Category: Grace

Bald Blind BEAUTIFUL

Yesterday, our daughter posted a selfie on instagram. In her own words, her hair “was falling out in handfulls, and I told myself I wasn’t going to loose my hair to sickness or medications, and if I was going to be bald it would be because I was confident enough to not feel like I need my hair to protect me or make me beautiful and to be able to shave it off myself, so that’s exactly what I did”.

In synopsis, since September 8, we have been in two ambulances, three emergency rooms, countless doctor’s offices, and inpatient in hospitals in two states, three times. We know a ton of information about what is NOT going on, but no clear answers about why she is struggling.

She hasn’t fainted in three weeks now. She is still totally blind (lost eyesight within 48 hours). Over half of her hair fell out, in individual strand cascading like a waterfall, (over two weeks) then in huge chunks as large as 4×6 inches of baldness at once (over 36 hours)! We broke down and shaved the remaining hair on Wednesday after another huge section on the side of her head came off with the beanie she wore to school on Wednesday to camouflage the large patch missing off the back of her head. One area fell out in a nearly-perfect heart shape, so once we shaved her remaining hair to ¼ inch, the bald heart looked intentional.

Today will be our third doctor’s appointment of the week. She is very frustrated by the amount of school she is missing. We are tying to emphasize that our priority is her well-being. The teachers, school staff, and her counselor are being fantastically supportive. The school started her on learning Braille on Wednesday and started mobility safety training with her VI (visual impairment) teacher today.

We are on the waiting list for a referral to an “undiagnosed conditions” program out of state. Please join us in praying that she will be accepted into the program (they receive so many applications that only a small fraction of kids actually get in). Also pray for doctors to have wisdom to figure out what’s going on and be able to help her. According to God’s perfect will and timing, we are simply requesting full healing for our girl, whether He wants to accomplish that through the common grace of medical aid, or to move miraculously to bring about dramatic healing that glorifies His name by leaving the medical community without explanation!

It is a HARD road we are walking. (If you don’t know the backstory, I told more at missed-deadlines and literal.) We are clinging to God’s grace through the darkness.

I cry to you, LORD;
I say, “You are my refuge,
my portion in the land of the living.”
– Psalm 142:5 (NIV)

Life

My strokes happened 6 years, 10 months ago, during a chiropractic neck manipulation, in Reno, Nevada, USA. On October 25, 2018, we will hit my 7-year “re-birthday” or stroke-a-versary.

I initially started my “Stroke of Grace” blog with the several-times-per week, weary detailing of the early years of my catastrophic stroke recovery journey. As I’ve gotten farther and farther away from the moment-by-moment shock and anguish of being plunged from able-bodied, into instantly trying to survive while being considered medically too fragile to sustain life, my blogging has become more infrequent, but has progressively focused less on stroke realities and more on the great grace God has been unveiling through the process. I’ve moved from primarily focusing on physical deficits, to my own name-based domain where I share many aspects of life, in anticipation of future book projects.

This week it occurs to me that I haven’t given my physical therapists, nurses, doctors, other stroke survivors, and families of Strokies, a very recent look into post-stroke realities. This post isn’t meant as a “downer,” but is an intentional attempt to contextualize the Grace aspect of my posts, against the ongoing physical struggle of post-stroke life. For those looking to hear about weight, hair, pain, eyes, ears, walking, exercise / therapy, emotions, family, ongoing upkeep, and a sample week, here you go!

Weight:

In 2010 and 2011 (pre-stroke) I was intentionally working hard at loosing the 40 pounds I weighed heavier than my medically prescribed “ideal” for height /age / gender. While I have faced a, sometimes highly debilitating, chronic illness since my teens, I did NOT smoke, drink, do drugs, take birth control pills, or engage in any behavior that put me at risk for heart attack or stroke. Those 40 pounds were my biggest health enemy, so I was safely and steadily whittling them away. As a late 39th birthday gift to myself, I bought a lovely leather jacket in my ideal size. I had been eyeing it for months, but waited to make the investment in celebration of that accomplished weight loss goal.

I had little time, a week I think, to enjoy the jacket while it fit properly. I soon was on a feeding tube and RAPIDLY loosing weight. It was estimated that my body was initially burning about 5,000 calories a day, just to sustain life in the face of such massive brain injury. As we transitioned to oral food, my regular meals were supplemented with 6 Boost-laden, full-fat, ice cream shakes per day. By the time I left the hospital around Christmas, I was about 20-pounds UNDER weight and the new leather jacket hung limply on my skeletal frame. (Since I couldn’t coax my left arm into a coat sleeve anyway, I wasn’t initially very aware of this loss.)

Gradually brain function stabilized and caloric requirements reduced. Since I had so much ground to regain, I keep those early eating patterns the hospital had trained me to develop. I gained back that lost 20 and kept right on going, also regaining my hard-fought 40 pound loss. Since my energies went to sleep and therapy, I focus little on the “vanity” of numbers on a scale.

Around 2014 – 2016, I began to put some thought back into food choices and prevented further gain, even whittling away at the excess weight again. By early July, 2017, I was nearing my goal range of 125-133. I was at 134 one week, and one a dime, GAINED 15 pounds within 10 days.

Since we were traveling, and I was indulging in soda (not part of my normal diet), I thought this sudden jump must be a combination of fluid retention from air flight, and short-lived poor eating choices that would soon reverse. However, within about 13 months, I pack on a total of 45 pounds, breaking my all-time highest weight record (far heavier than my highest pregnancy weight).

This brings us within a few weeks of today. After seeing my primary care provider, specialists in several different fields, and running huge batteries of tests, the conclusion is that my thyroid and other functions seem fairly stable. A nutritionist and bariatric (weight) doctor are now coaching me. The current working theory is that I had still been taking in between 2,000 – 3,000 calories on an average day. Most individual food choices were of excellent quality, I was just so messed up in my perception of hunger and intake verses calorie expense, that, upon aging (I turned 45 the month I started rapidly gaining), and with continued brain connection improvement reducing energy fuel needs, that something flipped in my body’s inability to cope with so much extra nutrition.

I’m now keeping a food log of every single thing I eat or drink, measuring portions and recoding everything. (MyFitnessPal, an app I tried to understand a few years back but still couldn’t quite grasp yet, has been the best tool in this round of this fight!) Without factoring in my twice-a-week water therapy, my body seems to burn around 1,400 – 1,450 calories per day right now, so my current daily goal range is to consume between 1,200 – 1,400 calories daily. I have already lost a little weight even during these first couple highly stressful weeks I’ve been starting to pay attention to these numbers. (My plan is to start logging in earnest next week, when my schedule becomes more predictable again.)

I have no significantly changed my fluid intake pattern, but by charting everything we have discovered that I typically drink two to three times the average daily recommended 64 ounces. My doctor says that for many people this would be a problem, throwing off electrolytes and dangerously diluting various needed elements in the body, but that my levels are exactly where they need to be, so I should keep listen to my body’s accurate fluid demands.

Fun Facts: Altoids Arctic mints are 5 calories. A stalk of celery is 6 calories, and your body uses 1 calorie to digest it, for a net gain of 5 calories.

This Week:

The past week has been pretty intense.

A week ago Thursday, found me at the eye doctor with a sudden onset of a painfully crusty infection that required two different kinds of antibiotic drops and gel, treatments 5 times a day, through Tuesday. I guess this is the result of all the massive west coast wildfires and how my eye, with a still profoundly effected tear duct, reacted to the prolonged on slot of smoke allergies.

The swelling and eye infection wasn’t clearing up quite as fast as it should have been, but I started mega doses of steroids on Monday (in preparation for my year MRI and CT scans on Wednesday) and the eye infection responded beautifully to the steroids and was totally clear by Tuesday!

Wednesday I took 167 mg (starting dose is 4 mg) of Prednisone and mythelPredniSolone within 13 hours, YUCK!!! Plus 50 mg Benadryl. I then went and did the tests and got “fun” contrast dye pumped into my veins. I think the CT tech thought I was being over dramatic when I winced and cried out as he pushed the dye, but I felt a little validated when that particular vein was visibly bruised on Thursday, showing clear evidence that the IV push had actually been as painful as I had acted!

I had planned on a much longer post tonight, but I will need to hit topics of family, emotions, therapy, walking, eyes, ears, hair, business, writing, and pain, in another post, along with pictures. I’m currently on Benadryl again and too brain-exhausted to type clearly. Tonight, yes, more than 78 hours after testing (but also 14 hours after my final step-down lowest dose of steroids) I went and welted out in hives. *sigh*

Since hubby is out of town, both our adult son and my parents are on stand-by to take me into ER overnight, if needed. I’m praying that Benadryl will kick in, I’ll soon be asleep, and there will be no further need for medical intervention!!!

Yesterday I posted to facebook:

I haven’t slept much since Monday. Tomorrow is last dose of steroids. 
TIRED. OH-SO-EXHAUSTED!

This morning I posted this praise update.

Life:

I was asked Thursday, “If you got offered the reset button for your life, would you push it?”.
My firm reply was simply, “NOPE!”

Later I added, “If you had asked me 2, 3, or 5 years ago, the answer likely might have been different, but now I realize I’m living the best “reset” God perfectly planned for me and I’m so very thankful, now, that I wasn’t given that option then!”

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