Update: The In Darkness Sing blog at JenniferSaake is experiencing prolonged technical issues, so I'm temporarily posting back here on my old Stroke of Grace blog.

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

Jennifer is currently writing more books and stays active on both Facebook and Pinterest. Stroke of Grace became In Darkness Sing in early 2018 and has moved, along with all five of Jennifer's active blogs, to one location at JenniferSaake.com. (Please see above temporary update note above!)

Thursday, April 30, 2015

Three Steps

Another month gone by. 1/3 of the way through the year.

This past month marked Kendra's 3 year stroke-a-versary (on tax day!), followed 10 days later (last Saturday - yes I was very aware of the significance of that date, no I did not choose to post at the time) by my 3 1/2 year mark. When we were counting stroke recovery in days, weeks and even months, that 5 1/2ish month span in our recoveries seemed so significant. Now that we are both marking off YEARS, I just keep it simple and say we stroked about 6 months apart!

After over a month of TRYING so very hard to adjust and make them work, including an extra adjustment and training session by the ophthalmology office a couple weeks back, I am throwing in the towel and deciding I no longer want to keep fighting to strive to make my stroke brain accept bifocals that just make me feel horrid! Today I took them back, activated my warranty, and asked for a new pair in my single vision (distance) prescription. While I was at it I picked new frames as this whole bifocals experience has been unhappy and I wanted a fresh start in every way! My new eyes should be here in a week. OTC readers work for my up close needs so now I just have to carry a pair in my purse and have readers stationed by my chair, headboard, cookbooks, etc. Rick bought me an ADORABLE 4-pack this past weekend.  I'm excited and so very, very relieved!

Jesus in me!
Within the past few days I've had several opportunities to talk with folks about my remaining stroke deficits. To list them all out, there really are still many! But compared to where I started, even where I still was a year or two back, just wow! When I talk about hearing loss, or weight gain, or balance and dizziness that make thing like adjusting to new glasses particularly challenging, or nerve pain conditions, or when I can't pick up something I try to grasp (or let go of!) with my left hand, or face the ongoing cognitive stuff like inability to process thought quickly enough to safely drive, or pick up my cane to step out of the house, or slip my medic alert necklace on each morning, or any other inconvenience like that, it is so helpful to remember all I CAN do now. I've been surprise to hear (and realize that's really how I feel) words coming out of my mouth about how I should be dead, or in a nursing home, or at least never walking, and how my eye was crossed and paralyzed next to my nose for months causing severe double vision, and how these issues now are just mild irritations compared to my prognosis! "It is what it is." or "I think I'm doing pretty good!" are words I've found myself saying to stunned friends a lot recently.

The smallest things can make my remember, flash back, but usually now not in a negative way, but with awe, amazement, thanksgiving for all I can do now. Picking up a full gallon of milk still reminds me of when even my "good" right hand didn't have enough strength to do that at all. Kendra, today, I sort of managed to get my hair up in a Lilla Rose bun successfully, all by myself! It last all of 5 minutes (fell down just as I was taking pictures to show you!), so obviously not a great job, but I did it! (Just mastered a high pony tail for the first time last week!) For all of those month when simple brushing brought pain tears to my eyes because my head was so sensitive and I could not get my arms high enough to work with hair on top of my own head, these are victories, ongoing gains that make me thankful! I have yet acquire the stamina to vacuum my entire house in one day, but getting through an entire room, staying balanced enough to push that machine back and forth across the carpet in a room, still makes me feel accomplish and rather awe struck that I have regained such capacity.

The single trigger for the most common flood of memories comes when I stand in my own kitchen. "Simple" acts like reaching down into a lower cabinet to retrieve a pot (I had neither the strength, balance, nor flexibility for a year or more), taking the three steps needed to cross over to my sink (this wasn't possible at all for so long, then it was a season of holding onto the counter with both hands and flinging myself across that gap, praying I could get a steady hold on the kitchen island before my legs buckled), turning on the water (sometimes I even manage this with my left, more profoundly stroke-damaged hand now!), turning around (a huge challenge!), carrying a full pot of water back across those three steps (with both hands, I can lift it, hold it, and typically even move it without spilling much - when I started relearning this task, half of the contents of the pot would be sloshed out on the floor by step 2), turning on the stove (fire was a big no-no in the beginning!), and boil a pot of water! I need to call someone else to carry it back to the sink once it has reached boiling temperature, but how amazing to get this far! If you had told me way back that I would someday stand there in retaliative confidence and steadiness, I would have thought you were crazy! And to be able to do the rest too? Words are inadequate to describe the change!

In Acts 9 there is the story of Tabitha/Dorcas. She was an early believer in Jesus, know for her goodness toward others (remind me of my dear Kathy who still comes to help me so often!), but became ill and died. Jesus, through the Apostle Peter, ordered her back to life. Personally, I wish I could read more about the whole experience and aftermath from Dorcas' perspective, but God's perspective reads that she still had more to do for Him. In dying and coming back to life, part of that mission was to bring many to Himself, through her story. That is my prayer for my strokes, that Jesus be glorified and folk seek personal relationship with Him because of all he has done through me!

On top of the stroke stuff, I seem to have picked up at least two different nasty and heavy-duty viruses this spring, triggering the reactivation of ME/CFS (previously known as Chronic Fatigue Immune Deficiency Syndrome), that I battled for over 20 years but has been in remission since before my strokes. I haven't said anything here yet because I hoped this relapse would be short-lived and not worth mention. Plus, putting it is writing "makes it real" and I can no longer pretend it is not real. It has gone on long enough, I have enough medical confirmation and symptoms, that it looks like we are in for another battle. I have been on anti-viral medications for a few weeks now (out of an anticipated 6 month course of treatment) and, other than needing mega amounts of sleep, think the medicine may actually be helping a bit already!

- I just lost 3 additional paragraphs I had written and my computer didn't save here. Typically, I would rather write than sleep and often give up sleep to finish a writing project. Today my body DEMANDED a two-hour nap rather than trying to recompose what I lost. I'm sad, but simply don't have the mental clarity to get those thought put together again. :( -

I was in and out of the local emergency room for tummy pain (that may or may not be related to these viruses), my appendix, the ovarian cysts they found on my stroked side that could have been referring pain to my "good" side, some combination of any/all of the above, or something else not yet discovered,  (no one is totally sure), twice within 3 1/2 weeks, but am on day 5 of a realitiely pain-free or at least low-tummy-pain streak. Still don't know the reasons, but today I am pleased with the outcome right now! My next regular doctor's appointment is scheduled for about the 3rd week of may, so that if it is a recurrent feminine issue, we hope to catch it cyclically. Because of the internal stroke paralysis, I do not seem capable of properly transmitting pain signals, so I am leaving my doctors with quite the guessing game right now!


Monday, April 20, 2015

Heaven Thoughts and Another Surgery Looming?

Sorry I've not been around. Non-stroke health issues... Now I'm on new medication for my symptoms, sleeping a LOT as a result, and for 3 weeks now my appendix can't decide if it wants to get angry enough to come out or if it will settle down and be good. 

My mom played games like this with her appendix for 9 months before it got inflamed enough to show on tests. I have two different friends who did this for 2 years each. My prayer is, if my appendix is going to actually need to come out in the long run, not to spend more weeks or months with off-and-on vomiting and abdominal pain, but get it good and inflamed so they will take it out sooner than later! Of course I'm good with it totally quieting down nicely, right away, too!

Because I've been so sore, often iffy on heading to the ER or not, and nauseated, we haven't been making it to the gym for water therapy very consistently. With regular colds and such, then all of this hitting, my mom and I had basically a month where we did not go at all. I lost significant function of my left arm during this time (the mobility is technically still there, but the pain when I raise my arm above my head is greatly increased). 

I had been less steady in balance and core strength and my clothes were also fitting tighter, so I was sure I had gained weight over that missed month of gym time. When I got on the scale and was actually DOWN a pound, I chalked the loss up to all my vomiting. Then after a week back at the gym (where I could only achieve about 3/4 of what I could do the month before), my clothes were fitting more comfortably again but I had GAINED back that pound! Guessing it was lost muscle mass from missing that month.

We didn't make it to the gym again this morning as I threw up overnight and have been in pretty high pain for 2 days in a row now. One of my biggest nightmares at the moment is throwing up IN the pool, as I have so little warning nor control of this bodily function since the strokes. Not only nastily disgusting for myself and all other participants of the class, a horrid inconvenience and added expense for the gym management, this would just be beyond mortifying to me personally. If I didn't get banned from the pool, I doubt I could ever show my face there again anyway! So when my tummy is this iffy, I simply cannot go!

I still am not too steady on my feet. I almost took bad falls at church twice yesterday and even when I didn't feel like I would fall, my hubby asked what was wrong because I was holding his arm like a vice grip. I don't know if this is still payment for lost therapy days (probably), a reaction to abdominal pain, or some combination of the two. I dread thinking about what recovery will take if I am down in a hospital bed for a few days in the near future. Yes, I have had several surgeries since stroke (7 I think, but would have to go look that up to be sure) but some of those I was still in the hospital or a wheel chair. I think all but one (maybe that kidney stone one too?) still in formal therapy to aid in the recovery process, and none entered into when I already feel so weakened and run down ahead of time.

On the glasses front, I had a wonderful lady help me re-adjust them and really take her time to do some training with me a help me address some of my issues. I am much happier with them than I was, but still not adjusting to the bifocal thing well. I am thinking of simply ordering my perscription in distance glasses (either just sunglasses, or even regular clear glass with photo-chromatic tint) and just carry readers in my purse for up close. My eyes keep hitting that blurry line between the two lenses and it causes vertigo and stroke symptoms to kick into high gear. Just not a workable situation, so typically I end up not wearing them when I should, squinting and getting head aches. I found some adorable butterfly frames I'm hoping to order after my next book royalties come next quarter. I started out thinking this would be an inexpensive option, but by the time they custom fit them to my face (my face is too small for their standard) and I do the sun tint option and all, Ill be up to about $70 or so anyway. So much for the "$10 glasses" solution I started out thinking I could do! But these butterflies are cute!

Here's the mock up of about what they should pretty much look like on me:

I've been thinking lately of my Heaven experience. I find this memory often makes me so very sad, wistful, longing, aching, grieving for what I cannot have. Last week, God used a familiar passage in Romans 8 to confirm to me that I am right where He wants me right now (neither death NOR LIFE separates us from God). 

Even so, yesterday in church they were singing hymns about the glory of Heaven and I was so overcome with memories that I wanted to SOB (but cannot cry thanks to broken emotions) and simply could not open my mouth to sing. I asked God why such a beautiful, powerful, majestic experience would leave me so hurting, in such anguish, and He told me two things. First of all, the human brain is not wired, prepared to process such immensity. It isn't a matter of "stroke brain" that makes this beyond my grasp, but No mind has conceived of the wonderful thinks He has in store for me. This is beyond my capability to fathom, to process, and that is OK. It is how He designed me. When I get there, I will be capable, but as long as He has me here, that's not something I need to wrestle with grasping.

Secondly, God challenged me, that when my memories do wander there, rather than focusing on myself, what I want, what I am missing out on,what I am lacking here on earth, I should instead be focusing tangibly, fully on Him. When I feel overwhelmed and awed, it is the Lord who is the inspiration behind my wonder, the Person, rather than the place. My Divine Lord, Deity rather than the destination I'm trying to recreate in my mind's eye. I can't not reflect and remember, nor do I wish too. I think speculation is a healthy part of what God does intend for me to process. Learning to transition my thoughts from where to Who will be a process. But simply at that realization yesterday, I could tell the sorrow was lifting, being replaced in my heart with His glory and grace.

It is not like there are an abundance of people who can talk me through this process. Many who claim near death experiences, while perhaps quite viable experiences in their realities, without getting to personally know them deeply, I would be unsure of their spiritual grounding to help me without leading me astray. The greatest theologians in history, without personally experiencing this path, might not merit my respect on the topic of living here after glimpsing There. I think often of people like Jarius' daughter or Lazarus or other Christ brought back to life and wish we knew more about their lives in the aftermath. Thankfully, though no human counselor seems capable of touching these thoughts, I am clinging to the Wonderful Counselor to walk me each step of the way. I falter and stumble, more often with my heart than even my body, but He continues to gently lead.