Enduring their sadness

May 19, 2012

I love that people care enough that they want me to get better.  I just wish they’d stop asking me how I’m doing.

Last fall I wrote about how difficult it is to reassure people, but yesterday brought it all crashing back harder than ever.  People ask how I am and they want so badly to hear that I’m doing better.  I’ve had to ask people to stop asking.  I know it’s hard for them, but it’s a lot harder for me.  Thankfully, they’ve all been respectful of that so far.

Unfortunately, that doesn’t work for everyone, especially my grandparents.  There are two reasons why it’s especially hard with my grandparents.  For one thing, their memories aren’t great these days, so they’ll ask me how I am, forgetting that we just had that same conversation the day before.  I’ve asked them to back off, and they did for a while, but then they forgot.  This is not their fault.  But it’s still difficult.

The other problem is that their health isn’t great.  I know that a big part of it is that they want to see me improve before they die, which could be soon.  It used to be that they wanted to see me married while they were still around.  Thankfully, they’ve adjusted their expectations of that (though I’m sure they’d still be thrilled to see me married, just like I’ll be devastated if my future spouse never meets them.)  The hard part of this is that they are being so selfless.  They want to help me and are frustrated that they can’t.  There is nothing they can do now, but they still want to know that I will be ok in the long run.  I want desperately to assure them that I’ll be fine, but I just can’t do that.  I’ve thought about faking a fiance.  I could probably manage that, actually.  But I can’t fake my health.  There is just no way I can pretend to be healthy.

So yesterday was another hard day.  Again, they asked how I was doing.  Again, they were disappointed that I’m not all better.  Again, they talked about me going back to work and again, I had to explain that I can’t do that right now.  Again, I avoided the obvious, that I may never improve.  I came home wanting to cry.  Just writing this I’m getting tears in my eyes, something that almost never happens.  It is so hard to see the people I love hurting.  I wish I could get better for them, but of course, if I knew of some miracle cure, I’d have done it already.

There’s really no choice.  I will keep plodding along with the various treatment options that I’m finding.  I will continue to research doctors and other medical practitioners, medications and diets and other treatments.  I hope that sooner or later something will work.  In the meantime, I will have to continue to tell people that I am not better.  And I will have to continue to endure their sadness.


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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Are you better yet?

March 2, 2012

When I was a kid, my family would drive to visit family several times a year.  The car trip took forEVer… 4 whole hours!  There was a decent amount of “Are we there yet?” coming from us kids in the back seat.  The longer we were on the road, the more emphasis the “yet” received.  We wanted to be there already!

I know everyone means well when they ask how I’m feeling, and when I’ll be ready to go back to work, but what I’m hearing is “Are you better yet?”  I try to remind myself that they only want me to be healthy, but it’s weighing on me.  Do they really thing I’d be better and return to work without telling them?  Do my close family and friends think that I’d be doing great and not let them know?  Asking constantly is simply not helping.  It’s pressure.  Every time they ask, and I tell them I’m not doing better, I feel like I’m letting them down.  They are disappointed.  I understand why they’re disappointed, but my natural instinct is to want to make them less disappointed, and I can’t do that, so then I feel guilty.

This is INSANE!  I feel guilty because I have to tell people that my health isn’t improving?!?!?

Everyone is different.  Some people may want to be asked about their health constantly.  That works for them.  It does not work for me.  I am mentally crafting an email now that I can send to everyone asking them to back the hell off.  I just need to figure out how to say it a bit gentler….

 

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Get your hands off my healthcare: men and birth control

February 16, 2012

Is healthcare a privilege or a right?

I believe that it is a right.  Some politicians disagree.  It is infuriating, but they have more control over the treatments I receive than I do!

This isn’t a problem unique to the U.S., of course.  I’ve been following the twitter rants from U.K. posters, and it looks bad there too.  And let’s not even get started on countries where women are treated like property.  I may cover those another night, but right now, I am thinking about U.S. healthcare (there’s an oxymoron), and who wouldn’t, with what’s happening right now?

The short version is that the president decided to follow the recommendations of a study, and make all contraceptive care free to women. In the U.S., health insurance is generally provided by employers (the unemployed and self-employed have options, but they’re usually lousy.)  So it was decided that all employers, except for churches, would have to pay for contraceptive coverage.  I don’t like the church exemption, but so be it.

The Catholic clergy went nuts.  They didn’t want their religiously affiliated hospitals, universities, etc. to be required to pay for birth control.  The solution?  The president arranged it so that any religiously affiliated organization with a moral objection could opt out, and the insurance companies would be required to provide coverage free of charge.  This works out for everyone, since it still saves the insurance company a lot of money in the long run.

The clergy weren’t happy.  Instead of uniting together to preach the sins of contraception to their parishioners, they decided to unite together against the idea that contraception would be provided to their employees.  Instead of trying to convince people they are right, they are trying to bully women.

And just to add insult to injury, the panel of religious leaders that was gathered consisted of only men.

Twitter has been aflutter, Facebook has been indignant, and I just want to wake up from this nightmare.  The best suggestion I’ve seen so far was on Twitter: That there should be a congressional hearing, made of only female legislators, on insurance coverage of Viagra.  [I apologize to the author that I didn’t note their name.  I would love to give credit to the right person for this wonderful suggestion.]

Now personally I think the real answer is simple:

Make men financially responsible for the fetuses and babies that they father.  (Sperm donors could be excused.)

Let’s say there was a law that the man (whether a one-night stand or something more long term) whose sperm impregnated a woman through intercourse (a simple paternity test would ensure accuracy) would have to pay 50% of her abortion costs or pregnancy costs; 50% of medical costs for both mother and fetus/child; 50% of clothing, food, school supplies, recreational activities, tutoring, and other childhood costs.  Now, with this law in place, would our politicians be having this inane debate?

And let’s leave aside for a minute the idea that contraception is immoral.  Let’s say you believe this.  And let’s ignore the slippery slope this would create (what else could employers object to on moral grounds?  The most expensive parts of coverage?)  What about the many, many women who take birth control pills for other reasons?  Personally, my estrogen levels are too low, so I take 1/2 pill every day to raise those levels.  This does not serve as birth control one bit.  Why shouldn’t this be covered like any other medication?  And what about my friend who had a very dangerous birthing experience with her son?  Her doctors say that she shouldn’t get pregnant again, that it’s too dangerous.  Is it worse for her to use birth control than to possibly get pregnant and need an abortion?  According to these men it is.  But then, that makes sense: a woman’s life just isn’t as important as a man’s, apparently.

Why are we debating the healthcare that men think women should receive?  A small group of religious leaders think that birth control of any type is immoral.  A bunch of politicians want to do anything that makes the president look bad, and since they represent some religious constituents, this suits their purposes just fine.  And the voters?  I just hope the voters make it clear that this is not ok.  Our medical treatment is not up for debate.  Our family planning is not up for debate.

My big regret today?  That I can not tell those jerks what I really think of them in person.

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