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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Contrasting my charmed life vs. my CI life

October 12, 2011

I suppose I’m one of those people who always had it “easy.”  It’s not that I’ve gotten everything I ever wanted, but somehow things have generally worked out in a good way for me.  I didn’t get into every graduate school I applied to, and I was wait-listed at the school I ended up attending.  Then again, I ended up at one of the top 5 programs in the country, so even if I didn’t get in immediately, I did get in.  See?  Somehow, it works out.

Now, that isn’t to say I’m exactly where I want to be in my life.  I figured I’d be married and have kids by now.  I’m not married, and kids are pretty unlikely (between my age and my health, I doubt I’ll have any, even though I still want them.)  Still, I live in a nice (though not luxurious) apartment, I’ve had good jobs, and as I’ve said before, I have fantastic family and friends.  Things have come “easy” to me.  Some were easier than others.  I grew up in a middle class family.  I wore some hand-me-downs and we didn’t take exotic trips, but I never wanted for anything, I didn’t have to get a job during the school year, and my parents paid for college.  Occasionally I got some bad grades in school, but mostly I got As and Bs.  I failed at sports but excelled at many other extracurriculars.  Life always seemed to work itself out in my favor.

This was running through my mind today as I was thinking about why my current work situation is so frustrating.  It hit me then: that other stuff was separate from my health problems, but for the first time, now I really can’t separate the job stuff from the health stuff.  Now, it’s all intertwined.  Now, I have to admit that one affects the other.  So what happened?

The pain started when I was in junior high school, but somehow I was able to manage it.  Maybe that was part of my charmed life?  More likely, it was part of the stubbornness I get from my mother’s side of the family.  I was determined to not let it slow me down, and for the most part, it didn’t.  The fatigue started in college, and that was harder to fight off, but somehow I did it.  Again, the stubbornness really paid off.  I worked hard, finished school, got jobs, had a social life, tried to balance everything.  The illnesses were always there, the frequent doctor appointments and experimental treatments never disappearing, but somehow it all felt more like background noise.

And that’s what changed.  The health issues have moved to the forefront.  I’ve lost my sense of balance.  I can’t no longer ignore or pretend.  This isn’t necessarily permanent, but right now, it’s how my life is.  The ease and charm are hiding in a corner somewhere, and I better hurry up and fix the health problems so I can get them back.  The CIs will never go away, but I want to go back to succeeding in life.  It will happen.  Just give me time.  Afterall, I’m incredibly stubborn.

 

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Losing family to my illnesses

October 11, 2011

Some people with chronic illnesses talk about losing friends due to the illness.  I can see how that might happen.

For me it was different, since my illnesses started at such a young age.  I was a child when the symptoms first started, and by the year following college they were affecting me in much bigger ways.  I didn’t lose any friends because I had the illnesses before I met them.  On the other hand, I’m certain that I’ve missed out on starting friendships and romantic relationships because of the illnesses.  I put up walls to avoid getting hurt, and ironically that probably ends up hurting me more.  Yes, have been people in my life who didn’t want to be around someone with health problems, but my guess is that I mostly pushed people way.

There’s one exception: a sibling.  She knew me before the health problems started.  Somehow, though, she’s less sympathetic than my friends.  She’s the only one who has ever questioned my truthfulness about symptoms.  She was once with me during a flare and was horrified by it.  For a while after that she was very understanding.  Then when she didn’t see any severe symptoms for a while (because I always try to hide them, even from family) she began to doubt me again.  I know that there has been some jealousy, but aside from that, I don’t understand why she isn’t supportive.  That isn’t to say that she hasn’t been supportive in the past; there have been times over the years when she has helped me out.  This time, she’s noticeably absent.

It’s been hard, but I finally decided to take a medical leave of absence from my job.  I told my parents in person, but emailed the rest of my family and some friends.  I couldn’t handle having the conversation over and over.  In the email, I asked people to respond by email instead of calling, since I needed some time to get a handle on things.  I got the most amazing, supportive emails.  Some made me laugh, one made me cry, all made me feel loved.  I have the best family and friends.  Sadly, almost as loud as the support was the silence from several people.  I don’t know if they are clueless or don’t care or something else.  I know they read the email.  And among them is this sibling.  She never responded.  How could she not respond?

Now, we’re not close.  Actually, we don’t get along all that well.  But whenever either of us has needed something, the other has been there for her.  I’m not asking her to do anything for me.  I’m not expecting any actions.  But I’m shocked that she didn’t even respond to my email.  How could someone be so callous towards their own family member?

There have been a few times over the years where we didn’t talk to each other.  We always knew we’d work out our problems eventually.  I always assumed that sooner or later we’d figure out a way to get along.  But this is unforgivable.  Maybe if this was the first incident I’d let it go, but I just can’t do it again.  She’s appeared to have resentment of my health issues for years and I’m just not going to put up with it anymore.  Life is too short, and I need to focus on my own problems, not on her problems with me.  I’m so thankful for the many supportive family members who have been unbelievable this week.  I’m so thankful for the many friends who are saying and doing all the right things.  If only my sister could do that.

 

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Aaaand….. START!

October 10, 2011

It’s funny how quickly things change.  After weeks of considering taking a leave of absence from my job, the time as finally come to do it.  Tomorrow is the first day that I will not be at the office.  I have many mixed feeling about it, but apprehension is definitely in there.

It has taken a long time for me to believe it, but I do know now that this is the right thing to do.  I need to do this.  What I don’t know is if this will work.  I’m so nervous about it.  It will take a lot of self control to not try and do everything at once.  I’m not sure how I’ll do it, but somehow I have to force myself to rest and relax for the first week.  That should be interesting.  I hope I can do it.  It feels like a lot of pressure right now.  I just hope it works.  Wait, did I say that already?  Wow, I really do need a break.

 

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