Tuesday, November 30, 2010


Shannon at Demyelinated not Destroyed wrote a greet post about exercise that I am linking to for my readers w/CIDP.

I look forward to her weekly posts and almost always come away with something I didn't know.


The Hours

Tuesday, November 11, 2010, 8:34 am

Being productive is cool:

I got out of bed at 7 o'clock today.  The first thing I did was plug in my iPod for some sweet, Brazilian music then gather the ingredients for tonight's supper, Sweet Potato Chili , a crock pot recipe.  I brought a chair into the kitchen so I could sit while reaching down into the bottom of the refrigerator to get the sweet potatoes and onions.  It is much less taxing to move the chair and sit than to hold my balance while bending over.  Bending at the knees is a skill I haven't remastered yet/

Being on my feet while cutting was a challenge, but I found that if I stand in the corner and lean my hip against the counter, I can stand long enough to cut the veggies and make  my coffee.

After the chili was assembled and the crock pot plugged in,  I started making my breakfast, a bowl of grits.  Since our kitchen is too small to host a microwave, I had to assemble the it in the kitchen, then walk it to the microwave without spilling.

Once again, the chair from the table gave me a place to rest while waiting for the grits to cook.

When I sat down to eat, I checked the time.  It was just after 8.  A pretty good hour.


Friday, November 26, 2010

An answered prayer

Friday, November 26, 2010 10:10 AM

We flew into Dayton last night and boy, are my arms tired! I couldn't resist. It was a late night for us and I had an early morning today. We are both tired and I am feeling a little under the weather (sick). It is probably from my poor dietary choices and not from a bug.

We left New Orleans on Monday and drove to Mobile, Alabama to visit a childhood friend of Adrienne and her husband. After a good night's sleep, followed by a long nap in the morning, we made it to their house early in the afternoon. For the next two days, they treated us like royalty, opening their home to us and chauffeuring us around Mobile.

I pushed myself on our site seeing visits, walking as much as possible. We visited a Civil War era fort at the mouth of Mobile Bay and I must have walked at least 90% of our time there,going around the perimeter and down stairs on my feet. It was fun to see the world from that height. It did take its toll on me and wear me out.

On the way out, an elderly lady approached our group and asked, “Well, did he behave himself?” The rest of the gang paused to talk with her and joke about my behavior. I rolled ahead, embarrassed at being talked about as if I were a hyperactive twelve-year-old.

When I calmed down, I realized that I had it wrong; she wasn't singleing me out because I was a special, she was trying to ingratiate herself with us in a friendly way. I remember a very social client who was mildly retarded and used a walker because he had cerebral palsy. One of the things he liked to do was approach a pair of people having an animated conversation, such as two women in the grocery store where he worked. Once in position, he would wait until the conversation reached a point where both women would begin laughing. He would laugh with them and say something like, “You just don't know...” at which point, the ladies would include him in the conversation, as if he had been there all along. Tricky bastard.

Adrienne's friend and her husband many rather personal questions about what happened to me, “What was the worst part? How many medications did I take daily ? My illness was monopolizing the conversation and I began to feel a little self-conscious. Was I the ambassador for disabled?

One of the things that Al-anon has taught me is that when other people exhibit annoying behaviors, it is often because I find the same things annoying in my self.

With that in mind, I flipped my perspective and realized that these 3 people were trying to do something I had difficulty doing; ask some one questions about their disability. Once I had a friend who was in a wheelchair and I let that chair get in between us.I never asked him why he was there or anything about his life outside of the narrow focus of our shared interests. I never did it because I was afraid to bring these subjects up. That was silly of me.

He may have welcomed sharing that part of his life with me. If not, he was capable of letting me know. This may have deepened and improved our relationship. It would have been helpful to talk to him about these things when I got sick and realized I was about to become disabled.

I sent him an email last summer, but never heard back. I hope I'll hear from again; I miss him and the things we talked about. We also might have done the other thing friends do; support each other through difficult times.

We left Mobile Thursday afternoon drove to Louis Armstrong International Airport in New Orleans for our flight home. I was once again groped by TSA; was no easier the second time. However, this time, the Air-Tran employees were very courteous, speaking only to me about myself and asking before grabbing my chair.

I left the South renewed and encouraged by the friendly people we had met. I don't think it was because I was a handicapped, but because they were genuinely good people.

I especially appreciated the hotel. The room accommodated myself and my chair nicely and the bed was comfortable. We were late leaving the motel, largely due to my exhaustion. An employee came to our room to check on us. She also took a moment to hold Adrienne's hand and prayed for our safe travel home.  She showed herself to be braver than me.

Friday, November 26, 2010 12:34 PM

Tuesday, November 23, 2010

Going to New Orleans with an aching in my heart

Friday, November 11, 10:30 PM

Up early, after an early night. I took an ambien as soon as I finished packing (around 8 pm) the Thursday and slept though until Adrienne woke me at 4 am. The airport was jumping when we arrived two hours later; maybe because it was the Friday before Thanksgiving. We were both excited and nervous about my first trip since I got sick. It was also going to be our fist vacation in over a year. It certainly was going to be an education trip for us and hopefully a few others we encountered along the way.

Getting through security was an uncomfortable experience. I had to submit to a body search-hands down my pants, etc. It was explained to me by the apologetic TSA agent who would soon be sticking his gloved hands under my butt, that these were the new security rules for wheelchairs, so I can expect the same on the return trip. I chose not to go into the privacy booth, rather remaining in full sight for everyone to see. These rules are to make my fellow passengers feel safer, but I don't believe they make us any safer in reality.

Getting on the plane was also uncomfortable since I wasn't allowed to speak for myself. It was suffocating to sit in my chair, the TAB's towering over me, talking about me while my contributions to the conversation were ignored or die d unsaid in my mouth. In hindsight, it seems like being overly sensitive, but I remember how angry I felt when it was happening. P erhaps it had to do with the humiliation of already being groped just because I was in a wh eelchair, but I couldn't speak up for myself. I felt powerless in the presence of these giants who could treat me anyway they chose.

By the time we get to New Orleans, I am stressed out, sore, and very tired. I am also very snippy and argumentative with Adrienne. The first thing I did when we get to the room was flop down and take a nap.

We stayed in the hotel where Gerontological Society of America was having its conference. The hotel room had a walk in shower with a bench for me to sit on and the closet had a set of lower bars that were reachable from my chair.

I was amazed at how parsimonious the Hilton was with amenities. One would expect that for $200 a night, the Internet would be free and there would be a continental breakfast. The only free amenities were the towels and and one cup of coffee from the in room coffee maker.

This was our third trip to New Orleans. We had both been there twice before and we were happy to find it was still a fun and beautiful place. Navigating through the French Quarter was a challenge because the old sidewalks were very uneven. Luckily for me, Adrienne was there to push me when I was too tired to continue, which was often.

We forgot to bring the card reader, so I won't be able to post any pictures until we get home on Thursday.

Spoiled by living in the land of free Wi-Fi

We left New Orleans on Monday after having a great time. Adrienne and I really enjoyed each other's company while touring around the city. We will be in Mobile, Alabama until Thursday, visiting a childhood friend of hers. I can not wait to see what interesting things I discover about my sweetheart!

The hotel in NOLA (the new, short hand for New Orleans) had no free access to the Internet (or Continental Breakfast!), so I am behind in my correspondence. I had plenty of great experiences and thoughts about traveling as a handicapped that I am sorting through right now and I am sure that writing about them will help.

Monday, November 15, 2010

“Yes,” “Not now,” and “I have something better”

Monday, November 15, 2010 12:14 PM

Adrienne left for Statesboro, Georgia today for an interview at The University of Southern Georgia. As expected, this is a big deal. The position seems like a good fit for her and being invited to meet faculty is a good sign. Also an anxiety inducing one.

Naturally, there has been plenty of tension in our house because we don't know what to expect; will they offer her a place or does she have to go back to the beginning?

We started the process of preparing to leave Oxford over a year ago-Adrienne had to finish her dissertation and graduate, find a job, we had to sell the house and find new housing, etc...

Then along came the economic downturn, which made selling a house and finding a job more difficult, and my debilitating illness. Being paralyzed or so fantastically weak means that I haven't been able to be much of a partner for a lot of this. Thank Heaven for Alex, he has proven that his shoulders are wide enough.

There is a lot going on this week-Adrienne's interview, Alex and me home alone for the first time, the our trip to New Orleans (my first major trip as a non-TAB), and Alex staying behind to look after the pets. I don't know about my other house mates, but my stomach is tied up in knots.

When I question the future, I am reminded something Adrienne taught me; when we ask God for something, He has three responses, “Yes,” “Not now,” and “I have something better.”

This morning we both prayed for knowledge of His will and the strength to carry it out. That greatly simplifies and focuses things.
Monday, November 15, 2010 01:07 PM

Tuesday, November 9, 2010

Good days, bad days

Tuesday, November 9, 2010 1:26 PM

Today, I am so exhausted I can barely sit up and type.  I couldn't catch my breath in  physical therapy and cut the session short.  I also stumbled three times this morning, but no falls.

Good Days, Bad Days is the name of a book I got about dealing with chronic illness, but haven't read much of it.  What I did learn was that recovery in an uneven process, some times things will be great, sometimes not so great.

Today, I decided while waiting for my physical therapist to get my chair, is a bad day.  After over 5  of good days, I am due.  After all, how can we evaluate the good without some bad to hold up next to it?

I thought, I've had my seven years of plenty, and  now is it time for the seven years of lean?   But then I remembered that I had my lean years first, those months I spent getting weaker and weaker until I became paralyzed.

And how did I get through those dark times?  One day at a time, not worrying about the future, just concentrating on the now and leaving the details to God.

Monday, November 8, 2010


My new blog

Monday, November 8, 2010 05:07 PM

I just returned from visiting my neurologist. Things went well. The only medicine change we will make for now is to continue to reduce the prednisone, 5 milligrams every 2 weeks until I am down to 30 milligrams daily. She wants me to monitor my blood sugar closer-I might be taking too much diabetes medicine now.

I asked her about sub cutaneous IVIg, but she said she didn't know anything about it for treating CIDP. She did promise to look into it for me.

I still have some weaknesses in my hands and feet. She was impressed to see me get up and walk, but was concerned about how my feet splay out. I still don't have visible reflexes in my legs, but they have returned in my arms!

So has a lot of the sensation in my feet and hands.

Let's hear it for good news!

Monday, November 8, 2010 05:46 PM

Sunday, November 7, 2010

Friday night to Sunday morning

Sunday, November 7, 2010 01:02 PM
I have the best neighbors in the world.
I was going crazy Friday night, never a long trip for me. Luckily, my neighbor invited over to hang with her while she cleaned. And from there, the night just got better.
It was fun being with friends and meeting new people in a social situation instead of doctor's offices and the physical therapy gym. I am still blissed out with warm feelings for my neighbors and their friends who helped me get around and made me so welcome in their homes on Friday night.
And we had discussions ! I miss having discussions with people. Obviously horror films were one topic of discussion. There was music and cooking too.
It was one of those just like it used to be moments.  

I see my neurologist tomorrow. It has been three months since I saw her last.  I wonder what she will think about my progress.  It could mean a med change, hopefully less steroids!

Sunday, November 7, 2010 02:06 PM

Friday, November 5, 2010

Move along folks, nothing to see here

Friday, November 05, 2010, 2:56 PM

I had a good day at physical therapy today; I walked around the gym with just a cane and minimal assistance.  My PT followed behind me with my chair in case I needed to sit down, and there were a few moments where things got wonky, but I didn't need it.  I made it back to my starting point and sat down with a happy laugh, "Take that CIDP!"

And my grip strength is around 80 pounds, which is near normal according to The Drake Center.

I had been feeling down the last few weeks.  Maybe not down, just unenthusiastic.

I guess I just needed a win.

The physical and occupational therapists I've worked with have all done a phenomenal job; I am proof of that.

Lastly, I would like to share The Third Step Prayer I found a copy  in a Bible  I bought many years ago.  My favorite line?  "Relieve me of the bondage of self so I may better do Your will."

3:23 PM

Thursday, November 4, 2010

Too much time on my hands

Thursday, November 4, 2010 8:00 AM

The November 4th Courage to Change says this:

… but I find that the only way to have serenity is to become willing to accept the things I cannot change. Acceptance gives me choices.

Around 1:00 AM this morning, while I was trying to go to sleep I was possessed by a strange idea. Sometimes I feel my Fall Risk blog is not an appropriate place for some of the things I would like to write about. Why not create another blog just for those things?

For some reason it feels uncouth to talk about my blog on my own blog space. Question, would blogging about blogging be called metablogging? A quick Google search tells me that that is exactly what you would call it.

In my own defense I promise to be brief.

Fall Risk's scope will be limited to my recovery (recoveries), my new life, and my relationship with God as He continues to reveal Himself to me. Of course these topics are all intertwined so it is difficult to isolate them from each other.

It is a privilege to be able to share my struggles with CIDP and the miracles of recovery with so many people; my readers have been a great source of support through the darkest time in my life. And I love that we celebrate together.

The very least I can do is to keep this area focused on a few topics and stick my blatherings about monster movies, computer stuff, the busy lives of my pets, and whatever else pops into my head, someplace else. It is called What I Watched Last Night and will be a place for me to do whatever I want, which sounds pretty self indulgent.

It's good to have choices.
1:30 PM

Tuesday, November 2, 2010

Tuesday morning

Curse of the Crimson Alter
Tuesday, November 2, 2010 8:36 AM

A blessing, free time, what to do? What to do? Today is my first “day off” in over a week; I don’t have to go anywhere or do anything. And I am pretty much alone; Adrienne will be in school until five and Alex? He’ll be around, but will also be doing his own thing.  How to best spend it?

Right now I am just finishing breakfast and my delicious cup of coffee on the couch. The pets are running around, carrying on their own style of social interaction. I’ve come to realize that the majority of my most recent social interactions has been with the pets. That is because I have spent the last two days in bed, preparing for and recovering from a colonoscopy. 

After their short period of scampering around the house, all four of the pets have retreated to their neutral corners and are now sound asleep. The brown dog is on the black chair and the black dog is on the light brown sofa, both of them snoring contentedly. The felines, I imagine, have taken their places on our bed, starting their day long nap.  I've noticed that our cats really don't do much else.

I remember looking watching the kittens at the humane society once. The floor of the room was abuzz with energy as they ran around, wrestling, climbing, and playing with  toys. Then one fell asleep and  other, and a third. Eventually, like a torporific ripple across a pond, the roomful of kittens slipped into slumber.

Sleep is obviously very important to the felines. I’ve heard somewhere that cats spend 2/3 day asleep and I believe it. I’ve also discovered that sleep is very important to me.

I had a colonoscopy Monday morning then spent the rest of the day napping. For those that haven’t had a colonoscopy, I can say that the procedure is not that bad. I say it’s not that bad because they knock you out for it. One moment I was watching the milky white anesthetic flowing down my IV and into my arm, then the next it was Adrienne's smiling face, welcoming me back. The doctor could’ve attached electrodes to my body spent the previous hour laughing as I jerked and contorted for all I knew.

The most uncomfortable part of the colonoscopy was the “bowel prep.” The previous day was spent fasting and trying to drink four liters of this vile tasting, nausea inducing “colon cleanser.” Even now, two days later, thinking about it  creates a gag. I was only able to get three liters down before I decided that that would have to be enough.

Now what is 9:00 and I need to think about how I want to spend my free day. First here’s a list of things I would like to accomplish around the house this morning:
  • Clean up after breakfast
  • Load and run dish washer
  • Put away my clean laundry
  • Dust mop the bedroom floor
  • Teeth, shave and shower
  • Order medication refills
  • Set up prescription by mail
  • Enroll in a diabetes education class
  • Give Frannie her medicine and Eloise her dog treat
  • Put Netflix discs in mailbox
  • Take my morning nap?
And here’s some of the things I’d like to do for pleasure today:
  • Get out of the house!
  • Maybe go to Kofenya or some other uptown place
  • Catch up on my e-mail correspondence and blog reading
  • Talk to another human about anything other than my recovery, CIDP, and today’s elections. Or the Bengals.
Here are some of the things I really want to talk about:

I am a lifelong fan of horror movies and this past October I immersed myself in them. I watched old horror films, from the 1932 White Zombie to a slew of recent remakes of classic horror films such as the Texas Chainsaw Massacre, Nightmare on Elm Street, Dawn of the Dead, and Halloween, and some new original films like Jennifer's Body, Trick 'r Treat and House of the Devil.

I have to say that compared to the originals, these remakes were pretty tepid. The new Texas Chainsaw Massacre is nowhere  nearly as frightening or bull-goose loony as the first one. One thing missing was the totally over the top family dinner scene, where a shrieking Marilyn Burns is tied to an armchair made from real human arm’s.

Fangs of the Living Dead
I was also pleased to watch several Euro-horror films from the mid 1970s. Many of these films are pretty obscure and maybe for good reason. They all thrived on bizarre plot twists, poor acting, and incomprehensible dialogue. On the other hand they were all gorgeously filmed, featured great costumes and sets, and made excellent use of the beautiful female stars.

The Blood Drinkers

Lastly, I spent a lot of time watching a group of films by Filipino auteur Eddie Romero. These films were made in the late sixties and early seventies and most featured the word blood in the title. The best of these films is called The Bloods Drinkers and can be watched for free at Hulu.com. Beautifully shot in a mixture of color, black and white and monochrome tinted scenes, and populated with some of the most interesting villains I’ve ever seen, it reminded me of the stylish films of Jean Rollin.

My companion for most of these films has been Olivia, our black cat. She curls up in the crook of my arm and watches as my computer screen with me. I’m pretty sure she’s not actually watching the movies, but rather than moving colors on the screen. Otherwise I would give for one of my ear buds so she could listen.

This is Michael Williams and I’ve got to get back to work.

12:45 PM

This is what I have accomplished thus far:
  • Clean up after breakfast
  • Load and run the dish washer
  • Put away my clean laundry
  • Dust mop bedroom floor
  • Brush, shave and shower
  • Give Frannie her medicine and Eloise her dog treat
And I must add a new task, edit this post and clean up the voice recognition mistakes from this morning.

3:44 PM