Physical Therapy

In PT today I learned that the young, cute lil southern belle with the darling accent is really possessed by the demon Pazuzu.  I realized this as she stood over me, screaming, "Are you going to cry like a little girl?  Are you my little bitch?"  while cracking her ID lanyard like a whip.  Then she vomited green bile over me.

This is the first time I ever cried in PT.

Anniversaries

This was me, a year ago.

God is good.

I can dish it out, but can I take it if I dish it out to myself?

Thursday, February 17, 2011 

I am preparing to recognize a milestone-my symptoms first appeared early in March, 2010. Whether I am going to celebrate or curse remains to be seen.
It depends on my perspective on the events of the last twelve months. A year ago I was healthy, employed, and looking forward to vacationing with my wife; two months later I was paralyzed and totally dependent on other people for everything.

Good Days, Bad Days (You know I've had my share)

I've been listening to plenty of Led Zeppelin lately.  Not sure why.

Just so everyone knows, this is a bad day (actually, several bad days).  I am tired all the time, but can't sleep and I am in pain.  Nights are the worst.

I  have been so busy working on the physical therapy aspect of my recovery that I forgot I have a chronic illness that I know almost nothing of, especially how it manifests itself  after the initial symptoms abate. 

So I am taking it to the Internet:

Continuity of Care

Monday, January 17, 2011 09:04:24 PM

We made it to church yesterday.  I kept falling asleep; at one point Adrienne woke me up because I began to snore...

I haven't been writing much lately, not because I haven't anything to say, but because I have been too busy sleeping my life away. No matter how much sleep I get, it isn't enough. After church, I ate lunch then took a five hour nap. Then came dinner and off to bed I went.

I don't know what makes a good or bad physical or occupational therapist, but I always felt I had competent, if not excellent ones and I was fortunate to have them. And there have been plenty.  I had both kinds of therapists at University Hospital, a plethora of therapists at the Drake Center, and then throughout the summer, a succession of physical and occupational therapists came to my house.  I have had fifteen different therapists.

Shaking my hips from side to side

Friday, December 17, 2010 01:58 PM

I don't remember the last time I learned to walk; after all, it was over 40 years ago. It is something I never thought I would forget, but after CIDP had it's way with my nerves and the ensuing muscle loss, here I am, a toddler at age 46. 

Moving a big body like mine upright, balanced on two small platforms requires plenty of strength and coordination. There is plenty of effort in each step.

The first step was waiting for the nerves to heal enough that they could activate the muscles, then I had to rebuild my strength.  Once I could start moving the muscles, the strength came back quickly.  

Not all the muslces are working properly yet. It is hard to keep my toes up while walking, which can trip me. I need to concentrate on flexing those muscles in my feet. And also pushing off with my foot in the graceful, heels off the floor first motion while bring my leg forward requires thought.

Next, my knees; I had to learn their rhythm for walking.   Sometimes the leg needs to be flexible, sometimes it needs to be rigid.  The knee  controls that.  I have to concentrate on which leg is straight and which leg is bent and make sure the knees are doing their part.  

The latest area has been my hips and pelvis.  My impulse is too move my hips up and down or side to side while throwing my legs in front of me.  For smooth walking, that area needs to be held level.  This give me better balance and helps support my upper body.

Typically, I can't keep up that level of concentration without something to lean on.  Otherwise I would fall forward on my moon face.

Put it all together and this is what goes on in my head for every step:  

1. I start from an upright position, both feet flat on the floor.
2. I bend at the knee of the one leg, lifting that foot, the heel to toe off the ground and swing that leg forward. I place that foot on the floor in front of me, planting it from heal to toe.
3. I push off from the trailing foot, raising it from the heal first. This pushing off allows my body to swing over the pivot point created in step two. Going up on my toes is very difficult for me to accomplish, my feet don't want to bend that way.
4. Keeping the second knee straight, I bend the knee of the first leg, planting that foot in front of me, heel first again.
5. Through out this process, I need to concentrate on keeping my hips level and my body in an upright position. Right now, my tendency is to lean my torso forward, adding to the precariousness of the process.

What do you think about while walking?

Tuesday, December 21, 2010 09:41 PM

Good days, bad days

Tuesday, November 9, 2010 1:26 PM

Today, I am so exhausted I can barely sit up and type.  I couldn't catch my breath in  physical therapy and cut the session short.  I also stumbled three times this morning, but no falls.

Good Days, Bad Days is the name of a book I got about dealing with chronic illness, but haven't read much of it.  What I did learn was that recovery in an uneven process, some times things will be great, sometimes not so great.

Today, I decided while waiting for my physical therapist to get my chair, is a bad day.  After over 5  of good days, I am due.  After all, how can we evaluate the good without some bad to hold up next to it?

I thought, I've had my seven years of plenty, and  now is it time for the seven years of lean?   But then I remembered that I had my lean years first, those months I spent getting weaker and weaker until I became paralyzed.

And how did I get through those dark times?  One day at a time, not worrying about the future, just concentrating on the now and leaving the details to God.

Better all the time

In August, my neurologist began to adjust my medication, slowly backing off the steroids and reducing frequency of my IVIg infusions.

I certainly don't mind reducing the steroids; the psychosis, diabetes, and whatever else the medication is doing to me are awful. I knew I wouldn't miss spending an entire week each month at the hospital to get my infusions.

The neurologist told us to keep an eye on my symptoms.  If there were any regression, we were to let her know immediately and resume treatment at the previous levels.  The symptoms haven't returned and I am glad to have gone from 80 milligrams per day of the Prednisone to 50 a day and get my IVIg infusions once per week instead of 5 times (one a day for 5 days in a row) a month.

Today my physical therapist and my occupational therapist told me that I am continuing to get stronger!   Take that, CIDP!

Presently I am spending more time on my feet than in my chair.  I walk around the house with a cane or steady myself with what ever is handy.  Lately, I've taken to using the cane outside the house, leaving the chair at home.  When I am tired or feel like I can't trust my legs, I get back in it.  Fatigue is still a concern;  when I get tired, I am done.

Besides the fatigue, my hands and legs are coming along nicely.  The numbness and tingling in my hands is almost completely gone and the strength and dexterity are returning. I am still prettyretrurnedloo unsteady on my feet, especially while standing.  Today my physical therapist explained that standing involves constant movement from the muscles in the lower legs.  Most of the TABs (temporarily able bodied) out there are probably not aware of how hard their bodies work to keep them upright.

Today I spent some time sitting on a large ball, practicing my balance in my upper body.  It is much harder than it looks.  Luckily I had my ever vigilant PT to help keep me from falling.

My feet are my largest problem area right now.  I have to watch them constantly  while walking, otherwise I tend to drag my toes.  I could easily trip over my own feet!

I have to admit it is getting better.

Literal baby steps

I worry that I don't have enough computers

Saturday, September 18 ^th, 2010

I survived last week's computer loss quite well. In fact, I ended up buying a new computer. It's a used Dell netbook that I bought from our neighbors. It came loaded with Windows XP, but I also installed Ubuntu’s Net Book Remix. Typing on the small keyboard is very difficult, but I love its portability. The 10 inch screen is fairly bright and clear, making watching video pleasurable. Which is great because I spend plenty of time watching movies in bed.

The main reason I’ve been watching so much video at night is I’ve decided to stop taking the Ambien to get to sleep. Sometimes I am up until 2 or 3, sometimes I am asleep by 9. I’m not sure why I quit taking the Ambien. Maybe I’m trying to feel like my old self again; the self who didn’t take sleeping pills. Or I’d just like watching movies in the middle of the night (One evening I watched a Barbra Streisand movie and The Exorcist.  There were several similarities.). Which is something my old self did anyway.

I’m feeling a lot calmer now too. The people around me are probably relieved to see that. In my effort to rejoin the ranks of the temporarily able-bodied (the TAB), I’m spending a lot less time in the wheelchair; I would rather sit in regular furniture.

I’m experimenting with locomotion in the vertical position, also known as walking. On our last date night, we left the wheelchair at home and I used my walker. It was tiring and I was in a lot of pain later, but it felt so good!

One of my biggest challenges is relearning how to move my feet. I can lift up my leg at the knee and move my hip forward then put my leg down, but I have to concentrate on placing my foot. Otherwise it just tends to flop and drag my toes along the ground. Not very sexy.

The other big challenge is keeping my balance while I walk. I can’t stay upright and unsupported for more than a few seconds. Adrienne said that at first she thought I looked like a toddler, then she realized it was more like Frankenstein's monster. For the first time, living in a small house has an advantage. As I careen about the house on my journey, being able to reach out to a nearby wall and steady myself is a great comfort.

These journeys represent my attempts to rejoin the TAB. It’s easy to get discouraged at how short the trips are and how quickly I get tired; just walking from the office to my bedroom was cause for a brief nap. But then I remember how long a journey it has actually been, and I feel a sense of pride in myself and gratitude to the Lord.

Physical therapy starts/"A cat is a lion in a jungle of small bushes."

Physical therapy starts

Today was my first physical therapy session. Last week was just an evaluation, this week I was on the machines. We spent most of the hour working on my legs and then we finished off with some balance exercises. My legs feel like they’ve been flayed and rubbed with kosher salt, but in a good way.

Once I got home I had time for lunch before a friend came by to help me set up my new shared office space with Adrienne. Yesterday another friend had come by and did all the electrical things I could not do, such as setting up my stereo and speakers in the office. He also made a computer table that fits on the arms of my chair. Today we brought my clothes in and organized my stuff. The room’s not done, but it’s good to finally have a place for my stuff.

The following is something I’ve been working on for a week and decided to post as is:

"A cat is a lion in a jungle of small bushes." *

I told my new physical therapist that sometimes I forget that I am sick. When Olivia, the better mouser of my two cats, chased one under the couch, I wanted to stand up and lift the couch so she could get at it. It was a slap in the face when to be reminded I couldn't do it. Being reminded of my disability made me feel sick to my stomach.

After I told my therapist about what a jolt it was when I came back to reality, she offered the typical panaceas that I hear whenever I suggest that my life isn't perfect. She began to tell me how important my high expectations were, that therapists appreciate having clients that work so hard to have their normal lives, etc. I stopped her and said, “You don’t need to put a positive spin on everything I say. Sometimes things just stink.”

The fact that my life does not consist of sunshine, rainbows and unicorns is not necessarily a bad thing. One of the things that Ala-non teaches is acceptance first, happiness comes later. Someone once told me that bad thoughts (or feelings) are important; how else could we evaluate the good ones?

I am proud and grateful of the gains I have made. I've had the privilege of witnessing miracles. I know that I'm a fortunate man; many people with CIDP have much harder struggles’: physically, emotionally, financially, the list could go on.

Telling my therapist it’s a bummer to be reminded that I can’t walk wasn’t my way of being discouraged, it was my way of being brave. Bravery is another component of happiness. When I lack that bravery, as I often do, my Higher Power draws me close and reminds me that I am not alone. As long as I trust Him, I will be all right.

* Source: on the web, this is attributed to an Indian proverb, but I am not sure there are lions in India and I'm too tired to double check.

Taking it to the streets

Have a happy and safe Labor Day, from someone whose every day is Labor Day. I am writing this from a booth at Kofenya, my favorite place to spend a Saturday morning.

Yesterday was my first outpatient physical therapy. My physical therapist looked at me with a fresh perspective; she doesn't see how far I've come, she sees how far I need to go. What's the advantage of being able to walk if I can only go from my living room to the bedroom?

Our plan is to work on building up my strength and endurance. She noticed that when I walk, I use my hips for most of the motion. I still don't have much activity or control from my knees down. We will work on using the muscles I have the most control over to improve my walking.

She also made it very clear that she expects me to work on these at home.I will feel I 've really earned these gains.

I had my second IVIG made into dose last week and it went very well, I spent the day watching movies. I also reduced my steroids by 5 mg this week. My physical therapist will help to monitor if my CIDP symptoms return. That is a relief.

Adrienne and I began going to the Corwin M. Nixon Aquatic Center on campus. There is a family/handicapped accessible changing room that is very spacious and equipped with grab bars. Unfortunately they did not install an automatic door opener, and I'm not sure I could open the door from the inside on my own. Being trapped is a great fear of mine.

After we get changed, we roll out to the pool and I transfer into the lift. It is easy to operate and I can use it alone. Once I get into the water I support myself by holding the wall or holding on to Adrienne.

Time to eat my breakfast.

Down by the lazy river

Monday, August 8, 2010

Adrienne and I went to swimming tonight at the fitness center on Miami's campus.

What a blast. Miami University has thoughtfully provided a chair lift that is easy to get on and off and is operated by the passenger, so I could control my own decent and ascent. In chest deep water, my legs will bear my body weight. Plus I can really swim, hold on to the wall and kick or bicycle my feet.

We walked inside the rim of the pool, sometimes I held the wall, sometimes I held Adrienne, others I was independent. When we got to the end, we smooched and went back.

The last time I was in a pool was at The Drake Center. I cried with joy because I felt almost normal. The water counter-acted the gravity that pressed me down the rest of the time. When I called them, my knees raised my feet towards my chest just like they were supposed to do.

I changed the "Overheard" box on the upper right corner of the pager, please let me know if you have any you would like to share.

End of Summer, 2010

The Miami students are back to classes and hopefully we have seen the last of this summer’s “fry an egg on the sidewalk” heat. I’ve come very far since March; I watched spring turn to summer paralyzed in a hospital bed and now I am walking around the house with a walker!

My most vivid memories of the summer are of Mercedes standing by my side, clapping her hands and chanting “Go! Grandpa go!” while I shifted my weight from the chair on and off a transfer board. Now I make my transfers by standing up and moving my feet, then sitting. I couldn’t pick her up when she arrived, but before she left, we could play airplane.

I also remember that God has also surrounded me with a loving support group and family who carried us through these hard months.

The doctors and therapists who have aiding my recovery have all been to notch.

A large chunk of my family, some of whom I haven’t seen in years, made the trip to Oxford to visit us. My brother Bob and his wife Mary Carol came to visit last week, their two oldest sons were here the week before. My Sister Neli and her husband Nate also visited. And of course my Brother Jim, who was able to stay with me for nearly a week this summer, was a tremendous blessing. Plus there have been nieces and nephews, and friends from so long ago who have dropped by, called or written.

Then there are my new friends. People like Niki and Jeannie J. who gave their time to help Adrienne and me, the friends who helped get the house ready and all the people who are carrying us in prayer.

Friends like Steve and Duane, who gave us such amazing gifts to us that we will treasure for years. I have no idea how to respond to such generosity. My brother was moved to tears when he heard about the generosity.

Last week while doing my circuit around the park a stranger who appeared to know me quite intimately stopped me to talk. He appeared to know me pretty intimately, but I couldn't place him. It was my doctor, I discovered the next week.

It turns out that I haven't really lost all the weight I thought I did. When I was at the hospital on Wednesday, my weight was 239 pounds, at 25 pound increase from two weeks ago.

I have felt pretty distracted and withdrawn for the last week. Most difficult has been day-to-day maintenance tasks such as scheduling my rides to the hospital or ordering medications. Talking on the phone or trying to make plans about the future has been exhausting. I haven’t been to an Ala-non meeting in over two weeks because I just don’t want to talk to people now. That is also why I’ve been staying off of Facebook, e-mail, or writing my blog.

I spent a lot of time in my room, watching old horror and science fiction movies on YouTube and Hulu. I just can’t get enough of movies with titles like Astro Zombies or Battle between the Planets. Many of these movies were staples of my Friday nights and Saturday afternoons in front of the television. I hope someday to write more about these movies in an informed and eloquent style like this blog, devoted entirely to films of the 1960s. The author also writes a blog for Turner Classic Movies, which I’m sure is wonderful but I haven't been able to follow it since I got sick.

I believe it is the new medications I’ve been taking to help with my steroid rage. My memory of taking anti depressants is that they made me feel disassociated. I will admit that they’re helping, but the problem has not gone away. This week I started taking a third anti depressants/mood disorder drug. Hopefully that will help before I lash out at someone who will punch me in the nose, wheelchair or not.

Other than my reticence about contact, things have gone very well. I am continuing to improve at a miraculous rate. God has been very good to me by speeding my recovery. Today I got up from a chair in the living room and walked out to the mailbox and back. Take that, CIDP!

God loves me as I am, imperfect and incomplete. I know he has a plan for me, Adrienne, and Natasha and Mercedes. It is hard not to worry about them because they are so far away.

August Update

Monday, August 16th 2010

I had my August neurology visit today on the heels of my most recent IVIG treatments. Even though the explosive improvements June and July weren't there this time, I am continuing to make good progress.

My neurologist feels it is time to switch to a maintenance treatment program:

• Instead of getting a week long IVIG course, I’m going to get one a week and see how I do.

• I’m going to continue to cut back on my prednisone, five milligrams every two weeks until I get down to 50 milligrams a day. This will help with the side effects. If I’m able to go down on the prednisone, I could go off one of my anti-depressants. While the anti-depressant helped with the steroid induced mood swings, it is had its own set of side effects.

• She is concerned about my weight loss. I’ve lost over 70 pounds since I first went into the hospital in March. I was expected to gain weight as a side effect of the medications. She suggested I try eating more.

• I’m okay with that.

• The best news of the day is that I no longer have to wear my cursed mantihose during the day. Because my legs are much more active than they have been I don’t have to wear my mantihose. She suggested I switch to knee-high mantihose, but I don’t see that happening. Because I’m not going to be wearing the thrombosis hose any longer, I need to increase the amount of activity in my lower legs. To celebrate that, while doing my evening lap tonight I spend a significant portion using my feet to propel my wheelchair. My calves are tingling, not unpleasantly. I assume the feeling is from blood being pumped through tissue that has been largely unused in recent months.

• Also to help prevent blood clots, I’m going to start taking a baby aspirin every day.

Of course the switch to maintenance is a little scary to me. My brain immediately jumped to, "What if I get sick again?" My physician said to call her immediately if I start showing any symptoms. The solution would be to go back to my five times a month IVIG treatments. Of course with CIDP, nothing is certain.

I also had my monthly physical therapy assessment this morning. My PT was properly amazed at how much progress I’ve made in a month. "Last time I saw you," she said, "you were nearly paralyzed." That was the first time anyone had used paralyzed in reference to me.

Once again my “ glass half empty” world view kept me preoccupied with how bad things could really be. That is some serious stuff, being paralyzed. The most unfortunate people are paralyzed. Is that me?

I am still getting stronger every day. Insurance is taking care of medical bills. I just got a new (hand crafted by a friend) table so I can use my computer anywhere in my wheelchair. I had lunch today in uptown Oxford, outside where I could watch the returning students.

And I didn't have to wear my mantihose.

I return to work

Friday, August 6, 2010

I went back to work yesterday. I didn't go back to work work, I went back to take part in a celebration.

My job was to teach computer classes in the senior center at the Mayerson Jewish Community Center and to coordinate a volunteer run telephone assurance program.

Both my programs are funded by a grant from the Mayerson Foundation. Once a year we would have a special luncheon to thank the Mayerson's for their generosity and to show what we had accomplished in the last year. Click on the picture below to see a Picasa web album from yesterday.

This was the first time I had been back since March 19, the day I went into the emergency room. It was also the first time many of these people have seen me since I got sick.

The senior adults and fellow staff members swarmed me, giving me hugs and kisses and tears of joy to see me again.

I was reluctant to let go of the people I was hugging. Being physically close to them was an intense reminder of how much comfort they are to me. They have been lifting me up with their prayers, well wishes, cards and letters, whatever they had to offer since I left.

Once again, I'm left speechless by the generosity of the people in my life.

It was a physically and emotionally exhausting day. It was a pointed reminder of how far I have come (and how I got here) and there is still a ways to go.

When I got home I went right to bed and stayed there until 10 o'clock today.

Pause

Wednesday, August 4, 2010

I feel like a new person. I'm not sure who that is but his life is very full and active. My house is also full and active with my granddaughter running around, Alex and Adrienne working on their projects, and this week my mother in law, Lola is visiting.

I love sharing my house with my granddaughter. She is a constant source of joy to me, and noise. For the last day she has been sharing things with grandpa. If Nana gives her a cookie, she brings it to me and offers me a bite. Of course reciprocation is the downside to this; if I have something she wants she just takes it off my plate. Indulgence is the first role for grandfathers, so I am happy to let her have her pick.

My physical recovery is still progressing rapidly. I am certain that I will be able to stand on my own soon, walking independently can't be far behind. I hope.

CIDP is a very serious illness. I have the attitude that I am lucky, my symptoms have retreated and my body is well on the way to mending. A quick look at some CIDP discussion forums on the Internet last night reminded me of how unpredictable this sickness is. Severe recurrences are not unheard of, sometimes the illness develops a tolerance for its treatment drugs. More than once I've read someone who went to sleep fine and woke up paralyzed, unable to talk.

The next phase of my recovery is to figure out the minimum amount of medication I need.

And I'm continuing to redefine myself now that I left my Able Bodied Person status behind. With the help of friends, I'm continuing to expand my world by spending time outside the house without my family present. Last week I reached a milestone when I returned to the coffee shop where I had spent many happy hours, drinking strong coffee and playing on my computer.

My First Steps

7/29/2010

Praise the Lord for what he has done for me. Click the link to see the video

My status has been upgraded from amateur to professional

July 17, 2010

This is from a post I wrote shortly after the 4th of July:

“…while waiting for the fireworks to start, I saw someone in a wheelchair come down the sidewalk and cross the street. I was awestruck by how graceful and independent he was. He came down with a group of friends who went off to the right while he went off to the left into a parking lot. Moments later he emerged from there and took off after his friends, across the street and down the hill. He moved as easily as I can say these words. So far my experience with using my chair outside has been anything but easy or graceful. I struggle to keep the wheelchair pointed in the direction I want to go and forget about going up any incline-it is too hard.”

This week I got my new, custom built chair. It’s awesome! The chair is designed to fit me perfectly. It is like a part of my body and is engineered to fully utilize the power in my upper torso. Going up and down Jacqueline Drive is like riding a bike, I coast, accelerate and brake smoothly.

I’m intoxicated by my newfound of mobility. I left the house Saturday morning and traveled on my own the half mile to our local McDonald’s restaurant for breakfast. Then I lingered over coffee and read the paper. On the way home I stopped at a drug store and bought a candy bar (a no-no, but I was intoxicated.).

After that, I ran into Alex, walking home from his mornings activities. He was amazed to hear where I had been. For the first time in a long time I felt like an adult, making my own decisions and traveling independently.

Before I got my new chair, traveling on the local sidewalks was extremely difficult if not impossible. This meant in order to exercise, someone would have to drive me to the local big box store where the floors were flat enough for me to roll across. Now I know I can just go out my front door and travel up and down the street.

Getting outdoor exercise is extremely important. If I don’t tire myself out during the day, I’m extremely irritable in the afternoon and evening. There the combination of pent up energy and frustration make a bad mix for my mood.

Exercise and mood are important to my attitude. At my best, I am a jerk. The side effects of Prednisone and Cellcept exacerbate that condition. I often have to explain that I am having “crazy thoughts” and should be left alone. There is a condition known as “Steroid Psychosis” and sometimes I feel so out of my head, I worry that I am developing it.

As I’ve recovered, I’ve noticed that I have started to become alienated from the world around me. It’s like an undeclared state of apartheid between the Bi-peds, those whose arms hands feet and legs work perfectly, and the disabled, who inhabit the lowest tier of society because they lack four, symmetrical working limbs.

The other day someone put something in my lap and I found myself yelling, “I am not a piece of furniture!” I was prepared to go on about how they shouldn’t assume I was their personal storage cart that they could load up with useful items and move from place to place at will, but I could tell by the look on the person’s face that I had already gone too far.

I’m completely horrified whenever someone grabs my chair and begins to pull and push me without asking my permission. It wouldn't be acceptable if I were standing up, but because I have wheels...

Lucky for me, the volunteers at the hospital have a good sense of humor.

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.

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.