September 29, 2010

I'm so glad I'm not the only one (some cussin' in here)

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 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...

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.