The double standard of pursuing treatments

February 9, 2012

But they must have some idea how to treat you!?

I’m so sick of hearing that, but somehow I found those words coming out of my mouth today.  I hate when people say that to me.  I’ve accepted that there’s no straightforward treatment for my CIs, that the best we can do is slow things down.  I’ll never be “healthy.”  I can handle that.

But I hold my friends’ health to a different standard.  Sure, the doctors can’t cure me, but they must be able to cure everyone else!  Besides, my friend has a diagnosis.  They know what’s wrong with her!  Why can’t they fix it?!?

I get very protective over my friends.  She knows this.  And she’s known me for ages, since years before I had any symptoms.  So when I made that comment, we both just broke out laughing.  Imagine, Ms. R of all people suggesting that there must always be a cure!

It’s a double standard of sorts, but one that I’m fiercely protecting; I want my friends to be cured.  All of them.  Even if I never get better, that doesn’t mean they won’t either.  I want them to keep fighting for results.  And I’ll be there to support them the whole way.  I just hope they don’t give up.

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Leave a Comment » | Decisions, Educating, Expectations, Frustration, Healthcare, Insensitive, Limitations, Medication, Support | Permalink
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Komen vs. PP: Let’s focus on what matters

February 2, 2012

My personal life is so overwhelming right now that I can’t even write anything personal.  Maybe that’ll resume in a day or two, but for now, there’s always politics.

If you’ve paid any attention to the news recently, or to health-related Twitter feeds, you must know about the big Susan G. Komen for the Cure debacle.  In a nutshell, it’s pulled funding from Planned Parenthood.  A Komen board member said that this was due to concern over a Republican congressperson’s investigation of Planned Parenthood.  We all know that the Republican party has said that public funds to Planned Parenthood should be pulled because Planned Parenthood provides abortions.  The abortions are a tiny tiny part of what Planned Parenthood does.  They are not paid for with public funds.  They are legal.  They in no way hinder the breast cancer screenings that the organization provides.  I assume those screenings are the reason Komen gave them money to begin with.  So what’s going on?

Having worked in nonprofits for many years, I believe that most people do not do sufficient research before donating to an organization.  There are many sites that can help you research a nonprofit (http://www2.guidestar.org/ and http://www.irs.gov/charities/article/0,,id=249767,00.html are two of them) and they are generally underused.  Still, where should someone go to find out if funds will be withheld because of “moral” views or “political pressure”?  I wish I knew.

I want cures for the illnesses I suffer from.  I want cures for the diseases my loved ones suffer from.  I do not want political games to slow down or stop research on or prevention of those illnesses.  

Planned Parenthood helps women detect breast cancer (and other forms of cancer, as well as other problems) early, so that they can receive immediate treatment.  I  happen to have very strong views on abortion, but those are irrelevant here.  If the funds that Komen provides are used only for breast cancer screenings (and Komen can mostly likely make that a requirement of the funding) then why on earth should the funds be withdrawn?

Interestingly, this has made people (including non-media people) more interested in Komen’s practices, and they are noticing where their money goes (what percentage to fundraising, what percentage to research, etc.)  Like I said, I believe that everyone should do this kind of research before contributing to nonprofits.  So maybe something good has come of all of this.

Still, I simply do not understand why an organization that does so much good must constantly defend itself, simply because a small part of what it does is provide legal, safe procedures for women who need them.  For everyone looking to stop funding to Planned Parenthood I must ask: are you planning to fund checkups, cancer screenings, counseling, and everything else they do yourself?  No?  Then back off.

Let’s focus on what really matters.  Let’s focus on prevention and cures.

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2 Comments | Educating, Expectations, Frustration, Healthcare, Insensitive, Medication, Politics, Rants | Permalink
Posted by chronicrants

If you think it’s so easy, then *you* try it!

January 30, 2012

What is it with people saying that what I have to do really isn’t so bad?  Unless you’ve gone through it yourself, you just don’t get to say that.

The latest is that I think I need to try a gluten-free diet.  I’ve been putting this off, but from what I’ve researched, it’s worth a try.  Nothing else is working, after all.  I figure I’ll live it up for a couple more weeks, until I see my PCP for a checkup, and then I’ll talk to her about getting a referral for a nutritionist, because I sure as hell am not doing this myself.

I was telling all of this to a friend, and she said that getting a nutritionist is good, but that really, going gluten-free isn’t all that hard.  Now, we’ve been friends for ages and I love her, and I know she can be a bit know-it-all, but that’s just who she is and I accept it.  But today was annoying.  Going gluten-free is a big, big deal for me.  I have such a restricted diet already, and this will make it harder.  Cooking at home will be a pain in the ass.  Even worse, going out to eat will be horrible.  Yes, there are dishes at restaurants that appear to not have gluten-containing ingredients, but if they aren’t marked “gluten free” then they could be contaminated.  She didn’t get it.  And what about eating at other people’s homes?  When I go to a party, I can avoid the bowl of chips, and I can ignore the cheese and crackers, but what about main dishes?  Will I have to eat at home before every party?  Ok, I do that now from time to time, just in case, but to always do it?

Now, I know there are plenty of people on gluten-free diets.  I know they are successful at them.  I am not saying that it can’t be done.  I’m just saying that, especially at the beginning, it will be very difficult, and I resent being told that it won’t be by someone who’s never done it.

It’s like when someone tells you how to compensate for not being able to do stairs, even though they’ve never been in that position.  You can’t say it’s not hard unless you’ve done it yourself, and even then you can’t assume that your experience applies to everyone else.  We’re all different.

So I’m being patient, because I love my friend and I know that she only means well.  She’s trying to help.  But damn, it can get annoying to hear that kind of stuff.

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Leave a Comment » | Educating, Frustration, Insensitive, Intrusions, Kindness, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

I promise you, it’s no vacation

December 1, 2011

A medical leave of absence is work.  It’s hard mentally, physically, and emotionally.  I’m sure that some people who ask about my time off as if it was a vacation mean well.  They probably just don’t know how else to ask.  They feel awkward asking directly about my health.  But then others really do seem to think that it’s a vacation.  They seem to think I’m having a ton of fun, enjoying myself, living it up.  I’m so sick of those people.  I just want them to live in my body for a day or two, just so they’ll understand.  This is no vacation.  This is hell.  I would love for it to end.  I hate my job, but I would gladly go back if it meant I was feeling better.  But it doesn’t work that way.  I feel like crap.  When I find myself watching tv in the middle of the day, I start getting depressed.  I wish I could go out more and do more.  I wish this was fun.  But it’s just not.  No, this is definitely not a vacation.

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Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
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