Iron Ore

Update:

I saw the neurologist Monday and things are going well. Despite the ever present weakness, fatigue and pain, no CIDP symptoms. I am going to continue reducing my prednisone until it is 5 mg a day. I am going to start tapering off my IVIg-once every two weeks, then once a month and finally, as needed.

They are popping open champagne at my insurance headquarters over that! Last time I checked, my IVIg was over $16,000 a treatment.  I have had around fifty since last March.  

In other news, I am now married to a doctor. Adrienne received her PhD on Saturday. Next week, we will travel to Vermont to visit friends and pick up Mercedes. I can think of little else than seeing her again. There are also the preparations for moving to Statesboro, which will happen early in July. Of course, the house is still unsold.

Jesus is Lord

I have always heard that "God will never give you more than you can handle,"  and there are two opposing ways to look at it:  Sometimes that is good news, sometimes it is not.  After all, who wants to be tested?  I would never chose to be driven to the point where I end and my Higher Power has to take over.  One of the good things about that sort of testing is it can improve my relationship with God.  But what happens once the test is finished?  

Monday's update

As always,  my appointment with Dr. Boughaba had an anxiety relieving effect.  I consiuder myself very fortunate to have found her.  We talked about finding a new neurologist in Statesboro and she is willing to help with the search.  That was a big relief because I hadn't been able to find any neurologists there that specialized in CIDP like she does.

Chronic inflammatory demyelinating polyneuropathy is not a progressive illness, it is an intermittent condition.    She was concerned that I might be having a flare up when I told her about feeling more fatigued lately and off balance more.  She proposed extra IVIg treatments for now.

My day out

Monday, January 31, 2011 10:43:47 PM

We woke on Wednesday morning to a house with no electricity which meant no heat, to Internet, and NO COFFEE. There was a huge ice storm in South-West Ohio last night, leaving everything coated in glass. It is very pretty to look at, but getting out of the house to find heat, Internet and good coffee was pretty tricky.

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.

An answered prayer

Friday, November 26, 2010 10:10 AM

We flew into Dayton last night and boy, are my arms tired! I couldn't resist. It was a late night for us and I had an early morning today. We are both tired and I am feeling a little under the weather (sick). It is probably from my poor dietary choices and not from a bug.

We left New Orleans on Monday and drove to Mobile, Alabama to visit a childhood friend of Adrienne and her husband. After a good night's sleep, followed by a long nap in the morning, we made it to their house early in the afternoon. For the next two days, they treated us like royalty, opening their home to us and chauffeuring us around Mobile.

I pushed myself on our site seeing visits, walking as much as possible. We visited a Civil War era fort at the mouth of Mobile Bay and I must have walked at least 90% of our time there,going around the perimeter and down stairs on my feet. It was fun to see the world from that height. It did take its toll on me and wear me out.

On the way out, an elderly lady approached our group and asked, “Well, did he behave himself?” The rest of the gang paused to talk with her and joke about my behavior. I rolled ahead, embarrassed at being talked about as if I were a hyperactive twelve-year-old.

When I calmed down, I realized that I had it wrong; she wasn't singleing me out because I was a special, she was trying to ingratiate herself with us in a friendly way. I remember a very social client who was mildly retarded and used a walker because he had cerebral palsy. One of the things he liked to do was approach a pair of people having an animated conversation, such as two women in the grocery store where he worked. Once in position, he would wait until the conversation reached a point where both women would begin laughing. He would laugh with them and say something like, “You just don't know...” at which point, the ladies would include him in the conversation, as if he had been there all along. Tricky bastard.

Adrienne's friend and her husband many rather personal questions about what happened to me, “What was the worst part? How many medications did I take daily ? My illness was monopolizing the conversation and I began to feel a little self-conscious. Was I the ambassador for disabled?

One of the things that Al-anon has taught me is that when other people exhibit annoying behaviors, it is often because I find the same things annoying in my self.

With that in mind, I flipped my perspective and realized that these 3 people were trying to do something I had difficulty doing; ask some one questions about their disability. Once I had a friend who was in a wheelchair and I let that chair get in between us.I never asked him why he was there or anything about his life outside of the narrow focus of our shared interests. I never did it because I was afraid to bring these subjects up. That was silly of me.

He may have welcomed sharing that part of his life with me. If not, he was capable of letting me know. This may have deepened and improved our relationship. It would have been helpful to talk to him about these things when I got sick and realized I was about to become disabled.

I sent him an email last summer, but never heard back. I hope I'll hear from again; I miss him and the things we talked about. We also might have done the other thing friends do; support each other through difficult times.

We left Mobile Thursday afternoon drove to Louis Armstrong International Airport in New Orleans for our flight home. I was once again groped by TSA; was no easier the second time. However, this time, the Air-Tran employees were very courteous, speaking only to me about myself and asking before grabbing my chair.

I left the South renewed and encouraged by the friendly people we had met. I don't think it was because I was a handicapped, but because they were genuinely good people.

I especially appreciated the hotel. The room accommodated myself and my chair nicely and the bed was comfortable. We were late leaving the motel, largely due to my exhaustion. An employee came to our room to check on us. She also took a moment to hold Adrienne's hand and prayed for our safe travel home.  She showed herself to be braver than me.

Friday, November 26, 2010 12:34 PM

Going to New Orleans with an aching in my heart

Friday, November 11, 10:30 PM

Up early, after an early night. I took an ambien as soon as I finished packing (around 8 pm) the Thursday and slept though until Adrienne woke me at 4 am. The airport was jumping when we arrived two hours later; maybe because it was the Friday before Thanksgiving. We were both excited and nervous about my first trip since I got sick. It was also going to be our fist vacation in over a year. It certainly was going to be an education trip for us and hopefully a few others we encountered along the way.

Getting through security was an uncomfortable experience. I had to submit to a body search-hands down my pants, etc. It was explained to me by the apologetic TSA agent who would soon be sticking his gloved hands under my butt, that these were the new security rules for wheelchairs, so I can expect the same on the return trip. I chose not to go into the privacy booth, rather remaining in full sight for everyone to see. These rules are to make my fellow passengers feel safer, but I don't believe they make us any safer in reality.

Getting on the plane was also uncomfortable since I wasn't allowed to speak for myself. It was suffocating to sit in my chair, the TAB's towering over me, talking about me while my contributions to the conversation were ignored or die d unsaid in my mouth. In hindsight, it seems like being overly sensitive, but I remember how angry I felt when it was happening. P erhaps it had to do with the humiliation of already being groped just because I was in a wh eelchair, but I couldn't speak up for myself. I felt powerless in the presence of these giants who could treat me anyway they chose.

By the time we get to New Orleans, I am stressed out, sore, and very tired. I am also very snippy and argumentative with Adrienne. The first thing I did when we get to the room was flop down and take a nap.

We stayed in the hotel where Gerontological Society of America was having its conference. The hotel room had a walk in shower with a bench for me to sit on and the closet had a set of lower bars that were reachable from my chair.

I was amazed at how parsimonious the Hilton was with amenities. One would expect that for $200 a night, the Internet would be free and there would be a continental breakfast. The only free amenities were the towels and and one cup of coffee from the in room coffee maker.

This was our third trip to New Orleans. We had both been there twice before and we were happy to find it was still a fun and beautiful place. Navigating through the French Quarter was a challenge because the old sidewalks were very uneven. Luckily for me, Adrienne was there to push me when I was too tired to continue, which was often.

We forgot to bring the card reader, so I won't be able to post any pictures until we get home on Thursday.