Knowledge to carry it out blues

Tuesday, December 28, 2010 10:47 AM

This is the last day of 2010 and I do not intend to reflect on the year past searching for clues and encouragement to face the year ahead. 2010 was a pretty turbulent year for me and I am looking forward to seeing it disappear my rear view mirror.

Not that it was all bad; to be truthful, the good far outweighs the bad. There was plenty of change for me and change is almost always a painful experience. Anyone who has quit smoking or some other deeply ingrained behavior knows this. At least with smoking or eating, there is some sort of physical record. I can see myself cadging a cigarette from my neighbor or eating peanut butter out of the jar at midnight to know that I have not given up smoking or grazing.

Merry Christmas!

Saturday, December 25, 2010 9:15 pm

Nothing says Christmas! like a trip to the emergency room.

I am a little light headed now, it has been a busy couple of days.

It has been heart warming to hear about everyone's Christmas.  We got hit by the flu bug-me the hardest.    After a long night of vomiting and diarrhea, I woke up this morning unable to move.  Very scary!

Because of the auto-immune issue, they admitted me to the hospital.  The good news is I don't have an infection.  But wow, I have never felt as sick as I did last night and today.

It is eerie how comfortable I've gotten with the way things get done in hospitals.  What a strange year it has been.

Shaking my hips from side to side

Friday, December 17, 2010 01:58 PM

I don't remember the last time I learned to walk; after all, it was over 40 years ago. It is something I never thought I would forget, but after CIDP had it's way with my nerves and the ensuing muscle loss, here I am, a toddler at age 46. 

Moving a big body like mine upright, balanced on two small platforms requires plenty of strength and coordination. There is plenty of effort in each step.

The first step was waiting for the nerves to heal enough that they could activate the muscles, then I had to rebuild my strength.  Once I could start moving the muscles, the strength came back quickly.  

Not all the muslces are working properly yet. It is hard to keep my toes up while walking, which can trip me. I need to concentrate on flexing those muscles in my feet. And also pushing off with my foot in the graceful, heels off the floor first motion while bring my leg forward requires thought.

Next, my knees; I had to learn their rhythm for walking.   Sometimes the leg needs to be flexible, sometimes it needs to be rigid.  The knee  controls that.  I have to concentrate on which leg is straight and which leg is bent and make sure the knees are doing their part.  

The latest area has been my hips and pelvis.  My impulse is too move my hips up and down or side to side while throwing my legs in front of me.  For smooth walking, that area needs to be held level.  This give me better balance and helps support my upper body.

Typically, I can't keep up that level of concentration without something to lean on.  Otherwise I would fall forward on my moon face.

Put it all together and this is what goes on in my head for every step:  

1. I start from an upright position, both feet flat on the floor.
2. I bend at the knee of the one leg, lifting that foot, the heel to toe off the ground and swing that leg forward. I place that foot on the floor in front of me, planting it from heal to toe.
3. I push off from the trailing foot, raising it from the heal first. This pushing off allows my body to swing over the pivot point created in step two. Going up on my toes is very difficult for me to accomplish, my feet don't want to bend that way.
4. Keeping the second knee straight, I bend the knee of the first leg, planting that foot in front of me, heel first again.
5. Through out this process, I need to concentrate on keeping my hips level and my body in an upright position. Right now, my tendency is to lean my torso forward, adding to the precariousness of the process.

What do you think about while walking?

Tuesday, December 21, 2010 09:41 PM

Love and Other Drugs

The following paragraph is from my other blog, full text here.  It is a post on the movie Love and Other Drugs, I am posting it here because it deals with illness and disability.  Feel free to leave your comments here on the blog page.

"For me, it is the difference between a sign that reads “Parking for People with Disabilities,” and one that says “Handicapped Only,” as if there were some sort of apartheid between the TAB (temporarily able bodied) and the handicapped or disabled. Because of my illness, I often need help; sometimes, to accept that help I have to surrender the undisabled part of me. Maggie does not wish to be consumed by her illness and struggles to retain her personality beyond her illness."

Thursday Afternoon

Thursday, December 9, 2010 03:27 PM

I am tired again.

I have resumed taking daily naps and stopped watching late night horror movies to make sure i am getting enough rest. My daily shower/shave exhausts me so entirely that I need an extra 45 minutes to recuperate.

Exhaustion has been my constant companion since I got sick. Once I started to recuperate, I was able to do more with less energy.   

My nurse at Humana thinks it may be due to my lowered Prednisone, I have been gradually reducing my dosage from 80 milligrams down to 35 milligrams a day.  I've already gained plenty of weight because of them, reducing my activity level because I am too tired now that I am way down on them is just cruel.  

I am continuing to get stronger-my physical therapist says that my gait is getting better all the time. Today was the first day I walked into therapy without the wheelchair. It has been moved into the garage, only to be used for the most arduous trips.

Short but sweet.

Thursday, December 9, 2010 03:49 PM

If you love something, let it go to Florida

My son Alex came to Ohio this summer to help  out when I was bed ridden. He spent months caring for me, helping me exercise, helping me get in and out of the car, and so many other things the list could go on. He also took on several house hold tasks to help Adrienne. Whenever we needed him, all we had to do was ask and he was right there. Even in the middle of the night, I could call  and he would come to roll me over or reposition the pillows so I could get back to sleep.

And he did everything with a smile. His cheerful attitude and sense of humor kept our spirits up all through the summer. His love of word play would remind me that life is meant to be enjoyed, not endured.

But Alex is  a sun child; he doesn't like cold weather. Knowing this time was coming, he has been working on getting himself set up with a place in Florida. He is leaving tomorrow, first thing in the morning. We will miss having him around.  

The truth is, I will never be able to repay him for the kindness and the generosity he showed me this summer. He gave me something I could never afford or repay myself. I guess that is the best definition of “gift” I can find.

Al & me, Summer, 2010

Exercise

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.

M

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.

 

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

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.

“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

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.

Update

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

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

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

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 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

Return

Sunday, October 31, 2010, 9:04 am

 Adrienne and I decided to make a trip to Norwalk, my hometown.  We considered this  to be a "dry run" for our upcoming trip to New Orleans in November.  This was my first overnight trip since I got sick.  In fact, the last trip I took was to Norwalk, in March 2010, was right before my first hospitalization, and before I was labeled a fall risk. 

 Adrienne and I drove up to Norwalk, usually a 4 plus hour drive, on Friday afternoon.  Due the the vagaries of  Columbus traffic,  the trip took over seven hours. My hips were sore, but other than that, I was fine.  I think Adrienne, who had to do 100% of the driving, felt worse than I did.

I spent the first 18 years of my life in Norwalk and now, when I came back to it, it has become a mythological place.  Usually, I roam the the familiar landscapes, searching for something.  Driving around the streets with Adrienne, I realized that I don't know what I am looking for; is it something that I lost, or is it something that I never had, but hope to find?  

Anyway, despite the weirdness of being in Norwalk again, the visit was a success.  I survived the car trip, staying in a motel and had a great time with my family!

We visited Mom in her room at the nursing home where she has lived since Dad died in 2007.  She was in a happy mood, but not very talkative.  She looked good and had a big smile on her face.  We joked around and she laughed with us.  

Next we went to Jim and Joanne's. I was feeling pretty tired and ended up taking a nap on their couch.     I am still easily fatigued.  It was embarrassing to have this happen in front of my family.  When I woke up, I was treated to a visit  with Jennifer and Jessica, their daughters, and Jennifer's children, Clark, age 2 and Gwen, 3 months.  

Then we went to visit my sister Roni and her husband, Dick.  Due to complications from knee replacement surgery, Roni has spent the last two years in great discomfort.  She is just now beginning to move freely outside the house.  It was very exciting to see her walking pain free and without a walker.

We returned Saturday evening, tired, but elated from being with the family.  Getting to met my grand niece Gwen and seeing how far Roni has come were also causes for celebration.

1:41 pm

The Oompa Loompa's song

Sunday,, October 25, 2010. 8:34  PM

From the beginning of March, 2010 through June, I was fighting a losing battle with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). CIDP  is a chronic, progressive auto immune illness, similar to MS.  My body's immune system became hyperactive and it began attacking my nerve's protective myelin sheath.  As spring turned into summer,CIDP took my legs, my arms, my feet and my hands, leaving me paralyzed.

I didn't stand or walk at all until the end of July. Our neighbors filmed my first steps (Link here ). It was a very dramatic moment for us all.

Today, October 24th, my wife took this video of me walking through the house.

It took plenty of faith, work and support from friends, family, and the excellent physical and occupational therapists who brought me to this point.

Monday, October 25, 9:00 AM

Listening to the Dalai Lama

Thursday, October 21, 2010, 8:45 PM

From the moment he appeared on stage today at Millet Hall, Tenzin Gyatso, his Holiness the 14th Dalai Lama, radiated a powerful air of beneficence into the sold out, ten thousand seat stadium. This man, I thought, pulling myself to my feet to join in the applause, is so full of love that I can feel it. Looking around the floor, I saw this reflected in the rapturous faces of others, young and old. A woman in the aisle next to me held her white hands over her heart and fluttered them slowly like moth's wings, the smile on her face clearly sending her love back. After giving the traditional Buddhist greeting bow, he made a face and gestured for us to sit down.

Tenzin Gyatso, his Holiness the 14th Dalai Lama

During the lengthy introductory remarks, His Holiness reached into the red bag on his couch, took out a Miami University sun visor and put it on. He told the audience this helped him see them better. Speaking to darkened auditoriums was like talking to a ghost, he explained.

He told us he was tired and would stay seated throughout the afternoon. He untied his shoes and pulled his feet under him with a “let's get comfortable” gesture that suddenly made the giant space seem cozy and intimate.

His Holiness's talk was entitled “Ethics in the Modern World,” but there would not be a prepared lesson; instead he would speak from his heart. He told us that our minds are all we have and how we use them is the only choice we can make. “This guy,” I thought, “has been to Ala-non.”

The hour passed quickly. Sometimes it was difficult to hear what he was saying, which was frustrating. Even more frustrating were the times I missed what he said because I was busy trying to anchor his earlier statements in my brain so I could keep them forever.

Instead of feeling sad about what I missed, I am grateful for what I retained.

The Dalai Lama told the audience that the news media has a great responsibwhiteility; they should have long noses like an elephant to sniff out both sides of a story. Then both sides should be presented to the public. The audience laughed at his description of how the trunk could be used to reach around and get the untold side of a story.

There are many similarities between Buddhism, Christianity and Islam: Forgiveness, contentment, love, compassion are some of the ones he told us about. All the world's religions are built on the same principle; love for the Creator and creation, but their philosophies may be very different. He stressed the importance remaining true to the tenants of your faith, whether it is Buddhism, Jainism, or whatever it may be, and also respecting other's faiths.

He spoke warmly about Christianity's dedication to education and Islam's commitment to charity. Traveling throughout some of the poorest areas of Africa, he found many schools and clinics staffed by nuns in remote areas. And traveling throughout the Islamic world, he saw the rich giving to their mosques to help the poor. These things can bring people together instead of pushing them apart.

When asked about how to react to increasingly grim and violent stories in the media, he told a story about a city where five people were murdered in one year, but many people were helped daily. Which shows the true nature of humanity?

Our true nature is one of compassion, violence is an anathema to us. We react strongly to violent stories because it is the opposite of our nature. The world is full of good people, even the ones we would see as our enemies think of themselves as good. Peace could be reached if we learned to see similarities, not differences.

My experiences this summer has taught me that this is true; people always try to do what they think is right. Being in my wheelchair in the community, I am always surprised by complete stranger's willingness help me.

There was so much to be learned from what I saw today; I hope I did a fair job reporting it. Seeing His Holiness today was a great privilege for me and the rest of the audience. He tried to show us how easy we could attain peace and contentment by believing we could and appreciating our universal similarities, not fearing differences. His belief that we could have a better world by each of us making that choice was infectious. I hope I can make tomorrow a better day than today.

10/22/2010, 9:35 AM

Better all the time

In August, my neurologist began to adjust my medication, slowly backing off the steroids and reducing frequency of my IVIg infusions.

I certainly don't mind reducing the steroids; the psychosis, diabetes, and whatever else the medication is doing to me are awful. I knew I wouldn't miss spending an entire week each month at the hospital to get my infusions.

The neurologist told us to keep an eye on my symptoms.  If there were any regression, we were to let her know immediately and resume treatment at the previous levels.  The symptoms haven't returned and I am glad to have gone from 80 milligrams per day of the Prednisone to 50 a day and get my IVIg infusions once per week instead of 5 times (one a day for 5 days in a row) a month.

Today my physical therapist and my occupational therapist told me that I am continuing to get stronger!   Take that, CIDP!

Presently I am spending more time on my feet than in my chair.  I walk around the house with a cane or steady myself with what ever is handy.  Lately, I've taken to using the cane outside the house, leaving the chair at home.  When I am tired or feel like I can't trust my legs, I get back in it.  Fatigue is still a concern;  when I get tired, I am done.

Besides the fatigue, my hands and legs are coming along nicely.  The numbness and tingling in my hands is almost completely gone and the strength and dexterity are returning. I am still prettyretrurnedloo unsteady on my feet, especially while standing.  Today my physical therapist explained that standing involves constant movement from the muscles in the lower legs.  Most of the TABs (temporarily able bodied) out there are probably not aware of how hard their bodies work to keep them upright.

Today I spent some time sitting on a large ball, practicing my balance in my upper body.  It is much harder than it looks.  Luckily I had my ever vigilant PT to help keep me from falling.

My feet are my largest problem area right now.  I have to watch them constantly  while walking, otherwise I tend to drag my toes.  I could easily trip over my own feet!

I have to admit it is getting better.

Do nothing 'til you hear from me

Friday, October 8, 2010

The topic of last Wednesday's Ala-non meeting was courage, as in courage to change, the name of one of the Ala-non daily devotional books. I know quite a bit about courage, or more exactly, the lack of courage; a few years ago, I would find myself gripped by fears about the uncertainty of the future. These episodes would cripple me, occupying my mind for hours. Going to meetings, reading the literature, and working with a sponsor helped me get through this difficult period. I learned several tools that helped me then and they are helping me now to deal with my CIDP.

The first tool is courage to let things go, to trust there are many problems that I’m not supposed to solve and that this is alright. I have to recognize that others have their Higher Power, who is leading them to discovery at their own pace, not mine.

Adrienne carried an unbearable burden while I was in the hospital and bedridden at home. Knowing she was doing all this hard work to help me was terrible. But I couldn't help her. Trying to do more than I was capable was not only a failure, but dangerous. I had to trust that she would see herself through this and we would both be alright.

The next tool is the courage to make mistakes. Trying something and failing was a sign of weakness and vulnerability. Therefore, it takes courage to try new things or things that I have failed at. If I stop trying new things because I am afraid of failing, I have stopped growing. I have had plenty of failures, but through God's grace, many of those failures have already turned into victories.

Writing is a good example of this; ever since I could write, I have taken great joy in using words on paper to express and communicate. I thought I was pretty good at it until it was explained to me that I wasn't as good as I thought. I could have worked to improve my skills, but instead I didn't write a thing for many years. I thought that if I couldn't be perfect, then I would be nothing.

I started writing in the hospital to pass time and help me process what was happening. I also hoped that people close to me would read it to get information about my condition. Publishing a couple of blog posts a month isn't going to make me a great writer, but it is making me a better writer.

Lastly, the courage to say I can't do it myself-I need help. Asking for help truly is a sign of strength.

While in the Drake Center, my roommate Steve and I were talking about how it felt to one day be healthy, then the next need so much help. “It's humbling,” he told me.

Humbling is right. I survived all sorts of things I never thought I would. But I didn't have to do it alone. God surrounded me with love and protection. To all the people who brought that to me, you were emissaries of God, carrying His message and doing His work for Him.

When faced with a situation where I would have responded by using unkind words, or tried to force my solution on others, or any other of my unsuccessful strategies, I pray to my Higher Power for guidance.

I seldom get a dramatic response; 99% of the time, I don't get any discernible response at all, so I do nothing. I keep my mouth shut and wait patiently for resolution to come from a different source, and it always comes.

When people want to talk about my recovery, I have to give credit where it is due and say, “God is good all the time.”

All the time, God is good.

Tuesday, October 12, 2010

Wednesday, September 29, 2010

It has been a while since I posted anything, so I am just going to pray, then ramble. “Let the words of my mouth, and the meditation of my heart, be acceptable in your sight, O LORD, my strength, and my redeemer.” Psalm 19:14

I am back in same day surgery this week. The beds aren't as comfortable, but the nurses are awesome. These are the same nurses that held hands and prayed with Adrienne and me last spring (The Best Show I Ever Saw) and helped get me into the hospital at UC last spring. Their fierce (and fearless) witness has been a comfort and inspiration to me.

I started writing to help myself process my illness (and also to inform others).I never expected that it would become so spiritual, but I couldn't imagine how hard it would be to go through this with out my Higher Power.

I don't know what my future holds, but I am not expecting a miraculous cure. The CIDP will probably be an increasing part of my life; there is no miraculous cure in my future. There have been miracles though and more to follow! Instead of taking away my burdens, He will see me through them.  

Literal baby steps

I worry that I don't have enough computers

Saturday, September 18 ^th, 2010

I survived last week's computer loss quite well. In fact, I ended up buying a new computer. It's a used Dell netbook that I bought from our neighbors. It came loaded with Windows XP, but I also installed Ubuntu’s Net Book Remix. Typing on the small keyboard is very difficult, but I love its portability. The 10 inch screen is fairly bright and clear, making watching video pleasurable. Which is great because I spend plenty of time watching movies in bed.

The main reason I’ve been watching so much video at night is I’ve decided to stop taking the Ambien to get to sleep. Sometimes I am up until 2 or 3, sometimes I am asleep by 9. I’m not sure why I quit taking the Ambien. Maybe I’m trying to feel like my old self again; the self who didn’t take sleeping pills. Or I’d just like watching movies in the middle of the night (One evening I watched a Barbra Streisand movie and The Exorcist.  There were several similarities.). Which is something my old self did anyway.

I’m feeling a lot calmer now too. The people around me are probably relieved to see that. In my effort to rejoin the ranks of the temporarily able-bodied (the TAB), I’m spending a lot less time in the wheelchair; I would rather sit in regular furniture.

I’m experimenting with locomotion in the vertical position, also known as walking. On our last date night, we left the wheelchair at home and I used my walker. It was tiring and I was in a lot of pain later, but it felt so good!

One of my biggest challenges is relearning how to move my feet. I can lift up my leg at the knee and move my hip forward then put my leg down, but I have to concentrate on placing my foot. Otherwise it just tends to flop and drag my toes along the ground. Not very sexy.

The other big challenge is keeping my balance while I walk. I can’t stay upright and unsupported for more than a few seconds. Adrienne said that at first she thought I looked like a toddler, then she realized it was more like Frankenstein's monster. For the first time, living in a small house has an advantage. As I careen about the house on my journey, being able to reach out to a nearby wall and steady myself is a great comfort.

These journeys represent my attempts to rejoin the TAB. It’s easy to get discouraged at how short the trips are and how quickly I get tired; just walking from the office to my bedroom was cause for a brief nap. But then I remember how long a journey it has actually been, and I feel a sense of pride in myself and gratitude to the Lord.

Off Line

I'm going to be off line for the next few days while my laptop is getting fixed. My computer has been my constant companion for the last 6 months and I have been grateful for it!  


Many times,since I got sick, direct communication has been to much for me; even the phone has been a challenge.  The Internet has been a huge blessing.  Talking via chat or Email has kept me from being a total recluse.  


I've also had a chance to watch some great movies through HULU, YouTube and Netflix.


I hope it won't be too long before they get it fixed.  Until then,


Michael  

Physical therapy starts/"A cat is a lion in a jungle of small bushes."

Physical therapy starts

Today was my first physical therapy session. Last week was just an evaluation, this week I was on the machines. We spent most of the hour working on my legs and then we finished off with some balance exercises. My legs feel like they’ve been flayed and rubbed with kosher salt, but in a good way.

Once I got home I had time for lunch before a friend came by to help me set up my new shared office space with Adrienne. Yesterday another friend had come by and did all the electrical things I could not do, such as setting up my stereo and speakers in the office. He also made a computer table that fits on the arms of my chair. Today we brought my clothes in and organized my stuff. The room’s not done, but it’s good to finally have a place for my stuff.

The following is something I’ve been working on for a week and decided to post as is:

"A cat is a lion in a jungle of small bushes." *

I told my new physical therapist that sometimes I forget that I am sick. When Olivia, the better mouser of my two cats, chased one under the couch, I wanted to stand up and lift the couch so she could get at it. It was a slap in the face when to be reminded I couldn't do it. Being reminded of my disability made me feel sick to my stomach.

After I told my therapist about what a jolt it was when I came back to reality, she offered the typical panaceas that I hear whenever I suggest that my life isn't perfect. She began to tell me how important my high expectations were, that therapists appreciate having clients that work so hard to have their normal lives, etc. I stopped her and said, “You don’t need to put a positive spin on everything I say. Sometimes things just stink.”

The fact that my life does not consist of sunshine, rainbows and unicorns is not necessarily a bad thing. One of the things that Ala-non teaches is acceptance first, happiness comes later. Someone once told me that bad thoughts (or feelings) are important; how else could we evaluate the good ones?

I am proud and grateful of the gains I have made. I've had the privilege of witnessing miracles. I know that I'm a fortunate man; many people with CIDP have much harder struggles’: physically, emotionally, financially, the list could go on.

Telling my therapist it’s a bummer to be reminded that I can’t walk wasn’t my way of being discouraged, it was my way of being brave. Bravery is another component of happiness. When I lack that bravery, as I often do, my Higher Power draws me close and reminds me that I am not alone. As long as I trust Him, I will be all right.

* Source: on the web, this is attributed to an Indian proverb, but I am not sure there are lions in India and I'm too tired to double check.

Taking it to the streets

Have a happy and safe Labor Day, from someone whose every day is Labor Day. I am writing this from a booth at Kofenya, my favorite place to spend a Saturday morning.

Yesterday was my first outpatient physical therapy. My physical therapist looked at me with a fresh perspective; she doesn't see how far I've come, she sees how far I need to go. What's the advantage of being able to walk if I can only go from my living room to the bedroom?

Our plan is to work on building up my strength and endurance. She noticed that when I walk, I use my hips for most of the motion. I still don't have much activity or control from my knees down. We will work on using the muscles I have the most control over to improve my walking.

She also made it very clear that she expects me to work on these at home.I will feel I 've really earned these gains.

I had my second IVIG made into dose last week and it went very well, I spent the day watching movies. I also reduced my steroids by 5 mg this week. My physical therapist will help to monitor if my CIDP symptoms return. That is a relief.

Adrienne and I began going to the Corwin M. Nixon Aquatic Center on campus. There is a family/handicapped accessible changing room that is very spacious and equipped with grab bars. Unfortunately they did not install an automatic door opener, and I'm not sure I could open the door from the inside on my own. Being trapped is a great fear of mine.

After we get changed, we roll out to the pool and I transfer into the lift. It is easy to operate and I can use it alone. Once I get into the water I support myself by holding the wall or holding on to Adrienne.

Time to eat my breakfast.

Down by the lazy river

Monday, August 8, 2010

Adrienne and I went to swimming tonight at the fitness center on Miami's campus.

What a blast. Miami University has thoughtfully provided a chair lift that is easy to get on and off and is operated by the passenger, so I could control my own decent and ascent. In chest deep water, my legs will bear my body weight. Plus I can really swim, hold on to the wall and kick or bicycle my feet.

We walked inside the rim of the pool, sometimes I held the wall, sometimes I held Adrienne, others I was independent. When we got to the end, we smooched and went back.

The last time I was in a pool was at The Drake Center. I cried with joy because I felt almost normal. The water counter-acted the gravity that pressed me down the rest of the time. When I called them, my knees raised my feet towards my chest just like they were supposed to do.

I changed the "Overheard" box on the upper right corner of the pager, please let me know if you have any you would like to share.

End of Summer, 2010

The Miami students are back to classes and hopefully we have seen the last of this summer’s “fry an egg on the sidewalk” heat. I’ve come very far since March; I watched spring turn to summer paralyzed in a hospital bed and now I am walking around the house with a walker!

My most vivid memories of the summer are of Mercedes standing by my side, clapping her hands and chanting “Go! Grandpa go!” while I shifted my weight from the chair on and off a transfer board. Now I make my transfers by standing up and moving my feet, then sitting. I couldn’t pick her up when she arrived, but before she left, we could play airplane.

I also remember that God has also surrounded me with a loving support group and family who carried us through these hard months.

The doctors and therapists who have aiding my recovery have all been to notch.

A large chunk of my family, some of whom I haven’t seen in years, made the trip to Oxford to visit us. My brother Bob and his wife Mary Carol came to visit last week, their two oldest sons were here the week before. My Sister Neli and her husband Nate also visited. And of course my Brother Jim, who was able to stay with me for nearly a week this summer, was a tremendous blessing. Plus there have been nieces and nephews, and friends from so long ago who have dropped by, called or written.

Then there are my new friends. People like Niki and Jeannie J. who gave their time to help Adrienne and me, the friends who helped get the house ready and all the people who are carrying us in prayer.

Friends like Steve and Duane, who gave us such amazing gifts to us that we will treasure for years. I have no idea how to respond to such generosity. My brother was moved to tears when he heard about the generosity.

Last week while doing my circuit around the park a stranger who appeared to know me quite intimately stopped me to talk. He appeared to know me pretty intimately, but I couldn't place him. It was my doctor, I discovered the next week.

It turns out that I haven't really lost all the weight I thought I did. When I was at the hospital on Wednesday, my weight was 239 pounds, at 25 pound increase from two weeks ago.

I have felt pretty distracted and withdrawn for the last week. Most difficult has been day-to-day maintenance tasks such as scheduling my rides to the hospital or ordering medications. Talking on the phone or trying to make plans about the future has been exhausting. I haven’t been to an Ala-non meeting in over two weeks because I just don’t want to talk to people now. That is also why I’ve been staying off of Facebook, e-mail, or writing my blog.

I spent a lot of time in my room, watching old horror and science fiction movies on YouTube and Hulu. I just can’t get enough of movies with titles like Astro Zombies or Battle between the Planets. Many of these movies were staples of my Friday nights and Saturday afternoons in front of the television. I hope someday to write more about these movies in an informed and eloquent style like this blog, devoted entirely to films of the 1960s. The author also writes a blog for Turner Classic Movies, which I’m sure is wonderful but I haven't been able to follow it since I got sick.

I believe it is the new medications I’ve been taking to help with my steroid rage. My memory of taking anti depressants is that they made me feel disassociated. I will admit that they’re helping, but the problem has not gone away. This week I started taking a third anti depressants/mood disorder drug. Hopefully that will help before I lash out at someone who will punch me in the nose, wheelchair or not.

Other than my reticence about contact, things have gone very well. I am continuing to improve at a miraculous rate. God has been very good to me by speeding my recovery. Today I got up from a chair in the living room and walked out to the mailbox and back. Take that, CIDP!

God loves me as I am, imperfect and incomplete. I know he has a plan for me, Adrienne, and Natasha and Mercedes. It is hard not to worry about them because they are so far away.

August Update

Monday, August 16th 2010

I had my August neurology visit today on the heels of my most recent IVIG treatments. Even though the explosive improvements June and July weren't there this time, I am continuing to make good progress.

My neurologist feels it is time to switch to a maintenance treatment program:

• Instead of getting a week long IVIG course, I’m going to get one a week and see how I do.

• I’m going to continue to cut back on my prednisone, five milligrams every two weeks until I get down to 50 milligrams a day. This will help with the side effects. If I’m able to go down on the prednisone, I could go off one of my anti-depressants. While the anti-depressant helped with the steroid induced mood swings, it is had its own set of side effects.

• She is concerned about my weight loss. I’ve lost over 70 pounds since I first went into the hospital in March. I was expected to gain weight as a side effect of the medications. She suggested I try eating more.

• I’m okay with that.

• The best news of the day is that I no longer have to wear my cursed mantihose during the day. Because my legs are much more active than they have been I don’t have to wear my mantihose. She suggested I switch to knee-high mantihose, but I don’t see that happening. Because I’m not going to be wearing the thrombosis hose any longer, I need to increase the amount of activity in my lower legs. To celebrate that, while doing my evening lap tonight I spend a significant portion using my feet to propel my wheelchair. My calves are tingling, not unpleasantly. I assume the feeling is from blood being pumped through tissue that has been largely unused in recent months.

• Also to help prevent blood clots, I’m going to start taking a baby aspirin every day.

Of course the switch to maintenance is a little scary to me. My brain immediately jumped to, "What if I get sick again?" My physician said to call her immediately if I start showing any symptoms. The solution would be to go back to my five times a month IVIG treatments. Of course with CIDP, nothing is certain.

I also had my monthly physical therapy assessment this morning. My PT was properly amazed at how much progress I’ve made in a month. "Last time I saw you," she said, "you were nearly paralyzed." That was the first time anyone had used paralyzed in reference to me.

Once again my “ glass half empty” world view kept me preoccupied with how bad things could really be. That is some serious stuff, being paralyzed. The most unfortunate people are paralyzed. Is that me?

I am still getting stronger every day. Insurance is taking care of medical bills. I just got a new (hand crafted by a friend) table so I can use my computer anywhere in my wheelchair. I had lunch today in uptown Oxford, outside where I could watch the returning students.

And I didn't have to wear my mantihose.