The less I try to make things fit into my preconceptions, the more they make sense.

Two things that people often tell me are that I have low self esteem and that I make things too hard for myself.  So, when I saw that the next group was going to be on shame and guilt, I prepared myself for a grim and fruitless struggle with my guilty conscience knowing I would never be free from the bondage of my shame.

When I think about my shame and guilt, it is through a  lens of what (I think) a healthy, normal person would have done, not someone with the disease of addiction.  That is how sneaky it is; we addicts are more comfortable seeing ourselves as mean spirited, lying, manipulating, stealing, evil minded selfish monsters than admitting we are sick people.  People who, if we were in our right minds, would never have done the messed up stuff we did while in our addiction's sway.

And it was our loved ones that got the worst of it; their love and trust was a great resource for helping feed our addictions.  But that addiction is an illness.  Instead of attacking  on a cellular level like other illnesses, addiction clouds our judgement and makes us susceptible to making bad choices.


Emotions like guilt and shame are useful only because they warn us that other people can have real consequences of our behavior. In order to stop me from hurting other people, I built a jail and lined the walls with my shame and guilt.


Our facilitator asked if, since we got clean, were we still doing shameful things?  I can honestly say that in the last 24 days, I have not. I did those shameful things because I am sick, not because I am a bad person.  I am a pretty decent fellow, capable of loving and being loved, respecting of others and worthy of their respect.

Alcoholics and addicts in recovery strive to change their behavior first, then their thinking.  Next, we are urged to "clean house" by examining our old bvehavior, especially those behaviors that affected others and making amends to them.

I have been sick for a long time, not just the last few years.  My drinking and drug use has always been irresponsible since I was 19 (the drinking age in Ohio in 1983).  One of the things that has motivated me these last 3 weeks is that I have 20 years of amends to make.

In movides and TV,when ever some goes into recovery from addiction, they immediately begin to make a series of awkward and insincere amends.  They are apologies are for their benefit only,  "I don't want you to be angry at me any longer." or their amends are simply thinly disguised resentments.

Right now, I am working to get better.  Until then, I won't be able to process and appreciate my responsibility in my actions.  Only then, will I feel worthy of asking you for forgiveness.

Until then, every day that I don't use, I get stronger and my disease gets weaker.

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.

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.

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.

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.

“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

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

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.

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.

It’s all good

Wednesday, June 16, 2010

There is really good news, like praise God for the miracle of modern science good news. The treatments are working. After the second or third day of IVIG treatment, and a week on steroids, Alex noticed that my strength was returning. I could pick up my tray table and move it off me. While transferring from the chair to the bed, legs moved. I am getting stronger every day. I just spent 20 minutes cleaning up the scraps of my lunch and putting the dishes into the dishwasher.

Here's a list of some of the things that have improved:

• Confidence with my transfers; I was never certain when my arms would give out and my body would pitch forward into space. Having confidence that I can support my upper body without having to worry about my elbows buckling makes getting from place to place a lot less scary. My legs have improved also.
  
• Feeding myself; I needed help getting the food into my mouth. Even with a special device over my fork, I couldn't hold it even with both hands.
  
• Wrist strength; I no longer hit myself in the face with my fist. I'm also better at picking things up and putting them back down.
  
• Getting dressed; I can change shirts by myself.
  
• Typing; I still rely heavily on voice recognition software for my phone and computer, but I've regained in the ability to push the keys.
  

Immediately after finishing my last IVIG treatment for the month of June, the hospital's free wheelchair accessible transportation took me to see my local physician. It was a very informative appointment. He was very helpful, taking great pains to answer our questions. For once Adrienne didn't have to position herself between the physician and the door to prevent him from leaving, a problem we often have with neurologists.

He upped my metformin, my oral diabetes medication. I am also doing daily blood tests

Starting tomorrow I'm going to begin taking Wellbutrin for depression and to quit smoking. The reason I decided to quit smoking now, or least once the Wellbutrin starts to take effect, if the IVIG does not work, my best hope will be to get into a clinical stem cell trial. Which I'm sure if I'm smoking I would automatically be disqualified from. Note to myself, is this an example of irony? I don't think so. I think it might hubris, with the consequences of my decision to smoke being greater and much quicker than I had expected them to be.

As soon as it arrives from a mail order pharmacy, I will begin taking Cellcept, an immunosuppressant. Yesterday I asked my physician if I should get my tattoo before I started taking this medication and he pointed out that my immune system has already been compromised by the steroids. No more tattoos for me.

My physician informed me that because I'm taking steroids, a surgeon would be reluctant to operate on me, any wounds will take longer to heal, and there is an increased risk of infection. I've already begun to fantasize about what fatal microbes I might be inheriting from every handshake or cough.

I still push against my own perceived fears; today the three of us took a trip to the mall and I was instantly overwhelmed. I was aware of how small the world my world had become. I felt like I was a very tiny person living in a world of magical giants. I was awestruck by the amazing things that they could do..

I used to enjoy roaming through the stores in a mall. It was a good stress relief for me. Going into a store on my own the first time was intimidating, a feeling that was exacerbated when I knocked over a pile of boxes. The hats I wanted to look at were out of my reach, but I was quickly surrounded by every available clerk in the shop. They helped me find the ones that fit me, but were reluctant to help me move my chair over to the mirror (the carpet was very thick). This became a pattern; the salespeople either pretended I wasn't there, or they mobbed me. Being ignored made me feel frustrated, but all the extra attention made me feel nervous and anxious.

The mall was a great opportunity for me to practice interacting with other people. I didn't realize how hard it had become for me to talk to a complete stranger, unless they're a medical professional. There was a giddy moment when I rolled away from my companions to check out the watch counter at a department store. Watches, I explained to the lady behind the counter, were like crystal meth to me and I was fixing to score. I had no intention of buying, but it was thrilling to put beautiful things on my arm and admire them. She practically threw a variety of beautiful watches at me.

I had forgotten how much I enjoyed looking good. I used to take pride in my personal appearance. Wearing a fashionable shirt and a clean pair of slacks gave me a sense of self satisfaction that I had grown used to and accepted as I've gotten older. I would admire my accoutrements and view them as signs of success and maturity. I gave all that up when I went back to the hospital in April. Since then, my wardrobe has consisted of shorts and T shirts.

While in the mall I faced another significant challenge; using a public restroom. Presently I am unable to do buttons and zippers. Therefore going to the bathroom requires a companion. Fortunately for me, Alex volunteered to help. He also gave me a quick Spanish lesson. He also noticed that there were special cutouts under the sinks to make them a wheelchair accessible. This was another first for me; I was able to wash my hands at a sink.

Some goals for the future:

• Buttons and zippers
  
• Sit up in bed
  
• Use my feet to move my wheelchair
  
• Turn my bedside lamp on and off
  
• …
  

My step daughter Natasha asked me to describe what my world is like. My world is very small. And what is big in my world, is tiny in hers. Despite the obstacles, I am grateful for the process I am going through because I hope to rejoin her in that big world of magic and wonder. The process of getting there will be a journey filled with miracles for me and I will praise God for each one.

Late night thoughts

Friday, June 4, 2010

Last night I had trouble sleeping so I tried listening to music. Eventually a rhythm and blues song from the 1960s by a group called The Soul Swingers, called "A Brighter Tomorrow," came on. I started to choke up as I heard the words of the chorus, "Only the strong survive/Be mighty mighty/Show appreciation/Have some inspiration/There's a brighter tomorrow." Then the next song played and then I heard Aretha Franklin singing "Somewhere over the Rainbow."

"Somewhere over the Rainbow "always moves me. Aretha Franklin manages to infuse so much longing and also hope into the way she sings the lyrics. Why can't she leave her dreary present for golden future? If mere birds can do it, why can't she fly away to her brighter tomorrow?

"I don't want to be brave. I don't want to be brave," I began to repeat over and over again. I was being crushed in my bed. I was trying to be good; I was trying to be positive. The harder I tried to be positive, the worse things became.

The promise that things would fall into place once I got home was not coming true. I was getting weaker and weaker. And the news from my neurologist was far from positive.

I didn't have Guillain-Barre Syndrome, I had Chronic inflammatory demyelinating polyneuropathy. My brighter tomorrow, my rainbow had become further away. My neurologist explained that unlike Guillain-Barre Syndrome, Chronic inflammatory demyelinating polyneuropathy will require treatment for the rest of my life. Instead of recovery, I am now thinking in terms of remission and relapse.

When my hands became numb and tingly at the University of Cincinnati hospital, my attending neurologist told me that sometimes Guillain-Barre Syndrome reaches a plateau, and then dips again. As the numbness increased, and typing began more difficult, I became concerned. When I was discharged from the University of Cincinnati and went to the Drake Center, I was told that I was getting better. Not weaker.

While doing research on the Internet, Adrienne and I found the same article in a prestigious neurological magazine, comparing Guillain-Barre Syndrome symptoms with chronic inflammatory demyelinating polyneuropathy symptoms. The article's conclusion was that if symptoms were persisting, despite fluctuations after treatment, eight weeks after the initial diagnosis, physicians need to consider treating for chronic inflammatory demyelinating polyneuropathy.

My symptoms first appeared at the beginning of March, when my calves began to tingle and I could no longer go upstairs or run. Eight weeks after that was April 19, when I was at the University of Cincinnati hospital. That means that while I was in UC, they could have started treating me for chronic inflammatory demyelinating polyneuropathy.

The most common forms of treatment for chronic inflammatory demyelinating polyneuropathy are IVIG, steroids, and immune suppressors. Instead I was getting plasmapheresis and being sent to the Drake Center, a rehab hospital, where they continued to insist that I had Guillain-Barre Syndrome.

After I got home and explained this to my local doctor, he tried to get me to see a neurologist as quickly as possible. He was even willing to write a referral to the Cleveland Clinic. I wasn't sure I could handle a car trip that long, so I asked them to see if my Cincinnati neurologist would move the appointment up. She refused and my appointment remained for June 1, three weeks away. By the time I met with correct be my limiting her, 15 weeks had passed since my symptoms appeared and 13 weeks had passed since I was diagnosed with Guillain-Barre Syndrome.

By nature I am a pessimist. My mind always drifts towards the negatives. A few weeks ago while being visited by a friend; I gave a voice my biggest fear, that "these are the good old days." I am much weaker than I was at that point. I could hold a cigarette and smoke it without being afraid of dropping it in my lap. Now I only dare to smoke when someone is nearby.

In the dark, by myself, I searched for comfort. The only positive aspect my situation I could find was I could admit that I was scared.

One week later

I started taking Prednisone, a powerful steroid, last Saturday. It seems to be helping; I've had more energy and people have noticed that I have more strength and control in my arms. The downside is that I've developed steroid induced diabetes.

Soon I will start taking Cellcept, an immunosuppressant most commonly used to prevent rejection in organ transplants. If it helps to call me down my immune system, I will be able to stop taking the prednisone, which should cure my steroid induced diabetes.

Today was my first IVIG treatment. I will get one a day for the next four days than a month from now I will get another set of five. This will probably be a lifetime thing, unless a new treatment is discovered.

I can't wait to see what I'm like a month now.

I teared up again when I was wheeled into the outpatient surgery at wing at McCullough-Hyde Hospital in Oxford today. The same nurses who held my hand and prayed with Adrienne and I were there. These are the nurses that had worked so hard to help me get into the University of Cincinnati Hospital when I told them I was too sick to go home on April 12. I thought about them often and I'm so grateful to be back under their care.

This is going to be long process, and I need to be strong. I need to be inspired, and I'm talking about heavenly inspiration. I remember that the final stage that victims of a catastrophe is the stage where they redefine themselves in their new lives. The pains I felt this last week were not just physical, they were growing pains. God has a plan for me. I don't know what that it is, but I believe it will leave me a better, stronger, smarter man.

And lastly, I need to show some appreciation; Oxford is beautiful this time of year, I have a beautiful house that has been extensively remodeled to make my recovery more comfortable., I have a devoted wife and son to care for me while I can't care for myself, and I'm surrounded by a circle of friends and volunteers and professionals to help me.

And I have the gift of music to comfort me and sometimes make me realize that I have more power that I think I do. After all, birds can fly over the rainbow, why can't I?

Dark thoughts

Monday, May 3, 2010

Dark thoughts

I woke up Sunday morning in a deep depression. During the night I had come to the realization that my infirmity is going to last much longer than I thought. Recovery from Guillain Barre Syndrome is measured in months, maybe years.

Most troubling is how treacherous my body has become. The frustration of not being able to do simple things is great. So is the fear of falling. Sitting on the edge of the bed, and bending forward to touch my toes can be very exciting. I’m afraid my body will betray me further and surrender to the pull of gravity, causing me to crash to the floor.

Have you ever heard the joke about the man trapped on the roof of his house during a flood? He prays to God for salvation. Along comes a boat, then another a boat and a helicopter. Each time the man turns down their offers of help, saying that God will save him. When the man drowns and goes to Heaven he challenges God, saying “Why didn’t you help me when I prayed? “ And God replies “Help? I sent a boat, I sent a helicopter…”

Late in the evening on Saturday, I realized that I still had my shorts and my mantyhose hose on (very tight stockings I have to wear to prevent blood clots). I decided to take them off myself because I wanted to prove how independent I could be. After nearly 45 minutes all I’d succeeded in doing was getting myself tangled in my clothes. In my frustration, I muttered, “Please, Jesus!” No sooner had the words left my lips when my aide came in, asking if I needed any help.

A therapist explained to me that depression is part of the process of coming to terms with accepting the diagnosis of a severe illness or injury. There are four stages to go through. The final stage, instead of being called acceptance is redefinition or redefining. This is the stage where the patient redefines them self in terms of who they are now, not who they were.

And so I’m beginning to see that my illness is more severe than I thought. That is neither good nor bad thing. But it is something that I have to accept. However, I am still hoping for complete recovery. But as God showed me on Saturday night, He is still with me and is answering my prayers.

Writing this blog is been very helpful for me. Your feedback and responses have been even more helpful. What is also been very helpful is being in contact with other people with GBS. Curt has been a great source of support and information since I got sick. Please take a minute and check out his latest blog entry. It certainly filled me with hope today.

May is Guillain Barre Syndrome Awareness Month

What fresh and hell is this?

Wednesday, April 28

Today is my third day of therapy and my arms (and my legs and my butt) are tired. Last night was the first night I slept without a sleeping pill since I went to University Hospital on April 12.

So I am very tired. I’m also excited about the new things I’ve done. Yesterday, with the help of a machine, I was able to stand up. Not only did I stand up but I also did some exercises while standing. And this morning, I took an honest to God shower in a shower chair as part of my occupational therapy. It took me nearly 2 ½ hours to shower, get dressed, and do the rest of my morning routine. It very challenging, especially getting dressed in my chair.

I find it very hard to balance in a chair. Leaning too far frightens me. I also discovered that I don’t trust my arm strength any longer. This means that if I start to fall I might not be able to stop myself.

But I really loved taking a shower this morning. Brushing my teeth and shaving in the bathroom produced a feeling of euphoria in me. There’s a big difference in the way my face appears in the mirror when I’m sitting up and when in bed. My face is leaner, not so chubby like when I’m on my back.

In yesterday’s occupational therapy I lifted weights and threw a ball. These tasks were to increase my arm strength. And they quickly wore me out.

It is frustrating because there’s so little that I can do myself. In my heart I still feel like I should be able to walk or put my socks on. What I really want to do most is stand up and pull my pants and underwear up around my hips where they belong. I would also like to sleep on my side, touch my toes, throw something, use a toilet or sit down some where and not have to worry about how I am going to get back up.

All that stuff is beyond my reach. Doing things like adjusting my clothes or even getting dressed is difficult in bed where I’m flat on my back. Add the element of gravity by sitting me in a chair and they are almost impossible.

My greatest nemesis appears to be the bedside commode. I will not be walking when I leave the Drake Center. That means our house is going to require some modifications to make the house wheelchair accessible. Then we have to answer the question of how I’m going to clean myself and use the toilet from my wheelchair. One of the goals in front of me is to learn how to transfer from a wheelchair to a shower chair or a commode. Then I’m going to have to be able to pull my pants down. This will involve leaning. Leaning requires strength to support myself with my arms and that scares me.

In the Today’s Reminder from today’s Courage to Change, the author points out that fear is often a signal that there something we need to learn. All of this fear that I’ve been feeling today is because I have so much to learn.