What a week!!
This is long but intended to give you a glimpse of what living with a chronic condition, physical challanges and in particular Foreign Accent Syndrome (aka pseudo-foreign accent) is like.
Tuesday/// flood n blood
Started with a FLOOD!Â
The washing machine drain hose popped off and into one of my large overwintering potted plants splattering mud and flooding the entire room in nearly an inch of water and mud!!!
Â Â I couldn’t get cardboard boxes of watersensitive goods and rugs out of there fast enough. It took 3 hours to clean up the floor let alone for it to dry enough to replace items in their places.
Â Â Then I saw where the water had penetrated under the wall and sixteen feet across the attached garage saturating some more water damagable goods. Ugh! It was now early afternoon and I was physically ill from the ongoing migraine which was made worse with all the activity.Â
Â Â My plans for the day included shopping and readying the home for out of town guests tonight. Now my home and I were both worse! “God help me laugh, because I just wanna cry.”
While getting ready to drive for groceries I received phone call from my neurologist saying I need to get to the ER on Tuesday to get an IV to break my 3 week migraine.Â
I REALLY did NOT want to go to Emergency Room, especially with nationwide epidemic of flu and noravirus overfilling the places. But neurologist said that’s where I’d have to get it administered. I wasn’t allowed to drive myself so went searching for a ride. Thank you Eddie the neighbor who took me in for gas money.
I was smart enough to go to Indiana University Hospital which was less used than the other choice which I know would’ve been crowded.
I got right in! Short talk w Dr. Singh who was neuro doc working ER and my meds were shortly started (toradol, benedryl, compazine w saline IV). Thank you God!
Mini Medical Conference:
Right after my meds started, the head staff Neuro doc, 2 interns, 3 residents with my treating ER neuro doc all crowded into edge of my room to learn FAS related info and ask questions b/c never had seen a case (main doc knew me from another hospital visit). They talked w me for about 6 minutes but my speech/thinking was at it’s worst. So I was able to demonstrate what this is like personally (not just written words of text in a medical or case journal) to quite a few learning professionals. We told them how rare it is and shared my story (coming up on 4 years). They asked great questions and their faces showed the interest and concern. I could see the wheels turning in their thoughts as we discussed such a profound health/life event that doesn’t show up on today’s scans yet being obviously neurological and brain related. I shared the added psychological suffering that takes place too often by not recognizing it nor “seeing” past the regular diagnostic boxes w scans and tests for stroke as an example. I told them that simply implying that it’s psychosymatic without also pursuing speech and social impacts of facing such a profound change can actually cause health care professionals to actually cause pain rather than relieve it. I said I’d rather have a doc say “I don’t know”… ‘Let’s find out’… Or ‘maybe it’s this’ as a collaborative resource than to just choose a “closest to this” box to label the condition.Â
This is WHY I continue to have hope for our future and those just getting diagnosed. These teaching/learning doctors ARE the future of medical treatment. Pray with me that the seeds planted will grow and flourish into even more study and research!!
They left when they could tell it was taxing me.Â Â Every sound of the ER was amplified and jumbled which increased the head pain and nausea. Nurse turned lights off and said to rest. After about 10 minutes of feeling super hot & like I was Gonna die, I turned on my side and had an hour of good nap.
Â Â I awoke to husband’s phone call and a check by my ER neurologist. The migraine had gone from 9+ to 2.5!! Â I was going to be discharged & could go home. It was great to see Dr. Singh lift his arms high overhead in rejoicing with me at the conquering of all that pain! My nurse said empathetically “next time don’t wait three weeks before getting this.” I answered, “I never even knew about this before. I hope they can do something priactively so it doesn’t have to get to this degree.”
My husband even said to me “why didn’t anyone tell us about this before now?”
Â Â Although I was a bit spacey in the passenger seat as Steve drove us home. I was not “high”, just ready to go to bed and had no problem with the idea of sleeping it off.
Â Â When I saw all the radar maps full of red and lightning bolts, I marveled with joy at being able to see all these terrible storm images and I was NOT writhing in pain. I had joy at knowing that THIS treatment truely was working.
///Wednesday – wonderful-
was a day of family errands. I did have another quiet rest while doing morning study, but was nonstop 1pm til midnight. I did enjoy putting together dinner and taking it over to sister’s for great family time from 6:00-9:30. I only noticed fatigue from 10pm to midnight when making a shortcake for tomorrow’s breakfast & then homework.
////Â Thursday -back w vengence
Over the course of a dialog meeting my migraine was coming back with a vengence. It was at a 4, going into the meeting which I attributed to the blustery cold front coming through today. By the end of the meeting, I was at lecel 8- very light sensitive, needed to close my eyes to ease thinking/speaking.Â
Â Â I took the elevator up a level directly to my neurology department to speak to a nurse about this. I was getting more nausious and needed to do a good bit of driving. Nurse took down all info and would speak to my neurologist.Â
Â Â As the day progressed with me doing many errands, scheduled appointments; my symptoms worsened: I wore shades over my glasses, speech was much more accented, harder to think, talk, unsteady gait and WOW…exhaustion!! I was really happy that husband cooked supper because otherwise I wouldn’t have even eaten. I forced myself to stay awake to watch a favorite TV program and then went to bed early.
It was one of those “running” to bed because I am almost afraid if I don’t get into bed NOW I might fall asleep on the way.
///Friday – I’m “not good”
I went to bed very early, yet was OUT ’til mid morning. I awoke feeling like a weighted blob. Eyes watering in pain. My movements are very sluggish. I thank God for Moody Radio playing so that I can at least listen to good Biblical teachings and music that are my favorites. It is extremely hard to read & write… Opening my eyes and seeing “hurts”.Â
I slowly went downstairs to the kitchen, let dogs out & back in and fed them, left a note for neice, took morning meds with a bit of banana and crackers & climbed back to bed.Â
Using my faithful iTouch I checked on my most critical email and FB, wishing I could do more, but knowing I am Done!
I will be asleep as soon as my Itouch reads me my Bible reading chapters for today. HINT: The free app YouVersion can voice the Bible text and is a life-saver for blind headaches like today.
Gratitude helps attitude. I am not happy about all the things I will not get done today. However, I am taking care to do what is right and real. Other’s plans or false expectations will have to face reality and flex, wait or go elsewhere.
I use the words “not good” for when I am doing poorly because word finding is difficult.
Today, I notice that word production is even harder. Even writing this account takes a lot of work.Â
Prayerfully, I will be better soon. My God is an awesome God, powerful, and able to fix all this instantly. But He knows what I need more than I do.Â
Apparently, that means Sleep for me right now so that I will be better able to go to Ask Anything Saturday tomorrow for a few hours, church on Sunday and work on a special project on Monday!!
Whether this is simply a physical setback or a trial to refine me, I don’t know. However I am certain that if I keep my faith centered on what God tells me to do or “not do” it will work out for the best.
Obedience means “rest” right now. I do appreciate prayers for speedy recharge, but more for patience in the process and wisdom in making decisions within limitations (cognative work).