My favorite MS blogger on the planet, Jeri, posted a thought provoking brain dump the other day. She put into words something I've has issues with for quite some time. In a nutshell: why do so many people with MS seem to relish negativity?
Like Jeri, I was also a pretty active contributor to an MS forum. In fact, this particular one I'm going to bitch about is where I found her, but I don't want to wander off topic...
The day of the announcement that the FDA had approved the drug I've been lab-ratting for the past 18 months (Gilenya), a friend of mine said, "Hey are you going to put that on your MS forum?" (My forum? Where's my revenue?) Actually, I had thought about it for about a nanosecond and already decided that no I wouldn't. I knew a discussion would immediately follow, decrying the drug as "too unknown", "too new", "too many side effects", blah, blah, blah. I was not going to be the poster that began the discussion! No surprise, someone else did.
This particular forum has a search box where one can type a keyword and get returned every. single. post. having the word in it. I will guaran-damn-tee you, none of these naysayers did that. If they had, they would have seen hundreds of posts, going back several years, written by folks like me and Jeri and many others who detailed our individual experiences as lab rats for Gilenya. They would have the ability to hear lots of opinions - good and bad - from patients who actually took the flipping drug.
Instead, they choose to bad-mouth it by simply reading the patient information pdf on Gilenya's web page. Well honey, have any of you read the patient information things that come with every prescription? They often read like a horror novel (novella?). I'm amazed that anyone would take any prescription med of any kind after reading that shit.
But we do take prescription meds, don't we? Because we want help and relief so badly from whatever ails us, we are willing to risk (potential) side effects.
So, my message to the naysayers is this. If you don't think a drug is right for you then don't take it, I don't give a shit. And if questioned, simply say, "I don't think it's right for me." But if you go on to condemn something of which you have no first-hand knowledge or experience, then do me a favor? Shut the fuck up.
September 29, 2010
September 20, 2010
Germy germs
So on Friday the husband gets home from work around dinner time and gives me a kiss then says, "We shouldn't be kissing right now, Mark was out sick today and I think he passed me something."
Really? Share that after the kiss? Wouldn't before have been a little smarter? And why are you kissing Mark?
Of course, by bedtime last night I could feel a sore throat coming on. "Honey," I said "how long was Mark sick before he called out? Did he say anything about his throat being sore?" The husband replies, "I don't remember but my throat was bothering me most of last week."
Really? And it didn't dawn on you until Sunday [when I had to ask] to say anything?
You know where this is going. This morning the throat was sore and dry, accompanied by the sniffling and coughing that are trying to take up residence in my head and chest.
I guess it's just being a Monday...
Really? Share that after the kiss? Wouldn't before have been a little smarter? And why are you kissing Mark?
Of course, by bedtime last night I could feel a sore throat coming on. "Honey," I said "how long was Mark sick before he called out? Did he say anything about his throat being sore?" The husband replies, "I don't remember but my throat was bothering me most of last week."
Really? And it didn't dawn on you until Sunday [when I had to ask] to say anything?
You know where this is going. This morning the throat was sore and dry, accompanied by the sniffling and coughing that are trying to take up residence in my head and chest.
I guess it's just being a Monday...
September 17, 2010
I'm baaaaaaaaacccckkkk!!!!
Well ok, I didn't really go anywhere, I've just been feeling really good and able to do a lot of cool, fun stuff. It's kind of almost . . . oh, I don't know . . . having a LIFE or something.
Back in February or March I mentioned that I'd gone back to drinking Reliv shakes after many years off. They were first introduced to me very shortly after my MS diagnosis [twelve years ago holy shit] and I didn't really see how they were benefiting me. They certainly weren't hurting me but for the price I really wanted to feel something drastic. Now that I've been feeling so not so good for a couple of years now I figured what the hell, I'll give 'em another try.
Well. My appetite is reduced, my fatigue is basically a non-issue, my depression has lifted [didn't realize just how depressed I was until I wasn't anymore], my vision is sharper, my legs are stronger, I'm getting biceps [!], my skin looks great, the circles under my eyes are diminished, no more PMS and my brain power is returning.
One significant side effect, though. My nails and hair grow like gangbusters. My husband keeps absconding with the nail trimmers and I have to shave my legs every frikking day now.
Life is good. Busy. But good. I even wear out the dogs.
Back in February or March I mentioned that I'd gone back to drinking Reliv shakes after many years off. They were first introduced to me very shortly after my MS diagnosis [twelve years ago holy shit] and I didn't really see how they were benefiting me. They certainly weren't hurting me but for the price I really wanted to feel something drastic. Now that I've been feeling so not so good for a couple of years now I figured what the hell, I'll give 'em another try.
Well. My appetite is reduced, my fatigue is basically a non-issue, my depression has lifted [didn't realize just how depressed I was until I wasn't anymore], my vision is sharper, my legs are stronger, I'm getting biceps [!], my skin looks great, the circles under my eyes are diminished, no more PMS and my brain power is returning.
One significant side effect, though. My nails and hair grow like gangbusters. My husband keeps absconding with the nail trimmers and I have to shave my legs every frikking day now.
Life is good. Busy. But good. I even wear out the dogs.
July 04, 2010
Noteworthy events
Some little things that deserve to be mentioned:
June 19th of this year marked the 12th anniversary of my MS diagnosis. According to some 'standards' I should be using a cane by now. HA! Not this chicky! Yet another example of my non-conformity, of which I am proud.
June 26th was my six-month wedding anniversary.
Remember Agnes, the rescue kitty? Well, she has adopted us as her own, which is good for her because nobody else wants a 15 year old cat. She's very affectionate without being obnoxious about it. Around the new year Bo (the husband not the dog) decided that she was cool and did not have to stay caged up all the time. Nowadays Agnes has free run of the house until bed time when she has to go back into the condo overnight. With cats being the nocturnal beasts they are, letting her wander freely around the house all night means the other animals don't get any sleep. Which in turn means we humans don't either. And mama (me) needs her sleep!
OK well, it's July Fourth. Time to get ready for the Independence Day bacchanalia. Have fun and be safe!
P.S. Caught "Zack and Miri Make a Porno" on cable last night. I was pleasantly surprised at how much I enjoyed it. I knew it couldn't totally suck because it came from the mind of Kevin Smith (Dogma is one of my favorite movies of all time), but it was actually better than I'd hoped it would be. Terrific soundtrack, too! **Note to brother and SIL: You guys will not like it.
P.P.S. Also watched something called Choke. Offbeat for sure, but had quite a lot of humor in it. I thought, anyway. **Note to brother and SIL: quite sure you wouldn't like this one either.
June 19th of this year marked the 12th anniversary of my MS diagnosis. According to some 'standards' I should be using a cane by now. HA! Not this chicky! Yet another example of my non-conformity, of which I am proud.
June 26th was my six-month wedding anniversary.
Remember Agnes, the rescue kitty? Well, she has adopted us as her own, which is good for her because nobody else wants a 15 year old cat. She's very affectionate without being obnoxious about it. Around the new year Bo (the husband not the dog) decided that she was cool and did not have to stay caged up all the time. Nowadays Agnes has free run of the house until bed time when she has to go back into the condo overnight. With cats being the nocturnal beasts they are, letting her wander freely around the house all night means the other animals don't get any sleep. Which in turn means we humans don't either. And mama (me) needs her sleep!
OK well, it's July Fourth. Time to get ready for the Independence Day bacchanalia. Have fun and be safe!
P.S. Caught "Zack and Miri Make a Porno" on cable last night. I was pleasantly surprised at how much I enjoyed it. I knew it couldn't totally suck because it came from the mind of Kevin Smith (Dogma is one of my favorite movies of all time), but it was actually better than I'd hoped it would be. Terrific soundtrack, too! **Note to brother and SIL: You guys will not like it.
P.P.S. Also watched something called Choke. Offbeat for sure, but had quite a lot of humor in it. I thought, anyway. **Note to brother and SIL: quite sure you wouldn't like this one either.
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