Thirty-nine-year-old Jennifer Saake (founder, Hannah's Prayer Ministries), experienced 6 strokes via vertebral dissection at a chiropractic office, including brain stem and cerebellum bleeds, in Oct. 2011. Jenni remained hospitalized for nearly 2 months and was not expected to live (near death experience) nor recover, but if she even survived, she was slated to live out her days in a nursing home or, best case, to maybe come home but wheelchair-bound and needing 24-hour care. At 5 years, 7 months God showed how He was writing her story from the beginning.

Jenni is currently writing more books and stays active on both Facebook and Pinterest. Here is her resume.

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

Sunday, October 28, 2012

Misunderstood

I wrote the following, early this morning. Thanks to my wonderful hubby and his insistance that we work through many issues and emotions, I am doing MUCH better this afternoon (and no tears in several hours). Still, I will post what I wrote to give a taste for the rapidly and sometimes dramatic sway of emotions that can be so prevalent.


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I am having a grumpy morning!

Actually, it had been a good day Friday and another good one Saturday. I had even encouraged a friend that, with a few adjustments, life was even starting to feel close to "normal" again.

And then I lost it last night. I sat in the shower sobbing and was teary the rest of the evening. I woke up teary this morning and am still feeling pretty fragile.

I am tired of oral communication being so challenging. I'm ready to have a pity party today.Honestly, I'm just so fed up, I want to stop talking all together. Dare I say, I want to stop fighting. I want to stop all of this. I want life to stop being so hard! But if I have to choose one area, I want to stop being misunderstood.

On Friday, I tried to talk to Rick about Christmas gift planning. To attempt to hold a simple conversation, we could not get through all the (mostly kid) interruptions. It takes so much effort just to talk. To make that effort, then not even be heard (my voice is very weakened by the strokes) makes me want to yell, if only I had the vocal capacity to do so.

I also told Rick I wanted to spend the day with him (he was off for the day). He proceeded to make plans to run errands with one or two of the kids (leaving me home with the other(s) ) because he did not understand me and was trying to do the nicest thing by giving me a break. We eventually more clearly communicated and changed our plans so we could be together, but the original miscommunication was still frustrating.

On Saturday, we went to a parade as a family. What fun and what a normal feeling thing to do. Again, I was blindsided when I couldn't just casually chat with the folks around us, like I would have in the past. I could have made more effort, but I knew my attempts would have been met with helpless looks and, "What?" so I didn't even try much.

The final straw came last night. My kids have taken to ignoring my instructions if they don't like what I'm asking them to do (usually reminding them of chores), so my solution has been raising my voice in an attempt to be heard. This has been coming across to my entire family as an angry, snappy tone. When I had two such encounters, back-to-back, within the space of a minute last night, I lost it. That's when I started sobbing and have yet to fully stop the tears.

On a related note, I don't think anyone (other than Kendra - we have yet to talk on the phone) comprehends how much of a sacrifice, how much I hate, HATE, to talk on the phone now! I don't hear well and I know I don't talk terribly clearly. Without lips to read or body language clues (on either side), it is a monumental effort, and so very exhausting. Conducting business by telephone is the worst! I always feel blessed when friends try to treat me normally and chat like old times, but I much prefer written communication now! The only exception is when my hubby calls - it feels so good just to be included in his days that I don't mind phone talking with him. Maybe because we used to share 5am phone chats for 20 minutes every morning from the hospital (when my hearing and speech were both much worse off) so we learned to understand each other over the phone as it was our only option at that time.

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Follow up post nearly 1 week later: Striving for Visibility

Thursday, October 25, 2012

One Year Stroke-a-versary

So, I have a few memories from this date, one year ago, but all from that morning, none from the rest of the day (or following week). I've asked a ton of questions and think others have relived the hours enough that I have a general sense of the unfolding of events on Oct. 25,2011 (and the days and weeks and months to follow), but this is primarily, or only, through others' recollections.

I really don't know what or how I'm supposed to feel about this day. According to most "experts" I have now achieved the majority of recovery I might ever know. I choose to believe the school of thought that recovery continues for a lifetime, but even if it isn't true, the other statistic is discouraging and sobering at a landmark like today. I almost broke down before Rick got out the door to work, but amazingly I kept it together with only a waver in my voice and quiver in my lip. (Rick is usually the only one I feel safe crying around. When I'm that close to a break down, I can hardly ever quell it, much less stop it from happening at all.) I did break down on the car ride to therapy this morning. I think that's only the second or third time my mom has seen me cry since the hospital. I thought I would be a total mess at therapy, but I never cried there.

I met my new physical therapist today. She worked me hard, and lots of new therapies. I told her I know I've pretty much maxed out my expected recovery, but I'm not ready to back down. Thankfully, she took on the challenge and took my goals seriously. My occupational therapist seems unsure what do do with me anymore, but she still always seems to come up with new ideas of how to challenge me too. I am blessed. On Tuesday I was able to move 51 wooden blocks from one box to another in one minute, with the right hand. With the left hand, I did 14. My grip strengeth in the left was up around 30 (from 16 and 19 a month or so ago).

My emotional counselor says I seem to exude peace and am filled with joy. I told her how bad off I had been just six months ago and she was astounded in the change in my attitudes. Talking it over, I think it would probably be fair to say that I am becoming more joyful now, even than I was before the strokes. I could not have comprehended that possibility even a few months ago! My counselor complimented me on my view-points and conclusions on several things, saying, "And you came to that mindset all on your own?" Well, no, not all on my own, but through the guidance of the Wonderful Counselor.

I know I still have much emotional healing to go, but itis good to look back and see how very far God has already brought me. When she hears about where I was, physically, at the start of all this, she just shakes her head and says that what I describe and who she sees sitting in her office now are so totally different, that she can't even reconcile the two. Again, testament to God's miraculous work. I should be dead, or vegetative in a nursing home.

There is much I still cannot do, may never be able to do (unless God intervenes otherwise), but as Joni Erickson Tada points out in her book, A Place of Healing, there is my to be "celebrated" (observe a day or event with ceremonies of respect, festivity, or rejoicing.). Today I'm choosing to mark this day as a day God choose to keep me on earth for His purposes. I'm still not to the point where I can thank God that I didn't die or find much on earth to truly celebrate, but I am seeking joy in Christ Himself and want to become exactly who He has in mind for me.

This morning I asked my mom to drive by the empty doctor's office where the ambulance came for me last year. I usually get teary and tense even driving near that location. Today I had to go into the parking lot, get out of the car, look in the windows, ask a ton of questions (where were the emergency vehicles parked? How were they positioned? Is that the little hallway where the EMTs had to come down?) and touch the window to look back in the building myself. Surprisingly, there were no tears, from me or my mom!

It seems there should be more to do to honor such a profoundly life-changing day. I told my husband, "We have survived a year!" He said, "We have survived a whole lot more than that." I said, "That wasn't survival." He reminded me that we have been through some pretty rough waters in the past and God has provided. Folks, I know I have voiced more than my fair share of doubts over this past year, but I think we are actually going to make it with our marriage still in tact. Thank you for the prayers, support, and thank you to my amazing husband who has his world turned on ear by a phone call one morning, a year ago today, and has fought so hard for me over these twelve months, even when I accused him of not caring. It's been very hard, but God still reigns!

I have STOOD for two showers in a row now. Washing my hair even (not trying to shave.) This was something I was never to be able to even try. I've done it with a strong grab bar because it is unsafe without, and the first time I only made it part way before I had to give up and sit for safety. My legs were shaking pretty badly by the end of the second shower, but this means I showered TOTALLY without human assistance, two times in a row. I cannot begin to describe how HUGE this accomplishment is to me. I was told six months ago that I needed to plan to sit for all showers for the rest of my life, that standing for a shower wasn't even a safe enough consideration to add it to my list of lifetime goals.

So I am legally a licensed driver again. No, I am not using that permission for a while yet, and even when I do, it will be under some strict, heavy restrictions. Still, it feels good that I have medical and state permission when I feel more ready to try! The DMV is over $100 richer through this process ($30-some to take my license away and issue an identification card instead, in January; Almost $80 to re-issue my license this week) so it still all seems like a rather stupid  (and expensive!) set of needless bureaucratic hoops to jump through, but regardless, they have been jumped and I'm legal to get behind the wheel when I feel more ready! They asked for a doctor to sign and fill out a form saying my eye sight is improved enough, but I have been given no other form of testing or instruction. I guess as long as the state made money, that's what is important to them?


There is still much more to share that I am not able to tell yet, but that's me in a nutshell. If you want more physical reports, check my post from last week. No, I still haven't started the drug study yet (long story) but maybe tomorrow or hopefully next week. The really exciting part about this drug is that rather than just helping my brain to re-wire around damaged areas and helping new parts of the brain learn old tasks, if it does as anticipated, the medication has a good likelihood of actually helping me to recover lost brain tissue. In essence, what has been dead with be resurrected and restored, at least in part. This is an entirely new possibility in stroke recovery. I am excited and hopeful to try!

Sing and make music in your heart to the Lord, always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.” Ephesians 5:20

P.S. If you want to see pictures from July, I finally think I figured out how to get some of my birthday pictures up.

Friday, October 19, 2012

Almost 12 Months

At this time last year we still didn't have a clue what was coming. I can't even wrap my mind around this reality.

I had another bad dream this morning. It was lots of ideas mixed up together. It was like just after my strokes, at rehab, only it wasn't the hospital, it was more like a compound where I was locked away. The therapist was mean, critical, pushy and like a drill Sargent. I was able to walk, unsteady, about like I do now (so not a true picture of my wheelchair days in the hospital!). There were 3 teenagers there teasing me. Oh and driving was a big push too. Very upsetting images and actually a relief, for the first time, to wake up to this reality. I am home, I am safe, Rick is at my side, I am with my kids, I don't usually have to deal with mean or un-understanding people (though I've encountered a few with rude comments or ugly looks now), therapy is hard but not done with cruel intentions.

I told my primary care doctor this week that I had gained nearly 50 pounds since the strokes. (Though I've lost about 15 pounds since my highest weight, about 8 since I officially started my diet about 7 weeks ago. I had gotten VERY skinny in the hospital). She actually said she was glad I had gained that weight, not lost it, so it could give me energy for recovery, not added weakness. She is working with me to help loose some now, but really said weight gain is to my advantage during recovery. It really encouraged me.
Well, it looks like I should be able to start research study drugs either this next Tuesday or the week after that (still contingent on lab work outcomes). After my therapy evaluation this morning, I am absolutely exhausted! On a scale of 0-2 for most things, I scored a few 2s and lots of 1s and 0s. My therapist said not to be discouraged with the low scores - at least we have something objective to work with in the next couple of moths. Presuming we get started on time (a bladder infection would set us back at least a month, for example), I should be finished with active participation in the study before Christmas. 
I confirmed with my mom and we both think I have seen more improvement in this second 6 months than I did during the first six. (Emotionally and spiritually, especially so.) That's counter to everything I've been told would happen, but it has been my experience.

This has been a horribly draining week. Two kids with the tummy flu, one on crutches for a sprained foot for most of a week (at least it wasn't broken this time!), me still dealing with nausea, dizziness and exhaustion (either from moving my head wrong in the bathtub at the beginning of the week, from trying to keep from coming down with the kids' flu, or both), and LOTS of doctor appointments. So far, only about 5 or 6 appointments scheduled for next week (plus therapy), so after an intense 3 weeks of appointments, it will be nice to slow down and come up for air again! I don't know how my parents manage to keep up with it all either!

I did see my therapist (emotional) finally this past week. Thank you for all the prayers. The appointment far exceeded my expectations and God provided on many levels, answering several specific prayer requests about the meeting. It's been such a long wait, but I think it ultimately will be helpful!
The wise counsel GOD gives when I’m awake is confirmed by my sleeping heart. Day and night I’ll stick with GOD; I’ve got a good thing going and I’m not letting go. -
Psalm 16:7-8 (The Message)

Monday, October 15, 2012

Bath Tub

I cleaned (surface, not a deep cleaning) my bath tub for the first time in a year, last night. Oh, the things I have always taken for grated that are such cause for celebration now!

It took about 15 minutes, my left leg was shaking terribly, and I though I would fall over the edge and land in the tub on my head. I tried to kneel instead, but that lasted maybe 10 seconds (if I'm generous with my timeline) and just hurt too much to tolerate, so it wasn't a viable option. I was huffing and puffing, only able to say one word between gasps, by the time I was done getting several months of dust rinsed down the drain, but I DID IT. So proud of myself. Such an exciting and huge accomplishment!

Because of my ear surgery, I have not been able take baths or get my ear wet for months. I have been SO looking forward to a bath without a gooey cotton ball plugging my ear. It has been something I have longed for and eager anticipated.

Unfortunately, the reality feel far short of imagined glory last night. I DID manage to get myself in and out of the tub without help (another first), but I think I got the water a bit too hot (blood flow issues). When I tried to tilt my head backwards to rinse my hair, this set my whole world to severely spinning again (it is good to have those occasional reminders of how things used to be every moment, and just how far I've come) and I immediately got so nauseous I thought I was coming down with my daughter's tummy flu.

I had to get out of the tub after only a 10-minute soak (yes,  it took longer to get the tub rinsed and ready than I got to spend in the water) and I'm still more off balance than my normal this morning, so I did a number on myself last night! I went to bed sick to my tummy and with my head absolutely pounding, but the pain is significantly down this morning.

I used to love pampering myself with long tub soaks, but I don;t think I';ll try another bath for a while now! At least I have permission to get my ear wet again. This will make showering and water therapy so much easier!

Rick took our daughter back to Urgent Care yesterday morning. She had hurt her foot on Wednesday and still couldn;t put weight on it by Saturday night. When she spent Saturday night and Sunday morning crying in pain (very unusual, she's a tough little girl!), even on tylenol, and throwing up for 3-5 minutes every 20 minutes or half hour, we were afraid  it was broken (she just got the other foot out of a cast a couple months ago)! We got x-rays and it is just a very bad sprain (no weight bearing, another check if she isn;t seeing improvement by Thursday), so she is back on crutches, but has no cast this time!

The throwing up wasn't just from pain, but also a nasty tummy bug. They put her on Zofran because she was getting so dehydrated and she made it through the night last night without throwing up. I am praying this doesn't sweep through the whole family! I so don't need to be throwing up like that again!

On to a new week packed with doctor appointments. Have I mentioned i'm getting tired of the battle yet?
Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God. - Ephesians 6:10-17

Saturday, October 13, 2012

Inward Renewal

If my tests all come back normal, I'm in the research study! I'll have 6 weeks of the drug, intermixed with a placebo. I won't have any idea what I'm taking when. One doctor has access to unblind the study results in an emergency. Otherwise, no one knows when I'm off or on the drug until well after the study ends. I should start in a week or two.

The funniest part about my intake evaluation was when a nurse was drawing blood from my right arm and the doctor was simultaneously conducting a neurological exam of my left side. I was hearing, "Raise your left knee and try not to let me push it down," while at the same time trying to keep my other arm still around the needle. The bruise is surpringly small, considering the circumstances!

The nurse said I was a hero to everyone in the room (all 6 of us crowed into a 5x7 foot exam room). That was encouraging to hear. :)

A nurse measured my oxygen saturation level on Thursday. It was 96 (%?) on my left hand. Just for kicks, I had her also measure on my right, where it was 100. She was amazed at the difference, but I was not at all surprised in the difference between effected blood flow on that left side and my normal levels on the right.

It seems there was one other significant thing about the study or my intake interview that I wanted to share with you, but I can't remember now. If I think of it, I'll try to post.

I go back to my neurologist in 3 months.  It was 4 months after our first meeting, shortly after the hospital and 6 month between appointments this time. I am discouraged to be going backward now.

Most of you have heard of my friend, Kendra, who had a couple of serious brain-stem stokes in April. We have such similar questions and issues, that while I hate she is living through this, it is a blessing to be able to share experiences! She told me recently that she doesn't think doctors even really know what to do with us because we are probably the only ones of us our caregivers will each ever see in a lifetime. We "should" be dead, after all. What do you do with a dead person who hasn't actually died?

I am still dealing with significant TMJ jaw pain, though this has recently been liked (by my neurologist) as also having atypical trigeminal nerve involvement/pain. My ear surgeon says this makes so much sense, meaning I may have some hearing loss, and definitely ear pain, from my TN rather than just my hearing nerve, as first though.

Speaking of my ear surgeon, I was released from his care yesterday. The scar tissue was successfully, surgically removed thus mechanical hearing ability (from the paralyzed eustation tube, creating so much internal pressure on the middle  ear and causing extensive scar tissue to bind the bones of the middle ear) has been restore. My hearing is, indeed, better than it has been since the strokes, but still far from ideal. The other day our daughter asked me if she could have some "hand sanitizer," and I questioned why she wanted "pants and a tiger"?

I have been referred back to my audiologist (this is the first time when I've been released from any super specialist and downgraded to the care of just a regular specialist, so it's quite the celebration!) to consider hearing aids again. Nerve issues cannot be addressed or corrected with hearing aids, so more extensive testing would need to be done to find out exactly what is going on or if I'm even a candidate for hearing aids now that we have done what we can through surgery.

Since insurance doesn't seem willing to help even if hearing aids could help, and we don't have an extra $7,000 laying around, we will just wait and see how I do for now. We already know hearing aids are our next step (if they might even help) if we go back to the audiologist, so it doesn't seem prudent even trying to go back to her right now. In the hospital I said I wanted my eyes and feet back. Since I have some use of each of those, I'm prone to try to prioritize the reality that this is not my eternal home and thus downplay some of these other issues.

I cut my finger this morning. It's not a bad cut, only about an inch long. No stitches needed. Since I'm on blood thinners, I tend to bleed a lot, even with a small injury. I just bled through the first band-aide and that took nearly two hours. I've only used sharp knives a few times over the last couple of months and managed not to cut myself at all until today. First time in nearly a year of unpredictable muscle movement - not bad.

I am in one of the last legs pushing to finish my current book that I hope to submit to a publisher for consideration by the end of the year. Please pray for wisdom, clarity, God's timing, direction to the perfect publisher for this project, and protection of my family. Thanks! Writing without my full, previous cognitive function or sharp memory is an interesting experience!

I'm down a total of about 13/14 pounds since my highest weight, about 8 since I officially started the diet. I still have a long way to go, but I miss dairy terribly (I'm a big cheese eater and enjoy yougurt, sour cream and creamed cheese too), so I am going to talk with my general doctor about diet options on Tuesday.

It is very weird to feel. Because I have been doing so much therapy, my right leg is getting very solid, firm and strong. The left leg is squishy.  Such a strange difference!

Next week there is at least one (sometimes two) appointments nearly every day. I HATED that the kids were gone those first eight months, but in reality I wouldn't have seen them much anyway. I was going to 1-3 appointments every day. Now I usually only have 1-3 appointments per week, though this October is pretty crazy, with the culmination of many 1-month, 3-month and 6-month and weekly appointments all converging this month. I'm so thankful for all the driving and childcare my parents offer! I'm keeping them both especially busy this month!

By the way, is anyone available to come watch my kids (or maybe at least have the 6-year-old dropped off at your house this coming Thursday afternoon, as the older two could stay home alone, if needed). I would need to leave about 3:20/3:30 and probably be home between 5:30 and 6. I have a ride, but not child care, for the counseling appointment I've been waiting for 5 months to go to. Please call me, message me on Facebook (best choice), or email me if you are local and can help out that day. Thanks!
It is written: “I believed; therefore I have spoken.” With that same spirit of faith we also believe and therefore speak, because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you in his presence. All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. - 2 Corinthians 4:13-18

Wednesday, October 10, 2012

Early Neurology Appointment

My regular Neurology appointment was moved up from next week to today, due to a scheduling need on their end. We talked about several issues and I go back in three months, but he would prescribe another couple medications for me over the phone if I need them and it is sooner than my next appointment (that is much-coveted and impossible to get in earlier).

We found out this weekend that my immediate short term memory is still pretty much fried. I tried to play a few card games and have no ability to even remember the most recent card played, much less any card from a few plays ago.

I still haven't heard anything about qualifying, or not, for the research study, so I will go to my next appointment is still set for tomorrow and I am still to come, as of today. I should know within a week or two of that if we will be moving forward or not.

I should find out more about my ear this Friday.

After months and months (5? closer to 6?) of waiting, my insurance has FINALLY approved me to see my counselor next week. I think she would have been of more help when I was trying to process the more immediate shock of this journey, but I pray she is helpful in learning to live with the continual crisis of this too.

Life keeps marching forward. I'm still waiting for some normality to formulate out of my schedule and life in general.


I was thinking this week that I am so thankful for both sets of our parents, Rick, and our friends, especially Kathy. Without them, we would not have survived this past year. Our life has changed dramatically, but so have theirs, especially my mom, who are here almost every day, drives me to countless appointments, folds my laundry, and helps me keep moving the kids forward in school.
Listen to advice and accept instruction, and in the end you will be wise. Many are the plans in a man’s heart, but it is the LORD’s purpose that prevails. Proverbs 19:20-21

Friday, October 5, 2012

Appointment Updates

Our oldest has been down in bed, sick, since Monday night. Today is an intensive school day to get back on track.

I survived my transportation interview. In fact I was a little too optimistic in my application, over-estimating my own capabilities. The therapist said, based on my in-person interview, she wanted to recommend me for long-term ACCESS approval, but based on my answers for potential abilities on the written application, she was referring me over to training for the regular public bus system. In a few weeks, I should have a six-month approval for ACCESS and will get a call to set up my bus training. If the normal bus is more than I can handle, I am to call back and come in for another interview. Either way, I am to come back for another evaluation in 6 months, as she wants me to maintain at least limited qualification for their program, so I have that as a back up for harder seasons, even if I generally end up able to ride the city bus. So at least two more transportation interviews in the next six months, but at least I have shown myself that it's survivable now.

I may also be getting my driver's license in the mail soon. My neurologist and neuro-ophthalmologist have both given approval.  Practically speaking, this doesn't mean much in lifestyle change for me other than just self-limiting, rather than having the government dictate my ability based an faulty medical information. (The one seizure or "pseudo-seizue" I had at the onset of the first two strokes was a direct result as the brain bleed and not a recurrent issue, though the government doesn't differentiate driving ability based on cause of seizure. My neurologist was sadly surprised that I had ever officially lost my license at all. You don't typically loose your license with a stroke, even though the capabilities may not be there.)

Based on our own decisions, I will not be driving with any passengers for the foreseeable future and several other careful limitations for a long time to come. Cognitively, I feel mostly ready to drive again, it's just the physical lack and response that scares me. To a certain extent there's the whole "getting back on the horse" mindset that needs to be overcome, so from that standpoint the sooner I start trying again the better. Then there's the whole reality of new limitations thing to balance too. As far as how getting my license back may impact my daily life, for all practical purposes, I still will not be driving, I just won't have the government telling me I can't anymore.  This, to me, is a huge moral victory! ;) Because I'm still not ready/able to drive, this makes the ACCESS approval that much more treasured.

I had my first interview for the research program yesterday. They are checking on a couple issues to see if I fit within the program qualifications, since it is unclear in some areas, such as the single seizure question. If I am cleared to join, I have my official screening (blood draw, physical exam, walking evaluation, etc.) in a week and then plan to start with a placebo or the actual medication in one or two weeks after that (after all test results are back). Oh, my physical therapist that I just lost at rehab (because of his promotion) is the lead evaluation local therapist for this study (God-incidence as he had nothing to do with trying to recruit me), so if I qualify, I get to work with him in study evaluations again!

A student that had once followed me in the rehab hospital (I don't even remember her, but my memories from the entire first months are sketchy) said she recognized my voice over the phone and remembered me. She confirmed this when we met again in person, yesterday, saying she was amazed to see me walking with a cane since I couldn't even manage a walker when she last say me.  The lady in charge of the local program said I must have made quite an impression on her if she remembered me all these months after meeting me once. She told the head lady that she hoped they could work with me because I was "so sweet." It's encouraging to hear that Christ's Light kept shining when I was SO broken and had nothing of my own to offer! God is good.

The end of next week I have my next appointment with my ear doctor. Hopefully he will clear me from surgery recovery and I can start getting my ear wet again. I am so tired of cotton balls in petroleum jelly, stuffed in my ear for each shower, any time I get in the pool, or any other time there is potential of the ear getting wet - ewwww! I am sure I am hearing better than before surgery, as I am hearing some tones I couldn't pick up at all before, but in general conversation, I still miss a lot.

The weather finally feels fall-ish here today. I love it! Hard to believe that at this time last year, I was still so clueless of all that was to come!

Tuesday, October 2, 2012

Eyes and Hair

My eye appointment yesterday was only 2 1/2 hours long. :) My double vision has improved from a measurement of 30 in February, to 3 (June?) to 1 this week. I still see doubled when looking up, down or to the sides, but directly to the front, I see singly unless I'm tired or stressed and my eyes get less synced. My vision is now 20/20 in each eye (Wow, better than before the strokes!), though practically speaking, I can read the bottom row of letters with the right and only the middle row with the left, so there is mild usability difference between the eyes, with the right being noticeably stronger.

Dilation is still not resolved in my left eye from yesterday's drops, so I may have to call and ask about that later today or tomorrow morning, if it remains an issue. I think I will cancel my regular ophthalmologist appointment for later this month, since the results at the neuro-ophthalmologist were so encouraging! My doctor was looking over the changes in my records yesterday and shook his head saying, "Wow!" There is no medical explanation for such dramatic improvements. Only God!

This morning I woke up from dreaming that I had long hair and two working hands again. I was playing with my hair and braiding it. I woke up to this reality and sobbed. I told Rick, "It was such a normal, simple thing, but it's not." It's representative of the accumulation of so many daily little losses. Sometimes I really hate the changes now. :(

Soon the tears weren't just about hair, the were about parenthood (because I miss braiding my daughter's hair) and my husband and daughter were both trying to sooth my pain. My daughter worked with me and between our three working hands, we managed a braid together, though she had to take it out because it hung in face. Still, it was healing, along with their hugs and humor and words of loving assurance.

Today I have my transportation interview. I'm sick to my tummy just thinking about it.I'm never on my own, away from home. This is scary! Again, not a big deal on its own, but in context of all the rest, including some issues I have yet to share here, it seems overwhelming today.

I don't know why, but my left foot is really purple again today, more so than any time in recent months. I thought circulation issues were resolving, but I guess not.

Our oldest is sick and my youngest was really disobedient yesterday. I'm  praying we have a better day today. I feel really anxious and don't like the feeling of being out of control, at all. I'm thankful that God is still in control, even when my illusion of control is so shattered.

Thank you to my wonderful hubby for taking his whole evening to get our internet working again last night. <3

God seems to be working some healing in our relationship and my heart attitudes toward or marriage. Praise the Lord!
When anxiety was great within me, your consolation brought joy to my soul. - Psalm 94:19

Snapshot of a Week

Written Thursday, updated Sunday morning:
The fact that you are reading this means I have internet access again. It went down Thursday night and I have felt so cut off from the world! Pathetic that so much of my life is lived online. The good thing to come from this forced fast has been that I have gotten a lot of writing done as a result. I had been thinking I might start query publisher for my next book, early next year. I am now thinking there is a glimmer of possibility that I could start submitting a finished manuscript before the year is over now!



Kendra and I have talked about how my are both less filtered and much more compulsive now, especially when it comes to shopping. (Don't let me loose with a computer mouse, keyboard, and your credit card!) I like her take on the subject - more decisive now. That sounds better. Odd little tid-bit about rationality changes brought about by strokes.



I got a call from a nurse. She was trying to recruit me for a drug study on strokes. (Of course, being decisive, I agreed to the screening.) It is already an FDA approved drug, just currently labeled to treat something else. We are one of the final legs of the study to get it approved specifically for stroke. Anyway, one of the qualifications is that your strokes had to be recent, but at least six months ago or more. She commented that your stroke had to be at lease six months ago because, without this medication, they do not really expect to see much improvement after six months. I know this not to be true, because I started walking again (with a cane) well after the six month mark, but it was still discouraging to hear that significant improvements aren't expected in me, any longer. I felt like crying again.



I also found out, last week, at that my PT (who is wonderful) just was promoted to a different facility. It is great for him, but so sad for me that he won't be overseeing my therapy any more. One more loss to grieve...



The exciting news is the new lady who will be taking over my physical therapy training is an old room-mate and best friend of my sister-in-law's little sister (if I understand correctly). My brother-in-law and his wife (or the sister) don't even live in the same area or state as we do. The therapist just recognized my last name, because it is so unusual, and asked if I knew or happened to be related to a guy who turns out to be my husband's brother! Small world!!!



It was also neat when I did stair climbing today and my PT exclaimed, "Holy Cow!" because he was pleased with my progress in a month's time.



In OT, on Thursday, we measured hand strength again. For a woman my age I should have a grasp of about 58 (pounds?) in my dominant hand (right) and 52 or 53 in my non-dominat (left) hand. At today's tests I was at 60 and 62 grasp strength with my right hand (still, above "normal" but down from 65 in July and 70 earlier in the Spring) and only 19 and 16 in the left (down from low 20s in July, but up from 15 this past Spring and 5, 6, or 11(?) in the rehab hospital). This was discouraging (and frankly, quite confusing) on both counts, because I have been so faithful in doing strengthen exercise. This far out from my strokes, I hoped to have regained more use of my hands by now!



I signed a copy of Hannah's Hope yesterday, and other than originally dating it "2011" and mis-correcting it (when my mom pointed out the mistake) to "2021," my actual signature looked closer to my old signature than any I have written so far. I still have a very hard time writing a "3" and to a lesser extent, “8” (OK, any letter or number, but those are my most troublesome) and I am still far from where I used to be, but after just seeing something I tried to write around 5 1/2 months, I've come a long way!



Kendra and I have decided that we are both making it our goal that some day we will plan to get together in person. I have no idea how or when, but we so want to make this happen! It would be nice if it could be sooner, rather than later, but at least for now it is a goal for someday in the future. :)

It's a long week ahead. On Monday I see the neuro-othomologist again (2-5 hours). On TuesdayI am to take a test ride on the county's special needs transit system and go down to a screening facility to an hour-long evaluation interview, before riding the bus back home. (The bus is scheduled for nearly an hour an a half before I need to be there, and leaving for home, nearly an hour after my appointment, so it will take most of the mid-section of our day.) If you hear me reference this program in the future, it is called ACCESS. If I let myself think on this one very long, I get totally nervous and freaked out! On Wednesday or Thursday, I guess it is back to the gym to catch up on therapy. My mom also has to take my dad to the regular ophthalmologist on Wednesday, to talk about his upcoming surgery. On Thursday afternoon, there is homeschool co-op, then that medical study screening down town. I don't think we have anything scheduled for Friday, yet, so probably the gym again. Sometime in all this, we have a school week to accomplish.

Oh, and I need to make a couple of business phone calls this week too. Have I mentioned how much I HATE talking on the phone with both speech and hearing impairments? That's almost the worst anticipated part of the whole week, though it will really take the least time, once I convince myself to get it done. I also have to find a very quiet 15 minutes, twice per day, to work on my speech therapy listening program. And there are all my daily therapies to do (about an hour per day). Whew!

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. - Matthew 6:34