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...

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

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

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

Spotlight: Flu Vaccines and Neurological Problems | Philosophers stone

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?

Forever

Monday, May 24, 2010

Yesterday, Sunday, was the first time I have felt normal since I returned from the hospital. I went to church, visited with friends, ate restaurant food, and just had a really good time. I didn't realize how oppressed I was feeling by my stay in the hospital. Feeling normal is the exception for now.

I've been home from Drake Hospital for over a week. It is been over a month since my last plasmapheresis treatment. Despite my ongoing physical therapy and occupational therapy, I'm still getting weaker. My arms and hands are growing less reliable everyday. Picking up or holding objects like my toothbrush or my cell phone is becoming increasingly difficult. My arms' range of motion is smaller every day.

I am becoming convinced that I have Chronic Inflammatory Demyelinating Polyneuropathy. Chronic Inflammatory DemyelinatingPolyneuropathy, or CIDP, is related to Guillain-Barre Syndrome. Both illnesses present in very similar ways; they are auto immune illnesses that attack the nerves, starting at the lower extremities and working up. CIDP requires additional treatment. Often steroids are prescribed, along with ongoing IVIG treatments (IVIG treatments are also very expensive. The ones I had a Jewish Hospital were over $10,000 apiece). Steroids are powerful, anti inflammatory medications that have very serious side effects.

It is now Wednesday. It's been taking me awhile to write this entry. I decided to start writing as a way of helping me deal with the changes that are happening in my life. However, life at home is pretty busy and loud. It is hard to find a quiet space work where I can set up my computer to dictate to during the day. Plus I am receiving occupational and physical therapy at home now. Add to that the 1 to 2 hours a day I spend doing exercises plus the 2 hours it takes to get out of bed and eat breakfast, that leaves not a lot of time to write.

I put my blog online and shared it with other people because I thought it would be a good way to keep other people informed. I quickly realized that to people who commented were keeping my spirits high. Your words of encouragement mean so much to me.

The most amazing thing that has happened since I got sick is the support Adrienne and I have received from other people. It really has been a blessing. I was trying to illustrate that by describing something that happened to me in church on Sunday, but I'm not sure I was able to get the point across. So I decided to address you, my dear readers, directly and tell you that no words could express our gratitude. Special gratitude for those who didn't just call or send a card, but came and worked to get the house ready, brought over a meal, dropped by to do errands, and donating items that we need. Is truly been an unexpected blessing. Every gesture, small or large, was its own miracle. Your efforts have been the voice of God reassuring me that I'm not alone.

Yesterday in church we sang Michael W Smith's Forever. The chorus assures us, "Forever God is faithful, forever God is strong, forever God is with us." I felt tears well up in my eyes. I didn't know if the words were assuring me or mocking me. I was feeling very scared because I knew I was not getting better. I could feel myself shrinking into this body size to prison, with no idea how long my sentence will be. Fears about my future overpowered me. Despair about my present shape pushed me further down.

How much lower, I wondered, do I have to go before this turns around? All I want is my life back. I miss being strong. I miss being independent. I miss being able to stand up.

During the Passing of The Peace, the congregation walks around the sanctuary and greets each other with a hand shake, wishing the peace of Christ on each other. I would always make sure to greet the people who couldn't walk. Today people came to me to remind me that I am part of the body of Christ and worthy of His love. They shook my hands and touched my shoulder, and said that they were praying for me.

God has not abandoned me. He has brought me to a place where I can see Him more clearly than ever. That was in the faces of those who shook my hands, touched my shoulder and told me that they were praying for me. This was God being faithful and strong with me.

I don't know what my future holds. I may never walk again or spend the rest of my life taking powerful drugs that will affect the way I look and feel and behave. Or, through lots of hard work, therapy, and patience, I will be restored. Only time will tell. The important thing and hard thing for me to remember is that I am OK, and I will continue to be OK.

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

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.

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.

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.

Chronology #2-Saturday in the hospital

After three hours of sleep (once I got my ibuprofen at around 4 am), I was awakened early Saturday morning by the phlebotomist coming to take blood, the patient care assistant who was taking my vitals and the nurse who was there to do the neurological check up. Picture me being drained of blood in one arm, the other arm occupied with "The Crusher,"my nickname for the machine they used to get blood pressure, and sticking my tongue out at the nurse.

All of this intense attention this early in the morning was making me start to feel I might be sicker than I thought. The blood tests were to check for other illnesses that might be present, and the vital signs and neurological monitoring were to make sure that the Guillain-Barre Syndrome wasn't progressing beyond my extremities. I learned these things on my own, doing research on the Internet. At this point, no one had discussed with me what Guillain-Barre was or how they were going to determine if that was what it really was.

I decided not to order breakfast because I had been told my MRI would be first thing in the morning. Adrienne showed up early with a cane, toiletries, some sweats, pajamas and other clothes and my favorite bathrobe. I was able to get permission from the doctor, by way of the nurse, to take a shower as long as Adrienne was in the room. Taking the telemetry machine off was really painful.

After my shower, and dressed in my own clothes with the telemetry machine reattached (I suggested leaving it off since my MRI was going to happen soon and they would just have to take it off again), I went for a walk in my bathrobe and with my cane to the nurse's station down the hall.

I asked the first person who made eye contact with me if they could find out when my MRI was going to happen, because I was going to see a neurologist that afternoon and I was certain he would want to look at the result. No, I'll just wait here and read the bulletin board while you call, thanks. I didn't really say the last part out loud, but I wasn't going to leave her line of sight until I found something out.

What I found out was emergency room patients go to the bottom of the MRI list on weekends, not the top. They would send for me in the afternoon, after the regularly scheduled MRIs where complete. I returned to my room and ordered breakfast.

Shortly after that, the first neurologist came in and examined me. I stayed in bed and he poked me with a pin, scratched my skin on my legs, and tickled the bottom of my feet. He also hit me with a rubber hammer and pronounced my reflexes as "dead." Then we talked about Guillain-Barre Syndrome, the mostly likely cause of my illness.

In view of the diagnosis he had just delivered, it was easy to forget that he was the first doctor I had spoken to after being in the hospital for 21 hours (other than the ER doc). Before he came, I was ready to go on about how humiliating staying in the hospital had been: being told I couldn't get out of bed by myself, having to get a doctor’s written permission to take a shower and peeing in a “hat” (to monitor fluid output) to name a few. But now I had something else to think about.

The neurologists are pretty certain that I have an atypical type of Guillain Barre Syndrome. GBS is an auto immune disease. That means that my body is attacking itself. Specifically, attacking the nerves in my extremities. Wikipedia says that it is the one of the most common, non-trauma induced form of paralysis. I think that what makes my case atypical is the slow rate of the progression. My symptoms progressed over a period of weeks, not hours or days.

Usually, GBS presents itself two weeks after a cold or flu like infection. The body has over reacted to the infection and begun to attack the sheaths that protect the nerves, starting in the extremities and working its way up the body. Facial paralysis can ensue. Also, heart and lung muscles can be affected, which was why I was constantly monitored by the telemetry machine.

Before they begin the treatment, I still need to have an MRI (the Waiting for Godot of medical treatments. It seems every time they say I’m getting one, they do nothing!) and another test called an EMG.

This neurologist felt my treatment would be Plasmapheresis. That is, they would remove my blood, separate the plasma and replace it with donor plasma. This treatment would take 10 days.

I got my MRI later that afternoon. Neurologist #1 had ordered additional scans. Since I was going to be in there for about an hour, they offered my something for anxiety, which I gratefully took. Since an MRI (or Magnetic resonance imaging) would involve me being inside a coffin like tight space, being as still as possible for the duration, I figured being relaxed would be better. I slept through the entire process. So much for being alert during the MRI.

Up until this week, GBS was one of those illnesses that the doctors on House become convinced the weekly case has; until they try treatment, when a new symptom appears. I hoped the doctors at Jewish Hospital in Cincinnati were better than the ones on television.

One week out of the hospital

Yay! It has been a week since I got home from Jewish Hospital. It is (still) great to be home.

I had my first physical therapy session yesterday. We developed a base line, which the therapist said is pretty bad. I don't remember exactly what he said because things were very woozy and I felt nauseous.

He gave me a list of seven exercises and 2 stretches to do twice a day, building up the number of repetitions as I am able. I did them last night and this morning and while they didn't kill me, I am not sure they are making me stronger. Time will tell.

Yesterday is also the first day I didn't take my pain medications until bed time. I felt I needed them then. The doctor at Indian Creek gave me three prescriptions: Meloxicam, an anti-inflammatory pill that I take once a day, Neurontin, a medicine for nerve pain that I am supposed to take twice a day, but didn't take it until last night and Dilaudid, to take for pain as needed.

I didn't take the pain pills until I went to bed because I don't like the way they make me feel. Taking a long nap in the afternoon made me feel better, more refreshed.

After my exercises, I was in pain. I took some Ibuprofen, then an hour later, still in pain, I took a Neurontin. Two hours later, I took the Dilaudid. That knocked me out for the rest of the night.

Eloise and Thor share a sunny spot on the carpet

Good things about being home #2

I went to my first Ala-non meeting in 2 weeks last Saturday. It was good to be with a group of people talking about spiritual recovery. However, getting to the meeting was a little scary.

The room was on the second floor; these were the first stairs I had climbed in weeks. When I made it to the top, the door was locked. I sat down on the step and called down for someone to come open the door. When the door was open, I found out I couldn't stand up! In a moment I experienced many emotions, fear, frustration, embarrassment. Some brought me a chair I could use to pull myself up. Everything was alright, there was a nice little group and the meeting was good.

Later that night I fell while letting out the dogs. It was the damnedest thing; I was going out to the back yard, stepping down from the garage to the patio and my leg turned into a rubber band. I wasn't hurt, but I couldn't get up. I was outside and alone. Adrienne was in the house asleep and there were no lights on at the neighbors. Fortunately there was a chair to help me get back on my feet.

Sunday I was sore, Especially my shoulders from pulling myself up. This reminded my that there is something new in my life right now-risk of falling. Once again, I experienced what I felt while on the floor of the Ala-non meeting: Anger, fear, embarrassment, plus plenty of self pity.

I brooded over my circumstances for most of the day, hoping to see myself through to the other side. But the harder I tried to change things, the more hopeless I felt. Then I remembered that feelings are only feelings and I very little power over them, they just are like stars in the sky or gravity. I feel ___________ and I will feel that way until I stop. What I can change is how much power I give them over me. When brooding over them didn't help, looking someplace seemed the only thing left.

So I decided to make a gratitude list.

1. My wife, Adrienne-she has been with me since this started, coming to the hospital everyday while I was there, helping me through the difficult times I had there. She has also changed her schedule around so she can be with me during this recovery time. That includes putting off a very important trip she needs to make for her dissertation. Also, she is consistently cheerful and patient with me. Her compassion and reassurance are two huge gifts that she is giving to me every day, all day long. She also helps me keep my perspective. I could never repay her for all this care. I am blessed to have her. Plus she looks really cute today.
2. Family, friends and neighbors that are always available to cheer me up and encourage me. Especially our next door neighbors, who have unselfishly helped out when ever we've asked for help. Thank you Mike and Emily. Also Alex, my son, who was a big help at home while I was in the hospital. And I can't forget Natasha and Mercedes, my daughter and grand daughter
   
3. Friends from the program who have been checking in on me, giving me rides when I need them to meetings, bringing food so Adrienne doesn't have to worry about shopping or cooking. They also have been helping to keep me grounded and living in the moment. I am prone to falling into despair and self pity and with out them, I would be spending a lot more time in that black hole.
4. A reliable Internet connection so I can keep in contact with people far away, including other people with Guillain Barre Syndrome who also share their stories. I also want to add Facebook, Skype, and the Google. They have all been useful in different ways.
5. The doctors and nurses at Jewish Hospital, McCullough-Hyde Hospital, and Indian Creek Family Medicine. Thanks for curing me and aiding my physical recovery. Special thanks to Dr. Phlum for getting me diagnosed and into treatment.
6. I am grateful to you for reading my blog. Contrary to what I may write here, I am not all yippy skippy, hurray. Writing this blog helps to keep me grounded and hearing from readers encourages me to keep writing. It is good therapy.

My goals for today:
Shower and shave
Get PT organized
Make a schedule
Call the folks at work

Chronology #1- How I ended up in Jewish Hospital

I decided to write about my symptoms and treatment in case anyone is interested in Guillain Barre Syndrome. My hope is to communicate with other people who have had it. This first part is about how I came to be in the hospital.

I went to a doctor in Cincinnati the Wednesday before we were supposed to go on vacation because the pain in my legs had become unbearable and I was worried about traveling in that condition. I expected some pain pills, maybe some exercises to stretch the muscles and told to use heat or see a physical therapist. The last thing I expected was to end up in the hospital with an illness I only heard about from watching House on television.

The pain had started in my shoulders in December and had moved into my legs, especially the calves. Thanks to a chiropractor, my shoulders were getting better, but my legs were getting weaker. I couldn't run any longer, it hurt to go up stairs or put on my shoes and socks. Then, around the beginning of March, my calves started to hurt all the time. It was like having shin splints, except it had been weeks since I had been able to run.

I still thought it was part of my back and shoulder problems-I must have been putting strain on my legs because of the pain, I reasoned. On Wednesday, March 16th, the pain was so bad I made an appoint with a doctor near where I work. The Physician's assistant looked me over, head my symptoms and ordered X-Rays and some blood work. I understood the X-Rays, but what was the blood work for? I went back to her office after the labs were done and asked her to explain why to me. The progressive nature of my weakness made her think it might be more than strain. The blood work was to see if I had a chronic illness such as cancer or muscular dystrophy.

I heard from Dr. Phlum on Thursday; there were no bulging discs or indicators for cancer or muscular dystrophy. He was going to try to arrange a visit with a neurologist for me. That was going to be their Friday morning priority.

When I told him we were leaving first thing Tuesday morning for vacation, he said, "You might want to change your plans."

His office called me the next day and told me that there were no open neurology appointments until May, so I should go to a local emergency room and have them call him. The closest was Jewish Hospital, just a few minutes from where I work.

That was Friday, March 21. I got to the emergency room at Jewish hospital at around 3pm.

At 5 o'clock, they did a spinal tap on me in radiology. It was a little uncomfortable, but the neat thing was I could watch the needle go into my spine on the monitor. They wouldn't let me have a copy of it. The result was elevated protein count (400, ten times greater than normal) that indicated Guillain-Barre Syndrome.

They ordered a MRI, a consult with a neurologist and admitted me to the hospital. During this process, they slipped a tube in my arm and a bracelet on my wrist that said "Fall Risk." They also put me in a room that had a bed alarm and told me I couldn't get out of it unless someone was there with me. They also hooked me up to a heart monitor. I was starting to realize this was more serious than I thought.

I spent a mostly sleepless first night in room 4308. The medication they gave me for my pain (I forget what it was) didn't work. They wouldn't give me anything to help me sleep because I needed to be alert for my MRI, which was probably going to be first thing in the morning. I took ibuprofen at home to help with the pain, but doctor, whom I not spoken to or met, would not prescribe it.

Good news I forgot about until the middle of the night

Last Saturday, in the hospital, the neurologist tested the reflexes in my legs and called them "dead." Yesterday in Oxford, when Dr. Hoke tested them, they both twitched! I was so preoccupied by obsessing on how long the recovery will take, I completely forgot that the process has already begun.

This was one of the things that came to me early this morning while I was trying to get back to sleep. Another thing that came to me was how much I am enjoying doing this. It is hard work; nothing flows. But I like what I have done so far. I also like the fact that it is not perfect, but I can press the "Publish Post" button anyway.

I figure about 95% of the time, I am letting perfectionism, procrastination, or paralysis hold me back. I have been learning that I don't have to be spot on perfect, or even 100% right in everything I do. After all, I am a work in progress, so why shouldn't my every day life reflect progress (a fourth P!). Making mistakes is a part of life, so I should embrace my errors. This way, I can reduce the chances of making the same mistake twice. My friend Jutta told me that she learned to say say "Thank you for teaching me" to her mistakes.

A friend in school once told me that if I was having trouble saying something, it might be because it isn't clear in my mind what I want to say. A lot of what I do is write things down, then go back and try to make it coherent. This is where I get a chance to really learn the lessons that I've read about or gotten from talking with others.

A last piece of good news-I made it to my first meeting in 2 weeks today.

Update from Oxford-reposted because I deleted it by accident

I just got back from visiting my local doctor. The news wasn't as awesome as I had hoped. Evidently, recovery time for nerve damage is going to take longer than I had hoped. Dr. Hoke told me that nerves repair themselves at the rate of millimetres per month and considering the size of my legs...

We decided to take his recommendations; continued time off from work and physical therapy.

I am very anxious about the extended time off from work (he thinks I should stay home until the end of April). I have classes starting soon and the ShalomPhone program requires a lot of over seeing. Plus I was about to start a video project that I was looking forward to doing.

I often tell friends and acquaintances who are undergoing physical therapy, "If it doesn't hurt, you're not doing it right." I guess there is such a thing as karma!

Anyway, "one task, one step, one day at a time." The next right thing is to post this and get the physical therapy arranged.

Good things about being home #1

The pets were glad to see me. Olivia, the maddest cat in southwest Ohio, has not let me leave her sight since I got home from Jewish Hospital on Tuesday night. Eloise, the monster dog, ran around the yard in circles, stopping to poke her head in my lap every few circuits. Then there is Frannie, our cocker spaniel; if God created anything cuter than cocker spaniels, he kept it for himself. She is almost unbearably cute, even when she snores. Many nights I've lulled myself back to sleep listening to her snuffle and wheeze in her sleep. After four nights without my her unique brand of white noise, tt was a great comfort to be able to listen to her again. Of course Thor, the Fat Bastard in feline form, just gave me his half lidded, “Oh, were you gone?” look and went about his business.

I had been in the hospital in Cincinnati for 5 days being tested and treated for Guillain-Barre Syndrome. While in the hospital, I wrote long notes about being there and what was happing to me. I posted them on facebook page and Emailed them to people who aren't part of the social network scene as a way to let friends and family know what was happening. In response, I got plenty of support and encouragement back. This helped take a lot of the fear out of the experience for me.

I have been thinking about creating my own blog instead of emailing/noting people when I write something, but I was worried that no one would read it. Adrienne, a huge support, pointed out that blogging would be good for me. As usual, she put her finger on it. All this writing was to help me process things. I had never thought that writing things down benefits me the most (although plenty of friends have pointed this out).

Since last summer, I have been praying for God to make me a better man, a better husband, father, son, Christian, etc. I don't think that my recent illness was an answer to my prayer, but I do believe that it has been a chance to learn to use some of the tools I have available.

Some of those tools have been reading my daily literature, a trusted sponsor, the fellowship and community and learning to speak for myself to others, even if it is things I don't want to be made known. And another tool has been journaling.

I never thought that journaing stuff was for me, because, you know, who wants to read my meanderings? But thanks to my wonderful wife, I realized that the most important member of the audience is me. Of course I am also the harshest critic, so I am going to stop now because this will never be perfect and I've written enough for today.