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.

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.

1 comment:

  1. I like your positive attitude. I bet it is your brain finding new pathways.