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.

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.

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.