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.

Take the good news where ever you find it

I survived my first day of rehabilitation at the Drake Center. It was about an hour and a half of work. They are going to build me up to a total of 3 hours a day. The good news is that all my muscles are working fine, just weak.

I also set a goal for myself; when I leave here, I want to go home, not a skilled nursing facility.

It is time to do my exercises and then get cleaned up. I wish I had the words to tell you all how much I appreciate your thoughts, prayers, and comments. You truly are making a positive difference to me and it helps me so much.

The night before my first day of rehab

Sunday April 25 2010

I’m writing this from my new room at the Drake Center. The Drake Center is a very well known hospital that specializes in physical rehabilitation. My rehabilitation will start tomorrow, and from what I understand it should be challenging. I’m looking forward to it.

Wait a minute; am I really looking forward to it? Usually I run from challenges.

Since I moved here on Friday the staff has been encouraging me to think of myself as more independent. That means I spend a lot more time thinking about moving before I start moving. I have to pick a goal, and then visualize the steps I need to go through to achieve it.

What used to be a simple job, like taking off my shorts, can take several minutes as I check my environment for obstacles, and then use my hands to position my legs. Next I undo my shorts and rock my hips back and forth while pushing the waistband, little by little, over my hips. It is challenging to negotiate the shorts over my knees and to my feet. Getting the shorts off my feet is also tricky since it again involves using my hands to reposition my legs.

Once I have the shorts off, what do I do with them? I can't put them in the laundry hamper because it's across the room. For that I will need help. Should I ask for help now? Or should I wait until later? Since the idea is to be more independent, I choose the only thing I can do by myself right now. I fold them neatly and try to toss them onto a nearby chair. Lastly, I have to figure out how to get my knees back down. I am damp with sweat and my mind is frazzled.

By the time I finished taking my bath this morning, I stank of the sweat again. I'm also proud that I was able to do as much as I did.

I was able to go to an Al-anon on meeting today (the first in a long time). I talked about my fears and was reminded that this is a process that's going to take a while. I will be working with many people who are professionals at taking people in my condition and teaching them how to live strong and independent lives.

Another thing that bothers me is my whole question about believing in God. Do I really have the faith that I think I have? Or am I alone? I worry that my faith in God has more to do with my hope that He will tell me to pick up my pallet and walk and not be the long-term relationship and that I thought it was. It is easy to look back on something and say “Faith carried me through that.” But to look ahead and say “Faith will carry me through this” is scary.

A friend came to visit me this weekend and I confessed my doubts to her. She was quick to point out that this whole experience will radically change my relationship with God. I told her that she is a good friend. Especially now, when I am so needy.

Is being needy part of God’s plan for me to break me from this illusion of self reliance I have been cultivating all my life? People have told me that I’m a perfectionist. Often, if I can’t do something perfectly; I will not try. But now I don’t have that option. I have to go out and be imperfect and I am afraid I cannot do it by myself.

New developments

Wednesday, April 21, 2010.

Things seem to be moving forward. I had my fourth plasmapheresis treatment today and I will have my fifth one tomorrow. Friday they will take out my catheter and I will be ready to move to the next phase of my recovery; going to inpatient rehabilitation at the Drake Center.

Alex arrived last night. Adrienne and I are glad to see him, we’re touched by his willingness to come back to Ohio and help out during the next few weeks. His willingness to come back is a great blessing to me.

The last two days have been very exciting for me. Working with the physical therapy and occupational therapy departments at the hospital, I have attempted to do things that I haven’t been able to do for weeks like putting on a pair of shorts or sitting on the toilet. I have been able to get in and out of bed.

A month ago, I was doing all of those things on my own. As scary as it is that think about how fast I declined, it is even scarier to think about how hard it will be to climb back up again. As long as I kept my mind occupied, it was easy to lie in bed. But now comes a part of my recovery where I’m going to actually have to physically work to make gains. The road ahead appears to be very steep, very rocky and fraught with potholes.

I got a glimpse of how challenging this is going to be today. Transferring to the commode from my chair, I became scared. I felt nauseated and I could feel my heart beat faster. It hurt to sit up and I forgot to use the rails to support myself. While moving back to my wheelchair, the board I was using for the transition shifted and I was afraid I was going to fall. The occupational therapist was right there and she had me tethered.

In my copy of Courage to Change I’ve written some definitions of the word fear:

Face Everything and Recover,
Fake Evidence Appearing Real,
and the newest one, Future Events Are Not Real.

I write this blog to help me process these things. It is helpful to be reminded that I am not alone, there is a power greater than me that will see me through today.

It is now Friday morning. The last few days have been crazy.I am very grateful to the staff here at University Hospital. I feel they have got me started on the right path. I don’t know when I will be able to write again. Please wish me well and continue to hold Adrienne and me in your prayers/thoughts.

Acceptance and Hope

The doctors haven’t seen much improvement in my strength level. On the other hand I don't seem to be getting weaker anymore. If I don't start showing improvement, the doctors will put me on immune suppressing steroids or chemotherapy.

I had my third plasmapheresis treatment today. My neurologist told me that sometimes Guillain-Barre Syndrome returns after the initial treatment. He believes this may be the case, although as always he is guarded.

This could be really good news because of all the possible diagnoses that I could have, Guillain Barre Syndrome is the most recoverable.Have it once, get physical therapy, continue life as before. He also was quick to point out that if it return later, such as the next year or ten years, it is not Guillain Barre.

The next step would be to go to a rehabilitation hospital, like nearby Drake Center. That might happen by this Friday. At Drake they would teach me to take care of myself. I understand that there is a doctor there who specializes in neuromuscular rehabilitation and he seems well respected by the neurologists here. While the thought of being permanently disabled is scary, when I think about what my physical therapy could be like, I get weak in the knees and feel a little nauseous. The physical therapist I have been working with here used the term "gruesome" to describe it.

However, weather is beautiful today and I was able to get into the wheelchair and go outside for an hour. The sun was glorious. Adrienne and I felt freed enough to talk about the future. It’s hard to think about the future because the present is so uncertain. What do I have? Am I getting better? Is the plasmapheresis working? There’s so little that we know for sure.

I know that I am supposed to live my life one day at a time. But what do I do when I have to think about the future? This weekend I had a very interesting discussion about acceptance and hope with mys sponsor. Acceptance is about the now. Sometimes it is called "being in the moment." The moment is not always pleasant, such as when there is an unpleasant but irrefutable truth to be faced.

Hope is for the future. It is the opposite of acceptance because instead of grappling with something I can't avoid, I can close my eyes and pray about what I want.

When I experience hope, I am giving myself permission to look at things I can’t control and ask for the best outcome. I usually fret about the future and waste plenty of energy on worry. The trap for me is to remember that just because I don’t know what the future holds, it doesn’t mean that has to be bad. I need to leave room in my heart for hope that tomorrow will be better than today. I also need to remember that today may not be the day I had hoped for but it is the only day I’ve been given and it too will pass.

Monday, April 18, 2010.

Pantless in Cincinnati

Friday April 16

I have been in the neurology ward at the University of Cincinnati since Monday night. Most of that time I have been bed bound, but yesterday I was able to get out and into wheelchair for a while.

My brother Jim came down from Norwalk to visit. It was great to see him. I was worried about having company, but I think we both really enjoyed having spending time with each other.

Today I will be getting my second plasmapheresis treatment. Plasmapheresis is when they take the blood out of my body, separate the blood from the plasma by centrifuge and return the blood. It’s a long process; it takes about 2 hours to complete. My first treatment totally wiped me out. I don’t remember the rest of the day.

The doctors planned to give made five of these treatments. I need to wait at least 24 hours between each treatment to allow my body to replace the plasma that was removed. The doctor pointed out that there’s no way of telling this early if I’m responding to treatment. There are other options for me if this isn’t going to work. We will reevaluate on Monday. Maybe I will be stronger and even able to roll over on my own again (or sit up or put on pants…)

If the aphaeresis works, then I will go to an in-patient rehab facility. There is a very good one affiliated with UHC that works with neuromuscular rehabilitation.

Pants will no longer be worn in the next phase of my life

I am officially announcing that as of Monday, April 12, I have stopped wearing pants. This is not due to a newly adapted, bohemian life style nor am I not fleeing my bourgeois existence for a new life of decadence and hedonism.

For the next phase of my life, pants are going to be a hindrance. Also, certain notions about privacy and bodily functions are being cast aside (I won.t be sharing them here). At this point in my life, I can no longer put them on or take them off without assistance and effort.

When I couldn't walk without a cane, I thought, "I can live with this."

When I couldn't get up without a walker, I thought, "I can live with this."

When I became wheelchair bound, I thought, "I can live with this."

When I couldn't sit up on my own, I thought "I don't want to live like this anymore.:

I am back in the hospital. This time it is University Hospital, at the University of Cincinnati. They are still flummoxed by what might be the problem, but I feel better for being here, pantless in my big chair.

Little things mean a lot

It is truth telling time. I love all your support-the encouraging words, the prayers, the meals, coming over to put new ink in my printer, everything. This is hard. My body has turned against me, mutiny on the cellular level.

Late nights are particularly hard lately. I woke up last night to find my legs tangled in the blankets, hanging off the edge of the bed. I thought I was going to fall. If it hadn't been for the blankets, I would have fallen. The most horrible part was my inability to pull myself back into bed. I had to wake up Adrienne for help.

Sleep is becoming harder due to my increased discomfort. Rolling over is a real challenge, requiring me to wake up, repositioning my legs with my hands then work my upper body to a new position. Standing up is also getting harder. It has been days since I did it on my own. Adrienne has been helping me transition from chair to bed and that has taken a toll on my shoulder. This morning, trying to get from the chair back into bed, I screamed "It's too hard!" and started sobbing. Adrienne leaned over me and smoothed my face with her hands until I stopped.

These are just some of the things that occupy the forefront of my mind. Sometimes, I catch myself thinking about the future. Will I ever walk again? Will my sickness progress? Where is the money going to come from to pay for this? Am I ever going to drive my VW bug again? Or is it something left over from my old life?

But thanks to a woman named Dana from a local medical supply company, I now have a wheel chair that I can get into and out of from the side, meaning I no longer have to stand up when transitioning. She also brought a special board that I can sit on and slide from one thing to another. This is a huge relief for me. I was able to go outside in thewarm sun and visit with the neighbors, watch the kids play, bum a smoke...

The Best show I ever saw

July 4, 2006. We had left our jobs and home in Vermont, sold everything we could and drove to Oxford, Ohio to start the next phase of our life. We bought a cute little house on Jacqueline Drive, a short distance from the campus of Miami University. This was so Adrienne could be close to her classes and office as she began working on her PhD in Gerontology. One of the biggest reasons I love Adrienne is her ability to make a plan and see it through. Getting a PhD was a goal she had set for herself over a quarter of a century ago and at last, she was ready to start.

She also wanted me to come with her. Since I can't make a plan beyond what I am going to eat next, I just said, "Sure."

That fall, at the Tall Stacks Festival on Cincinnati's river front, we went to see The Blind Boys of Alabama. The Blind Boys are the real deal-they began singing gospel music together before Word War II and have performed all over the world. HBO used their version of Tom Wait's song "Down in the Hole" as the theme song to the show "The Wire" for the first 2 seasons. I am proud to say that I am a fan. I did not expect that going to see them in concert would be a life changing event.

The show amazingly high energy. With their harsh as nails voices, they sang many of my favorite songs. The Blind Boys have worked with some of my favorite artists and totally embrace contemporary, secular artists. They didn't sing any secular songs though.These guys, some of them in the 90's, rocked with fire and fury that had to be seen to be believed. At one point, Jimmy Carter, founding member, singing gospel since 1939, actually left the stage and ran into the audience (of course, lead by his guides). He praised God for bringing him to Cincinnati to sing about the Lord, and then he told the audience, "Once God opens a door for you, nothing in the universe can stop you from going through it!" and he was there as proof for us to see how amazing God is.

At the hospital, getting ready form my 7th IVIg treatment, I was surrounded by a group of nurses who were praying for me. They came up before my treatment started and asked if I minded them praying with me. As we were praying, I remembered Jimmy Carter, standing out there on the lawn, praising God.

Candy, one of the nurses who prayed with me, reminded me that life if a journey with twists and turns and this was just a bump on my journey. It wouldn't last forever.

Our pastor was just here and his parting words to us were to remember the words "Right Now." As in, "right now is a good moment." or "I can't do this right now."

Every time you have called me or sent me some scripture to read or told me you are praying for me, you have given me one of these moments, "Right now, I am not alone."

Newest Developments

Today is Monday, April 5th. This is going to be a hard one to write; It seems that my Guillain-Barre was not as simple to treat as we thought. I noticed I have been getting weaker. I noticed it because 1) it has been getting harder to stand up and 2) I am falling down. Then today, 'in physical therapy, I couldn"t do many of the exercises I did on Friday, 2 days ago. That is a pretty dramatic change.

We just got back from visiting a neurologist in Cincinnati. His diagnosis is that my muscles are still fine, although weak, but something is again preventing the nerves from sending the messages. He suggested I resume IVIg treatments and get back with him in 3 weeks. He now believes that what I have is chronic, not acute. I had to ask for clarity-chronic means long term.

I have traded my cane for a walker (and made a few other accommodations) and now I am waiting to hear from the hospital about resuming my IVIg.

I am scared. This seems like it could be a big deal. I was scared before-every time I had to stand up. Now I am just plain scared.

Evidently, what I have is known as CIDP. That stands for Chronic Inflammatory Demyelinating Polyneuropathy. At this point we are not sure what that means exactly for me. The mechanism is the same; my body's immune system is again attacking my nerves. Returning to the life I had a month ago seems to be farther away now. The doctor suggested I begin to think about a life where wheel cahirs and motorized carts were part of my life to help me travel, work, etc. The thought of having that sort of life is totally alien to me. I recoil in denial, "I'm not that guy!"

And yet, I could be. I wish I knew what waiting for me, but I realize that would probably be a waisted wish. CIDP has many different forms. In fact, it wouldn't be unheard of to have a totally unique form that no one else has. A quick look on the Internet showed me many different varieties. It could go away on its own or deepen inside me, causing many different sorts of treatments.

It is now 7 am on Tuesday. I just have this day. Please God, take away my fear and allow me to do Your will today.

Good Friday

Warm weather is here! I've been trying to get outside as much as possible to enjoy the sunshine. Adrienne and I went to one of my favorite places the other day, the local coffee shop. It was great to sit outside and watch the people walk up and down the street. I hope to get back there soon.

I had my first physical therapy session doing exercises yesterday . The therapist said we need to improve my strength before going on to work on my balance. I worked hard yesterday and I am very sore today. But it is the good kind of sore, like after a work out. Unfortunately, it has also made it more difficult for me to move around.

I started to take a walk this morning, but barely made it past the edge of the driveway before I had to turn back. While standing there, watching the birds fly up and down the street, I remembered something Jesus had said; "Behold the birds of the heaven, that they sow not, neither do they reap, nor gather into barns; and your heavenly Father feedeth them. Are not ye of much more value then they?" Mathew 6:26. Thank you, Lord.

I was raised in a religious home and had always felt that faith was part of my life. But when I left home to got o school, I began to feel that my faith limited me. Eventually, there came a time when I decided that my faith was holding me back and making me unhappy. To be honest, at that point in my life, I was more interested in worldly things. One angry morning, I decided that it would be better for me if I cast the religious part of my life away and applied my attention on the here and now.

I was very bitter and self destructive. My life didn't go well and I became angrier. For many years, I was certain that there was no loving God. God was a tool created by other men to control more men by making us feel inadequate and lost.

I started going to church with Adrienne and the kids when we were dating. I liked the church she was going to in Putney, Vermont. Maybe I missed church and God. I know that it felt good to sing the songs of praise again and to hear the Bible being read. It was also good to find fellowship with other people. It there that I heard God speak to me. At last, I was ready to listen to him.

It was during an Easter service. As the pastor spoke about Jesus and His resurrection, we all chanted, "He is Risen." Through all my turmoil, His voice promised to be with me, reminding me that He was caring for me. Every time I said those three words, I felt His presence growing. Not only was Jesus alive, but He was with me and in me. He promised to take care of me and never to leave me alone, if I let Him. And now, 15 years later, He has kept that promise every day.