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. (You will notice many typos in older posts. I intentionally never corrected them, as they helped document my cognitive abilities at various stages of recovery.)

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. Jennifer 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 wheelchair-bound and needing 24-hour care. At 5 years, 7 months, God clarified Jennifer's theology on healing and showed how He was writing her story from the beginning.

Jennifer is currently writing more books and stays active on Facebook, Pinterest, and Twitter. 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 temporary update note above!)

Thursday, May 31, 2012

Where's the Grace?

1 Therefore, since we have been justified through faith, we[let us] have peace with God through our Lord Jesus Christ, 2 through whom we have gained access by faith into this grace in which we now stand. And we[let us] rejoice in the hope of the glory of God. 3 Not only so, but we[let us] also rejoice in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
- Romans 5 (NIV)

For those who have been wondering or praying, the knot in my leg seems to be only a deep bruise. It should resolve itself and start to shrink, though doctor warns this may take a very long time. If it continues to grow I am to have it looked like again as these kinds of bruises occasionally develop their own blood supplies and become problematic that way. If it resolves at it should, there is no real reason for concern, like there was when it was thought to be a clot. Praise the Lord!

Wednesday, May 30, 2012

No Clot

Ultrasound tech does not think there is a clot in my leg at all, deep vein, superficial or otherwise (see yesterday's post for background). She does not know what the fluid-filled knot in my leg is (or why it is growing) but it does not look like a clot. Praise God!

Fortunately, I did not know, going into the ultrasound, that if they had found a clot today, I probably would have been readmitted to the hospital this morning. It was all over with before I understood that, so there wasn't time for me to freak out over the possibility.

We will get official word once the doctor reads the report, but I don't expect any surprises since the tech was kind enough to tell me basically everything the report will tell the doctor.

We have an appointment for our daughter's foot for Friday morning.

Tuesday, May 29, 2012

Legs & Feet

A few of you were praying for me as I saw my doctor for a possible blood clot in my right leg this afternoon. Short answer is that we are going for an ultrasound tomorrow morning. The doctor confirms it is a clot but said I didn't need to go to ER today as she believes the clot is superficial, not deep vein, so is relatively low risk. She also noted that my right calf is larger around than my left one, though it is possible this is related to dominancy of the right leg in response to the strokes. The ultrasound should tell us more.

She also noticed how cold and blue my left foot looks and feels. She seemed surprised, but not overly concerned. She believes (as I do) that this is a blood flow/circulation issue and still stroke-related.

Our 9-year-old still can't bear weight on her foot, so she's been referred to an orthopedic surgeon. We are waiting on their phone call to schedule. Her doctor does not believe it is broken, but thinks it is a bad enough sprain that she need a walking boot (removable cast) to support it and help her learn to walk again. We will probably do another round of x-rays just to be sure she isn't hiding a fracture in there. In the meantime, she is in a lot of pain, leaving her pretty pale and mostly confined to the couch.

 My parents leave town on the 6th and will be gone about three weeks, so we are scrambling to fit all the appointments in before they leave!

Oh, I finished my quilt top for Kendra just a few minutes ago. :) My mom is going to try to sew it to a piece of thin flannel so they can take it up to Seattle when they visit Washington next month.

Here are a few other recent highlights, of our visit with the kids and gifts that came last week. :)

I am not talented enough to know how to turn this! Thank you, Abby and for your prayers too!                                                                                                                                                                                                                                 

Our talk and your kindness so blessed my heart, Karla!
Thank you Shonilee! Very touching. <3



Saturday, May 26, 2012

Words & Meditation

Not mine, but I think the verse is an important one for me to focus on and I think the picture is pretty too.
Can you find both butterflies? Some time I'll share the special significance of butterflies for me.

Friday, May 25, 2012

7 Months

Today marks seven months since the strokes began and our lives were turned upside down. Time for another monthly progress report.

I really though I would be walking by now. I thought our kids would be home by now. I didn't think it would still be so hard by now.

The last couple night I've woken up in the night with my left side - hand, shoulder, arm. hip, leg, foot - hurting enough to wake me up. I'm guessing it is may be a change in weather but I don't know.

My shoulder, while still sore and "popping" many times per day, is getting stronger and less painful.

When I am fully awake, up and going, I tend to see singly now. This is a huge praise! When I first wake in the morning, as evening wear on and I am tired, if I am especially stressed or having an off day, and it will all be doubled again, though usually the images are close enough to usually overlap most of the time. Single images tend to be in front of me, while both sides tend to still be doubled, the left significantly more so and more consistently than the right.

My left hand and foot seem pretty stiff and somewhat swollen. I think they are still retaining fluid from last Tuesday's surgery. My left foot seems less purple, over all, the last few days.

My hearing is still questionable, though a comment yesterday encouraged me by saying it can take several weeks in adults for the ear and brain to relearn how to work together after tubes. I really was expecting an immediate fix, but I am hopeful that improvement may still come with time?

I seem to be clenching my left hand into a tight fist whenever I'm not making a conscious effort not to. I had to cut my nails short because they were digging into my hand and getting in the way of therapy. I am slow, but I have enough mobility to touch each finger to my thumb and make it through all the letters of the Sign Language alphabet on a daily basis.

I am also typing, double handedly, a bit again, though I much prefer to just hunt and peck with the right hand It is tedious and clumsy, but possible! I have never, motivationaly, gotten back on tracks with my writing again since I lost those couple of weeks of writing several weeks ago. I have worked on both books a bit since then, but there is no daily flow.

Handwriting (right hand) is sloppy and larger than it used to be but legible. It looks like a kindergartner's writing, but at least you can usually read it now.

I'm making progress on Kendra's quilt, but it is slow-going. I hope she can read the verses when I am done.

Not much has changed with walking. I have come close to taking a couple nasty fall recently (with the walker), so oven though I am practicing with a cane a couple times per week, the balance is still no where near consistent.

I have, gradually, more mobility in my neck, but not as much as I would need to check over my shoulder, like for backing while driving, by a long shot.

I have had about 40 pounds of weight gain in the past 5 months (since coming home from the hospital). I probably needed to gain about 10 after my hospital loss, but the other 30 is very discouraging, especially as the scales keep climbing. Gotta love poly-cystic ovaries (not)! I am hopeful that once I am walking, this trend will change, but I was 10 pounds heavier than this at my heaviest, so I am not holding my breath.

Emotionally, I was able to actually hold a conversation with my husband today! I came close to crying twice, was agitated, but didn;t sob and was able to actually talk, not scream. I did have to leave the room and stop talking at the end, so I have a way to go on working on emotional control, but one victory at a time and I am thankful. I told my husband, before he left for work, that I wasn't giving him the silent treatment vindictively, but it was the only way I could keep from crying and loosing control again. I don't know how the depression is doing, though early morning are often my darkest and this morning I wasn't nearly as obsessed with all the ugliness that I often am.

Lots of folks keep asking about our kids. After so many years of infertility, knowing the pain it can bring to hear of others' miracles, and because of my desire to keep them out of the public spotlight, I don't talk about them often on my blogs, unless I am directly asked. Short answer we are enjoying our time together very much. There are a few challenges and adjustments to being together, including yesterday's trip to Urgent Care for our daughter. Overall, it is a very good visit though. :) Our 6-year-old seems determined to also break something, using his big sister's crutches.

The left side of my mouth is still quite numb. This impacts chewing (as does jaw strength) and flavor as well as feeling. I also expected that this, too, would be noticeably resolving (or resolved) by now. Compared to the hospital, the numbness is now isolated to the left side, rather than being whole mouth and I no longer am constantly tasting a false blood flavor, so that it big picture improvement, it is just impossible to measure, day by day.

I still have to be careful about temperature as I can't swallow very quickly, so something that just feels warm in my mouth sits in the back of my mouth or throat and can really burn! I choke on my own saliva quite a bit and still have a couple of real chocking scares per week. I have learned to be especially careful taking a drink if anyone else is around or if I have recently been laughing, as both of these things make me more likely to choke. It's been a while since I squirted anything out my nose though and this was a regular occurrence for months, so this is good! These issues are greatly improved since the hospital, but again I can't see it daily.

It is nearly the end of May and snowing and sleeting outside! We were happy in shorts yesterday, so quite a surprise!

In his heart a man plans his course, but the LORD determines his steps.
- Proverbs 16:9

Thursday, May 24, 2012

Waiting for the Phone

Rick has our daughter in for x-rays of her foot this morning. We may be adding another cast to the mix soon. I am just waiting for his phone call to tell me if it is broken or just bruised/sprained. When Rick is the only driver in our immediate family, it makes the loss of my driver's license feel particularly significant. Plus, my heart hurts to be there for our baby girl when I know she is in pain.

We are also waiting for another phone call from the insurance company. We get a different story every time we or the outpatient rehab facility talks to them. There's currently about $12,000 of coverage in question for previous treatments plus possibly another month worth of therapy they won't cover too. We had per-approval for these therapies, but apparently it takes a while for all the paperwork to move through the system and when we were originally "approved" they didn't have all our prior claims yet, so they aren't wanting to stand by their pre-approval because they didn't know all we had already spent, in light of our contract limits.

I am still really struggling with teariness and dwelling on dark thoughts, but thanks to your fervent prayers and God's grace, I haven't totally melted down, crying and screaming at Rick, since Monday morning. The BPA is still just as out-of-control, but thankfully it has swung back in the general direction of laughter rather than tears. I laughed and laughed over the delema of our daughter's foot even though I did not think the situation was remotely funny. Still, better than tears. Hopefully the medication will start to balance out my brain chemicals in another week or two.

I'm still not hearing well. Often thinking sounds are coming from the room behind me when they are actually to my left. I think I'm hearing less well than before the surgery and don't think I can just blame it on post-op swelling anymore. :( I do seem to have healed better-than-expected from my surgery last week and for this I am very thankful!

I'm collecting Bible verses to put on a quilt for my friend Kendra who also had a stroke. One of the most personal and meaningful gifts I received in the hospital was a "prayer quilt." It was quilted (think old fashion quilting bee) then tied with yarn at the intersections. Each place it was tied represented someone stopping specifically to pray for me. I loved the though of going to sleep being literally "covered in prayer." Especially if you know Scott or Kendra and/or if there is a verse that you feel would seem significant to her in the rehab hospital as she fights to learn to stand and breath without a trach again, please send your ideas! If you are a stroke survivor, please include how long. I am looking for short verses or longer ones with key words or phrases so I can include those with the reference and your name (or a general group name like the "HP Gals"). It is a tie-together craft for younger kids to do as a classroom project, so yes I am trying to do it myself. (The handwriting looks messy, like it is done by a kindergartener, but hopefully it is large enough and clear enough that Kendra will still be able to read it even with double vision.) I'm calling it therapy. :) Per my mom's idea, I will include fabric markers when I send it, so that anyone who visit her there can also sign.

Praise - we just learned our daughter's foot in badly sprained, she is on crutches, but it is not broken! No cast. :) 

"Fix these words of mine in your hearts and minds; tie them as symbols on your hands and bind them on your foreheads." Deuteronomy 11:18

Tuesday, May 22, 2012

Thinking of Kendra

I know Kendra's story and my own are two distinct experiences, but I can't help thinking of them as somehow intertwined. I was at therapy yesterday and the therapist was working my shoulder, putting it through range of motion. (I was discourage that my fingures still could not navigate the "shoulder ladder" as I simply lack the digital dexterity to "climb" and descend it.) I couldn't help but pray for Kendra, who perhaps at that very moment, was going through much worse.

I know Kendra has unexplained arm pain and while I do not know the answer in her case, I think of the many months of frustration and pain, unaddressed by countless doctors and therapists, that is gradually improving, but not until someone figured out that my shoulder is subluxed and the therapists could begin treating it as such.

I so appreciate the perspective on Kendra's blog that you don't have to understand everything that is happening in therapy or why it is working for it to work. I keep bring that to mind when therapy seems so senseless at times. Thank you, Scott.

Kendra is on my heart nearly constantly. I still am in shock that this has happened. Of all people maybe I shouldn't be, but it does seem strange that two friends, in our 30s, who had journeyed through the intimacies and grief of infertility together, suffered what is commonly though to be an "old person's" condition, and both to have unusual cerebellum damage too, with multiple strokes each, just 5 1/2 months apart from one another. (I met folk in their 20s in rehab
and I've heard of teenagers, infants or even pre-birth strokes, so I know it isn't nearly as uncommon in younger folks as I had presumed.)

Over discouragement over her own situation and not believing she will recover, here's what I recently posted to her page:
I know Kendra's story is not my story, but for perspective, I had been home several months (plus the first two months in the hospital) before I could see ANY improvement in myself (others saw it, but I could not, or it seemed so insignificant to me as to be discouraging in the lack). It was only after I began to see some consistent improvements for myself, that I could begin to believe I might get better. I still question the amount of improvement I will ever see. God never promises anything but suffering in this life (John 16:33). This has dramatically changed my eternal perspective, but does nothing to buy my confidence in the earthly span ahead.

As for the man by the pool and his faith, please remember it took YEARS of illness in preparation before God's encounter with the pre-knowlege of the belief God had honed within his heart specifically for this day. Does Kendra herself need to have faith right now? I don't believe human doubts have the strength to stay God's power. I prefer to think of Mark 2 and Luke 5 where it was the faith of 4 friends who literally carried a man to the feet of Jesus when he could not walk there himself. Scripture says nothing of the man's faith, but it was the faith of those who carried him at a time he was helpless who are noted for their faith.

It was their heart attitudes in action that allowed Jesus to do the work He was already wanting to do. I would encourage you and everyone else in Kendra's circle to continue to lift her up when her own faith is as paralyzed as her right side of her body. Some day, when she sees evidence for belief, it will come again. Right now she is likely wrestling with the reality that a life of faith does not guarantee protection from life's deepest losses and that's more than devastating and faith-shattering to work through!

Recently Kendra's husband, Scott, asked her if "Why?" was a big question on her mind. She nodded affirmatively that it was.

I have been thinking a lot about that. I took a measure of pride in the reality that I really have never really asked Why and simply accepted, stating so as some of my very first words in the hospital, thgat God had a plan through all this.

But I must humbly admit that am doing much the same, phrased a little differently, asking, "Why not?" as in Why didn't I die? Why am I still here?, Why did God not just take me Home last fall when I was so close? Where is my place and purpose still in God's plans for me on this earth?

Yes, Scott, it very much does seem a form of unjust punishment. "Torture" is actually the word that repeatedly comes to mind. Like "water boarding," as a friend put it, we thrash and grasp for help, fearing we might drown, when the reality is that we are upheld and supported in strong arms all along. The analogy is imperfect as those very arms are loving, just and nail pierced in reality, but they seem cruel at bent on destruction at times.

It is easy to fall into the trap that ensnared Job, thinking that God was the cause of all his suffering, rather than just simply removing His hedge of protection and allowing satan to try to work his worst, still within the grace of God's limitations. While satan was bent on destroying Job's faith, it didn't work. God was still glorified in the end. I hope His Light will shine through me as well, that Kenda and I together can testify of God's faithfulness in the end. It just hurts to feel like satan's chew toy, dragged through the mud, right now! Though better to remember the actual source of suffering is not of God even if He allowed it and  can work a wonderful purpose through this all.

Logically I can say and I know that every human deserves this and far worse. I can equally say that, because of the blood of Christ, I know I am not under the wrath of God.

Emotionally, it is a different story. In my heart I feel, "If God is for us, why does He allow strokes to be against us?" There it is, that Why? question.

Kendra and I both love this verse so much that we have instilled it in the hearts of our children since birth, "I will lie down and sleep in peace, for you alone, Oh LORD, make me dwell in safety." Psalm 4:8. What do you do when God has not chosen physical protection? We know he's the only One who can, so what of peace when He does not? As someone else said in Kendra's guestbook, I continue to choose God, for where else can I go? Right now that seems like a choice made on pure faith rather than remotely one on any other reliability or circumstances.

My pastor said an interesting thing Sunday. "God does not fit into your story. You fit into His!" I'm waiting on Him to understand how and where I fit. As Rick reminds me, I wouldn't still be here if God didn't have a reason, so I am trying to rest in His sovereignty right now but that is so near impossible in my heart, even if I can say so in my head.

I am surely waiting on the When I fit as well, for I can't see any purpose in this wait, even, as folks tell me, if it is part of God's plan and purpose right now. I don't know but how to look ahead, past the now, into whatever brighter future I am assured will eventually come. Even if I could see tomorrow, what do I do with today?

I am living in the now and it is so all consuming that there is little room to for my heart to sync with my head and know that God has a plan and isn't caught by surprise (as we are!) but is still in control and has woven His story, from the beginning to include this plot twist. It is much easier to imagine God in editing mode, adjusting His story around circumstances, than to think that God, in His loving grace, would have intentionally written His script this way in the first place. How self-centered is my humanness!

Nearly seven months seems long to wrestle with these kind of questions!It light of Eternity, even in light of an earthly lifetime, it really isn;t so long. But when you are living the questions and the wait, with no clear finish line, it seems endless!

It is like waiting for my hair to grow - it obviously is longer than it was months ago, but it would still be described as "short." At what point does it become long again? Who defines that? Am I looking for Rapunzel length or just past my shoulders? For me, pre-stroke, it ewas about to my waist but that will take years and years to acheive and will be considered "long" well before that. There are so many versions of "long," taking vastly different time frames to achieve. So is the quest for getting better, what one might call "better" can be measured by such different perspectives but it takes a long time either way! The journey seemed endless after just a few weeks, a few months, still.

I can remember, shortly after coming home from the hospital and walking my daily laps of the hall with my walker. I contemplated seasons a lot during those walks, glad that God see the end from the beginning, eager to fast-forward to God's season of Spring in my life. Can I just say the fall and winter seem unusually long right now?

I think you can read a tiny bit of when the logical side is fighting to take imminence and when the emotional rages to the forefront. This is where I live these days. The emotional usually stays in check while I write, but today it will not, even at the keyboard.

P.S. We have been dealing with another major insurance glitch most of the day. Rick is on the phone again, as I type, straightening out what he can. Not only are they denying any further physical therapy until July (frustrating!), they are now saying they are denying all my occupational therapy,to date, as not medically necessary. (I say, come live in my body, even now, and then say that, but of course they won't.) This is after we had already been told we had prior authorization for the treatments. We will see what happens and what Rick can find out.
Please pray! This is so not what I need the same day I'm starting new antidepressants!
"How long must I wrestle with my thoughts and every day have sorrow in my heart? How long will my enemy triumph over me?"  Psalm 13:2 [my enemy, satan? the strokes? ???]
"... my eyes are dim with grief. I call to you, O LORD, every day; I spread out my hands to you." Psalm 88:9

"But I cry to you for help. O LORD; in the morning my prayer comes before you." Psalm 88:13
"My help comes from the LORD, the Maker of heaven and earth." Psalm 121:2

Monday, May 21, 2012

Ear Appointment

I had another appointment for my ear today, including several more (unplanned, by me) kinds of hearing tests and an (expected) tube in my left ear.

I learned today that my hearing is actually "pretty good," that is for his frequent patient in their 60s. He has seen far worse, but my left ear still was significantly worse than the right, both in negative pressure and in hearing scores.

The steroids made no impact, leaving me still with 200 (pounds? I'm unsure of the level of measurement) of negative pressure in the left ear, about 10 decibels less hearing in the left than the mildly nerve-damaged right, and a significant drop off, to profound hearing loss, on the left when it comes to some ranges/frequencies.

He did in-office-surgery to put a tube in that left ear. He had warned me ahead of time that the numbing ear drops might burn a little. I never felt any "burning," just crawl-off-the-table acute pain for less than 10 seconds. After it took effect, nothing more for the rest of the procedure. It did sound a bit like someone was eating Rice Krispies in my ear canal, for all the snapping, scratching and popping sounds, but quite tolerable.

When he made the cut in my eardrum I didn't feel any pain, but I did, instantly, feel like someone had turned up the volume, even before he got the tube placed. He says, because of my different kind of hearing loss, that I will probably need hearing aids also, but this should at least help balance out pressurization from the injured eustation tube.

If the combination of this surgery and hearing aids don't significantly improve things, we may be looking at another surrey under general anesthesia where he will cut the outer ear of from behind, fold it forward, and go into the inner ear for exploration and hopefully for repair. I would very much like to avoid such surgery!

Between the ENT office and our car, my ear spontaneously popped 3 times! I feel this is encouraging step toward equalizing pressure.

This afternoon I have an ear ache, headache, side of my face pain, and jaw pain. It is manage with extra strength Tylenol, but I think a good nap will help even more.  Nothing like two surgeries in less than a week, though today's was far less invasive or emotionally traumatic.

I can't hear well at all right now, worse than before the surgery. I'm guessing this is from swelling and only temporary? I go back in six weeks for a post-op check up (and I think another round of hearing tests, though I am not sure) unless I have any new drainage, then I am to go in sooner. Then back to my other audiologist for hearing aids, if needed.

 I did find out today that the bones in my ear are "beautiful." :)

On a different note, my neurologist is starting me on some medication (I think a newer anti-depressant) as early as tonight or tomorrow (depending on when the pharmacy has it ready) for my emotional swings and black moods. We have crossed the threshold of adding depression to PAB. It could take up to two weeks to feel any kind of difference from the medication. Thank you for your prayers!

Verse of the day:
"Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." Philippians 4:8


I wrote this post Sunday night, so will post with an update of today's appointments soon:

I am battling this weekend. I feel the suffocating walls of depression threatening to close in, its ugly claws grasping at me in an attempt to pull my into the stale pit, the dark abyss.

To crying and screaming in private, I have added public exhibition (and as of Monday morning, also dark thoughts). Thank you to my friends who reached out to me and helped shoulder a bit of our journey today (Sunday).

Friday morning I felt such hopelessness that I desired to remain in bed and pull the covers up over my head, rather than to get up and face another day where my efforts seem unrewarded by circumstances.

Logically, I can see God is still in control. I can see satan's tactics and I'm not willing to give in to the game plans of the old snake!

Emotionally, I am tottering on the edge. I don't know how people cope with so many kinds of losses all at once. I wonder how we will get through this.

I know, in my head, it will be by the grace of God. My heart is at disconnect with rationality.

I would be very worried about my friend if I read a post like this and that's not what I am trying to do here. We have had a very hard, angry tearful day and that's the way it is. No, I'm not trying to scare anyone, I'm just trying to give a realistic picture of our lives and prayer needs right now. I mostly just need to share what's on my heart.

My family, though hurt by my raging spew of emotions, is wonderful to keep standing by me through the storm. I know their journey is different from my own, but I can't think any less painful and I am the one who gets most of the attention, sympathy and support. My heart hurts for the pain I cause to crush the hearts of those I love the most.

Reality is that giving up is not a choice and so we keep getting out of bed and facing each day as it comes, by God's grace. Rick starts another week at work, I go get a tube placed in my eardrum tomorrow (thankful and hopeful, but also a little scary), I go to occupation therapy, we seek to enjoy our time with the kids even though we know they are only here temporarily. Life goes on, screaming toward trying to find our new view of normal.

"So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever."
2 Corinthians 4:16-18 (The Message)

Friday, May 18, 2012

Two Brains

I started out the morning as a crying, screaming, emotional mess! Poor Rick! I do this several times a week, sometimes several times a day. My worst PMS didn't hold a candle to my current outbursts, my sweet Rick always the target for some reason I can't explain beyond the fact the I am the more emotionally transparent with him than I am with anyone else, so I feel safe and relaxed enough to fully let my guard down when I'm with him. Unfortunately for him, being comfortable enough to be totally real around him comes at a very high cost! Anyone would be overwhelmed after so many months of such brutal verbal onslaught. :( Most folks don't believe I can be so ugly, but let me tell you, it is the truth!

I described to Rick that I feel as if I have two brains, my rational "writing" and reasoning side and my out-of-control emotional one. I can usually think clearly, problem solve and make plans, but none of this matters (especially when I try to organize my thoughts enough to hold an intelligent conversation, trying to verbalize anything on my heart) when the emotional, and often irrational, side takes over, as it often does when I try to share my heart with anyone, especially my beloved groom. This is so overwhelming and painful to us both! Too often it feels that the emotional brain is winning.

On a totally different topic, I forgot to say that Wednesday my neurologist said something that really encouraged me. He said I was very driven and a go-getter and there was no reason to "kick my butt" like had had to do to try to motivate "most" other patients. I just had to record this before I forgot what he said. To any people in positions of power or care given, please never under-estimate the potential power of even your most casual words.

Verse of the day:
When I said, “My foot is slipping," your love, O Lord, supported me.
When anxiety was great within me, your consolation brought joy to my soul.

Psalm 94:18-19

Thursday, May 17, 2012

Neurologist, Ears & Kids

I went to see my neurologist yesterday. He 100% agreed with and supported our decision not to go into the ER and try to explain my medical history to staff Tuesday night. In fact, he rolled his eyes and nodded his head while I was explaining our though process about the matter. When he heard what was going on, he readily offered me a prescription for anti-nausea medication before I could even ask! About 6 last night, just before Rick got home with the medicine, my dramatically improved, like a light switch, so I never had to take any pills, but am glad to have it on hand now.

We now have the official diagnosis of what I have long-suspected, Pseudobulbar affect (PBA), also known as pathological laughing and crying or emotional incontinence. "The phenomenon of laughing and crying out of proportion to the underlying feelings of sadness or happiness was recognized by clinicians in the late 19th century as a common manifestation of acquired brain damage, especially stroke." (Wilson SAK. Some problems in neurology. Ii: Pathological laughing and crying. J Neurol Psychopathol. 1923;4:299-333.)

I've been complaining about a few melt-downs per day, or sometimes even per week. Reading information, I am thankful to have it so "easy" as some people deal with these episodes over 100 times per day. :( Still, it is not fun. I would say the emotional fall-out of PBA has been MUCH harder to deal with than even the frustration over the inability to walk all these months. PBA happens, depending on what statics you read, in about 20-60% of strokes. It has been a major part of what I have perceived to be fractures in our marriage. My husband is a saint to walk with me through this exhausting and constant, endless process!

Note to self: I still forgot to talk with the doctor about blood flow and my purple foot, about 40 pounds of weight gain since my strokes and about far-from-pre-stroke-normal acne, especially to my chin, neck and shoulders. If this doesn't make it onto a list, I won't remember to talk to anyone, since my short-term memory is shot!

Of the 8 things I did have on a list, only Tuesday's surgery and the resulting suggested change to my medications, the nausea, PBA and contingent plans in the absence of access to physical therapy (no, still no final decision yet) seemed to excite him any. It is so nice to be stable enough to actually seem half way "boring" to my doctor! I really don't want to be an "interesting learning case" any more. I go back in three months.

Monday I should get the tube in my ear and hopefully improve my hearing almost instantly. I think how one procedure would have been intense before. Now it is just another issue to check off a monster-list. No wonder we are stressed!

The kids come home this afternoon and are home for about 2 weeks this time. Much depends on their school progress over the next two weeks to determine if they stay home for good or go back to Fallon after their visit home. Either way, I think we are getting close. :) I will feel so much more stable to have our whole family home together, full time, when this school year ever ends!

I may need to call on several local friends for childcare or driving in the days to come, especially in June, when my parents are out of town for much of the month. Thank you.

Wednesday, May 16, 2012

Surgery Update (Chronic Crisis)

I feel like I should preface this post with a disclaimer. I am in a BAD mood as I write, so please take this into consideration as you read. I will try to present an honest picture of events and my thoughts, but this may well be colored by my current perception and any residual drug effects from yesterday's surgery. I apologize, in advance, for any ill-stated information. (The nurse said yesterday that I should consider myself, "under the influence," for at least 24 hours. Perhaps that is what is going on? Of course, that's what a "normal " person should expect, so add to that my syptoms of stroke are like drunkenness already and what do you get?)

Surgery/testing went surprising smoothly yesterday. Poor Rick had to deal with a sobbing, hysterical wife literally from the moment we stepped out of our front door until we reached the hospital. And again, several times through the morning, as we awaited my procedure, right up to the hallway outside the O.R. door. I sort of started to cry a couple times in front of my parents, but nothing remotely like when I'm alone with Rick or completely by myself. I usually don't cry with medical staff or any friends, but I cannot stop myself when I'm with Rick. I know it hurts him and is confusing. My reaction confuses me as well!

I kept thinking of how the stokes all started and how I never would have entered that office had I known I would have to leave by ambulance last Fall. I kept asking myself if I was making this choice with foreknowledge this time? My number one fear yesterday was having another stroke from the procedure. Especially one that took away memories of Rick or our kids. My second biggest was any complications that would keep me overnight in the hospital again. Thankfully, neither result happened! I know God would still be good even if my greatest fears were realized. I just so thankful that He spared me this!

I am not remotely afraid to die. I know where I am going and have seen the tiniest taste of God's glory. I know this life is fleeting and that it is very temporary. I actually welcome Eternity for this reason. My heart hurts at what it would cost my husband, kids and loved ones, but selfishly speaking, this would be my greatest desire. (No, I am not suicidal, just being real about what I feel.)

I am, very much, afraid of living in a progressively more broken shell, though. I have asked God, countless times, over the past months, to show me His purpose for the time I am still here on this earth, and I am realizing that nothing has changed about His calling on my life. I am still here to first of all worship God, bring Him glory, strive to be the best wife I can be to Rick (created by God to be his "helper suitable," for God created me uniquely to meet Rick's needs and is still enabling me with all I need to do this effectively - strokes change how this is all played out, but still fall within God's plan and didn't catch Him by surprise), to be the best Mom I am able to be (this has changed from what it was 7 months ago, but I have to trust God this is still enough), to be the daughter, sister and friend He calls me to be (not always the best I want to be by my definition of "best"), and even if I had none of those blessings, relationships or even basic abilities in my life, God craves an ever-deepening relationship with me. He's pursuing me, now what am I going to do differently to more actively pursue Him?

Some have asked why I did not call them prior to my hospital trip yesterday. The answer is not personal rejection. It is simply that I wanted God and Rick yesterday, and sometimes my parents. I knew I didn't have the strength to be up to seeing anyone else. No, no one else would have expected me to be "on" for them, but I would have put pressure on myself. Yesterday was stressful enough without inviting others to participate. God heard your prayer just as well from home as from my side and I appreciate every prayer, before, during or after surgery! Thank you for understanding.

One thing I would like to let folks know is that, nearly 7 moths after the initial catastrophe, we are still living in crisis mode. Our family is still not united, I am still not walking, doing my own laundry, consistently cooking, or caring for our home. (Thank you to Rick, my mom, Kathy, the meals team from church and all the others who fill in to carry my dropped load!) My calendar still is overflowing with almost more medical appointments than I can keep straight (thank you, again, Mom, for all that endless driving). Life is far from pre-stroke normal. We are living under the weight of daily stress. This is nearly impossible to wrap your mind around, no matter how sympathetic you long to be, unless you have lived, long-term, something similar.

It is far from even becoming a new normal of post-stroke reality. Some thing have started to normalize, like Rick's return to full-time work in his office. Other will hopefully start to return to normal within the next month, as kids (hopefully) return home full-time, I maybe stop another prescription, and my hearing issue (becoming constantly more problematic as I am interacting with the public and additional medical staff more) is addressed. Others might later in the year or next year, like when I try to get my driver's license back

We learned, yesterday, that I will likely be on one  medication for life, as the benefits (like hopefully reducing the risk of another blood clot or strokes from my prior surgery sight) far outweigh the nasty side-effects (significant bruising and heartburn). Some things will never be the same and I honestly wouldn't want everything to (though I wouldn't mind being blissfully ignorant of the changed realities).

Thank you to those God is still calling to pray daily. When you tell me this, it is the greatest gift I can imagine. I know many say, "I wish I could do something more than pray." But I tell you this is the most helpful "more" you can ever offer!

I talked to my (pretty elite, as he was the only one in the area who even could have attempted my surgeries and kept me from being sent out of state for care, last Fall) surgeon yesterday morning. He reiterated that my strokes, especially the one in my brain stem, was "quite significant." And surprised me when he looked me in the eyes and said, "I am sorry you are going through all this." That stood out to me from my day, yesterday! Of course I sobbed to Rick a bunch more as soon as he left.

We did ask for, and receive, anti-nausea medication in my I.V. prior to surgery yesterday. I still have little appetite and food, of any kind, makes me pretty nauseated. When they offered me some juice and a turkey sandwich a couple hours into recovery yesterday afternoon, I could only get a quarter of it down and asked for the nausea bag but thankfully did manage to keep things down at that time.

I was home by about 3:30 (had left the house about 7am) and had slept very little the night before, so I went straight to bed when I got home and, sleppy from the surgery medications, mostly slept pretty soundly until this morning. I did end up throwing up about 7 or 8 times, starting almost exactly 8 hour after the nausea medication had been given and about the time it should have worn off.

Of course it was after-hours, so the only number I could have called was an advice nurse who would have told me to go to the ER, something I was not remotely interested in doing and we honestly did not feel was medically warranted last night. I hate trying to explain cerebellar disease to medical staff, especially when I already am not feeling good. We knew that throwing up was an anticipated result of mixing cerebellum damage and surgery. It felt so good to sleep in my own bed last night and while I am still feeling quite nauseated (yes, I am planning to talk to my neurologist about this when I see him today) I have not thrown up any more since last night. :) I just wish I had an active prescription of Zofran on hand!

When I couldn't sleep the night before the surgery, I rehearsed, in my mind, every verse I could think of about anxiety or worry. I am prone to say that didn't help, but in reality, can you imagine how much worse off I would have been without God's peace? Thank you for praying! I leave you with thi verses I am clinging to, "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" Phillipians 4:6-7 (NIV).

Monday, May 14, 2012

Strange Day

It was a strange day. Here's what I started the day by posting to Facebook:
I am going up to the hospital for testing and per-registration this morning. The plan is that I will go back in the morning and be admitted for invasive testing tomorrow, but plan to come home tomorrow night. I'm freaking out and having major melt downs and flashbacks to two months in the hospital last fall. Please pray for peace! Good testing and results would be a good prayer too.
The per-registration and pretesting actually went well. (Thank you for your prayers!) We then went to visit the ICU where I spent the first week after my initial strokes. This was a very surreal experience as my mom pointed out places and remembered experiences, while nothing and no one seemed familiar or brought recollection for me. Even one of the few shadowy memories I have carried from that time, I learned was grossly inaccurate. 

Thank you for praying for me through the day tomorrow.

Saturday, May 12, 2012


So far my mom and I have both manged to keep from getting more than a touch of sickness, but Rick is down hard with it. :(

Still nothing on the insurance decision.

R. (9-year-old) was in a play last night. (Thank you, Teacher Nancy.) She did great and I walked in on Rick's arm, with my new pink cane. I still wasn't terribly steady, but it was another chance to practice. I laughed my way I the door, but we made it.

I didn't sleep terribly well last night. I had hived out pretty badly at the play and taken allergy medicine, so my system was pretty off balance, but thankfully I never had any breathing issues, so that is a huge praise. (If you haven't read about my latex allergy,you may not understand the importance of this praise.)

It is still pretty overwhelming and overstimulating for me, simply to be out in public or around so many people.

I do not have the perifreal vision I am used to, so I feel my body is ver much just a "shell" for my spirit when I try to look to the side.

I couldn;t hear most of the actors last night, so there was much contextual guessing on my part. I will be so glad to hear better, later this month!

If I could ask your prayers for a few issues, I would appreciate it. My roll as a Mom has dramatically changed. I am thankful to be a mom, but feel very part time and severly limited in my abilities in this. Mother's Day was hard for years because of infertility and loss, n ow it is hard again, for different reasons. Honestly. I am not looking forward to tomorrow. I'm more than thankful that I still have both my mom and 3 of my kids, I will just be sad to say goodbye to our kids again tomorrow night. I know it is a hard day for many, including those who have lost your moms or have been estranged from you mom and/or children. I'm praying of my friend Kendra too, like me a Mom, but not able to parent her children right now. Thank you for your prayer for my heart in this.

I will be back in the hospital next Tuesday for testing. It should me a fairly routein day, but I'm still nervous. Wednesday, I see my neurologist again. Thank you for your prayers.

Wednesday, May 9, 2012

Insurance Hiccup

I found out yesterday that insurance has not approved the continuation of my physical therapy. I was really upset about this last night, but just trying to roll with the punches today. We are appealing the decision, but this will take 2-3 weeks and insurance has already said to expect a "No" as our final answer, so at this point I will not be doing physical therapy until our new insurance year starts in July.

I knew, all along, that this could be a possibility, but the reality of present circumstances is harder to cope with than anticipated! My therapist didn't think there would be any issue, because of the severity of medical necessity.

I am still not walking, but it is close. The lapse in therapy will likely cause significant regression in my progress, but the insurance says their decision is not based on medical need, but rather on the limitations of our policy. Since I priced out out-of-pocket care today and found that it would average us nearly $500 per session (twice a week, discounted price), with no payment option so this does not sound do-able either. While continuance of care seems critical, I will have to be content to wait until July. I have never been so thankful for our fiscal year and a fresh restarting of care then!

I am thankful to have insurance and am thankful for what they have paid thus far, as we could be a lifetime of debt otherwise. I know God has used the care provided to me already to work much improvement. I know many have no coverage at all. So I am very thankful. I'm just not liking the fact that medical need is not a consideration of provision.

We have seen God move, outside of human contractual agreement, already since the stroke, so I know God is bigger than the circumstances. He may have some reason I am to wait for further care until July. If so, I want to be content in that. I would be lying if I said it wasn't an emotionally unsettling place to be in this waiting though!

Yesterday was a hard day, not only because of this news, but for humbling reasons I am not ready to share publicly. I want to be open about this journey, but know all too well how it can rob me of dignity, so there are a few very person things you will not hear here.

On the good news front, my left hand is now strong enough to rip toilet paper again, something I lost in the 4th, 5th or 6th stroke last fall. One morning, several weeks after the initial strokes and after I had started using my left side again (from the initial paralysis) I woke up and simply could no longer use my left hand well enough to grip even this. Praise the Lord for His work! I'm sorry if that sounds like TMI or somethink funny to celebrate, but to me it is a very big deal!

I did buy myself a new cane this week, pink and covered in a design of roses. I figure if I am going to be using a cane in my 30s, it might as well be a pretty one! Hopefully I can still progress into using it instead of the walker, soon, even with only home exercise.

I have managed to make a few meals this week, with help. Rick blessed us by bringing home tacos last night and my mom is bringing meat loaf over tonight. Between trying to learn how to work in the kitchen again and going from not having kids around at all to managing the needs of 3 sick kids, I am one tired lady! I've slept for long afternoon naps 3 of the last 4 days.

Please join us in prayer about medical coverage. I would love to see the looks of surprise on the staff of my therapy office when I, hopefully, walk back in there without a walker in early July, or even better yet, to have insurance approval to go back much sooner and be able to tell everyone that God did it!

Monday, May 7, 2012


Our kids have been home since Thursday and Friday (oldest came home then, as he had been too sick for the travel before). Unfortunately, we have had at least one feverish since Thursday night. After our second trip to the doctor, two vomiting kids and three that sound like barking seals when they cough, all three have started antibiotics tonight. I'm glad to have the extra time with them at home, but hate to see them feeling so miserable!

The good news is I'm exhausted enough that I slept soundly last night, until past sunrise this morning! This was after a long nap yesterday afternoon. Thank you for your prayers! Please continue to hold up both Rick and my mom, Betty, as I will be in sad shape if either of my primary care-givers get sick. I know my mom is especially tired right now.

The doctor says that the virus the kids have had (that since gone bacterial) is highly contagious. I worry about catching anything, not only because of all the other complications but because it would be miserable to get this congested with my dis-functioning eustation tube! Thankfully, the kids should no longer be contagious after 48 hours on antibiotics, so we have a good chance of getting the kids to homeschool co-op on Thursday and R's (9-year-old) play Friday night.

I am a little congested and have a mild cough, but nothing significant. I have more been battling elevated levels of nausea, seem to be choking more than normal and am battling bladder control issues. Today I am feeling done with the whole stroke experience. If only it were that easy...

A friend asked me if the emotional issues (excess crying and laughing or other outbursts, often unrelated to the actual situation or depth of my feelings related to any given situation) are common to stroke. From my research, this only happens about 20% of the time, but as I pointed out to my friend, my reaction isn't surprising since I had 6 strokes. She replied, "That's 120% odds."

On a similar note, depression happens in 50% of folks, post-stroke, so I would appreciate your ongoing prayers concerning this possibility as neuro pathways seek to repair and rewire. Since I am terribly sensitive to medications and hormonal imbalance, this would not be a pretty picture as there is little we could do, medically, if it were to happen.

Today in therapy. we continued working on walking and I made it to 1,300 steps on the seated stepper. It took me about 17 minutes, rather than my normal 15, but it was exciting to reach this goal.

The director of therapy took video of my progress to share with my doctors and therapists at the rehab hospital I stayed at in November and the first couple weeks of December.

One of the receptionist shared with me her memories of my initial tour of the outpatient therapy center (20 visits for physical therapy ago) when I came in wheel-chair bound and significantly with crossed eyes. She is excited by how much progress I have made so far.

Tatter-Tot casserole was in the oven (with my mom's help) and my 12-year-old muscle man just lifted it out for me. It feels wonderful to be (partially) working in my ownkitchen again!

Friday, May 4, 2012

Prayer Warriors

I am thankful for the amazing team of folks praying for me!

My upper back pain is almost completely resolved and took no attention or time out of therapy yesterday. Praise the Lord!

Yesterday, in therapy, we worked on walking, forward, backward and to both sides. I also have clearance to start walking around the house with a cane, as long as another adult is walking with me. The therapist thing that if I continue at my current rate of improvement, I could possibly be walking around the house by myself (this may mean a cane, but no walker) in maybe another month or two. Remember, at least two doctors and this therapist questioned that I would ever walk at all. It hasn't happened yet, but I want to keep pushing forth as if it will. I am also to continue trying to go without the walker, like when I walked into church on Rick's arm last week.

I have slept much better at night, the past two nights. Please keep this an ongoing matter of prayer. Thank you.

My nose spray (because the ustation tube goes from the back of the nose to the middle ear, why some people plug their noses and blow to pop their ears, like after swimming) has continued to give me headaches. I stopped last night and am currently just planning on the tube later this month.

I told Rick that even though my mouth still feels numb, I must be getting some feeling back, because when I bit myself 4 times the other day (common, because my mouth feels "swollen") I actually felt some pain. Rick said, "I don't know if I should say, 'Congratulations!' or, 'I'm sorry.'" I feel it is progress.

I said I would tell you how my crock pot dinner turned out last night. I still needed more help getting it all in the pot than I would have liked (thank you, Kathy), but it was ready when Rick came home from work, didn't take much additional time or effort to finish up, and it actually tasted good. We are getting this slowly figured out.

My eyes seem much more aligned to folks looking at me. I still see double, to the sides and even some right in front of me. The images are much closer and sometimes just exhibit as a single image with blurred edges. The glasses, in no way, address the doubled vision, but because they bring everything more into focus and my eyes are not so strained when I wear them, I am less likely to see doubled, or at least not as significantly doubled, when I wear them. My eyes look so much better that anyone looking presumes I'm seeing normally, unless I tell them otherwise. There was no doubt, even to the casual observer, even just a month or so ago, that I was cross-eyed!

I no longer think I look "disabled," like I still did even last week. I realized Sunday that I look pretty "normal" now. While anyone could tell by looking at me, before, that something wasn't right, for the most part people would half to hear me talk, see my stumbling walk, notice the walker by my side, or notice my left arm sometimes drawn unnaturally up to my chest, to realize I'm still fighting anything. Waiters actually treat me like everybody else and seem surprised when I scrape together my scratchy voice to place my order. I think my eyes have been a big part of this change, but also my coloring is better, my hair is growing a bit and the acne I've fought since the hospital is more manageable now. I still feel "broken," but it feels easier to go out in public when I don't so look it.

Thank you for all the encouragement and prayers!
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13

Thursday, May 3, 2012

Doing Better

Thank you for the encouragement and prayers last night and this morning. I remember it feeling "too long" after just a week or two in the hospital. I wasn't even fully aware enough to be marking time most of the first week of that.

I am doing better this morning. I slept better most of last night and my headache isn't so pesistant. I know I will still have up and down days, but I am through last night's really down swing now, thanks greatly to your prayers.

When I made the choice to be public in this journey, I never thought it would be all roses. I am doing this so others have the resource I have not been able to find. It was n ot intended as a way or place to drag my friends through all the yucky stuff with me. Still, I am blessed by your words of love and ongoing prayers, more than I can say. Thank you!

A verse God is putting on my heart is this, “Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12 NIV1984 God is so good! He truly is my strength through this weakness.

Wednesday, May 2, 2012


Tonight I am weary, plain and simple.

I am not sleeping well at night. (Remember my praise from last week? That was about the last good night of sleep.)

I have been battling a headache all day, I think in reaction to the nasal steroids I started taking earlier this week. I am thinking of stopping them and just being resigned to surgery for the ear tube. The headache is rather mild but quite annoying.

I am dreading going back in the hospital (now scheduled for May 15) and having the dye test to see what my MRI missed. Too many bad memories from my surgeries on Thanksgiving Day and especially the susequint night in ICU when too many things went wrong to even try to recount tonight. I know this won't be the same. I shouldn't even be there overnight. I just don't like the idea of going back to this place at all.

I desperately want to be able to turn my head smoothly, to hold a "normal" conversation with my husband, to speak a sentence without gasping for breath and spitting out monotone words with unnatural phrasing. To be able to think of what I want to say and then just say it without halting, starting, stopping, laughing (often with no real joy) and trying again, but still failing to fully express what's really on my mind.

I miss our kids. My heart breaks that another one is sick and I can do nothing for him.

I am overwhelmed.

I want to feel normal again.

I want this trial to be over. It seems like it has gone on much too long.

I feel like I need a good cry but know that would just leave my eyes scratchy and wouldn't really change anything.

I would like to end on an inspirational note. I am dry and have nothing to give at the moment. I know God is working here, I just have to take that on faith, the evidence of things hoped for and not seen.

I'm done whining now. Thank you for listening in on my pity-party. Tonight it is just all getting to me and I needed to vent a bit.

MRI News

I just got off the phone with a friend I haven't talked to in years. What a blessing to hear her voice!

Yesterday's MRI showed my brain looked "good," so whatever the details, this is encouraging news. Unfortunately, the MRI did not pick up a good picture of the artery where I had surgeries last Thanksgiving. The doctor says this is not uncommon, but they try to start with the least invasive test first. Since it didn't work, I am waiting for scheduling to call me to set me up for another day back in the hospital so they can inject dye through my leg and take better pictures of that artery.

My writing has been going well but God must have better plans. Yesterday I lost everything I have written since April 18, materials for both books. Yes, my wonderful hubby has tried to reclaim in for me but my drive is reformatted and wiped clean. Rick gave me a new drive and I am working on rewriting. Surprisingly, this did not cause me to emotionally melt down.  God is good, all the time.

P. (occupational therapists) is back in town from her conference. I think it went well this morning. She is excited that I might be getting a tube in my ear, not only for hearing restoration but because it might address some of my balance issues as well.

Dinner is in the crock pot. My mom did about half of the meal prep, but I did all the planning and shopped with Rick last weekend. This is progress, that I could do some preparation without it taking us hours to complete. I  think I actually even followed this receipe correctly, so I'll let you know how the end product turns out.

I haven't heard anything new on Kendra since Monday, so I have no news to share there.

Physical therapy tomorrow. Possibly a roast (I'll ask Kathy to brown it in the morning) in the crock pot. Kids home for the weekend, starting tomorrow afternoon, another weekend upon us.

Does anyone have great crock pot links to share? This is the only way I can figure out to make my kitchen work for a while.