Chiari Morning

Monday, February 25 2002

Today's soundtrack is Mozart's "Concertos: Oboe, Clarinet, Horn, Flute and Harp." It's the sixth CD in the collection from my inlaws and the first piece shows it has as much potential as the others. I'm having a sort of productive day but I need to relax a bit. I hate making important phone calls yet have five more calls to make.

The second call was tough because I had already called the doctor asking to get a prescription renewed. Even though I think it was the incompetent one, she seemed to be having a good day. Therefore, I asked her the more important questions. Did the MRIs reveal anything worthwhile? Whether they did or not, I also expressed my interest in a referral to North Shore's Chiari Center.

That was one of the worst constructed paragraphs I've written in a while. The first sentence leads one to believe it's about the the second call yet I write only about the first. How typical! In any case, the receptionist asked me what number she could call me back at and I drew a blank.

We're talking a complete blank. After a minute or so, the number came to me but without any confidence. I had to go downstairs and check where I had written the number on the phone. It was the right number but things like that scare me. I made sure to mention that to her and went on to my next call.

This was the first call in the series I need to make asking about public assistance. After spending time on hold, I was given a decent person. She gave me six numbers and what they are for. She's also mailing me a book containing more imformation. I had a hell of a time getting my words out. Here and there, I resorted to the old standby of one and two word sentences.

As expected, I was told we make too much money for most kinds of assistance. This might be true but I get the impression that the system is designed to push away as many as it can. The person on the phone also told me that Federal funding for these programs is supposed to be on the way. Otherwise, the state social services are pretty much out of money.

Making that call absorbed a fair amount of energy. That's been the one resource I seem to be shortest on lately. As expected, I paid for Saturday's fun. It wasn't really the expected pain as much as the lack of energy that got me. I fell asleep multiple times during the NASCAR race. It wasn't a great race but that's unusual. It also happened later on while I was watching my "MASH" DVD set with Melissa. I dozed off twice then and once was during what is one of my all time favorite old cast episodes.

I could probably sleep now despite being in an above average amount of pain. What I really should do is vaccuum more. This office is finally as clean as I'd like it to be again after more than a month of not even having an available vacuum. There is so much on my plate right now that it's not even funny.

As I said yesterday, the key is to pick off one thing from the list at a time and do a job on it. Today, I took Laurel's information and used it. That meant calling the Department of Social Services and sending email as well. I got six more numbers from that call but I'd better consider that another job.

I'm going to section off the bedroom and attempt to get a section dusted and vacuumed today. With the exhaustion setting in, we'll see. I really should get a shower very soon after. By this afternoon, I'll be completely nappy. I'm going to get started after this last Mozart piece ends.

The bedroom is starting to look better and I learned something new and amusing about the vacuum. Every time I got it near any plugged in object, the circuit breaker shut off in the garage. Really, all that's left to be done in there would be Melissa's side of the bed and the base boards. No, I'm not saying Melissa's side is a mess. It's just that I would have to put the dusting hose back on and there just wasn't enough energy for that.

I just spent a fair amount of time writing on the subject of coping for the World Arnold Chiari Malformation Association mailing list. I'll be referring to it as WACMA here in the future or as the Chiari list. This journal is one of many coping mechanisms I use on a daily basis.

Any regular reader will know coping is a huge part of my life. I define it as actions directed toward minimizing the effect of my symptoms on my life. Sometimes, it means doing things meant to decrease unpleasant symptoms like taking medicine. It can mean taking the time to do nothing in the form of a nap. Oddly enough, it can even mean doing things that will make my symptoms worse in the short term. In those cases, the benefits outweigh the increase in symptoms.

Cleaning the bedroom was part of living my life. It might help avoid a conflict with family but it certainly will be more pleasant to wake up to a cleaner room. The overall process is moving along alright. I'm going to end this entry here because I'm feeling more and more nappy by the moment.