Pretty good vacation

I am doing this in the back of a moving car, on my phone so it is not going to be pretty. 

We are taking Matt and Mercedes to the airport for their trip back to Vermont.  Their 10 day visit was really good and all concerned are sad to see it end. 

Last night Matt told us that he is seriously considering accepting our offer to move in with us.  That would be awesome.  I am sure part of that is because he wants to use the amazing workshop he created in the garage.

Picture to follow of that. 

We spent the Christmas Eve and Day hunkered down in our grinch cave, wishing that time would pass faster.  Gratefully, there were meetings for us to attend. 

But when Matt and Mercedes showed up, it really felt like Christmas.  That feeling continued throughout their visit because everyday we got to open a present.

Midnight Salad

At midnight last night, Mercedes, my grand daughter, climbed into bed like a cat; I nearly kicked her in the face to get rid of her.  Since I am a big baby about getting woken up, I decided to the best way to get back to sleep would be a self induced food coma.

Inspired by the salad I had my friend Stacy's house (Stacy does everything wonderfully), the refrigerator was stocked with all sorts of salad goodies, including an avocado, kalamata olives, and some Irish Pub Cheese (a substitute for  the mozzarella balls in olive oil).

Putting about a third of one half of the avocado, about half a dozen olives, several thin slices of cheese that I chopped into bits into a bowl and a handful of romaine lettuce I sprinkled a few drops of lime juice, and olive oil onto my salad.  Lastly, I went to the spice cabinet and added a little salt and some mint flakes (I could not find any oregano or basil, could we be out?!).

A quick toss in the bowl and I dug in.  It was exactly what I wanted, salty, with a little sweet and cool for kicks.  Because avocados are so difficult to keep, we seldom have them and I had forgotten how much I love their nut-like flavor.

Of course the salt and even saltier olives left me craving something sweet-my answer to that was a B & B nightcap.

Sadly, an hour after she woke me up and just as I was finishing typing the above paragraph, Mercedes crawled back into bed with us.

In other news, I have been going back to physical therapy to help manage my pain, plus I have a slew of new equipment to show off, which I plan to write about soon.  

He Leadeth Me

Sunday, January 8th, we had the pleasure of taking Natasha's daughter, my granddaughter, Mercedes to our new church in Statesboro.  She was very well-behaved and joined in the service to the best of her ability.  She stood when we stood and during the hymns, held hymnal open in front of her, just like the rest of us.  Wow, what a cute kid.  

Pink lightning

In a flash of pink lightning and a loud shreik, a naked, jumping Mercedes appeared at the foot of my bed, yelling "I am here Nana!"

I am sad to say that a cold has laid me low the last couple of days. Colds never used to stop me before, slow me down, sure, but never stop me. It makes me angry, then scared and finally sad to once again experience life from bed.

Especially now that Merecedes is here.  She is so funny and smart, too. The other night, while trying to put a puzzle together, she told me, "when you get frustrated, it is a good idea to take a break and do something else for a while,“ with a very straight face.  I felt soothed and calmed down immediately.

Am I such a basket case that my 3 and a half year old granddaughter needs to take care of me?

I have the name and number of a therapist, now I am just trying to find the courage to call him. I have to do it soon though.I am tired of feeling like this all the time.

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Knowledge to carry it out blues

Tuesday, December 28, 2010 10:47 AM

This is the last day of 2010 and I do not intend to reflect on the year past searching for clues and encouragement to face the year ahead. 2010 was a pretty turbulent year for me and I am looking forward to seeing it disappear my rear view mirror.

Not that it was all bad; to be truthful, the good far outweighs the bad. There was plenty of change for me and change is almost always a painful experience. Anyone who has quit smoking or some other deeply ingrained behavior knows this. At least with smoking or eating, there is some sort of physical record. I can see myself cadging a cigarette from my neighbor or eating peanut butter out of the jar at midnight to know that I have not given up smoking or grazing.

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.

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.

Our visitor

Wednesday, June 30, 2010

I had my follow-up appointment at Drake Center today. The high that I been feeling the last couple of days due to my increased strength and energy and independence, was dashed by the actual numbers. When the doctor checked my strength, I showed little or no improvement since I left the center. Most distressing was my hands, which formally had been able to pull at 8 pounds of pressure, now could barely register.

I fumed for hours, surrounded by a dark cloud of cranky precipitation I rained on everything I could. At one point in the day, Adrienne said to me, "Please bring back the nice Michael, the kind Michael. I don't like this one."

The doctor asked if I declined after I left Drake. I reminded him that I was declining while there. He just didn't believe me. That was somewhat satisfying.

The truth is I'm adapting well to my new life. I have become more active, more involved in caring for myself than ever. I clean my own dishes, give the dog her medicine, and go in and out of the bathroom. I still struggle with buttons and zippers though. That is going to take some time and maybe some creativity. Adrienne thinks she might be able to build something that will help.

Gone are the days when I couldn't brush my teeth or feed myself because I didn't have the strength. My legs, shoulders and abdomen are recovering. My further extremities will recover when the nerves are repaired. That is going to take some time.

I'm going to be in a wheelchair for a while, and I am OK with that. I have seen that I'm capable of recovery, and that is the best news. I will continue to widen my circle of activities and work towards independence.

My granddaughter Mercedes has come to visit us for the summer. She's a delightful child, two years old, blond hair and blue eyes. She is very active and she loves to laugh. Of course being a two year old, she is still a two year old.

She is very curious about my accoutrements: the wheelchair, the mantihose, and transfer boards. She helps out with my transfers, getting the board from its storage place and bringing it to me, taking the legs from my chair and putting them in the trunk of the car when we're going someplace, and best of all yelling Go Grandpa go!" when I slide across the board.

I am so blessed.