A Good Playdough Day

To those who know about the unpredictability of autoimmune diseases, it comes as no surprise that there are days that I have deemed as “Frisbee Squirrel” days. Those days when all previously made plans must be set aside to deal with a body in non-compliance. When the weight of one’s extremities add boat anchors to the weight of the torso sinking into the mattress, it requires major effort to move. Getting upright to walk a few yards to the toilet and back is akin to executing a marathon. Although, praise the Lord, these days are fewer than past years, I do occasionally get side-lined. Today was just such a day.

I had great plans of getting some painting done on a big set project that has a hard deadline. I did prep work yesterday, so I was ready to execute some productivity today. Awwwwk [buzzer sound]…not gonna happen!

Exactly one day after proclaiming that I do trust that God is in charge of everything in my life…And that ALL of it is for my good and His glory…And that I can actually rejoice in trials because of the fact that God uses trials to make me more like Jesus; here I am “grounded” so to speak. My bones have all the strength of a pile of dust. I am fighting to keep my eyes open and my thoughts of the simplest task in a straight line.

It became obvious that I was forced to resign myself to another lost day. The cold, rainy day outside was adding to the gloom that wanted to throw a big pitty-party to the frisbee squirrel who was of no use. However, God was gracious to me!! Let me tell you how.

Last night’s growth group study, focussing on the Bible book of Ephesians, dealt with God’s gifting each of us with what we need to help grow ourselves & others up in Christlikeness. A godly advisor & another friend each independently spoke of being happy for trials. In my morning Bible reading God’s Word reminded me that God is the strength of my heart. In the midday, I received an unexpected facebook tagging of a very good article about Women’s ministry being more than just casseroles or being a Proverbs 31 woman. And finally, my handheld device allowed me, even while too weak to get out of bed, to follow-up on people who are seeking help with Foreign Accent Syndrome.

That series of events helped me quickly shift off of the feelings of defeat to the intentional pursuit of just doing something…any little thing…that I can do.

As a result, today I was blessed to be able to bring great relief and comfort to two souls that are literally in different parts of the world from me, and each other. Yet all three of us know the pain, suffering & loneliness associated with having such a rare condition as Foreign Accent Syndrome. The difference is, I know how to use social media and the world-wide web to reach out to find those who are not getting properly diagnosed or help in the ignorant or uninformed medical community. I have been blessed to be able to speak with many different people about many different things in straightforward and understanding manner. I care for others and they sense that early on. God allows me to be comfort and His love for them.

It is so humbling to realize that God actually uses ME!
God actually uses me, at my absolute lowest of strength and power to have impact in the lives of others! Is that not amazing?!

So, today as I look back on what I thought was going to be another wasted day in which I was just taking up resources, God instead used this day to teach me a new perspective.
What I thought was a “Frisbee Squirrel” day actually turned out to be a “playdough” day. >> Rather than giving in to the notion that I was of no more use than a dried up dead squirrel and all the negativity associated with that, I was given a different outlook.

God allowed me to be truly flexible; to accept that although things were not as I had planned, that it could be okay.

Allowing myself to be molded by my Maker was very rewarding. In fact it was beautiful. I could relinquish all the strain of trying to “make” things happen and instead allow myself to be moved and shaped as He saw fit, knowing that would guarantee a good result. In fact: the best result was assured. It truly left a lasting impression on me and on others.

As I look back on today, I rejoice even in the not-idealic circumstances of my day. I was able to make a new friend in Scotland and another in Chile who actually cried with relief to hear from me…me?! (a nobody Frisbee Squirrel bedridden in the Midwestern United States). I tell you God never ceases to amaze me. Amazing love; how can it be? It was a good day to be playdough.

What kind of day did you have?

Foreign Accent Syndrome News: Ellen’s Story – Part 01

Recently, I was out of town to judge a County Fair 4-H Dog Agility Competition. While waiting for my part of the day to start, I noticed the young lady next to me snapping  a lot of photographs.  She was obviously a photographer who didn’t seem to know exactly what was going on in respect to the showmanship judging that was taking place. I struck up a casual conversation and started to explain what was happening and what the judge was looking for.

Within a few moments, I was asked the number one question that most Foreign Accented people get; “where are you from?”  I answered, “from Indianapolis.” She replied with “I mean, where are you from ORIGINALLY.”  Etc. Etc/  The same old scene played out, but I kept it brief, because she was working and I was about to. I handed her my “business card” since she asked if she might contact me about doing a possible story on Foreign Accent Syndrome.

Sure enough, she called me the next week to conduct a phone interview which was about an hour in length. I had a LOT to say about the various aspects of Foreign Accent Syndrome. I have learned a LOT in four-plus years, so I took the opportunity to share as much as I could while keeping to the most important aspects of answering her questions. How did I get it? What exactly IS FAS? What is it like to live with FAS? What, if anything can be done to help?

I was quite happy to share what I have learned and still am learning, especially since it is so rare and there are not many doctors who have even heard of it, let alone seen a case. It’s just so rare, that even some medical specialists like neurologists, or psychiatrists, or speech therapists, have not ever encountered someone with it. Unfortunately, it’s rarity also leads to a great deal of skepticism and doubt… maybe even confrontational disbelief!  That is one of the hardest parts for someone who is still trying to grasp the sudden, drastic changes with rare Foreign Accent Syndrome “WHAT’S HAPPENING TO ME?!”

I will attach both a separate image as well as the original link to the published THE PAPER OF WABASH (Indiana) news article which is not exactly accurate.  If you want to the “online edition”. It is on page 22 of this week’s http://www.thepaperofwabash.com/online.php

Page 22 of The Paper of Wabash published 2013.07.24

If only I had been sent a rough draft, I could have corrected the errors before they went to print, but since it’s out there, here are some corrections:

I was slightly misquoted which seemed to infer that I was saying something I didn’t exactly say.  For example, the part about conversion disorder and the power of the mine was a bit “off” in the way it was written.  Still, it was not a major mistake.

The date of incidence was MAY 12th, 2009. Again, not a major thing, just two months after what she said of March. That is a bit more important as far as continuity of the story in case history.

It happened when I was working at my computer at about 1p.m.  We had weeks of thunderstorms which exasperated my migraines. The first different symptoms of “the onset of my Foreign Accent Syndrome” started with yet another head pressure headache, but my chin and then my lower lip suddenly started feeling tingly and numb; but only on the right half! The numbness continued to spread up my face: the upper lip, side of the nose and cheek, outside of and around my eye, eyelids, forehead, etc… always on the right and such an intense numbness that I could not feel the breeze that I purposefully created with my hand. When I pressed the surface of my flesh, it felt so numb that it reminded me of when I receive a shot at the dentist . . . you know. . . like your lip is three inches thick!!  The numbness continued to spread up my scalp and wrapped around the back of my head and then was very painful (painful, stabbing, karate-chop type attacks to the back and right of the base of my skull). It just surged even more while I was just washing dishes.  I really thought this was a pinched nerve and kept trying various movements to try to alleviate the problem.

When my husband returned from work, I told him what was happening and he agreed that it must be a pinched nerve. However, throughout the night the numbness traveled over my right shoulder and upper arm and my right grip felt weak. Talking to my husband we decided I would call my doctor as soon as his office opened.

Long story short, they couldn’t fit me into their schedule, so I was advised to go to the ER. While there, about 24 hours after first symptoms, others noticed my speech starting to change. When talking to my husband from the ER, he asked “what did they give you?” “Nothing. Why?” I replied. “You sound like they’ve given you some drugs or something.”  “No; only saline IV,” I answered, “but I am getting really sleepy.”  It was only noon time!  Yet when I had received my CT, the neurologist held me for an MRI but after a long time of waiting they said, “Alright. We’ve decided to send you home after all. Just call your GP and tell him you need to get an MRI in the next three days.”  When I went home at 4:30 in the afternoon, I went straight to bed and didn’t wake up until 8:30 the next morning!! I didn’t wake at ALL during that entire time; not to eat supper or breakfast, nor even go to the toilet!

The next morning after the rest of the family had left for the day, so when I spoke to our dogs, I was greeted with an entirely different voice! ! !  To me, it sounded  a lot like a person who was deaf that can still speak.  I did record my voice in those first few days… however the online service I used called TalkBox has since changed ownership and those files are lost forever. What a shame!  Now, I make sure to keep a copy somewhere else. I’m not going to have that happen again if I can help it.

In any case, you can see why “Woman goes to bed with a migraine and wakes with [a foreign accent]” doesn’t quite tell the story.

Lest you think I am negative about the story . . . NOT AT ALL!  The reporter was very kind in the manner of her interviewing me. She indicated genuine concern and found the rarity fascinating. She showed empathy in how she interviewed and commented about how she imagined it would be to cope with such challenges. Then, she did something no other interviewer has done previously; she asked HOW her readership might be able to HELP! Is there a foundation set up to receive contributions or help? No. We are not officially set up with a foundation, nor official website. There IS an open support page on Facebook http://www.facebook.com/groups/FASaware/ as well as a closed one which is only for actual FAS people. My blog is another resource that is more accessible, searchable and more interractive.

– – – OKAY – – – THAT’s ^^^^ the first part of the story . . . I will add more at a later post. So you’ll just have to come back and visit another time.

I always welcome genuine questions and comments.   I am especially interested in helping others to learn about FAS.  Using my experience to help others through theirs helps make living with it more meaningful and even joyful (dispite circumstances this IS possible) as I know there is pupose in the pain <3



What A Week I’m Having

Mopping Mess
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! 
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!!!
  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.
  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. 
  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. 

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. 

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.  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.
  I awoke to husband’s phone call and a check by my ER neurologist. The migraine had gone from 9+ to 2.5!!  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?”

  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.
   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.

//// 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. 
  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. 
  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”. 

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. 

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. 

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. 

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).