Merry Christmas

Merry Christmas to my readers.  I wish you tons of joy today.  Be bathed in unconditional love.

December 15, 2011

After Frannie lost her vision, whenever she woke up alone, she would bark once, kind of a "Hello?" bark.  We would call to her in the other room and she would sniff her way through the house until she found us, then continue her nap at our feet.

November 30, 2011

I went to an Alan-non meeting last night on willingness, as is being willing to change.  It was a great example of hearing what I needed to hear. I realized it was a vocabulary thing; I kept saying "I," as in "I can do it," or "I am fine."  when I would be better off saying "Help me," "Forgive me," or "make me a better man."

I guess I am back to step one, realizing I am powerless.

Thanksgiving, 2011

Adrienne and I got back from Vermont this afternoon and I am really knocked out.  I slept a lot while we were gone and I imagine the pattern will continue for the next couple of days.  But if I had to name one thing I was thankful for, it would be Thanksgiving in Springfield, Vermont with some of our oldest and dearest friends.  Andrea and Mark are the kind of people that define the phrase "good friend."

And we got to see Mercedes.  what a treat that was.

A Simple test

I discoivered a great test to find out if I am being listened to; If the person speaking to me continues to talk after I have told them I agree with them, they have not been listening to me.  I asked my new doctor for a percocet refill, he agreed.  When I told him my last doctor had wrote a 90 day prescription, he freaked out and began to lecture me on why he refused to do that.  I never asked for a 90 day supply, my old doctor gave it to me and being new to the community of prescription narcotics consumers, I thought nothing of it.  I certainly don't have a problem with doing it monthly and I told this guy that, but he continued to lecture me about the inapropriateness of asking for a 90  day prescription.

And when all was said and done, he doubled my dosage.  What a jack ass.

The Wine of Forgetfulness

In Wong Kar Wai's odd martial arts film, Ashes of Time, a character finds a cask of wine that will make the drinker forget.  As he consumes the wine, his memories fade away, until he suddenly gets up and rides  away toward the dawn.

 I can tell it will be a night without much sleep and no rest.  A quick Google brought me to Proverbs 31:7,"let them drink and forget their poverty and remember their misery no more."

Time

Last night I dreamed about Natasha's funeral; it was dark and full of people I didn't know.   They asked me difficult questions that I couldn't answer.   The day before, at the gym, some song I had never heard before sent me stumbling and sobbing into the showers, crying that I missed her.  Maybe because the tumult from last month is slowing down, these Natasha bumps (as in bumping up a topic in an Internet forum to keep it active) have been happening. With less to occupy it, my mind goes to her, sometimes unwillingly.

21 Days

Three weeks ago today, I lost my angel.  And even beyond her death, everything else is a crisis.  If life is  journey, then mine has veered so far off into a deep, uncharted and boundless wilderness that I will never find it again. 


One of the things that sustained  me when I was in the hospital last year was The Third Step Prayer.  I told myself that even if I had doubts, as long as I sought God and to do His will, I would be alright.  Not cured, not given vast wealth or any of the other things I was tempted to beg for, all I wanted was to do His will, then I would be alright.

I am not there yet, but the reminder that that place exists is helpful.

Angel Band

It has been a week since my daughter, Natasha, died.  Adrienne, Alex and I arrived home in Georgia on Wednesday afternoon.  After only a few weeks, this is our home now and Vermont is the alien country.  I tremulously wandered around our condo, reacquainting myself to the familiar territory; I was the changed one.

Farther Along

 I have come to dread the innocuous question, "How are you doing?"  And I get asked that alot lately; to me it is a reminder that I am living every parent's nightmare.  My daughter, Natasha, died of sepsis on Friday afternoon, and sometimes, despite my efforts not to do so, I blurt out, "I'm burying my daughter tomorrow."

This is my third, adult funeral of a close family member.  Even after the death of my father, I have never felt so intense a pain.  On the morning of his funeral, I heard these words and, for the first time since getting the news of his accident, I broke down:

When death has come and taken our loved ones
It leaves our home so lonely and drear
Then do we wonder why others prosper
Living so wicked year after year

Farther along we'll know all about it
Farther along we'll understand why
Cheer up my brother, live in the sunshine
We'll understand it all, by and by 

I am getting ready to go to the funeral home for visitation.  I am preoccupied with pulling together an outfit from my meager suitcase as my grand daughter plays  She has started to process her own loss with a carefree joy that tells me, from her point of view, death means nothing.  

Welcome to the Daily Grind

I decided it was time to officially end the mourning period for my beloved Kofenya in Oxford and sample the Statesboro alternative, called The Daily Grind.  I had been here twice before, the first time I completely lost my nerve and backed out before anyone saw me; the second time I ordered a cup of coffee and muffin then, grudgingly sat at the counter, not quite convinced it was the right place for me.

,

Georgialand II

Things I have learned since we moved to Georgia land:

1. Never try to hurry. There is no advantage to it and on a day like today, no one else is in a hurry either.
2. Never leave anything I plan to touch in the car on a hot day.
3. It is honestly not the heat, it is the humidity. 91 degrees with 34% humidity is a breath of fresh air to any temperature and 100% humidity.
4. I need a hat.
5. The fastest way to end a conversation is to talk. A friend may be interested in what I have to say, but the average person I encounter is not.
6. The pancakes I order at IHOP might not be the pancakes I get.
7. Everyone in Statesboro is nice and friendly, but sometimes that niceness is only a thin veneer over hostility
8. Just because someone is willing to help doesn't mean they are willing to do any favors.

Anniversaries

This was me, a year ago.

God is good.

I've given myself permission to spend today in bed, even though it looks great outside and the temperature is (relatively) cooler.  Tomorrow is  my first IVIg in 31 days.  This is the longest I have gone between infusions so far.

I am not sure if that is why I feel so rotten (really tired, lots of pain, unsteady on my feet) or if there is another reason.  When I had the flu last December, it took months for me to recover; it is plausible that my exhaustion might be left over from the move.

I feel guilty about wasting a beautiful day like today.  But the idea of doing what I need to to do get out there is beyond my capabilities right now.  Good thing Alex is here to drain the dogs.

Hot Enough?

Yes, it is really hot here.  Despite my reluctance to pay attentiuon to anything newsy, I guess the rest of the United States is also really hot.

Like unbelievably hot.  Yesterday, at 10 am, it was already 100 degrees in downtown Statesboro.  It was still 100+ at 7 pm, when we went into the Averitt Center to watch Hairspray.  Sitting in the Statesboro Regional Library it is 95.

Wow.

I am constantly amazed when I talk to friends not from the South how much they sound like I have moved to another country.  They do speak American here.

On a personal note, it have been 25 days since my last IVIg infusion.  Adrienne says I am deteriorating and I have to take her word for it; my exhaustion has reached new levels and I feel clumsier than I have in months.

In other news, my re-walking anniversary is next week.  What a celebration!

Georgia-Land

We have made it to Statesboro after visiting with my sister in Kentucky and then a long and gorgeous drive into the South.  I still feel pretty disoriented, but it is getting better.  Little things like getting a library card, Internet access and meeting my new neurologist, Dr. Patel (another transplant, I think) help.

Counting the days

We are packing, getting ready for our move to Statesboro, Georgia.  Once again, I am going to rely on Alex (and anyone else I can grab) to do the heavy lifting.

Neither Oxford nor Statesboro are really my home.  When I do go to my real home, I am sure I won't miss either one.  In the mean time, I am having a hard time saying good-bye.  There is so much here, so many people, that I love.  Moving, however, might put them out of my life and that makes me sad.

Usually when I leave a place, I feel like I feel like a criminal, sneaking away.  Actually, that has been true in the past.  The fact that I am going to miss being here, instead of being grateful to have gotten out in time, is proof that I am not the person I used to be and I celebrate that change.  I am pretty sure that I won't look at this time here (as opposed to my college years) with regret for the bad decisions I made.

I am done with my coffee, I need to get back to work.

How Mom and Dad Met

Dad, me, in 1967 on Grandpa Nota's riding lawn mower

Spring, 2007, one of the last times I saw him before he died,   I asked Dad how he and Mom met. We were sitting in the kitchen at 1 Pitt Street. While he talked, I took some notes.  This is the story he told me (as well as I could reconstruct it):

Dad's parents in front of their home  in Neffs, Ohio      

My father, Robert James Williams, was born May 10, 1920 in south-east Ohio.  I am not sure what town he was born in, but his family settled in Neffs, Ohio, a small, rural coal mining town.  At an early age, Dad exhibited one of his major character traits; he was a hard worker who never liked to sit still.  To help out with family expenses, money being short during the Depression, he grew vegetables and raised rabbits to sell.  Between 1936 and1939, Dad would work second shift in the mines, after going to to school during the day. During the summers, he and his brother Jack traveled around the country, getting free train rides by hiding in empty box cars with other men looking for work.  One summer he traveled as far as Texas, finding work herding sheep.  

In 1939, he quit school to work full time in the mines. He told me about the Willow Grove Mine explosion, which happened on March 19, 1940.  He was off that day, but  heard the explosions at home.  He spent days clearing the rubble and removing the remains of those trapped in the mine, including close friends he had known his entire life.  

Hazy, hot and humid

It is amazing how fast the seasons changed from cold, rainy and damp to hot and damp.  Living in an unairconditioned house is an endurance test.  Wearing long pants is insane.


I took a long walk yesterday before it got too hot. I have been struggling with wearing shorts and my ankle-foot orthotics. It is humiliating to expose them this way: the alternative would be to stay home or wear long pants.  


While walking, I had an epiphany: I was the one putting limits on me, not my CIDP. My desire to hide my AFOs was restricting my activity level when they are supposed to do the opposite. Wearing them means I can walk almost as fast and almost as far as I used to be able to walk.


What is the matter with me? Like anyone is going to care that I have these things on. 


 Like I care what anyone else may think about me wearing them.


Please feel free to leave your comments below.

Iron Ore

Update:

I saw the neurologist Monday and things are going well. Despite the ever present weakness, fatigue and pain, no CIDP symptoms. I am going to continue reducing my prednisone until it is 5 mg a day. I am going to start tapering off my IVIg-once every two weeks, then once a month and finally, as needed.

They are popping open champagne at my insurance headquarters over that! Last time I checked, my IVIg was over $16,000 a treatment.  I have had around fifty since last March.  

In other news, I am now married to a doctor. Adrienne received her PhD on Saturday. Next week, we will travel to Vermont to visit friends and pick up Mercedes. I can think of little else than seeing her again. There are also the preparations for moving to Statesboro, which will happen early in July. Of course, the house is still unsold.

Dogs

Wednesday, May 4, 2011 11:34:59 AM

Eloise and Mercedes

Adrienne, Eloise and I went to visit my family last weekend. That is my brother and his wife, my sister and her husband and my mother.

Mom has been in a nursing home since Dad died in 2007. Her Alzheimer's has progressed along its usual lines. I would view my mother in terms of what she was loosing; every time I saw her, there would be less of her there.

Letter to The Miami Student, the oldest student run newspaper in America

(It has happened again; reducing my steroid dosage is bringing out the madman in me.  Instead of using my car keys to scratch the following on the hood of the aforementioned vehicle, I have sought a more appropriate place to express myself.)

To the thoughtless driver who parked in a parking space for people with disabilities outside King Library on April 16; leaving your flashers on is not the same as having the appropriate parking permit.

Jesus is Lord

I have always heard that "God will never give you more than you can handle,"  and there are two opposing ways to look at it:  Sometimes that is good news, sometimes it is not.  After all, who wants to be tested?  I would never chose to be driven to the point where I end and my Higher Power has to take over.  One of the good things about that sort of testing is it can improve my relationship with God.  But what happens once the test is finished?  

Online Support

When I got my first diagnosis last spring I began to search the Internet for other people with the same diagnosis.  It was a great opportunity to learn about Google's Blog Search and how to create a Google search.  So now, whenever a blog has CIDP or Chronic Inflammatory Demyelinating Polyneuropathy in it, I get a notification on my homepage.

One of the things I was looking for was an online community to be a part of.  There are a few out there and today I found this one on a blog called Kenny Kellogg, Scott Orn's Personal Blog:

New CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) Support Network

Just a quick heads up that Ben's Friends online support networks went live on a newonline support network for CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). We're still populating all the features and rolling it out to patients. A group of patients saw what we were doing on our other networks, and asked for this, so we obliged. :)

Celebration

My wife is at home, in bed with the lu.  Me?  I'm out enjoying the sunshine, walking the dog, hanging out at the coffee shop; I put air in my tires and pedaled up and down the street this morning.  I would not call it "riding" just yet, but it is the direction I would like  to be going.

I went into the hospital for the first time one year ago today.  I feel pretty good right now.  

I don't take this milestone lightly; The trip from March19th, 2010 to today was challenging.  I didn't do it alone, and to the friends, family, fellowship members, and strangers who were part of that journey, thank you.  The experience would a lot more hellish without you.

This is your day to celebrate too.

Handi-can't

I am done being handi-can't.  
I am driving.  I am walking the monster dog.
As soon as I  get air in my tires, it is time to get the bicycle out.

Take that, CIDP.

Ash Wednesday

After our morning coffee in bed, Adrienne and I went to a local  beach so she could have her morning walk on the beach. There were several groups of people doing their morning exercise routines, some with personal trainers and bright equipment. Most walked or ran across the white sand.

Fat Tuesday

We flew into Naples last Friday night (and boy, were my arms sore!).

Monday's Blahs

I cancelled last Monday's physical therapy appointment because I was not feeling well.  Exhaustion from a busy weekend, four hours a day driving, then whirlwind visiting with my family coupled with only a few hours sleep the night before left me with a couple of painful cold sores and the sniffles.  There is also a buzzing sound in my ears and objects seem to sport a lightly radiating gloriole  around them.

I hope they won't charge  for the missed appointment.  Which askes the question, am I really too ill to go or am I playing hookey?  I feel guilty about choosing to stay home.  In my heart, I should have gone and just been sick.  It will be my fault if I will have to pay for this out of my own pocket.  I should never have gotten sick.  It is my own fault.  I should have...

My Gratitude List

I have been feeling a little gunky emotionally lately.  New tough time of year, I guess.  I have been so busy thinking about what happened last year that I am scaring myself.

People used to comment on how, during the worst of it,  I was keeping my spirits up, that I had an optimistic attitude, and I was relying on God to see me though the bad days and bad moments.  To my thinking that was because I was making the choices to do those things.  I didn't want to get lost in fear and despair.  It was like a big hole in the road that I could either go into or go around.

On Anniversaries

 I still have no idea how to understand this change. I still cannot properly describe what it means to have been a person who knew she could do anything and to discover she can do so little. But right now that doesn't matter. I am still alive. -Missy Y. (formerly A Case of You)


My first anniversary of the onset of my chronic inflammatory demyelinating polyneuropathy is just days away and I am all abuzz with excitement.  The symptoms appeared at the beginning of March, but I went into the hospital on March 19th; I am not sure which date will earn the badge of being the most significant.  That is not quite sarcasm.  Perhaps June First would be a better date; that is when Dr. Boughaba correctly diagnosed my chronic inflammatory demyelinating polyneuropathy (and the date I began to improve). I don't really believe that the actual dates mean anything.  They are more like convenient markers that can measure the distance I am getting away from the horrid events of 2010.

I can dish it out, but can I take it if I dish it out to myself?

Thursday, February 17, 2011 

I am preparing to recognize a milestone-my symptoms first appeared early in March, 2010. Whether I am going to celebrate or curse remains to be seen.
It depends on my perspective on the events of the last twelve months. A year ago I was healthy, employed, and looking forward to vacationing with my wife; two months later I was paralyzed and totally dependent on other people for everything.

Sunshine and Unicorns

Today is more than just a good day; the weather has been kind, permitting me to go about outside in the (semi) warm air and sunshine.  Plus, I have more energy than I've had in a long time. It is a great day. 

I picked up my ankle-foot orthotics yesterday.  I am still a little uncomfortable with them, but I know that is just until I get used to them.  They have been very helpful.  I had them on for about two hours today while I went grocery shopping and I was amazed at how much of a difference they make.

There was more that I wanted to share, but I am tired, so it is off to Napland.

Did you get a flu shot before you CIDP or GBS? Spotlight: Flu Vaccines and Neurological Problems | Philosophers stone

I haven't had a chance to completely check if this is one person's opinion or if there are any facts connected to it.  I am posting it now to start a conversation.

Durring my hospitalization,  I heard doctors and nurses talk about how rare it was to see so many people with GBS.  My mind went back to the previous summer's influenza vaccination frenzy.  I don't usually get flu shots, but did in Fall of 2009.

Spotlight: Flu Vaccines and Neurological Problems | Philosophers stone

Monday's update

As always,  my appointment with Dr. Boughaba had an anxiety relieving effect.  I consiuder myself very fortunate to have found her.  We talked about finding a new neurologist in Statesboro and she is willing to help with the search.  That was a big relief because I hadn't been able to find any neurologists there that specialized in CIDP like she does.

Chronic inflammatory demyelinating polyneuropathy is not a progressive illness, it is an intermittent condition.    She was concerned that I might be having a flare up when I told her about feeling more fatigued lately and off balance more.  She proposed extra IVIg treatments for now.

Monday

Monday morning, back at it.  A quick look at facebook shows me a world still rocking from yesterday's disappointing Black Eyed Peas performance.

I am off to physical therapy soon and then later today I have an appointment with my neurologist.

Details to follow.

My day out

Monday, January 31, 2011 10:43:47 PM

We woke on Wednesday morning to a house with no electricity which meant no heat, to Internet, and NO COFFEE. There was a huge ice storm in South-West Ohio last night, leaving everything coated in glass. It is very pretty to look at, but getting out of the house to find heat, Internet and good coffee was pretty tricky.

Good Days, Bad Days (You know I've had my share)

I've been listening to plenty of Led Zeppelin lately.  Not sure why.

Just so everyone knows, this is a bad day (actually, several bad days).  I am tired all the time, but can't sleep and I am in pain.  Nights are the worst.

I  have been so busy working on the physical therapy aspect of my recovery that I forgot I have a chronic illness that I know almost nothing of, especially how it manifests itself  after the initial symptoms abate. 

So I am taking it to the Internet:

Luxury Problems

I feel bad about something I said in my previous post-about being tired of being grateful.  That is not quite what I wanted to say; I am aware that everything I have needed, and many things that I have wanted, have been provided to me when I have needed it.

To our friends, family and complete strangers who have treated us with generosity like I have never experienced, or thought I would experience, you will always hold a dear place in me.  None of you have ever asked for anything, not even gas money.

I feel like I have received a miracle, "God's Footprint," so to speak.  And sometimes, I don't feel worthy of it.

And sometimes, like today, I have say that if I could have chosen, I would have chosen to stay in my old life.

Continuity of Care

Monday, January 17, 2011 09:04:24 PM

We made it to church yesterday.  I kept falling asleep; at one point Adrienne woke me up because I began to snore...

I haven't been writing much lately, not because I haven't anything to say, but because I have been too busy sleeping my life away. No matter how much sleep I get, it isn't enough. After church, I ate lunch then took a five hour nap. Then came dinner and off to bed I went.

I don't know what makes a good or bad physical or occupational therapist, but I always felt I had competent, if not excellent ones and I was fortunate to have them. And there have been plenty.  I had both kinds of therapists at University Hospital, a plethora of therapists at the Drake Center, and then throughout the summer, a succession of physical and occupational therapists came to my house.  I have had fifteen different therapists.

Happy Birthday, Emily.

Last night I achieved the (somewhat dubious) goal I set for myself here,