Sharing… or not

October 23, 2011

I have to admit, I was feeling totally uninspired yesterday.  Sure, I could have written something.  I had plenty of topics.  I just didn’t feel like writing about any of them.  Then last night, I found myself getting plenty of inspiration.

I want to a small party where I knew some of the guests and didn’t know others.  Of course, a common question is, “What do you do?”  I had no problem answering that when I was simply unemployed.  For some reason, though, answering it now feels awkward.  I have a job, but I’m not working at it.  I was saying something about Friday and not being at work, and someone questioned me about it.  How do I answer?  My friends know what’s going on, but I don’t feel like discussing it with acquaintances or strangers.  Besides, the followup question would be to ask what health problems I have, and this is a party.  I really don’t want to talk about it at a party.  So I was vague.  Still, it felt awkward.

More awkward than that was the person who asked what allergies I have that cause me to ask about every ingredient in every dish.  I finally told her I have IBS.  It turns out, she has IBD.  Ok, similar but different.  She then proceed to tell me all about a book she had just read, and the diet it described.  Oh boy.  At least she has a similar condition, so that’s better than when people with no idea what they’re talking about decide to give advice.  But again, this is a party.  I don’t want to talk about symptoms and treatments.  I know she meant well, but it was too much.  I kept trying to change the subject, and she kept bringing it back around.  I think it’s worse when the person is well-meaning, because I don’t want to be rude.  Still, this is my life and my body and I really don’t need every Tom, Dick, and Jane advising me on it.

It was an interesting evening.  I had fun for the most part, but it was a good learning experience, especially for my new work situation.  In terms of the bigger picture, though, it was a huge success.  I spent over an hour baking, then rested, and was able to go to the party and feel good.  I was in pain from standing so much while we all talked, but I was able to do it.  I got down on the floor a bunch of times to play with the new puppy.  I didn’t have to leave too early.  Yes, this was definitely a successful evening!

Leave a Comment » | Educating, Frustration, Insensitive, Intrusions, Isolation, Job, Kindness, Rants, Raves, Symptoms | Permalink
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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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Finicky food “facts”

October 13, 2011

What can’t you eat?  That’s always a fun question.  (By the way, that was sarcasm.)  I love that people care enough to ask, but that doesn’t mean that I know how to answer.  I may be able to each something one day, but not another.  Or I may be able to eat something if it’s paired with the right additional foods (often carbs will help keep my stomach settled) but I can’t eat it otherwise.

Some friends get frustrated with me over this.  They want to work around my food issues, so when they invite me to dinner, they ask what I can and can’t eat.  When I’m vague and suggest that I’ll bring my own food, they think that I’m just trying not to trouble them.  I suppose that’s true in a lot of ways, but it’s also that I just don’t know how to answer.  In the past I’ve tried to give people lists of my
restrictions, but then I’ll forget to mention something, or I’ll be having a bit of a flare, and I won’t be able to eat the lovely meal that they prepared with me in mind.  Then I feel even worse.  I usually just ask them to let me know what they’re planning to prepare, but again, it’s dicey.  They may add an extra ingredient without thinking about it, or they may forget to mention something, and suddenly I can’t
 eat the meal.  Why can I eat brie but not feta?  I have no clue.  Why does Thai food make me sick, while all other Asian foods I’ve tried have been fine (and delicious!)?  No idea.  Why does eating dessert one moment make me sick, but 20 minutes later it’s fine?  I can only guess.

In the end, it’s all a guessing game.  Luckily, I’ve gotten better at guessing over the years.  But try explaining that to a dinner party host.

 

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Leave a Comment » | Educating, Expectations, Frustration, Isolation, Kindness, Limitations, Pain, Rants, Raves, Symptoms, Thoughtfulness, Unpredictable | Permalink
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The perfect gift

October 3, 2011

It’s carnival time!  I’m excited to have this post on Chronic Babe’s carnival about the perfect gift.  This is a great carnival, so please pass the word.

Leave a Comment » | Educating, Expectations, Kindness, Limitations, Rants, Raves, Support, Symptoms, Thoughtfulness | Permalink
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