Starting October 25 of 2011, "InfertilityMom," 39-year-old Jennifer Saake (founder of Hannah's Prayer Ministries), experienced 6 strokes, all due to vertebral dissection at a chiropractic office. The largest two strokes were brain stem and cerebellum bleeds. Jenni remained hospitalized until nearly Christmas and was not expected to live (near death experience) nor recover, but if she even survived, she was slated to live out her days in a nursing home or, best case, to maybe come home but wheelchair-bound and needing 24-hour care (please read more and watch short video). Jenni is now walking (with a cane or wheeled walker), has recovered much eye-sight, some hearing, partial use of her hands, cares for most of her own personal/toiletry needs, and is currently writing three books, maintains multiple blogs, and stays active on both Facebook and Pinterest. Near the five-year recovery mark, Jenni has renewed her pre-stroke excitement about the unique Lilla Rose hair Flexi eight jewelry she sells and has finally regained enough hand/arm function to regularly use! (The biggest ongoing losses at the 4 1/2-year point of recovery are left-side nerve pain, inability to drive, loss of homeschool teaching capability, significant sound processing issues (often triggering nausea), and some profound physical ability limitations such as a limp, balance challenges, clumsy use of right hand and only large motor function in left hand.) Here is her resume.

Since Jenni's chiropractor carried no insurance and moved out of the country soon after the accident (thus avoiding any legal or financial consequences), if you would like to help contribute to the Saake (pronounced like the two small words, say and key) family's massive financial needs (medical expenses alone are estimated to cost between $1- and $1.5- Million in Jenni's lifetime), please visit Jennifer Saake's Stroke Survivor GoFundMe Page. (This support information has been added in direct response to several reader requests.) The Saakes sincerely thank you for your prayers and if God prompts and equipts you to send any monetary assistance as well, this is a significant added blessing.

Jenni is clinging to God's grace through the entire experience. Here is her unfolding story, documented in her own words (typing with only her right hand), as she perceives it happening in real time, messy, honest and to the glory of God...

Tuesday, November 27, 2012

Restore

I got lost in Target today. More specifically, Mom and I got separated. I was panicky for a moment, then calmed down, prayed and picked up my cell phone. It wouldn't dial my mom's cell number for some reason, so I called my dad at home (that worked by the second try) and had him call my mom and tell her where to find me. About that the time I hung up, a voice came over the loud speaker, paging me to meet my mother at the snack bar. I knew how to get there, so we found each other. But I realized that is the first time I have been unchaperoned (away from our house) since the strokes. And yes, Kendra, the dizziness REALLY kicked up when I felt the stress of realizing I was lost! I seriously thought about going up to an employee and telling them, "Help. I lost my Mommy," but wouldn't have begun to know how to explain that one beyond the first statement! LOL Do you know any other 40-year-olds who get paged to meet their Mommies in stores? It was quite an adventure. We left the store in a fit of giggles and neither of us even made a purchase. 

I do have an infection impacting lungs and sinuses (she didn't specify what kind) so I started antibiotics yesterday. Praising the Lord that it doesn't look like an antibiotic-resistant strain this time! Overall, I've been up and going (today was a busy doctor appointment day, with the Target trip between two appointments), though it took longer than usual to get going this morning. Kendra's therapist told her that even a slight cold can put a stroke patient back in recovery by 8(? - how many, Kendra) weeks.

My test study results were dismal this week. I have regressed significantly over the past week. This may be, in part, attributed to not feeling my best because of the infection, or it could be that I had taken the real drug for the first three weeks straight and (my speculation) started the placebo a week ago, or both of these issues combined.

I asked my doctor if my previous speculation (about possibly being the only brain stem stroke patient in the study) could hold any validity? She informed me that I am one of at least 4 brain stem participating that she is aware of, but that it could easily be that I have been on the real drug while the others may have started their first three weeks just on the placebo and they haven't gotten to the real drug yet. Since I am the first study participant at our location, I am a few weeks ahead of most other participants, so this is quite possible, mathematically. We shall see (though not until the study is finalized). She did agree that a brain stem stoke would likely be much different in reaction from other forms of stroke.

My mom is waiting to see a second (and possibly third, depending on what is decided at her next appointment) doctor, concerning her knee, this week. We may be looking at a knee replacement surgery in the near future (the other was replaced a few years back). Please be in prayer for wisdom for the doctors and peace for Betty (who has a huge, swollen knee that, at very least, will probably need fluid drained this week). Mom does almost all my laundry and driving still. And it is my Mommy we are talking about here! Thank you for the prayers!

Rick came home from work, sick tonight. He is hoping to sleep it off tonight and be better by morning. I'm not as optimistic, having watched each family member fall to this bug, one by one. Prayers for him too, would be greatly appreciated!

A friend sent me a card with the following poem:
Angel of God,
my guardian dear,
to whom his love
commits me here;
Ever this day
be at my side,
To light and guard,
to rule and guide.
I don't subscribe to today's popular "angel theology" that can run so rampant, but I did love this verse because it points out that God commits me here out of love. (If you don't know why this idea is so profound to me, read What The Camera Can't Capture.)

I still struggle with this thought often, and today it clicked a little more of why I struggle. Actually, it started to form as a gelatinous thought at church, a week ago. We were singing, "Cast me not away from your presence, Oh Lord, and take not your Holy Spirit from me..." and I started to cry. I am thankful that I have the New Testament assurance of salvation, that God promises to never leave me or forsake me, that I have no need to plead for God to not take His Holy Spirit from me! Tears of overwhelming thanksgiving on that count!

On the other hand, I have likened sunrises to a dim glimmer of Heaven. This morning, I watch a glorious sunrise. I watched just a sliver of it, mentioned it to Rick, and he opened the blinds all the way so I could see it more fully. With the pull of the cord, he quickly plunged the room back into darkness, to finish getting ready for the day. 

That's when the thought solidified for me, that for the past 13 months I have been wrestling with the Lord about being "cast away" from His presence. Like the sudden shift from the beauty of sunrise to the depth of darkness in our bedroom, I have grieved the unheralded shift from Glory and grace to earth's dullness and pain. I think the jolted realities are best described as culture shock!

As I waited and my eyes adjusted, our room wasn't nearly as black as it had first seemed. In fact it was filled with early dawn light and I could watch my husband's preparations for the day pretty clearly. It had only seemed so black because of the sudden contrast from such brilliance to lower light.

Sticking with the sunrise theme, it occurred to me that the prettiest sunrises are the ones with clouds. A cloudless sky is often described as "best," but when there are no clouds, there is no brilliant shifting of color, nothing to reflect the sun's rays. When there are too many clouds, the light from the sun isn't evident for a while, but the sun is still just as much there, just veiled for a while, but still just as certain! I believe it is the same with the Son - that the absence of trials prevents His Light from being magnified, but He remains a constant even when troubles strive to overshadow His goodness. 

I'm going to keep playing with these ideas. You will likely see further evolution of these thoughts in my stroke book. While only a poor reflection, I am making an intentional effort to find beauty now, for the same God who authored Grace, molded these mountain and painted these sunrises, for my enjoyment. Rather than focusing on lack, I want to transition into the "restore unto me the joy" phase now, thanking God for the gifts He has given.
My counsel for you is simple and straightforward: Just go ahead with what you’ve been given. You received Christ Jesus, the Master; now live him. You’re deeply rooted in him. You’re well constructed upon him. You know your way around the faith. Now do what you’ve been taught. School’s out; quit studying the subject and start living it! And let your living spill over into thanksgiving. Col 2:6-7 The Message


Sunday, November 25, 2012

13 months

I have a cold. Not a big deal, right?

Since I had private rooms most of my two months of hospital stays, thanks to an antibiotic-resistant infection that still wasn't clear (according to my medical records) 6 months ago when I went back to the hospital for one of my surgeries, and I'm already having issues with my throat (breathing, swallowing) under every day circumstances, I feel entitled to whine over this current concern a bit.

If I don't wake up feeling ready to return to water therapy in the morning (it's been 2 weeks since I've gone, because all three kids past around the cold virus part, then my mom got it and it went bacterial on her, so she is on antibiotics), I'm calling the doctor. As my stroke friends and I are discovering, there is rarely anything "simple" in stroke recovery. Even if it is just a "normal" cold, it could potentially become very dangerous and/or take a much longer time to recover from, for me.

So, in case you don't hear from me a bit, that is what is going on here.

I think I had another reason for deciding I should post tonight, but I have no idea what I was going to tell you now. I guess one good thing is, for the first time since the stroke, I made it through most of the day before I even realized this date was another "anniversary!"

Racking my brain, the only other fleeting observation that might be interesting enough to post is that I still read slower than my 6 year old can (though reading speed has slowly improved a bit) but my short term memory seems to be improving a bit too. Until recently, I could remember most longer-term things (like childhood or Rick's and my dating days or early years of marriage), but not a conversation I had a week ago. A while (couple months maybe? - whenever I started seeing my counselor) ago, I realized that I was finally able to recall things as recently as three days back.

Last night, I could recall a portion of a conversation from 5 minutes earlier, but still not the things just said, or when I'm counting off therapy exercises, I count 8, 9, then in the span of time I've counted 9 numbers, I can't remember which ten-count I'm in, so I don't know if I should count "30," "40," or "70" when I get to the end of that 10-count. I figure the advantage of this is that I always default to the lowest count I think I may possibly be, so I probably end up doing an extra 10, 20, 30 or more repetitions of exercise this way. :) That may just about evens out for the times I might unintentionally skip 10 or more repetitions in a block.

I'm still blogging daily (so far, even while I'm sick) over at InfertilityMom. While there are some bits about infertility, loss, and chronic illness, much has been about the strokes. I am surprising even myself with the memories and details I have been posting over there, this month! Here's today's post.

And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him. Colossians 3:17

Thursday, November 22, 2012

Jumping for Joy

I jumped for the first time in over a YEAR, yesterday at therapy. Granted, I could only jump an inch or two off the ground, only straight up (not sideways), and I had to hold onto a ledge (counter, sideboard, windowsill, etc.). I was able to do it a few times in a row at therapy, then a few more jumps, one at a time, to show family members throughout the day! This may sound silly, but it left me giddy, in a way even more exciting than learning to walk again, I think because although it is something I had missed being able to do, I hadn't obsessed over the lack or striven for it like I did with the ability to walk again. That I was able to do it (something I did not imagine would ever really happen again) without all the anticipation, took me by happy surprise. This new-found skill is what I'm ever-so-thankful for today.

I have been fighting a sore throat for about 12 days now. Originally it was from burning my throat (I had a couple of life-threatening broncho-spasms a few weeks ago, where my airway totally constricted and I couldn't breath at all, swallow, speak or move any air) when I had warm soup caught in my throat and couldn't do anything to move it. Finally, last Thursday and Friday I had about a day and a half with no sore throat, then I've been trying to fight off a cold since then. Yesterday, I finally gave up the phrase "trying to fight," when I woke up with little voice, and had to admit that I do have the cold now. I'm really praying this doesn't mess my ear up again, sine the eustation tube still can't equalize pressure well.

Yesterday came with a rude awakening in more ways than one. I'd either switched from the real meds to the placebo for my 8:30PM dose on Tuesday night, or from the placebo to the real medication. I woke up about midnight and was stunned to discover that my legs would hardly support me to walk again! I used the cane (even in my own home) to get around yesterday morning, but by about mid morning and an hour of focused therapy, I was getting around fairly well again. My speculation is that I have just made the switch to placebo and that the alternative pathways my brain has been building this past year just took a few hours to kick back in after the medication has been working so hard to bring the primary pathways back on line over the last several weeks. Of course, that is just my patient guess, not known medical reality in any way, but that's my current take on what's happening within my own body.

I also successfully took a bath tonight. We didn't make the water too warm, we set the timer for 15 minutes, and Rick helped me in and out, so we avoided most of the problems from last time. I'm thrilled we found a more workable solution. It still wasn't as enjoyable as pre-stroke, but it was better than a month ago!

Other than being very tired and drained today (this cold seems to put even the healthiest of people down hard in bed for a day or more), it has been a surprisingly tear-free day, for which I am also thankful. I focused a lot on unhappy memories from last Thanksgiving when I first woke up this morning, and felt rather melancholy at odd times throughout the day, but overall it has been a better day than I expected. Praise God!

I think there will be other big changes coming to our household in the near future. I hope to announce once everything is finalized in another week or two. This change brings both surprising relief intermixed with a measure of huge disappointment, but I think will be for good in the end, though it will be a massive change to our lives! Even the consideration of possibilities leaves me both excited and sad/nervous. I know I'm not giving much detail, but please pray for Rick and I to have wisdom in this very huge decision.

My parents came over today with homemade pies, stuck a turkey and several sides in our oven. Rick mashed potatoes and we had a lovely mid-afternoon dinner. I'm so very thankful for family!



My goal this year is to find reasons for thankfulness and my prayer is for the Lord to more fully restore joy in my heart again. It has been a long year, but God remains faithful. This last week, I feel as if I'm starting to emerge from a long, dark tunnel in a new way. I told my therapist, I now feel like I'm at about 70% acceptance to 30% frustration. That's much higher on the frustration side than a want to be, but a far cry from where I was even still a couple months ago. God is good.
Since, then, you have been raised with Christ, set your hearts on things above, where Christ is. For you died, and your life is now hidden with Christ in God. Col 3:1

Friday, November 16, 2012

Bearing My Heart

I just posted a story on my InfertilityMom blog that I consider to be the most profound, soul-bearing, some might consider TMI post, I have ever shared online. It really belongs in this stroke journal, but since I just posted it elsewhere, I would love if you go there to read it (because I'm trying to take the easy way out and link instead of copying and re-posting here. Something I plan to still do later unless hit count indicates that it has been well read by my stroke readers). I would say this is the very most critical and pivotal part of my stroke story!

While I am revealing such intimate details, here are a collection of nearly all the pictures this camera-shy gal has allowed to be taken over the past year. These take a ton of guts to post, because I have so hated seeing what the camera (or mirror) tells me about my body changes this past year.


I did have one exciting, new-to-me revelation that a friend (also with severe brain damage) shared with me this week, concerning our loud and uncontrollable tendency toward laughter. Now I will try to think of this tendency (that I have hitherto been embarrassed about) as the spilling over the joy of the Lord. :)

It was the right side of my brain (linked to left side of my body) that was primarily affected by my strokes. I don't *think* I still have many of these issues (at least not too profoundly anymore), but then again, it says I wouldn't probably realize if I did, so who knows? This week, The Stroke Network posted the following helpful information:  

What is right hemisphere brain damage?

Right hemisphere brain damage is damage to the right side of the brain. The brain is made up of two sides, or hemispheres. Each hemisphere is responsible for different body functions and skills. In most people, the left side of the brain contains the person's language centers. The right side controls cognitive functioning (thinking skills).

Damage to the right hemisphere of the brain leads to cognitive-communication problems, such as impaired memory, attention problems and poor reasoning. In many cases, the person with right brain damage is not aware of the problems that he or she is experiencing (anosognosia).

What are some signs or symptoms of right hemisphere brain damage?

Cognitive-communication problems that can occur from right hemisphere damage include difficulty with the following:

attention

left-side neglect

memory

organization

orientation

problem solving

reasoning

social communication (Pragmatics)

Attention: difficulty concentrating on a task and paying attention for more than a few minutes at a time. Doing more than one thing at a time may be difficult or impossible.

Left-side neglect: a form of attention deficit. Essentially, the individual no longer acknowledges the left side of his/her body or space. These individuals will not brush the left side of their hair, for example, or eat food on the left side of their plate, as they do not see them or look for them. Reading is also affected as the individual does not read the words on the left side of the page, starting only from the middle.

Memory: problems remembering information, such as street names or important dates, and learning new information easily.

Orientation: difficulty recalling the date, time, or place. The individual may also be disoriented to self, meaning that he/she cannot correctly recall personal information, such as birth date, age, or family names.

Organization: trouble telling a story in order,giving directions, or maintaining a topic during conversations.

Problem solving: difficulty responding appropriately to common events, such as a car breakdown or overflowing sink. Leaving the individual unsupervised may be dangerous in such cases, as he or she could cause injury to himself or herself, or others.

Reasoning: difficulty interpreting abstract language, such as metaphors, or responding to humor appropriately.

Social communication (pragmatics): problems understanding nonverbal cues and following the rules of communication (e.g., saying inappropriate things, not using facial expressions, talking at the wrong time).

What treatment is available for individuals with right hemisphere brain damage?

A person with right hemisphere brain damage should see a speech-language pathologist (SLP), a professional trained to work with people with communication disorders, in addition to his or her doctor.

The SLP will work with the person and develop a treatment plan designed to improve his or her cognitive-communication abilities.

How can I communicate more effectively with a person with right hemisphere brain damage?

Ask questions and use reminders to keep the individual on topic

Avoid sarcasm, metaphors, etc., when speaking to the individual

Provide a consistent routine every day

Break down instructions to small steps and repeat directions as needed

Decrease distractions when communicating

Provide appropriate supervision to ensure the person's safety

Stand to the person's right side and place objects to the person's right if he or she is experiencing left-side neglect

Use calendars, clocks, and notepads to remind the person of important information

P.S. I reported on Kendra's story yesterday. If you haven't had a chance to read it yet, it is highly (emotionally) entwined with my own, so you really will want to take a few minutes to read!
Psalm 19:8
The precepts of the LORD are right, giving joy to the heart. The commands of the LORD are radiant, giving light to the eyes.

Wednesday, November 14, 2012

Horses and Zebras

I seem to be making (very) slow (at least by my estimation) but measurable progress in recovery, due to the research study. I am now up to being able to move 21 blocks with my left hand in one minute (14, 3 weeks ago, 19 a week ago). In a week my right hand is also up from 60 to 62.

I don't know each individual test result, but my therapist did say I returned my fastest walking time so far, when he timed me yesterday. On a few different tests, he remarked on the substantial improvement over last week.  The site manager (who travels around, visiting each participant clinic and meeting with our doctors) is even impressed enough by my progress that she also speculates I am on the real drug (not placebo) right now (for another week, then a switch to what we presume will be placebo for another three weeks).

I don't feel different, but the test results say there is some improvement. I was hoping I might actually be able to tell a marked difference if we were having positive outcomes from the study, but improvement is improvement, and I'll take it!

As for side effects, my overseeing doctor says I am the only one in the study that has reported most of the negatives I have. Now, to be fair, she says I am incredibly meticulous and it may well be that others are experiencing similar things, but they are so mild that they don't think to report them (she originally told me she needed to know EVERYTHING, like even if I had an itchy nose, so I am documenting even the most remote, far-fetched and mildest symptoms) or they don't even think about the possibility of those symptoms being medication-related, since many could simply be stroke-related anyway.

But even if I am the only one (we are probably only talking less than 50 people here, as the study is to only have about 68 participants, county-wide, and our local phase is only half filled so far) experiencing these symptoms, I'm not terribly surprised. When she told us this yesterday, my mom and I both responded, "So when have I ever done anything medically normally?"

There are at least two issues at play here. I would imagine I am one of the only brain stem stroke participants (very possibly, the only?) in the study. Apparently, even in the stroke world, brain stem strokes are a class unto themselves. Bluntly, there just aren't that many even semi-functional survivors out there! When someone (rarely) does survive, the symptoms and remaining deficits, are generally much more severe and different from the more common forms of stroke. I don't think it had sunken into my brain how bad things were until I told my story to a stoke survivor forum and I got back several replies about how my story stunned and amazed them all - this from a community of stroke survivors themselves! Talk about wake up call!

Secondly this is my body we are talking about here, and my body has never been known to do things "normally." As a dear friend (who has know me for 15-20 years) observed, "It wasn't good enough to just go and have a horse kind of average stroke. You had to go and have a zebra kind, because having any old stroke just wasn't what you do!" Yep, that about sums it up. Related, but two totally different animals in the same broad category.


Edited to add that weeks after this post was written, I came across a similar blog concept that much more fully explains the phrase "zebra" at My Life As A Zebra. :)

I am still on track with my month-worth of blogging posts over on my InfertilityMom blog. :) Yesterday's post (What NOT To Say to an Infertile Couple, and Why) already has more hits than any other post in my five years of blogging history there. Today's post is somewhat related, about forums, and including why Hannah's Prayer (infertility and miscarriage community I helped launch) is still so precious to me. I am especially excited about tomorrow's post about my friend Kendra and her strokes, so please come back and check there tomorrow!
But in your hearts set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect, keeping a clear conscience, so that those who speak maliciously against your good behavior in Christ may be ashamed of their slander. It is better, if it is God’s will, to suffer for doing good than for doing evil. For Christ died for sins once for all, the righteous for the unrighteous, to bring you to God. He was put to death in the body but made alive by the Spirit... - 1 Peter 3:15-18

(Sorry I've been forgetting to post verses lately!)

Friday, November 9, 2012

Keep Forgetting

I have an assortment of small details that I keep meaning to tell you, but keep forgetting to post. So I guess I have enough to make up their own post now!

I tend to think of my left side as my "affected" or weak side, thus of my right as my "unaffected" or strong side. In thinking this way, I tend to forget that I have bi-lateral stroke impacts since I had so many strokes, all over my brain. The left is so much worse than the right, that when a therapist wants my to use my "good" arm or leg, they are always talking about the right side. I like how Kendra words it, more accurately, I should call it my lesser-affected side!

My parents took me to cast an early voting ballet last week. I am right-handed (and that is my better side), so it was natural to grasp the pencil/pusher with my right hand. I initially tried to hold it in a standard pencil grip (after-all, I can do that to write short phrases or my name) but I couldn't target the voting buttons with accuracy this way since I was trying to hold the pusher over the screen, then control enough to squarely hit the little voting boxes. My arm shook and my hand landed wildly off cource. It really surprised me  at the amount of wildness and unpredictability in that fine motor skill attempt, and that's what got me really thinking on handedness again.

In frustration, I grabbed the pencil in my fist, across the mid-section, much like a toddler might grasp a crayon, then jabbed my selections against the computer screen, like I was stabbing it. It wasn't terribly graceful, but I figured out a solution and ultimately, I did it! My physical therapist laughed when I described the situation to him, then said, "Good for you!" when I talked about violently jabbing the voting machine. This year has shown me that the old saying just isn't always true, "When there's a will, there's a way." This time, it thankfully was!

A few night ago, I had insomnia for over three hour in the middle of the night. After the first hour, I gave up and got out of bed. That night, our little girl had a bad dream and, for the first time since the strokes, actually came looking for me to comfort her (and then I wasn't even in bed, so she woke my husband up to find me out in the living room). To me, it was a really big deal! Oh, the waterworks (on my part) of thanksgiving and joy. I hate that she got scared. But what a healing blessing that she actively sought of her Mommy again!

Today, our water therapy instructor asked both my mom and I if we had been dieting. She said we both need to get new swim suits because ours are starting to fall off. That was nice to be validated by her! I found slimming swimwear at 90% off, so I've ordered the next three smaller sizes, optimistically hoping I will be putting them each to use over time.

I feel like weight loss is going tediously slow (I'm stalled out at about 8 pounds under my diet starting weight, about the time I started water fitness, 15 pounds down from my total highest) and I play around with about 3 pounds I just keep re-adding and dropping again. This kind of tangible encouragement today was such a blessing! I guess I am firming up al loosing some fat and inches anyway.

M. also said I'm "entertaining to watch" try to keep up with some variation of movements that the rest of the class is working on. She is genuinely interested in me as a person and my recovery goals. She is also fascinated by the way the brain and muscle movements work together. Today, she got caught up in watching me so much so that she got distracted from teaching the rest of the class and had to refocus before she could continue the hour. I love Monday mornings, even it it is HARD work!

I told her when she starts the class on a set of exercises and counts down, "Just 9 more, 8 more, 7 more.." all the way down to, "Now other side," I often feel proud of myself if I've managed to accomplish even one on each side before the class moves on to the next thing. Sometimes I want to groan when she says, "Other side," because I haven't even figured out how to move that way on the first side, or because I have just finally figured out what I supposed to do, then it is time to switch sides or activities and it takes so long for my brain to transition and for me to catch up. It isn't uncommon for me to miss a set all together because I'm just finishing up an attempt at the previous one when they are ready to move on yet again.

M. always encourages me to not become discouraged but just to keep trying. I still feel terribly slow and uncoordinated. I'm not seeing progress in my skill set over when I joined the class about 2 1/2 months ago, but she says she sees a big difference already. Today she commented on a specific move she says I was incapable of doing when I joined the class. I don't remember that this is a newer skill, so it is good to hear her observation of improvement!

Not trying to be a whiner here, but since I'm trying to keep an accurate log for future reference, physically, my left side is hurting a lot more the past several days, more so that it has already been hurting. My neck and shoulder are the worst, but my wrist, back of my leg (around the knee) and jaw are pretty nasty too. Actually, my whole left arm, and entire left side of my face. Even a little bump on my forearm, makes me want to jump away from the pain. My left ankle doesn't particularly hurt more than normal, just feels pretty stiff and pops a fair amount. My right shoulder and jaw are also rather sore/fatigued from doing double duty all year, but the pain is different. I'm pretty nauseated the past couple days, but no near vomiting scares, like the week before (when, strangely, I didn't feel particularly sick to my stomach) I'm trying to see the positive in this upswing of pain, that perhaps nerves and/or brain connections are just waking up (from the trial meds???), so I'm feeling them more?

Thursday, November 8, 2012

Aging

Today is Rick's birthday. Last year I had *just* moved over to the rehab hospital (before my second 3 strokes) so it has a hospital birthday. I have very mixed feelings about today because it's tainted with hospital memories. (Thank you mom and V. for helping me pull off some surprises from the hospital bed last year. I couldn't have done it without you!)

My first thought is I am so thankful Rick was born, that God put us together and that I am privileged to share this earthly journey with him. I would be blessed to marry him all over if I had the choice to make again.

My next thought is that I wish I had much more "me" to offer him. He deserves so much more. (Yuck, I was determined not to cry today. So much for that!)

Yesterday I managed to wrap a small box for Rick by rolling it in a big sheet of tissue paper. Trickier than it sounds, with only one hand! It wasn't pretty, but I did it myself! :)

Our 12-year-old is going to make a cake. My mom is making meatloaf that he loves for dinner. I'm kind of bummed because his main gift still hasn't come in the mail. I got up and microwaved bacon this morning (Rick doesn't usually eat breakfast at all and I usually do not get out of bed that early), so that was a big deal to me.

Rick had dark hair last year, when this all started, and now is over half grey. I have a friend who I guess is probably my age or a little younger. She was in a car accident and suffered dramatic brain injury 9 or 10 years ago. I didn't meet her until after the accident and her husband has been totally gray as long as I've known them. Made me think I've really aged Rick this year - poor guy! I actually like the look and think he is very handsome, I just feel sad that if it weren't because of all I've put him through this year, the change probably wouldn't be nearly so profound!

As for the research study, I have finished the first week of study drugs (or placebo) and I had to report a whole page worth of negative side effects yesterday, BUT I saw marked improvement in several scores already. Two weeks ago I could move 14 blocks to a box in one minute, with my left hand. Yesterday I could move 19 in the same time frame! (For reference I could do 60 with my right hand.)

I was determined not to fall victim to any placebo effect, but my side effects have all been neurological (my doctor said she would expect me to report "symptoms" all over the board if the changes were just mental) along with the areas of improvement, we are thinking I likely am or the real drug??? For some reason, I had just expected I would be a the placebo for the first three weeks, so I'm rather taken by surprise by the rapid changes. 

When my therapist ran me through one test yesterday and I could hold a paper without allowing him to pull it out of my grasp, he laughed because he said my eyes got huge with surprise. I haven't been able to do that in over a year! There are areas where I am worse (like balance and walking stability). but I'm hopefully attributing these changes to the rewiring of my brain. Overall, there were LOTS of very encouraging signs yesterday!


Here's a Letter to My Body today, based on thought over this past year.

Saturday, November 3, 2012

Striving for Visibility

Last weekend I posted about being discouraged over being misunderstood. Today I rediscovered a video I had posted on my InfertilityMom blog a few years back. It is SO good, I was in tears again watching it today. I knew I had to share it with you. So fitting after last weekend's post!

 
Speaking of my other blogs, part of my quest to get back to a "new normal," is to revitalize my writing skills to meet challenges, other's themes and deadlines, once again. This month, I am trying to participate in a 30 posts in 30 days challenge called the National Health Blog Post Month (NHBPM 2012) or #NHBPM. It may not turn out to be great writing, but I think it will be a good challenge to be writing "on assignment" once again. :) I'm trying to exercise that brain, along with my body! If you decide to join me, I would love the encouragement of having you post an occasional comment!

Friday, November 2, 2012

Started New Meds!

Today has been a long day. I posted about the main scare, involving chocking and my impaired swallowing reflex on my InfertilityMom blog. I've previously written about swallowing issues (with a friend) and am looking for that correspondence to edit in here for history. I am praying that I don't end up getting pneumonia or some other lung infection as a result of the aspiration! That would not be fun.

I started my new medicine (or maybe the placebo?) for the drug study, this past Tuesday night. Not feeling any real advantage yet, but I have had some pretty nasty head aches and a kick up in dizzy spells again. I've also had a few instances of close vomiting calls and have no idea if today's chocking (that induced vomiting) was related to the medication or not. I've also had a very minor bit of muscle twitching. It's hard to know what of this might have happened anyway, or what might be related to the clinical trial? I have to report it all anyway, even if the medication is, in no way, related.

I'm posting here because I know if I don't write it down, I won't remember, any more than I'll probably remember to turn my clock back tomorrow night! Speaking of time change, my brain is getting a work out, trying to calculate how to take my medication exactly every 12 hour (I can go a little over 12 if I need to, but never less than 12) and still be taking it at 8am or 8pm every dose, so it doesn't mess up the timing on my blood draw on Tuesday. I think I will go for 8:20 Saturday morning, 8:40 Saturday night, thing 8am (would be 9am if it weren't for the time change and I've done my math correctly) on Sunday morning. Does that sound right, since we "fall back" on hour Saturday night?

While all those possible side effects sounds pretty bad, it really hasn't been. I'm trying to see this all as a good thing, that maybe damaged parts of my brain are trying to come back online a bit again? I'm going to feel pretty silly for these "symptoms" if I eventually find out these have just been placebo weeks! Anyway, we are finally under way and I'm glad. I'm praying that no complications (like getting a lung infection or having any kind of more severe medication reaction) sidetrack us now!

The muscles around my the back of my left knee are really tight and sore. I think I'm walking worse than before, so far, but maybe that's just a different technique I have been working on in therapy, in how to move my leg? I did notice Wednesday that I was happier holding my left arm down to my side for a few minutes, rather than pulled up against my chest like I normally hold it, so I guess that might be a small measure of progress. :)

I found a new (to me) stroke forum recently, that I guess I need to get added to my resource list. I'm just starting to find my way around, but so far the folks there seem helpful and nice. StrokeNet 

Here was some recent (last month) correspondence between myself and one of the several friends who helped me pinpoint what I needed to talk about with my doctor concerning TN issues (and who I also talked to about my swallow reflex).  I stress that I do NOT have a diagnosis of Central Pain Syndrome at this time, but maybe its worthwhile to talk to one of my doctors, this time about potential CPS issues. Sometimes I get weary of "collecting" new diagnoses for long-standing issues. More specifically, I get tired of the pain! Having a label does not help the symptoms at all, but it is good to learn any explanation.
Crystal: This is a wonderful video to describe what CPS is like. There have been a few possibilities mentioned for my CPS ; a fall I suffered that caused bulged disks, a hit on my head that caused a concussion, or disease activity of my auto immune condition, or a combination. Regardless the outcome is very similar. The need for rest, the medication cocktail, the need for specialists...
Jenni:  What you describe sounds much like the left (stroke effected) side of my body. {very-gentle-hugs}
Crystal: Oh no! I've been praying against that being true for you... Though it does not surprise me in the least. I'm so sorry you are feeling that way!

1 Peter 4:12
Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you.