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, September 25, 2015

2 Weeks After, 1 Month Until

I made myself as a Peanuts character. I just wish they had a sassy, pink walker I could have added as an accessory! <3

I am exactly 14 days post surgery, and 1 month away from my 4 year stroke anniversary today!

I am still sleeping a lot! Incision pain is much better. Internal post-op pain actually seemed harder to cope with my second week than my first, but I do feel like I'm making significant forward progress. The hardest part of surgery and recovery has been my allergic reaction then the steroid short that resulted from the drug reaction. Next to these, the surgery itself was pretty easy.

The bigger issue in my mind tonight is that I am 47 months post the scariest event of my life. During those first weeks, first month, I couldn't even IMAGINE making it to three years. Now I'm already almost to 4.

Not much else to share right now. Just didn't want to go to bed without mentioning the two landmarks that have crossed my mind multiple times all day.

I remember an able-bodied family of adults who took the last disabled parking spot (without plates or placard) at the hospital on the morning of my surgery and the hassle Rick and I both went through in trying to get my walker out and set up in a busy parking garage and tight spot when we had to use a standard spot as a result.
Kendra, go type "Brazil handicapped parking spot" into YouTube and watch any of the videos with blue post-it notes! :) One example is https://youtu.be/y7fWYxRq34g.


Saturday, September 19, 2015

Strokie Does Menopause

I realize that much of this is not directly stroke-related, but as stroke seems to color aspects of everything else in my life, and because you all have been such fantastic prayer warriors, I have opted to add the update on my past week of surgery recovery here. (I wrote an entire story about the 30 years that led up to needing this surgery at http://hannahshopebook.blogspot.com/2015/09/invisiblefight-myinvisiblefight-iiwk.html .) I will basically just copy/paste the various times/dates I have been adding brief updates to FaceBook all week:

Friday, Sept 11, just after 4:30pm. my hubby wrote:
She's in recovery, had a reaction to the anesthesia, but surgeries both happened as expected.
About the reaction, later that night he replied in comments:
...we know what caused it, and are a little upset, since it was a medicine that is not only documented in her charts, but we actually talked to the anesthesiologist about, and he said he would find something else to give her. I am going to request all the documentation fir the surgery, and find out why he gave it to her.
Sept 12, before 7am Saturday, Rick wrote:
Jenni did pretty well through the night, still had some rashing from the morphine that they gave her for the surgery. Jenni's mom is coming over to watch her, so I can take [our son] to his school's Saturday session's this morning.
Thank you Rick Saake! 
Marriage is hard and when one or both of the people have a chronic illness it can add a huge extra burden. Today, we honor those of you who have endured the test of time and worked through the hurdles and challenges. #chronicillness #chronicpain #marriage#invisibleillness

Sept 12, early afternoon, I finally posted my own update:
Wow! Realizing my brain is still slow from anesthesia, I've spent over 2 hours trying to catch up on everyone's well wishes and am still not done! AMAZING friends. Thank you!!!
I was in the hospital less than 8 hours, check in to check out. Pastor Joe, of South Reno Baptist Church, was waiting for us when we got there and prayed with us before check in. (He offered to help with the surgery too, and while I told him I was glad he knew my Designer, I declined his offer when I found out he wanted to be sure my parts were labeled in there. wink emoticon )
Great news, I was already in far less internal pain by the recovery room than I had been in prior to surgery. I have 4, 2-3 inch incisions where the robot arms did their thing and they each have big purple/green bruises around them, but that is my most painful part now! Yes, I feel "tender" inside and a little swollen from them cutting around inside, but nothing like the pre-surgery pain that's been more on than off since Aplir.
They did NOT find a hernia and found surprisingly little Endometriosis growth (mostly only on that left ovary they were taking out anyway). They did say my cervix was unusually long and high up into my pelvis. They also said that while my appendix did not have visible endometriosis growth on it (pathology report may find microscopic growth) and looked relatively "normal" for the most part, it had a few areas that looked odd and was also unusually low, way down lower into my pelvis than normal position should have been, and sort of folded back on itself. The consensuses is that this was likely the primary source of my pain.
I woke up in recovery with my face burning and itching like crazy. This was tremendously more distressing than any post-op pain! I asked for Benadryl and they gave me 12.5mg that didn't begin to touch my itching. A few minutes later they gave me another 12.5. After I fought off the sleepiness of surgery enough to go to the stage 2 recovery room, I was still itching like crazy and got another 25mg of Benadryl.
When they let Rick come see me, my face was still deep red/purplish and a cool washcloth wasn't helping much either, so the nurse called and got permission to give me another 50mg as hives were now forming down my neck and arms and chest too. It was only then we learned I had been given Morphine during surgery, something I have a documented allergy to and had specifically asked my anesthesiologist to avoid! Within about 20 minutes of the second 50mg Benadrl the itching quieted and swelling/redness was down exponentially.
After another 20 minutes itching started to build again. I asked for more Benadryl and they said I would have to stay for several more hours of observation before receiving another dose. We requested discharge, came home (by then it had been about 4 hours since my first dose and I know my body can easily handle 100mg at a time), took another 25mg orally, then finally could relax enough to sleep. I woke up at midnight and 4:30 with worse hives, including entire torso, each time and took Benadry again then, but am managing pain with just Tylonol - as I said, I am in less pain now than I have been for months!
I was hived out again when I woke up just before 8 this morning, so took more Benadryl at 8:30. Today I just feel very tied, drained of energy, itchy and a little sore, but have had absolutely NO nausea (praise the Lord!). I am on total bedrest (up for potty trips) for 48 hours, then light activity for at least 3 weeks.
Thank you for being my friends!
If you have a friend who makes a difference in your#invisiblefight of #chronicillness, a friend who knows about all the complications of your #invisibleillness and who chooses to stick around anyway, share this on your wall, tag them and say THANK YOU! Sometimes our best friends have no idea how much we appreciate them and need them during our #invisiblebattle.#iiwk15 #spoonie #thanksforbeingmyfriend 
(InvisibleIllnessWeek.com will be Sept. 28 - Oct. 4, 2015.)

About an hour later, my mom reported:
She is finishing up some oatmeal, has had chicken broth, an Asian pear, and lots of water. 

Nearly 11am, Sunday, Sept 13, I wrote:
My itching is much improved (not gone, but better) so I skipped my two overnight doses of Benadryl. Took a prescription for pain at 8pm and didn't need Tylenol again until 5am. My airway does not feel swollen, but what was a sore throat yesterday now often just feels like my airway is trying to fold in onn itself, so I'm back on Benadyl this morning. 
 Midafternoon, Sunday, Sept. 13:
Slept much of the day so far. Throat feeling pretty good right now. Tummy feels SO MUCH better. Now that I feel the absence of pain, it is beyond doubt clear that something has been wrong for a long time and this surgery was indeed needed! One of 4 incisions is very sore, but so much better than the internal that has been going on! My face is already all broken out in new zits and I've had my first VERY MILD "hot flash" (just felt like a warm wave washed over me but I've had much worse before seeing an endocrinologist a few years back, so I know this was only a small taste of what is to come). Mostly I feel very cold and am staying snuggled under a blanket. Still a little itchy but Benadryl remains my friend (why I'm sleeping so much I'm sure)!

Noonish, Monday, Sept. 14:
Hives staying down, but come back if I let Benadryl laps too long, so yes, I am staying down because I'm sleepy!:) Mom came down and did a couple loads of laundry and loaded my dish washer this morning as she said she knew I would try to do it myself otherwise and that was not OK. Throat stays open with Benadryl but starts feeling swollen by the end of each dose. Seeing primary care doctor tomorrow so he will change up anything he feels important. Tummy is still SO MUCH better. Only pain is really the one incision at my belly button and that is being controlled with just Tylenol. If it weren't for my throat (combination of having been intubated and then the Morphine reaction) and the belly button and the drained no-energy feeling from Benadryl, I really feel great and think I could be up and about in my flower garden or housework or whatever. SO thankful to have that intense whatever that has been hanging around all these months finally GONE!I
 7:30pm, Tuesday, Sept. 15
Doctor gave me a shot to address my allergic reaction to Friday's surgery Morphine so I don't have to keep living on Benadryl round the clock. Head ache from the shot so I'm headed to bed early to see if I can sleep that off. She also wrote a letter saying I may not go back to the gym until the end of October - something about thinking I'm stubborn and would try to go back before my body is truly healed or some crazy idea like that! wink emoticon 
Getting dressed and out of the house for the first time was EXHAUSTING and on the ride home I fought off over-tired tears and told my mom I had no idea what I was going to manage for dinner. She reminded me I didn't have to! Thank you to our amazing Sunday School class from South Reno Baptist Church and the meals you are blessing us with this week - thanks beyond words for this gift!!! heart emoticon

1pm, Wednesday, Sept 16
My Ken-a-log (no idea how to spell it, but that's how it sounds) shot from yesterday seems to be doing the trick. No more itchy or hives, only a few brief instances of sore-ish throat but that always self-resolves relatively quickly, so that could legitimately be still just left over results of intubation and not allergic reaction. 
I have not had to take any Benadryl or Tylenol or other pain medication since yesterday afternoon. I have a just "there," persistent yet dull headache since yesterday that I'm chalking up to either medication rebound and/or hormone changes, but it is not bothersome enough that I feel a need to take anything for it. It feels so good to give my body a break from chemicals! I do sort of still feel "punched in the belly button," but since I have a pink, purple, green, blue and yellow bruise the size of a softball around that incision, I'm not surprised it is still a little tender. Two of the other incisions are barely light brown bruises at all and only itchy, not usually sore. The fourth incision has a huge purple bruise about 6 inches long around it, but surprisingly doesn't hurt much at all. 
I have been wide awake since 3am - don't know if this is a result of hormone changes, stopping Benadryl after taking it around the clock for 4 days straight (like my body is saying this sleeping thing has gone on long enough and since I'm no longer forcing it, it isn't going to anymore!) or the Kenalog (my mom has had one of these shots before and sleeplessness was NOT a side effect for her). I was full of energy all morning (did close my eyes for a combined total of 2 1/2 hours throughout the morning in hopes of trying to get a nap, but was too wide awake and never could get more actual sleep). I'm feeling quite physically drained this afternoon, but now am making an effort to stay awake until bedtime so I can get back on a better sleep schedule tonight.
Noon, Sept. 16, Mom wrote:
I used to pray the Lord would turn her stubbornness toward Him and his works for her to do. He answered so well. PTL

Sept 16, late afternoon, I shared:
I keep waiting for the tears storm everyone tells me is coming to hit hard and it hasn't yet. About 5 times since surgery, I've been sitting in my chair to feel wet running down my cheeks from my eyes, but absolutely no emotions linked to tears. I've had a couple times like yesterday when I was so exhausted that I've felt like tears would bring release but dry eyes with those emotions. Maybe the stroke is a blessing in disguise when it comes to menopause???? I guess it hasn't been long enough to really know yet, just interesting.
Kathy replied: I think the only thing you can count on is that your experience will be like no one else's. 

Sept 16, about 9:45pm:
After a straight 19 hours wide awake, I've taken Benadryl again simply to try to get some sleep! Betty Camp, I did look up Kenalog side effects and both headache and insomnia can be side effects. Thankful hives and breathing issues went away with this cortico-steroid though!
Thursday, Sept 17, 9:30am:
I finally knocked out HARD last night. Still groggy. Only awake because neighbor was pounding on something and doing yard work around 9 this morning. Not sure how much I'll be around today. I initially slep from a bit after 10:30 until only 2:30 and figured I was in trouble again, but I kept my eyes closed, focused on breathing, and told myself stories to keep my mind from wandering and next I knew Rick was getting up for work for the day!

An hour later:
Managed to get the dishwasher loaded! Yard work is quiet now. Quiet plans for the rest of the day! 
 Sept. 17, early afternoon:
Yesterday I felt FANTASTIC, full of energy, low on pain. Went about 20 hours without sleep and flying high! Today is rather a back lash day from the steroid shot two days ago. So TIRED and drained and rather sore today! At least no more allergic reaction though. Laying low physically, but thankful to feel OK in spirit.
 Sept. 17, 4:45pm:
95 minutes of deep, restful, restorative sleep this afternoon!

Sept 17, 7:15pm
Feeling pretty rough tonight. Not exactly sure why. 
 Follow up yesterday morning:  I think I got into some food with MSG last night too. Feeling better today. It was just one more thing for my already taxed body and I didn't do so well for a few hours there!

Friday, Sept 18, 2pm
Today is slow, but I feel better than yesterday. Wednesday I felt FANTASTIC after Tuesday evening's steroid shot. Yesterday was rough. Today, I guess I'm probably right about where I should be one week after surgery.
I'm blessed. Today is a pretty good day. Sure could have used this on Thursday!
We have a family member who has had a brutal year. After several surgeries and other intensive medical treatments over the past few months he has needed to be out of state for a prolonged and unanticipated hospitalization, we are praising God that he is back home!!!

I'm beyond thrilled for my friend Shelly Benoit Hendricks. I knew her before her new books were even born in her heart. heart emoticon It has been a joy to watch God unfold this plan. Can't wait to get my copy in the mail. (And here's a hint to be watching my chronic illness blog in coming weeks for a chance to win your own copy too. wink emoticon)

My bay has been pretty low key today. We will see how I'm doing by morning, but I do hope to try church, then possibly even stay for Sunday School tomorrow morning.

Friday, September 11, 2015

Off to Surgery

In 10 minutes, I head out the door for the hospital and my surgeries. Prayers appreciated! (Updates posted on Sept. 19 at http://strokeofgrace.blogspot.com/2015/09/strokie-does-menopause.html.)

My tummy this week. No, I am NOT pregnant! I hope they can fix whatever is going crazy in there!

A blog I want to remember to go back and read in more detail, especially her thoughts on Jeremiah 4, is http://www.hopeheals.com/blog/2015/8/27/young-suffering-club-lisa-and-eric-barlow-the-answers. Putting it here so I find it again!

Edited to add a link to the story behind this picture.

Thursday, September 3, 2015

Little Big Things

I just learned of a gentleman imminently dying of cancer (maybe even to die today!) and a beautiful, uplifting picture book (geared for children AND adults) he had published that just released last month.
Proceeds will go toward college fund for his two young children. Please buy your copy of Thank You For... today!


I've been fighting mystery tummy pain since April - several ER and doctor office trips, 4 CT scans, etc. Finally they have decided I will have a hysterectomy and take my appendix too, look for new endometriosis growth, clean up prior scar tissue from previous surgeries, etc.. I think there is likely a hernia or pulled ligament or something they haven't identified too, flared up because of my uneven post-stroke walk. I'm praying something is obvious and fixable when they open me up next Friday (Sept. 11) as I REALLY want to feel all better after I recover from this surgery!!! 

Meanwhile Central Pain Syndrome has remained fairly quiet for a bit, but my entire left (more stroke impacted) leg is nasty since Sunday. With my worst tummy pain being down near the pelvis on the right, this makes finding a tolerable sleep position interesting! But I must say, last night was my lowest pain night and most comfortable sleep all week. Thank you for so many prayers on my behalf!

Another pretty butterfly dress. :)
Very encouraging to me this morning:
"Let the dew of My Presence refresh your mind and heart. So many, many things vie for your attention in this complex world of instant communication. The world has changed enormously since I first gave the command to be still and know that I am God. However, this timeless truth is essential for the well-being of your soul. As dew refreshes grass and flowers during the stillness of the night, so My Presence revitalizes you as you sit quietly with Me.
"A refreshed, revitalized m
ind is able to sort out what is important and what is not. In its natural condition, your mind easily gets stuck on trivial matters. Like the spinning wheels of a car trapped in mud, the cogs of your brain spin impotently when you focus on a trivial thing. As soon as you start communicating with Me about the matter, your thoughts gain traction and you can move on to more important things. Communicate with Me continually, and I will put My thoughts into your mind."
Jesus Calling by Sarah Young

I've been thinking about "little things" this week. First off, I am very blessed to be here, to be alive, to be nearly a 4-year survivor, to live relatively interdependently, to not be locked within my own body. I pray that my ongoing documentation of the stroke recovery journey never sounds whiny, never diminishes my keen awareness of these facts that remain first and foremost! I am no longer fighting daily just to live. I really am not even terribly fighting hard to regain an acceptable quality of life anymore. I'm "there". I hope for slow and continual long-term gains, but I have accepted this as my "new normal" and am overwhelmed by the blessing of my reality that is so far beyond the best lifetime expectations that the medical community ever held for me.
Still, I have endeavored, from the very beginning, to give you a true, first-hand account of my journey, thus I bring up some little irritants to allow you a glimpse into my thought process... You know of some of my big losses, such as driver's license, much hearing, IQ points, ability to homeschool and deep struggles to resume my writing career, emotional liability, chronic pain, small motor function of my left arm, pronounced limp of left leg, loss of speed and overall impairment of balance and coordination, but there are a million little things that are also daily impacted. Here is just one example:

This week I was achy and didn't feel good and just wanted to crawl into a warm bath and relax. Not so simple.
1. I was home alone. While, pre-stroke, an evening home alone was the optimum time for a relaxing bath. Now, a bath without someone in the house to help me is downright dangerous!
2. Bath temperature must be closely monitored now. Too cool, I chill badly. Too warm, I kick up neuro symptoms like vomiting. Finding that Baby Bear "Just right" is a near impossibility. Even when I get it, the temperature drops in a matter of minutes and what used to be an hour-long soak now must be limited to 10 minutes or less.
3. "Relax". What???
Before this week, I had managed about 4 baths in nearly as many year. (I've taken two so far this week! More on that in a minute.)
By the time I went though the exhausting and frightening calisthenics of climbing both into, then back out of again, the tub, any "relax" effect was totally erased just from that effort!
Then there was the horrendous spin out effect I endured if I let my head recline backwards against the tub or down into the water at all. No thanks!

My bathroom door - "Only toward the sun sunflower bloom"
I had just about decided tub baths were absolutely never to again be in my future. But between my tummy (described above) and stroked leg both aching SO BADLY, I decided to give it one more try Tuesday night while my daughter was around to safely help me in and out. Well, I can't say it helped the pain, BUT, I did it and it was at least a neutral emotional experience, rather than an utterly negative one as in every other time I've tried since the strokes!

More from my bathroom. I ordered inexpensive little wall clings so I could get butterflies to decorate my new walker and they included these too. :)

Then, last night, I decided to try AGAIN (two nights in a row? Wow!) and I managed, very slowly and laboriously, to safely get both in and out of the tub without assistance!!! (I, obviously, had family on ready stand-by, but never had to call!) It DID help pain levels a bit while I was in the water (unfortunately, no lasting benefit, but those few minutes were a nice reprieve!).

The extra walker butterflies (that came with my sunflowers) that my daughter added to my computer keyboard to make me smile. :)

But the very biggest "little" (HUGE) thing came when I dared to tilt my head back against the back of the tub and it actually felt good last night! I didn't spin out in a rush of wild vertigo, I didn't want to throw up, it didn't cause any panic. It was just a nice, warm, peaceful sensation!!! Honestly, I NEVER, ever thought I would feel this again! I'm so beyond thankful!!!

Here's what I've been thinking this week about our first daughter, Noel.

This is my prayer.
That God will bring about Eternal Life in others because my human life is messed up!
“Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.”
—Psalm 46:10

She had a sister called Mary, who sat at the Lord’s feet listening to what he said. But Martha was distracted by all the preparations that had to be made. She came to him and asked, “Lord, don’t you care that my sister has left me to do the work by myself? Tell her to help me!” “Martha, Martha,” the Lord answered, “you are worried and upset about many things, but only one thing is needed. Mary has chosen what is better, and it will not be taken away from her.”
—Luke 10:39–42

For God is not the author of confusion but of peace, as in all the churches of the saints.
—1 Corinthians 14:33 nkjv