Good one, Kev.
Go ahead, read the article for yourself. If the link is broken, which may happen, please google the article to try to track it down, and email me to see whether I can track it down.
I particularly like this quote: "One of her clients, Dowdall said, would receive an injection on a Friday that would leave her with flu-like symptoms Saturday and Sunday, then go back to work on Monday. "What kind of life is that?" she said."
I think she's talking about Avonex. There are currently four drugs available to treat Multiple Sclerosis: Copaxone, Rebif, Avonex, and Betaseron, often abbreviated to the CRABs. Avonex is the one that gives flu side-effects. They all have side-effects, of course. (There were for a brief period this year five drugs for MS, but the side-effects caused by the fifth one, Tysabri, included death. But never mind, they've figured out what causes that, so scuttlebutt says that you should look to see Tysabri released again by the end of the year under another name. Just so you won't be "fooled".)
A lot of MSers go cold-turkey without any of these drugs. But research has shown that they reduce the amount of brain damage, and I'd rather have side-effects than risk more holes in my brain. That's a personal choice, and I won't try to persuade you.
I chose Avonex because it is weekly. It seems to be working for me. I get a nurse at a local clinic to inject me because I am a wuss when it comes to intramuscular injections. They close early on Friday, so I get the shot on Thursday at 4pm.
So my particular version of the story is that I get an injection on Thursday that leaves me with flu-like symptoms on Friday and Saturday, then I have to go to work on Friday and try to act like I don't feel bad so I can keep my damn job and the medical insurance that goes with it, when in fact I just want to curl up in bed like MOST people do when they have the flu. And I have to listen to my wife carping about how I no longer seem involved with my family.
What kind of damn life is that?
Mine.
Why do I feel like Conan the Barbarian chained to the Wheel of Pain? Because I am. It sucks.
Avonex is a kind of interferon called beta interferon and it is definitely interfering with my lifestyle. It's bad enough that I get MS, but I have to put up with this flu crap also. Hence the title of this section, Interferon with My Lifestyle.
A cellphone contract is a good metaphor for my lifestyle. Like everybody else, I initially signed up on the Singles Plan, with plenty of free minutes and no roaming charges, but the connection fees were too expensive and I got tired of constantly having to shop around for new contracts. Eventually I found a service provider that I liked and signed up for the Family Plan because it promised that it would have more rollover minutes and better reception than the next guy, and I would be more likely to get a connection.
But after a while the hidden costs kicked in, the bills started to pile up, the hardware began to get a bit old and scratched up, static started to increase, and reception was no longer as good as it used to be. Now I find myself window shopping for a fresh shiny phone with all the hot new features.
But I know that if I get a new contract, I'll lose all the rollover minutes I've accumulated. I'll have to learn a whole new system. Plus I know I'll never use all of new features and I'll miss some of the old ones. The old hardware may have gotten a little klunky with age compared to all of the sleek little things you see in guys' hands on the street these days and the batteries may take longer to charge up, but at least it's dependable.
Let's just say I subscribe to the ice cream theory of life. I ordered Passionfruit Sorbet, but what got delivered was Vanilla. Now all the ice cream store seems to have is Rocky Road.
I think I need a beer.
To get back to Kevin's article, it is unusual in that it doesn't have the usual upbeat stinger at the end. Nobody says any of the annoyingly trite aphorisms about MS, such as "I have MS but it doesn't have me" or "MS isn't going to stop me".
Depressing, isn't it?
