. Even though she did a ver scaled-back, low-impact Zumba class, I had to leave after 20 minutes. I couldn't even keep up with half of the foot moves or most of the arm movements from my chair! We (my mom and I) hope to try water stretching, on our own, tomorrow.

Totally non-stroke related, but I'm too excited not to share. I was just notified that Hannah's Hope was recently contracted to be translated and published in the Czech Republic! This should happen by or before the end of next September (2013)! Please join me in prayer for the hurting hearts God wants to touch through this translation. I am so excited! It is wonderful to have something so good to focus my thoughts on today! I'm over half way through with the manuscript for my fruit of the Spirit book and hope to present it to a publisher for consideration by early next year as well. Prayers appreciated.
Psalm 18:1-2
I love you, O LORD, my strength. The LORD is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold.

Tuesday, September 11, 2012

My Own Private 9/11

It is September, 11. I know of at least 3 people celebrating their birthdays today. Such on odd conflict of emotion - private celebration on a day of such public and national grief.

Before my strokes, I remember hearing of tragedies such as shootings, terrorist attacks, car accidents, and such and remember thinking, "Did they have any clue their lives were about to change so dramatically?"

Oddly enough, now I know, by personal experience. And the answer, in my case, was both yes and no.

All fall long I had had a strange inclination that God was preparing me for "something" coming. I had even repeated mentioned to my mom (and once to a WalMart cashier) that I felt an urgency to get my Christmas shopping finished in case I had to go into the hospital or something between then and Christmas. After the stroke my rehab doctor was so amazed God had given me this kind of extra-ordinary "heads-up" in preparation. (In light of all that has transpired over the past year, I can hardly believe holiday preparation was even on my radar as a significant need at this time last year!)

On the other hand, I was totally unprepared that I would go into an appointment on the morning of Oct. 25 and never walk out. If I had any inkling this was to be "the day" or that the impact would be nearly so profound, I never would have gone, wouldn't have even made the appointment! I was semi-prepared for something that might put life temporarily on hold, not a life-altering catastrophe that would change our lives forever.

Back to the 9/11 theme, in that moment our lives were drastically changed. I've rather envy those who the world knows of their suffering and can thus attempt to respond, not that anyone can really soften the blow, but it is a blessing when someone tries. My heart hurts for the countless more who endure their own private "9/11" scope losses every day, yet few know even know to care. I in no way wish to diminish the suffering or honor due to the courageous folk directly impacted by this Patriot's Day, 11 years ago today. I am only commemorating the day my own world changed forever too.
 Psalm 46:2 Therefore we will not fear, though the earth give way and the mountain fall into the heart of the sea,
P.S. It's been a teary morning for some unknown reason, other than just the daily stress of living with brain injury. My poor hubby tried to make me smile this morning. Instead of giggling at his joke, I burst into tears instead. There is no logic to my reactions and when you try to apply logic cause-and-effect though processes, you cannot. I can't really even explain my confusing reactions to you, for I am confused by myself! *sigh*

Friday, September 7, 2012

Home Sick

Nothing terribly exciting to report about my week. I've done some form of therapy every day since Tuesday. I'm one tired and sore lady! (I'm also, by far, the youngest person in most classes I take, being a good 20 or 30 years younger, yet most decrepit, in any of the classes I've taken the last 3 days.) Yesterday and today we have found a teacher whom we adore. M. really gives special attention to my needs and safety and ability.

I think I may be getting a little feeling back in my mouth. (Well there you go, that is something significant to tell you.) At least it feels more predominantly "numbish" now and sort of like I drank something too hot and burned my taste buds, but for the whole left side of my mouth. I'm trying to decide, but think my lips feel a little tingly now. All those facial strengthening exercises and stretches seem to be bring back a little life to the nerves in my mouth again?

There are a couple other things I'm not quite ready to talk to the world about yet, but I am making note of the time frame here, so that when I'm trying to remember, I can look back here. One has to do with news we learned earlier this week, and the other slightly pre-dates my last neurologist appointment in July, by 3 weeks or so. Since this is where I keep my personal journal notes too, and have such impaired natural memory, thanks for understanding my need to sometimes make notes here for myself. :)

My emotions still tend to swing wildly, and I do cry frequently and oh so easily, but the latest on the PBA symptoms is that I currently tend to be in an upswing of laughing more than crying. I was just sitting in my chair a couple of nights ago and suddenly burst out laughing for no apparent reason at all. My son wanted to know what was so funny and I couldn't give him a logical answer.  Crazy!

Yippie, my shoulder MRI is finally scheduled for next Wednesday. In a way, I kind of hope they find a correctable problem, because it the issue can be addressed, I might be in less pain, long-term. My husband's shoulder surgery from nearly 4 years ago is still painful and slightly limiting for him, so I know it would not be a perfect fix.

If everything looks good, structurally, that's even better news, because even though it is very painful, at least I will feel more confident trying to push the abilities of the joint and muscles in therapy, without being so concerned about exacerbating damage. It may well be that the pain is mostly stroke-related, but it has gone on at much too severe a level, for too long, to not go in and have it imaged in order to try to find out.

My wrist of the same arm is very painful as well, but there's no indication that it may have suffered additional damage. It is always more sore for a few days after I fall or try to catch myself with that arm, but we think it is just muscle and nerve pain, not possibly joint-related as the shoulder now may be from overuse during therapy. The hand (especially fingers) and even main parts of the arm can be pretty painful as well, but differently enough that I'm pretty convinced that's all nerve-related.

My other shoulder is also getting rather sore too, from trying to take up the slack from the left side, but it feels muscular, not in the joint.

Both my left arm and leg are hyper-sensitive to touch. Although there is diminished feeling in them, if touched, even gently, when I'm not expecting it, I flinch in pain. I prefer to sleep on my left side, but can't now (well, both me ear and my shoulder make certain that I can't anyway) because I can't handle the weight of my whole body pushing down on that left side for more than a few minutes, if at all.

Tonight a friend is coming to pick me up for dinner. I'm so excited. Thank you for thinking to invite me, A! Home-school co-op starts next week, so we have decided it will be therapeutic just for me to try to go for the hour, once a week, and simply be there for the organized chaos. It will be wonderful to see so many friends on a regular basis again. Thank you, Mom and Dad for being our regular transportation and stepping in to fill my commitments to co-op this semester. You guys are amazing!

Some of you have been worried about some of my recent comments about wishing I had died last fall. Actually, I am doing pretty good. I am choosing to ask God to make the most of my days here on earth, but I am not ashamed to say I would rather be with Him in Heaven. If anything, my near death experience has clarified and profoundly deepened my perspective on and belief in God and His promise of Eternity. Given the circumstances of the very brokenness I live in daily, I think it would be quite surprising if I were not "Home sick" more often than not.
Edited to add, here's the background behind these statements, once I finally got the courage to share it.

Around six months into this journey, I was quite suicidal. My husband challenged me that if God did not take me Home last fall, that He still must have a reason for me to be here. I'm looking for His reasons for each day in a new light. What you are reading now is that I'm finally brave enough to write what I'm really feeling, what I have been feeling, often on a much more profound level, for months already. I see this as a step of healing, not a red flag of concern, but I do treasure your loving words and heartfelt prayers and you have no idea how much each note of love ministers to me! May God be glorified in the life He has given me.

This has become a key passage in my life now. My pray is that Christ be revealed in my mortal body:
Therefore, since through God’s mercy we have this ministry, we do not lose heart. Rather, we have renounced secret and shameful ways; we do not use deception, nor do we distort the word of God. On the contrary, by setting forth the truth plainly we commend ourselves to every man’s conscience in the sight of God. And even if our gospel is veiled, it is veiled to those who are perishing. The god of this age has blinded the minds of unbelievers, so that they cannot see the light of the gospel of the glory of Christ, who is the image of God. For we do not preach ourselves, but Jesus Christ as Lord, and ourselves as your servants for Jesus’ sake. For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ.
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. 10 We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 11 For we who are alive are always being given over to death for Jesus’ sake, so that his life may be revealed in our mortal body. 12 So then, death is at work in us, but life is at work in you.
13 It is written: “I believed; therefore I have spoken.” With that same spirit of faith we also believe and therefore speak, 14 because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you in his presence. 15 All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. - 2 Corinthians 4 (NIV)

Tuesday, September 4, 2012

Dangeous Emotions v/s Contentment

The long holiday weekend taught me something about myself - quiet time to myself is a dangerous thing. It gives me time to think and that leads to tears, not the quiet, healing kind (those haven't existed in my life for the better part of a year now), but the exhausting, soul-wrenching, body-heaving, hysterical kind.

I counted the weekend pretty much a success because I only had three emotional melt-downs, one of them semi-deserved, over two days. I managed to make it through the whole day Monday without melting down! I probably only bears humor to someone with a living child, after loss, but our 6-year-old said something during of of my tear-fests that really made me giggle when I was telling my husband later. I will hopefully post more about that on my InfertilityMom blog in the next fews days.

It is week 3 of the computer-enhanced classical music I am listening to for 20 weeks, to retrain my brain. The Listening Program (part of my speech therapy) is sometimes challenging to fit into my day, but overall it seem to be enjoyable and I hope also productive in the end. My ear doctor is also pleased with the program, as I recover from surgery.

I have graduated from apple sauce, through yogurt, and am now drinking pudding through a fat, short straw.  I think I will go to a longer milkshake (fat) straw soon, then down to a standard one, and ultimately hope to strengthen my facial muscles enough to sip pudding through a coffee stirrer. I have no idea how long that will take. I just know that my speech therapist and I booked dates through the end of 2012 today, tentatively looked at dates through next June, and talked about ongoing needs (and probable therapy) beyond that.

When I woke up in the hospital last fall, it is good that I had no idea what lay ahead. When my husband challenged me to "fight" during my third stroke, I wouldn't have fought if I knew all that really lay ahead.  I naively thought then that the hospital season was bound to be the hardest part. Little did I know...

My kids are jealous that I "get" to drink pudding every day and also use a silly straw to drink everything else (also facial strengthen exercise as part of speech therapy). Our daughter also feels gypped that I get to go "swimming" (water therapy) tomorrow morning. If only it were half as fun as they seem to sometimes think it is. Our youngest had to be banned (again) from any of my medical equipment today, because some items make great toys in his mind. I wish I could face this all with the same child-like wonder. Of course, for them, without the same limitations I'm faced with, it is fun.

Before I forget, I wanted to let my fiends with any kind of chronic health issue (cancer, heart, immunity illnesses, etc.) know about a free upcoming resource! Next week is National Invisible Chronic Illness Awareness Week (NCIIAW). Rest Ministries is sponsoring the event and hosting a bunch of free online web seminars on a variety of topics all week long. If you can't tune in live, I believe the sessions are typically recorded and either available to order (for small cost) or eventually archived and again made available online.  If you, or anyone you know, is fighting a hidden health monster, you won't want to miss this! This is the 12th year of the event and it is always a blessing.

I was reading a poem by famed hymn-writer Fanny Crosby today. She was only 8 years old when she penned these words. Rather than my regular Scripture, I leave you with this.Two lines were very convicting to me to make a concious change of attitude, to be resolved to contentment:
I am resolved that in this world, contented I will be!