Understanding drugs

October 20, 2011

A friend was trying to comfort me.  She suggested that maybe there would be a new drug treatment soon.  I said there wouldn’t be because, well, there won’t be.

The process is slow.  If a scientist comes across some great discovery today, it will be many years before it is a drug that I could take.  And of course, even then, my doctor may not want to prescribe it or my insurance may not cover it.  But first there needs to be a drug that could help, and there just aren’t very many of those.

It was reassuring to see this article in the newspaper the other day.  Sometimes, like with penicillin, there are fortuitous accidents.  I don’t know about you, but I really don’t want to wait around and hope that someone gets lucky.  A lot of medications are used off-label, meaning they were developed to treat one thing, and ended up working well for something else (think: Viagra.)  And then there are the meds that are being used as they were designed.  I suppose I could do some research to figure out how many of these exist now, but I’m too tired or too lazy or maybe both.  The point is, there are a lot of medications that are not being used as they were designed.  That’s ok, but wouldn’t it be nice if it didn’t have to happen that way, because drug interactions were so well understood that scientists could design medications to treat any condition they chose?

That’s the dream.  Reading this article, it’s good to see that some people are pursuing this approach, and I sincerely hope they can make it work, and soon.  Now I know that doesn’t mean I’d get a drug that would help my conditions specifically.  I’m sure these methods would be used to treat more common illnesses first.  Still, after they treat cancer and AIDS and so many others, maybe, one day, they’ll get around to mine.

There are limited resources, and time continues to alternately crawl and fly by, but it’s encouraging to see progress like this.  Throwing money at research isn’t enough.  Politicians and argue forever about how to allocate funds.  At the end of the day, though, it’s about being smart.  Think about how much farther the dollars would go with greater understanding of the human body.  Think about what could be achieved!

 

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Leave a Comment » | Educating, Expectations, Frustration, Isolation, Kindness, Medication, Pain, Politics, Rants, Raves, Support, Symptoms, Unpredictable | Permalink
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Cinnamon and nutmeg

October 19, 2011

Limitations are frustrating.  I can elaborate and justify and defend, but at the end of the day, this statement is simply true: limitations are frustrating.

I could write a long post right now about the many things I wish I could do but can’t.  I could write about the things I used to do but can’t.  I could write about the things I thought I’d still be able to do but can’t.  And at the end of the post, we’d all be depressed.  I’m sure I’ll write that on a different day, but not today.

Today I’m not focusing on the fact that I have been in my apartment all day because I can not currently work full time at my job.  It’s true, but I’m not focusing on it.  Instead, I’m thinking about how glad I am to have spent all day indoors while it’s been raining outside (and I’m sort of wishing I didn’t have plans to go out in about an hour, since I’ll probably get soaked.)  It’s cool out, which is great for my joints and fatigue and nausea, so I’ve kept the heat shut off and the windows cracked open.  A couple weeks ago I went apple picking, so today I made another dent in the huge pile of apples by doing some baking.  With the oven going, I threw the windows open wide.  The rain was loud, the wind brisk, the oven keeping the apartment from getting too cold.

Ok, so I can’t work.  I can’t work but I can bake (a skill I didn’t even have a few years ago!)  After all the baking, I figured I should take the trash down to the basement (glad I can still do that!)  When I returned, my apartment smelled amazing.  While I was baking, I suppose I just got used to it.  But stepping away made it so obvious: it smells of cinnamon and nutmeg.  It smells like autumn in New England should smell.  I can’t expend too much energy, but I can bake and read my book and knit a scarf-in-progress and take out the trash.  Some days this wouldn’t be enough, but on this rainy Wednesday, it feels just right.

 

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The real test

October 16, 2011

“What do you want to be able to do?”  

Several years ago I entered physical therapy.  This was definitely not my first time in PT, but it was my first time with someone who was able to help.  Early on, she asked what my goals were, what I’d like to be able to do in every day life (an excellent approach, by the way.)  I had recently become an auntie when my close friend had a baby.  My answer was simple: I wanted to be able to hold the baby.

Now, years later, I am an auntie to many more little ones.  While I can no longer hold the big ones (they’re getting so big!), I am able to pick several of them up briefly, just enough to get one out of a crib and such.  I didn’t think I’d be able to do that.  And I can hold the babies.  Today I held the littlest, not even five months old, and I wasn’t worried.  I had some pain, but very little.  And when she jerked to the side, as babies like to do, I simply adjusted my grasp.  I didn’t worry for a moment about dropping her – that simply wasn’t going to happen.

There are many ways to look at health status.  I could look at my inability to work, or my frequent fatigue.  I could consider my pain and my frustration.  Many days I focus on those things.  But today is different.  Today I am thinking about holding that precious little girl, how special it is, and how amazing it feels to do something that just a few years ago seemed impossible.  There are many things that I want to do in life.  For a little bit, while holding that little girl, the rest was all irrelevant.

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Little things are really big

October 15, 2011

I came across this article in the newspaper this morning, about a local grocery store that is the second in the country to add Braille labels to its shelves.  I never noticed the lack of Braille before, but as soon as I saw the headline, I wondered why it’s taken so long to happen.

Braille labels probably seems like a small thing to many people, but for those who need it, it will make a big difference.  But then, that’s true of so many things, isn’t it?  Audible walk signals at intersections, smooth curb cuts, railings on staircases, ramps…. people who don’t need them just pass right by, but for so many others they make life not only easier, but manageable.  It makes me wonder what else we could, and should, be doing.  Did you notice that the Braille grocery store labels came about because of a first grader?  It’s that young perspective that we all need to have, to question everything, to propose solutions.  Maybe we need to get a group of children together to fix the inequities.  Either way, we definitely should not settle for the status quo.  We need to continue to change things for the better.  There’s always room for improvement, so let’s find the most inefficient areas and improve them.

I’m as guilty as anyone of sitting back and letting others do the work.  I contribute in small ways, but I haven’t stepped up in a big way, at least not lately.  I think it’s time for me.  What about you?

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