Quando Dio vuole castigarci ci manda quello che desideriamo

by Michael S. Kaplan, published on 2006/07/01 01:31 -04:00, original URI: http://blogs.msdn.com/b/michkap/archive/2006/06/30/653149.aspx

(I suspect that there will be nothing technical in this post)

I am going to ramble a bit so if that sort of thing bothers you then go ahead and skip this post. :-)

My Italian is less than perfect, though I believe that the title of this post roughly translates to "When god wishes to punish us, our prayers are answered."

I like to keep this in mind sometimes. It keeps me from being tempted to pray for anything....

It was probably a little under three decades that I first "got" MS, and it has been a little over a decade and half since the first stab at a diagnosis took place. And the way I have felt about the disease has certainly changed quite a bit over that time. But some things have stayed pretty consistent.

For example, it generally does not depress me. Maybe it just my cynical nature (one of my really good friends in high school, she used to point what a cynical bastard I was, even back then), but as diseases go there are lots that can be a lot worse. I have had friends pass away from accidents, a lover pass away from a brain tumor, and I have a couple of friends now who have terminal illnesses. So I figure who the frak am I to get depressed about my lot in life, right?

And also, there is the fact that I don't mind new symptoms. They have often been interesting, have usually been weird, and have occasionally been fun. Although I never had a twin, I understand a bit about the whole "language of twins" thing when I am talking to someone else with M.S. about this thing that not even a good neurologist can always grok as well as someone who is going through it.

But there are other things that have changed over the years.

Like exacerbations.

At first I hated them, since they were a bit more involved than some odd symptoms, and could sometimes hit me hard. They were a psychological reminder that the occasional weird feelings were not like some sort of high without drugs, they were a disease.

Then there was a period of time where my ex called them exasturbations and I never had the heart to correct her. For one thing, it is never good to make the person you are dating feel foolish, and for another having her tell me that it was exasturbation was a normal part of my life? It just made me smile each time and (immature geek that I am) it never got old -- I would sometimes not mind getting an execerbation because it would mean I'd have to bite my tongue to keep from smiling when she looked at me concerned and asked if I was having an exasturbation....

I think I waited a few years before I actually said anything. I probably ought to grow up a bit, but I still laugh when I think about it.

As things stand now now, when I sit somewhere in between relapsing/remitting-secondary progressive and primary progressive M.S. where I don't know whether to blame the lack of exacerbations on the fact that I am doing well four doses into a Novantrone course or that I have finally moved into what the Novantrone docs like to call worsening M.S., a stupid name given the fact that the one thing all forms of M.S. do is worsen to some degree.

Anyway, before each Novantrone dose the folks in the hospital always gave me a Zofran pill for nausea, though I hadn't actually ever felt nauseous. My neurologist even gave me a prescription for it which I had never used since I just didn't feel like throwing up.

Though this last time, I was feeling a little nauseous, so I was taking the Zofran. Three times a day. I always waited until I was feeling a little nautious again. I actually had to refill the prescription that I was just a month away from having the pills expire.

I began wondering if one of the side effects of Zofran was nausea? I meen, its not as funny as saliva causing stomach cancer (only when it is taken slowly over a long period of time!), but still it would be kind of ironic, in the Katie sense, if you know what I mean.

And I was feeling some disequilibrium again. My long time M.S. symptom. I ended up calling my neurologist between the two problems, and she called my back pretty fast (I think it's because I don't complain much, so anything I call about must be serious?), and we decided that they really were unlikely be to related. The nausea would hopefully go away soon, and after I described it at greater length, that the disequilibrium may be an actual exacerbation.

Somehow it made me feel good. The knowledge that I was perhaops still in that secondary progressive category. Where the uncertainty of not getting one was somehow worse now. Where it was better to know the M.S. was out there, in the background somewhere.

I haven't been praying in the past to not get exacerbations, and I don't pray now to get them. But I think now about how if I had been doing so, and if she had been listening, and if she decided to answer the prayers, that it would really have been a punishment of sorts. I want it out of my hands so I can react to it without fear that my desires have actually influenced the course of the disease.

I had a friend a few years back who I would visit in Orem, Utah. I once went with her to hear one of the quorum of the twelve apostles of the LDS chuch speak, and I remember him talking about how he used to find himself praying for little things like finding a good parking spot and then saying a prayer to give thanks afterwards. I remember my friend saying that she understood why she was having such a hard time getting her prayers answered -- God was too busy finding Jeffrey R. Holland his parking spaces!

Of course she was joking. But I remember thinking later about how disturbing it would be to feel like prayers were answered that immediately -- especially in light of that Italian proverb in the title of this post.

It is probably better for me that there is some distance, I think. Especially because anything I'd ask for in relation to my disease would almost certainly be worse for me -- there is never a time when an exacerbation is a good thing, truly there isn't. But if I never have another one again then technically I would have primary progressive M.S., which isn't all that good either from a morale standpoint. So either of them can be a punishment, and it might be good to keep the whole thing out of the realm of prayer, all things considered.

Perhaps this is not very logical. Sorry about that, it seemed much clearer in my head than it looks now that I am reading this post.

I'll post about something interesting tomorrow, I promise. :-)

# Michael S. Kaplan on 1 Jul 2006 2:45 AM:

Special thanks to Kim Bastin for correcting my Italian spelling and bringing my translation even closer to accuracy (I mentioned that my Italian was not so good, didn't I?) :-)

# Nick Lamb on 1 Jul 2006 3:55 AM:

Yes, nausea is often listed as a known side effect of anti-nausea drugs*. The actual mechanism of nausea is complicated and so patients will continue to be amused by this for years to come. If I remember rightly from my chemotherapy days there's a psychological component, and people who take anti-nausea medication just prior to doing something unpleasant (like say, chemotherapy) will eventually associate the two and feel nauseous not from the anti-nausea drug (which hasn't yet taken effect) but from the expectation of the nastiness to come.

In my last round of chemotherapy this happened, after more than a decade without being sick for any reason I threw up 30 seconds after taking my anti-nausea pills, and only then did they offer me the IV version of the drug which sidesteps this (both through novelty and by acting faster). I'm informed by professionals who ought to know that skipping the anti-nausea altogether doesn't work, patients throw up everywhere and it's distressing for everyone.

The rest of my side-effects were pretty tolerable with practice, I know what you mean about new symptoms being interesting rather than distressing (radiotherapy in particular was basically just very cool, easier than shaving and hair cuts, shame about the long term health risks). Of course I can't appreciate your full situation because I always had an excellent prognosis. This was only ever temporary for me (one way or another) and it's with you for the rest of your life.

* You can have the same fun comparing the side effects listed in the patient information leaflet for the "morning after" pill with the symptoms of the alternative, pregnancy.

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referenced by

2010/05/30 Not everyone wants me to do The Right Thing™ + Ampyra update/irony...

2008/06/13 the front of my mind (by which I mean the back of my mind) is on the middle of my mind

2007/12/23 Now experiencing what is *almost* a pleasant exacerbation

2007/10/23 I'm not screaming though it seems I may be the only one...

2006/12/04 Is it a bird? Or a plane, perhaps? No, it's my neurologist!

2006/09/13 Michael's Brain?

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