Friday, December 31, 2010
Saturday, December 25, 2010
Nothing says Christmas! like a trip to the emergency room.
I am a little light headed now, it has been a busy couple of days.
It has been heart warming to hear about everyone's Christmas. We got hit by the flu bug-me the hardest. After a long night of vomiting and diarrhea, I woke up this morning unable to move. Very scary!
Because of the auto-immune issue, they admitted me to the hospital. The good news is I don't have an infection. But wow, I have never felt as sick as I did last night and today.
It is eerie how comfortable I've gotten with the way things get done in hospitals. What a strange year it has been.
Tuesday, December 21, 2010
- I start from an upright position, both feet flat on the floor.
- 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.
- 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.
- Keeping the second knee straight, I bend the knee of the first leg, planting that foot in front of me, heel first again.
- 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.
Friday, December 10, 2010
"For me, it is the difference between a sign that reads “Parking for People with Disabilities,” and one that says “Handicapped Only,” as if there were some sort of apartheid between the TAB (temporarily able bodied) and the handicapped or disabled. Because of my illness, I often need help; sometimes, to accept that help I have to surrender the undisabled part of me. Maggie does not wish to be consumed by her illness and struggles to retain her personality beyond her illness."
Thursday, December 9, 2010
Friday, December 3, 2010
|Al & me, Summer, 2010|
Tuesday, November 30, 2010
Being productive is cool:
I got out of bed at 7 o'clock today. The first thing I did was plug in my iPod for some sweet, Brazilian music then gather the ingredients for tonight's supper, Sweet Potato Chili , a crock pot recipe. I brought a chair into the kitchen so I could sit while reaching down into the bottom of the refrigerator to get the sweet potatoes and onions. It is much less taxing to move the chair and sit than to hold my balance while bending over. Bending at the knees is a skill I haven't remastered yet/
Being on my feet while cutting was a challenge, but I found that if I stand in the corner and lean my hip against the counter, I can stand long enough to cut the veggies and make my coffee.
After the chili was assembled and the crock pot plugged in, I started making my breakfast, a bowl of grits. Since our kitchen is too small to host a microwave, I had to assemble the it in the kitchen, then walk it to the microwave without spilling.
Once again, the chair from the table gave me a place to rest while waiting for the grits to cook.
When I sat down to eat, I checked the time. It was just after 8. A pretty good hour.
Friday, November 26, 2010
Tuesday, November 23, 2010
We left New Orleans on Monday after having a great time. Adrienne and I really enjoyed each other's company while touring around the city. We will be in Mobile, Alabama until Thursday, visiting a childhood friend of hers. I can not wait to see what interesting things I discover about my sweetheart!
The hotel in NOLA (the new, short hand for New Orleans) had no free access to the Internet (or Continental Breakfast!), so I am behind in my correspondence. I had plenty of great experiences and thoughts about traveling as a handicapped that I am sorting through right now and I am sure that writing about them will help.
Monday, November 15, 2010
Tuesday, November 9, 2010
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.
Monday, November 8, 2010
My new blog
Monday, November 8, 2010 05:07 PM
I just returned from visiting my neurologist. Things went well. The only medicine change we will make for now is to continue to reduce the prednisone, 5 milligrams every 2 weeks until I am down to 30 milligrams daily. She wants me to monitor my blood sugar closer-I might be taking too much diabetes medicine now.
I asked her about sub cutaneous IVIg, but she said she didn't know anything about it for treating CIDP. She did promise to look into it for me.
I still have some weaknesses in my hands and feet. She was impressed to see me get up and walk, but was concerned about how my feet splay out. I still don't have visible reflexes in my legs, but they have returned in my arms!
So has a lot of the sensation in my feet and hands.
Let's hear it for good news!
Monday, November 8, 2010 05:46 PM
Sunday, November 7, 2010
Friday, November 5, 2010
I had a good day at physical therapy today; I walked around the gym with just a cane and minimal assistance. My PT followed behind me with my chair in case I needed to sit down, and there were a few moments where things got wonky, but I didn't need it. I made it back to my starting point and sat down with a happy laugh, "Take that CIDP!"
And my grip strength is around 80 pounds, which is near normal according to The Drake Center.
I had been feeling down the last few weeks. Maybe not down, just unenthusiastic.
I guess I just needed a win.
The physical and occupational therapists I've worked with have all done a phenomenal job; I am proof of that.
Lastly, I would like to share The Third Step Prayer I found a copy in a Bible I bought many years ago. My favorite line? "Relieve me of the bondage of self so I may better do Your will."
Thursday, November 4, 2010
Thursday, November 4, 2010 8:00 AM
The November 4th Courage to Change says this:
For some reason it feels uncouth to talk about my blog on my own blog space. Question, would blogging about blogging be called metablogging? A quick Google search tells me that that is exactly what you would call it.
In my own defense I promise to be brief.
Fall Risk's scope will be limited to my recovery (recoveries), my new life, and my relationship with God as He continues to reveal Himself to me. Of course these topics are all intertwined so it is difficult to isolate them from each other.
It is a privilege to be able to share my struggles with CIDP and the miracles of recovery with so many people; my readers have been a great source of support through the darkest time in my life. And I love that we celebrate together.
The very least I can do is to keep this area focused on a few topics and stick my blatherings about monster movies, computer stuff, the busy lives of my pets, and whatever else pops into my head, someplace else. It is called What I Watched Last Night and will be a place for me to do whatever I want, which sounds pretty self indulgent.
It's good to have choices.
Tuesday, November 2, 2010
|Curse of the Crimson Alter|
After their short period of scampering around the house, all four of the pets have retreated to their neutral corners and are now sound asleep. The brown dog is on the black chair and the black dog is on the light brown sofa, both of them snoring contentedly. The felines, I imagine, have taken their places on our bed, starting their day long nap. I've noticed that our cats really don't do much else.
- Load and run dish washer
- Put away my clean laundry
- Dust mop the bedroom floor
- Teeth, shave and shower
- Order medication refills
- Set up prescription by mail
- Enroll in a diabetes education class
- Give Frannie her medicine and Eloise her dog treat
- Put Netflix discs in mailbox
- Get out of the house!
- Maybe go to Kofenya or some other uptown place
- Catch up on my e-mail correspondence and blog reading
|Fangs of the Living Dead|
|The Blood Drinkers|
Lastly, I spent a lot of time watching a group of films by Filipino auteur Eddie Romero. These films were made in the late sixties and early seventies and most featured the word blood in the title. The best of these films is called The Bloods Drinkers and can be watched for free at Hulu.com. Beautifully shot in a mixture of color, black and white and monochrome tinted scenes, and populated with some of the most interesting villains I’ve ever seen, it reminded me of the stylish films of Jean Rollin.
My companion for most of these films has been Olivia, our black cat. She curls up in the crook of my arm and watches as my computer screen with me. I’m pretty sure she’s not actually watching the movies, but rather than moving colors on the screen. Otherwise I would give for one of my ear buds so she could listen.
- Clean up after breakfast
- Load and run the dish washer
- Put away my clean laundry
- Dust mop bedroom floor
- Brush, shave and shower
- Give Frannie her medicine and Eloise her dog treat
Sunday, October 31, 2010
Monday, October 25, 2010
From the beginning of March, 2010 through June, I was fighting a losing battle with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). CIDP is a chronic, progressive auto immune illness, similar to MS. My body's immune system became hyperactive and it began attacking my nerve's protective myelin sheath. As spring turned into summer,CIDP took my legs, my arms, my feet and my hands, leaving me paralyzed.
It took plenty of faith, work and support from friends, family, and the excellent physical and occupational therapists who brought me to this point.
Monday, October 25, 9:00 AM
Saturday, October 23, 2010
|Tenzin Gyatso, his Holiness the 14th Dalai Lama|
Saturday, October 16, 2010
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.
Tuesday, October 12, 2010
Wednesday, September 29, 2010
Saturday, September 18, 2010
|I worry that I don't have enough computers|
Saturday, September 18 th, 2010
Monday, September 13, 2010
Many times,since I got sick, direct communication has been to much for me; even the phone has been a challenge. The Internet has been a huge blessing. Talking via chat or Email has kept me from being a total recluse.
I've also had a chance to watch some great movies through HULU, YouTube and Netflix.
I hope it won't be too long before they get it fixed. Until then,
Friday, September 10, 2010
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.
Saturday, September 4, 2010
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.
Tuesday, August 31, 2010
Friday, August 27, 2010
Tuesday, August 17, 2010
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.
Monday, August 16, 2010
Sunday, August 15, 2010
Today during his sermon, Pastor Logan asked us to think of someone who would had been a spiritual influence. I immediately thought of Paul, a neighbor from Norwalk with a son the same age as me. He would drive us to school in the mornings. More than once, when I came over, he would be sitting at the breakfast table, reading his Bible with this breakfast dishes scattered around him.
Paul was the first person I had ever seen, besides our church pastors, who sought to continue his relationship with God beyond church on Sunday morning. Paul and I never talked about our faith, but by doing his daily devotion, he had a profound effect on me.
Logan asked us to name some of these people. During the congregational prayer, those names were read back and we thanked God for their witness. We asked God to “ grant us Your mercy to live by the same strength.”
I am grateful to God for my health, my wealth, and the support of friends, family, and fellowship. I pray for knowledge of His will and the strength to carry it out.
Friday, August 13, 2010
Thursday, August 12, 2010
CIDP recovery isn't always in a straight line.
Forward, sometimes it happens just this fast:
I woke up a few nights ago because my right foot was moving. Up until that moment, I hadn't seen any recovery below my knees. Suddenly I can wiggle my toes again and push my foot up and down, like using a gas pedal.
I think it’s interesting that I found this out while I was asleep. Somehow my subconscious sent a letter to the conscious through the dream world. I was getting my feet back.
Along with the return of movement came sensation. For the first time since the onset of symptoms in March, I am in pain. My feet, ankles and calves buzz and tingle throughout the day and night. Every so often I get a jolt like an EMG shock. That hurts.
The other step forward has been the return of my hands. When I went back to the Drake Center for my follow-up visit, my grip strength was measured at less than one pound. The average TAB person's grip is around 80 pounds. Less than a week later my grip strength was nearly 10 pounds!
Zippers, button, and reclosable plastic bags were once again objects I could manipulate. I could also push the keys on my laptop's keyboard again, put things in my pockets, hold a wash cloth and soap, etc.
Backward, sometimes it takes a while:
My occupational therapist suggested that typing more would be an excellent way to improve my fine motor skills.
Although my hands have improved dramatically since June, typing is still a chore. In addition to the muscle loss, my hands and arms shake violently from the medications. Most of my July posts have been almost entirely picture or video content.
I thought I would be able to type full-time, but the constant stream of typos makes it hard for me to concentrate. And my hands get tired quickly. I found myself missing the voice recognition software that came with Windows Vista. It had been a great help to me.
I’m going geek out here for a few moments. The biggest problem with the voice recognition software is it requires the Windows Vista partition on my laptop. There’s no need go over the reasons why Vista was an unsuccessful operating system; most people have their own list anyway. Before I got sick I was learning to use an alternative to Windows, but had to stop for one important reason.
Whenever possible, I used the Ubuntu Linux partition on my laptop. Linux is an alternate operating system that is quite powerful, yet also light weight on the computer’s resources. What this means is that anything I want to do on Windows, I can do in Linux faster, more efficiently, and for free.
And it is also fun. There are some challenges, but I love problem solving and figuring out how to make things work. All the software is developed and given away by users, not for profit companies. So the programs can be a little quirky and help is a little more challenging to find. But since there is a community that works on the software, fixes and work arounds come fairly quickly.
But there is no voice recognition software for Ubuntu. I know a couple of projects being developed, but I didn’t find anything that I was smart enough to use successfully. Whenever I wanted to write, I had to go back to slow, buggy, forever updating itself Vista.
But I am able to compromise; I wrote most of this in Windows using the voice recognition software, then edited it by hand in Ubuntu, using the excellent (and free!) OpenOffice.org Writer program.