Making medical decisions by coin toss

April 20, 2012

Doctors no longer seem to be all-knowing gods to many of us.

My grandparents always did just what the doctor told them to do.  They trusted their doctor to be honest, knowledgeable, and infallible.

Fast forward many decades and things have changed.  A lot.  For one thing, there are the studies that suggest doctors lie to their patients.  They apparently do this to protect their patients, to save their feelings, but it doesn’t help with the trust thing.  Doctors are now overworked and dealing with lawsuits, insurance, and budget cuts.  In other words, they’re human.  The mystique is gone.  Even more, we have the internet now and can do a lot of our own research.  This helps us to realize that, again, our doctors are human.  They don’t know everything.

Now, I do think that a lot of my doctors are very knowledgeable and I trust them.  That, after all, is why I continue to see them.  However, I still find it difficult when I need to make a decision, and I have no one to help me make it.  I talk to my parents for advice, but I’m getting tired of that; I’m over 30, for crying out loud!  I’m not in a relationship, so I can’t turn there.  And anyway, these all just other laypeople (though my parents are very smart and knowledgeable.)  I can talk to my doctors, of course, but they won’t tell me what to do.  Sometimes they strongly hint at their preferred course.  Sometimes they say it outright.  But many times they don’t know what the right thing to do is.  Damn, they really are human.

I am now facing a small dilemma.  Should I continue my gluten-free diet, with its good effects but also possible negative ones?  Should I quit the diet and see if the negative effects go away?  But then the good effects might go too.  Should I try an over-the-counter med to see if that helps the symptoms?  But what if my body is still adjusting to the new diet?  It could be that I improve from the diet, but if I take the meds, I won’t know which is helping.  Or I can adjust my thyroid med dosage.  I’ve already filled the prescription.  This won’t help the nausea, of course, but it could help the fatigue.  But what if the diet just needs more time to work, and adjusting the thyroid med covers that up?  And I could have negative effects from changing the med dosage, too.  And these are just my top choices – there are even more options to consider!

It would be so easy to have someone tell me what to do.  It would remove this pressure that’s sitting on my shoulders.  But I have to admit, I’m glad when my doctors admit they don’t have the answer; it’s better than pretending otherwise.  Besides, I’m sure I’ll figure it all out eventually.

Does anyone have a coin I can flip?

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2 Comments | Decisions, Educating, Expectations, Frustration, Isolation, Limitations, Medication, Rants, Support, Symptoms | Permalink
Posted by chronicrants

Being treated like a child

March 30, 2012

“Remember, you don’t have to bring anything to the brunch.  No food, no flowers, just save your money and take care of yourself.”

I know my mother means well.  Her instinct is to take care of me.  But I’m getting sick of it.  And it’s not just her.

I appreciate that people want to help.  I really do.  It’s sweet.  But I’m an adult, and if I say that I want to bring something to a family brunch, then why stop me?  Everyone else is bringing something.  If I didn’t feel up to it then I wouldn’t offer, but if I want to contribute, why stop me?  A few years ago this made sense – my cooking was atrocious.  But now I can cook and I’ve been bringing food to potlucks for many years.  And hell, I can at least put together a fruit salad!  Either way, I can make a contribution.

What bothers me most, I suppose, is that people don’t trust my judgement.  I say I can do something, and they still want to protect me. It’s nice when people want to help, but it’s demeaning when they go too far.

So tomorrow I will have a little chat with my mother and I’ll try to explain this.  I will point out that she isn’t trying to stop my younger sister from bringing food, so why try to stop me?  I’m capable of it, so it’s my choice.  I just hope she understands and can fight her motherly instinct.

After all, I’m not a child anymore.

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Considering a move

March 28, 2012

I’ve said it before and I’ll say it again: Boston’s weather sucks.

At least, it sucks for me.  In the winter my seasonal affective disorder (SAD) acts up.  In the summer, my autoimmune issues go wild.  Spring and fall are great, but they’re too short for my body.  And last summer pushed me to the edge.  I even looked for an apartment with central air conditioning.  I still wouldn’t have been able to go out much, but at least I would have felt better when I was indoors.  Unfortunately, anything close to the city was out of my price range.  I’ve known for years that one day I’d need to move out of Boston, to someplace that was healthier for me, but I’ve resisted.  My family and friends are here.  This is my home.

But recently some things have shifted.  I’ve been thinking more and more lately about moving.  There’s a lot in my life that I’m not thrilled with now, and I’d love a fresh start.  It’s not that anything is wrong really, it’s just that things are a bit stagnant.  I need to make changes, and I don’t think I can make them here.  And when I think about it, I’d love to try going someplace where the people are friendlier and the costs are cheaper.  And mostly I want to be someplace where I feel better.

So these thoughts have been going through my mind for a while, and then two big things happened last week.  First, we had two days of 80 degree weather.  That is not normal for March.  The temp was bad enough, but the dew point rose too – it was 56 and that’s close to my breaking point.  At 58 degrees I start having real problems.  So I felt really horrible.  And it’s only March.  Of course, this is New England, so yesterday it was 45 degrees and this morning there were flurries.  But this summer will be hot and humid, no doubt about it.

The other thing that happened last week is that a friend told me they were moving out of state.  My first reaction was to be sad they were leaving, but my second reaction was jealousy.  I was incredibly jealous that they were moving away.  Hmm, that’s not the usual reaction.  Maybe that’s telling me something.  Or trying to, anyway.

Last night I had dinner with them, and we talked a lot about it.  They’re moving back to the area he’s from.  They visit a lot and they have friends there, so they know the area and what they’re getting into, which is more than I’d have.  And they’re a couple, so they’ll have each other when they move, which is also more than I’d have.  But we talked about the desire to make changes, to start over, to reboot.  We talked about how exciting it will be to go someplace new (he’s lived here almost 30 years now, so it’ll be sort of new for him, and she’s never lived there.)  They showed me some rental listings they’re finding and the different neighborhoods they’re considering.  She’s on social security disability, so her money will go a lot farther there.  He works but doesn’t have a job in the new place yet.  Still, even if he takes a pay cut, they’ll be doing well.  So in less than two months, they’re going off on their new adventure and I’m incredibly jealous.

My landlord sent me my lease renewal today and I’m actually hesitant to sign it.  I’ll have to sign, because even if I move it won’t be before the renewal date, but I’m wondering if I’ll really be here another year.  I’d hate to leave my family and my friends, but I can’t stay here just for them.  And some of them have been moving away lately.  I need to go live my life whereever.  And it’s not like it’s necessarily permanent – I can always come back!  And of course I’ll be visiting as much as I can.

So now I’m trying to figure out where on earth I can live.  I have a lot of criteria (nice people, great healthcare, possible employment, etc.) but I have one that I have to filter everything else through: the weather.  Somehow I have to find a place with cooler summers for the autoimmune stuff and that also has a lot of sun, even in the winter, for the SAD.  Now that’s a challenge!  I was thinking about Portland, OR, but it’s too grey in the winter.  And there’s southern California, but I’ve already tried it and I wasn’t a fan.  DC/Baltimore is too hot and humid in the summer.  San Francisco is expensive and hilly (my poor knees couldn’t manage the hills.)  So I’m feeling at a bit of a loss.  I’m thinking about Denver or Boulder maybe.  Perhaps some other towns in CA.  But I really don’t know yet.  Those are places I haven’t visited yet, and I can’t consider anyplace seriously until I visit.  But suggestions are welcome!  (It has to be in the U.S. – I don’t have any way to get a work visa anyplace else.)

It’s exciting to thinking about starting something new.  And it’s exciting to imagine living in a place where I can go outside year-round without feeling completely lousy.  That would be amazing!  Who knows, maybe a year from now I’ll be writing from someplace completely different.  And until then, I’ll be dreaming and planning and exploring.  And that’s exciting in itself.

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Enduring a kerfloofy week

March 12, 2012

This is the longest blogging gap I’ve had so far.  When I started this blog in July, I blogged every day.  If I absolutely had to skip a day, I wrote two the next day.  A few months ago my health made it hard to keep up, and sometimes I skipped two days, or even three.  Then this week happened, and it’s been 7 days since my last posting.

It started innocently enough.  I skipped a couple days because I was tired.  Then I tried to blog, but I had lost my internet connection for the night.  And then things got kerfloofy. (Hmm, I thought that I made that word up, but I just check and it exists already.  Go figure.)

There are a lot of ways that I don’t handle my health properly.  I don’t do my physical therapy consistently, I don’t get enough exercise even when I feel up to it, I don’t get enough sleep.  But I do pride myself on how I handle stress.  I handled my difficult job, my ill relative, and my hurt friend all very well.  But then I got it: the long term disability application.  And my stomach has been in knots ever since.

When I left my job, I told them I’d be back in 3 months, maybe sooner.  This week I have to call my boss, then head over to clean out my desk.  I won’t be coming back at all.  As of three weeks from now, they are no longer required to hold my job open for me (and I know they won’t) and I will be in the process of applying for long term disability payments.  The hardest part of this should be how horrible I feel physically.  Most days it is.  But right now, the hard part is all mental and emotional: accepting that it has come to this.

For years I have known that I could end up receiving disability payments, but I never really believed it would happen.  I am 32 years old, and I am wondering if I will ever work full time again.  Chances are that I will, but what if….?  I would never get married to someone just for their money, but right now I sure wish I had a spouse so I could at least get on their health insurance.

The future is scary, but I know I have to find a way to deal with it.  If I’m going to feel lousy anyway, I sure don’t want to add stress on top of it all!

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If you can relate to this, please pass it along!  Thanks!

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