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.
Wednesday, March 31, 2010
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.
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
Sunday, March 28, 2010
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.
My goals for today:
Shower and shave
Get PT organized
Make a schedule
Call the folks at work
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.
- My wife, Adrienne-she has been with me since this started, coming to the hosp
ital 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. - 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
- 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.
- 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.
- 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.
- 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.
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.
Saturday, March 27, 2010
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.
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.
Friday, March 26, 2010
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.
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.
Thursday, March 25, 2010
Perspective
When I stop living in the moment, I lose perspective. Things that are very far away seem close and tiny things appear to be huge. Then it is easy to get over whelmed and start feeling hopeless and depressed, etc.
I sent an email to my friend Duane about the indignities of being in the hospital, expecting him to commiserate with me. He was in the hospital last weekend dealing with his own health issues. Here is part of what he wrote back:
“The funny thing about being in the hospital is that it is so easy to think that whatever is happening to you is the worst thing ever until you hear the guy next to you working on his will with his wife because the doctors aren't sure if he will survive the brain surgery to remove the tumor that has returned.”
His reply reminded me that I was letting little things get in my way instead of placing them in their proper perspective. By focusing on the little things, I was neglecting what really important.
One of the first things I learned in Ala-non is to be gentle with myself. Making mistakes is inevitable. Berating myself for making them is not. Living is about discovery. In order to discover things, I need to be actively involved in life. And that means that sometimes I will start down a a wrong path before discovering the right one.
I had forgotten that my prognosis is good-all the doctors have told me to expect a complete recovery. What I was experiencing was necessary to achieve that goal.
Courage to Change reminds me to take it “one task, one step, one day at a time.” By focusing on getting through the moments instead of wishing they weren't happening, I get closer to where I am going. To get through those difficult moments, I have my Higher Power and the tools of He has given me.
Photo Credit
Wednesday, March 24, 2010
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.
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.
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