Rochester is a long trip for me. First, across the Pacific to from Australia to Los Angeles, then to Chicago. Chicago airport is huge, and a long walk in a hurry from one section to another - having come in on a "regular" 737, but the short trip from Chicago to Rochester is on American Eagle, who fly these little 50-odd seater commuter planes to and from small towns all over the USA.
I can tell very quickly that I'm in the midwest: the flight attendant is fiftysomething, with big blond hair, and a smile that would need to be surgically removed. She's from "round these parts", and is based in Chicago and does these little flights back and forth all day. Someone once told me - always be concerned about a veteran private (in the army): if they were any good, then by that age they would either be a general, or dead!
For a small regional airport, it takes quite a while to get my luggage. The shuttle bus takes a bunch of us around the local hotels, and the driver has an old-fashioned courtesy that's refreshing. My hotel is one of several connected via a superb subway system to all of the Mayo clinic and associated hospitals.
Tuesday, November 3, 2009
Saturday, October 24, 2009
Mayo on my mind
Leaving for an assessment at the Mayo clinic in a week, and needless to say it's been on my mind a fair bit. I have no idea what to expect of the process, let alone the outcome. House used to be one of my favourite shows, but lately I cringe at all the poking and prodding (mostly the poking), and now wonder if I am about to become the "special guest star" on an episode.
I didn't have my scheduled treatment a week ago as suggested by the doctor at the Mayo. Definitely didn't miss the experience! The finger strength hasn't degraded quite too badly, which is good.
A few weeks ago, a couple of fingers on my right hand felt sore and slightly inflamed. It felt muscular, but I didn't hurt them, and I have no idea where it came from. It could be anything, but of course my first thought is that it is a new symptom. My neuro acknowledged that there is slight inflammation, but said it isn't necessarily linked. In the meantime, the symptom remains, and hasn't gotten better or worse.
I didn't have my scheduled treatment a week ago as suggested by the doctor at the Mayo. Definitely didn't miss the experience! The finger strength hasn't degraded quite too badly, which is good.
A few weeks ago, a couple of fingers on my right hand felt sore and slightly inflamed. It felt muscular, but I didn't hurt them, and I have no idea where it came from. It could be anything, but of course my first thought is that it is a new symptom. My neuro acknowledged that there is slight inflammation, but said it isn't necessarily linked. In the meantime, the symptom remains, and hasn't gotten better or worse.
Sunday, September 27, 2009
Reflecting on a New Year
Having celebrated Jewish New Year last week, and on the eve of the holiest day in the Jewish calendar, Yom Kippur, I have been relfecting on the last twelve months in my life in the context of my condition. I read somewhere, that someone was asked: "how did your Jewish New Year go?", and he replied: "I'll tell you at the end of the year". We hope and pray for a good year, and that we be inscribed and sealed in the "good book", however the only test of this is time.
On that basis, my Jewish New Year of 2008 didn't go particularly well. Twelve months ago, I could not have imagined myself at this point. My life at present is burdened with uncertainty about the future, regarding my medical condition and several other major issues. The emotions are sitting at the surface just about to burst forth in uncontrollable tears (and they do, every now and then). They need an outlet, and this is a great time of year for that. Hopefully I can look back in another twelve months at a more positive year on all fronts!
I've started planning my trip to the Mayo in November. The doctor has recommended that I stay off the IVIg juice so he can see me without its influence. That means I will be without it for about eight weeks instead of the usual four. The thought of that doesn't make me feel very excited. On the other hand, I want this process to uncover some new insights, so I have to give it every chance of that.
On that basis, my Jewish New Year of 2008 didn't go particularly well. Twelve months ago, I could not have imagined myself at this point. My life at present is burdened with uncertainty about the future, regarding my medical condition and several other major issues. The emotions are sitting at the surface just about to burst forth in uncontrollable tears (and they do, every now and then). They need an outlet, and this is a great time of year for that. Hopefully I can look back in another twelve months at a more positive year on all fronts!
I've started planning my trip to the Mayo in November. The doctor has recommended that I stay off the IVIg juice so he can see me without its influence. That means I will be without it for about eight weeks instead of the usual four. The thought of that doesn't make me feel very excited. On the other hand, I want this process to uncover some new insights, so I have to give it every chance of that.
Monday, August 17, 2009
too much juice?
Well, so far, this latest experiment with my medication hasn't been a roaring success. On the first day, the neck soreness was quite severe, accompanied by a sensitivity to light, and that general awfulness feeling (my wife says "you look green"). Fortunately, not much in the way of a headache. On the second day, it wasn't quite as bad. I had the weekend to rest and take it easy, although this morning I woke up with an awful headache. This was probably because of the howling winds that didn't allow me to get the decent night's sleep that I need.
It's quite evident that the juice and I just don't get on well. What I can't stand is that the nasty side effects are very quick to show up, but the positive effects of the treatment usually don't kick in for about a week. That makes me very despondent every time I go in for some juicing. Especially when I wake up in the morning feeling like crap and read puff pieces in the newspaper about little Michael and how IVIg revs him up just like a double espresso. I wish the stuff worked as well for me!
Wednesday, August 12, 2009
even more juice
Blogger has been playing up lately - very annoying!
I've been tracking my hand strength for the last few months, using a "rig" consisting of a paper cup with some string attached, and a series of scientific weights. A couple of times a week, I measure how much weight each of my fingers can hold up. As you can see from the pretty picture, there are spikes, and these roughly coincide with the IVIg treatments - they seem to have their maximum effect around a week after each treatment.
The legend is a little small - the blue line at the bottom is my right index finger. There are a few interesting things going on here. Firstly, despite the treatment, the best it gets is for my right finger to have not much more than 20% (compared to the left, and the other fingers). I have found this quite disappointing. The spikes are also quite modest. Finally, the pinkie (black) is one of the stronger fingers, and this is uncommon in MMN.
So given that we are reasonably on top of the side effects, my neuro has decided to up the juice. We had been doing 0.78 g/Kg over two days as a maintenance dose, which is already at the high end. The next dose (over the next two days) will be 1.06 g/Kg - an increase of 36% or an extra hour and twenty minutes connected to the juice machine (can you tell I'm a numbers guy?).
I really shouldn't have written about this - all it's done is make me think about how long the treatment is and what I will do. Lately, I've been relaxing more during the infusions - nodding off for a nap here and there because of the phenergan. All of that certainly seems to have helped minimize the side effects. Will have to line up some extra videos to watch or maybe a book (although reading one-handed while lying in a bed is a little difficult).
And in other news, Mayo have responded in the affirmative, and I'm booked in for November. More about that in another post.
I've been tracking my hand strength for the last few months, using a "rig" consisting of a paper cup with some string attached, and a series of scientific weights. A couple of times a week, I measure how much weight each of my fingers can hold up. As you can see from the pretty picture, there are spikes, and these roughly coincide with the IVIg treatments - they seem to have their maximum effect around a week after each treatment.
The legend is a little small - the blue line at the bottom is my right index finger. There are a few interesting things going on here. Firstly, despite the treatment, the best it gets is for my right finger to have not much more than 20% (compared to the left, and the other fingers). I have found this quite disappointing. The spikes are also quite modest. Finally, the pinkie (black) is one of the stronger fingers, and this is uncommon in MMN.
So given that we are reasonably on top of the side effects, my neuro has decided to up the juice. We had been doing 0.78 g/Kg over two days as a maintenance dose, which is already at the high end. The next dose (over the next two days) will be 1.06 g/Kg - an increase of 36% or an extra hour and twenty minutes connected to the juice machine (can you tell I'm a numbers guy?).
I really shouldn't have written about this - all it's done is make me think about how long the treatment is and what I will do. Lately, I've been relaxing more during the infusions - nodding off for a nap here and there because of the phenergan. All of that certainly seems to have helped minimize the side effects. Will have to line up some extra videos to watch or maybe a book (although reading one-handed while lying in a bed is a little difficult).
And in other news, Mayo have responded in the affirmative, and I'm booked in for November. More about that in another post.
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