Update: Stroke of Grace has become In Darkness Sing and has moved to JenniferSaake.com.

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. 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.

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.

Wednesday, November 27, 2013

Doctor Won't Tell You

I've tried to come up with ways to word this delicately, but potty talk is simply not a delicate topic and I've now talked, one on one, with way too many people (just in the past week!) to think it is a random or isolated issue among stroke survivors. So here, in tell-it-all style, I need to blab out what your doctor may never tell you (may not really even know) about stroke recovery, directly from the personal experiences of stroke survivors. Take it for what you pay for it. ;)

OK, so here's my experience and theory resulting from both personal observation and multiple discussions with other individuals. Post-stroke weight gain seems to be a nearly universal struggle amongst survivors with much ongoing physical deficits (after an initial period of loss when the body is burning massive amounts of calories just to sustain basic life functions). I gained around 50 pounds in the months following the hospital. I needed to gain some of that since I had lost somewhere between 10-20 pounds in the hospital (again, need to obtain records to exactly know how much) from my ideal weight (that I had just battled down to and bought a new jacket in celebration, the week before the first strokes), and have managed to drop about 6 more pounds through a year and a half of dedicated diet and exercise. But I regain quite easily now and just BATTLE to ever see the scales move downward.

Because of my kidney stones, a recent abdominal x-ray revealed significant, chronic constipation and at least half of my colon filled with compacted fecal matter. Strangely, I have a daily bowl movement and rarely have any symptoms of a sluggish digestive system now, have even gradually dropped the strong stool softeners I've taken since the hospital, because thing were SO MUCH better than they used to be that I truly didn't even think I needed them any more.  Or as one of the first friends who shared her experiences with me was told in therapy, she was FOS (full of... draw your own conclusions from the abbreviation) as we both had significant issue with intestinal paralysis and trouble (often days and days between) producing any bowl movements in the hospital.

I've talked to several other friends who confirm internal paralysis. I think when we think of stroke, even survivors, we go to the obvious, like drooped face, clenched hand, dragged foot, and easily ignore (even doctors tend to, in my experience) that the whole body is likely impacted, both externally and internally! Ever wonder why speech is so impacted for some? For many there are brain issues and language processing problems, but in some of us, these issues are either paired with and complicated by, or simply attributed entirely to, internal paralysis of the throat and/or voice box! So it really shouldn't come as much of a surprise that other internal systems can struggle. One friend (about a 12-year survivor) even shared that when her colon was compromised she was "toxic" and fought chronic hives, but once she eventually got her digestive system to clear, she stopped having hives and lost 40 pounds! In light of all this, my theory is that stroke often causes chronic constipation and as the colon builds up, weight also climbs and can't be easily just dieted or exercised away.

It would seem that the simple solution would be frequent colon cleanses then? My word of caution here, only drawing on my own experience and one friend's (since these really aren't conversations I strive to routinely bring up ;) ) is that when you mess with a paralyzed colon, there is little in-between constipation and violent diarrhea. :( This word of experience-gleaned caution is offered even without prescription intervention, but only natural softeners like prunes. Sorry for grossing out most of my readership, but if someone had explained all this to me, I would have really appreciated it, so I'm hoping to help out at least one person here.

And to answer one frequent question, yes I take good probiotics and have done so for years, even before the strokes, but made extra sure I am on really good, high quality, high strength, live ones now, as this is also critical for brain health in injury recovery!

While we are talking "tell-all," please humor me in speaking about sex for a moment. I would love personal feedback as research for my book. Please feel free to use my email address posted in the right sidebar if you don't want to reply publically. Basically I had read, repeatedly, that stroke either pretty much kills desire (like NO desire/excitement ever, or just a few times per year) OR really heightens it (like would prefer an average of 3-4 times per day). No one offered an explanation or prediction other than to say it had to do with the particular areas of brain damage experienced by an individual. (Duh!) There is also the physical aspect or simple post-stroke ability to consider here, which may or may not always align with the "98% of sexual experience organ" between the ears. I'm not even talking physical here, just mental/emotional/pure chemical desire.

So out of an informal, non-scientific, peer survey of actual stroke survivors (about 500 Facebook users in my stroke group questioned, maybe 30 publically replied to the thread to share experiences (and share they did, sometimes rather more information than non-strokies would want to know!), and no, for once, this topic was not launched by me, but I sure learned a lot through the replies!), it would seem that there is a fairly pronounced general pattern within respondents that left-side brain damage typically caused loss of drive, whereas right brain injury seemed to generally significantly raised both desire and frequency. I would be remiss in stating this as a hard and fast rule, just a rather consistent observation reported within this small sample group who were willing to speak of their experiences. Even then there were exception on both sides of the fence, just a general trend that was quite noticeable. This also doesn't account for the emotions and experiences of a spouse who may have their own significant drive changes to cope with as they witness physical and emotional changes within their partners. Still, I found this information rather insightful and wonder at the validity in the wider strokie population and, if it generally holds true, why no one else has seems to have ever documented the specifics before???

Thanksgiving week, last November, I posted about how I was jumping for joy, how I had actually managed to get both feet off the ground in a jump while holding on to a stability bar at therapy. I've been able to typically manage jumping for a full year now, but holding on to something with both hands. During this 100 Days experiment, I've gotten brave and even managed a few one-handed jumps.
Yesterday, I caught my very first no-handed jump on video, that I managed to replicate about 20 times, off camera, throughout the evening last night! I often still leave my left foot behind, either all together still on the ground or simply not as high off the ground as the right, but I just didn't even have the balance to accomplish this at all, when I woke up yesterday morning!
I did get both feet off the ground when I'm not tired out, a fair percentage of the time, by the end of last night. I tried multiple times for my family last night. My record was three times in a row, though if I didn't take several minutes rest breaks after attempts, I could not do it again even once. My left leg shook like crazy by the second, and especially third jump attempts, but I did it! I still have several moments of hesitation between the time my body sends the message to jump and my body follows through with the action, but I have hope that this will refine and smooth out with time. Last night, for the first time, my seven-year-old and I even dared chat about our dreams of jump-roping together some day! :)
I just saw my urologist. He says my x-rays seemed to have shown some movement in my stone, likely why I bled so much last week, and he's giving me until December 10th to pass the stone on my own before he wants to talk surgery. When we talked about the dark red / black urine last week, he said it would be rare to bleed so much as to need a transfusion or anything and that he has never seen that in his entire career. I told him that given my history, if he is looking to see something unique like that, I'm pretty likely to be his exception to the rule. His instruction is that I am "not to go big" with this medical adventure. ;) I asked him if the amount of bleeding I was seeing was common and he was quick to admit that this much blood is far from common, but still not to a point that terribly concern him yet.
I just received the un-blinded results of the drug study I participated in late in 2012. The weeks I had (as had my doctors and medical team) been sure I had been on the actual drug, and the weeks I had been positive I had been on placebo, were, according to the records, exactly opposite of what we were convinced. What's a little encouraging is my worse, pretty scary, reactions were actually during the placebo weeks, so if I get accepted into the next phase of the study (where there shouldn't even be a placebo component, just a long-term drug usage study), the scariest risks shouldn't even be a problem! Talk about having the rug pulled out from under you with the reality though!
Day 11 of 100
If I'm seeing these results in just 11 days of consistent effort to reach my goal, I'm excited to see day 100!
Lamentations 3:21-23 “But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. The Lord is my portion, says my soul, therefore I will hope in him.” 

1 comment:

  1. I have a theory that if you cut me in half (or rather draw a line down the middle of me!) you would find the whole of my right side, inside and out, affected in some way, however small, by the stroke.