The stress of handling stress

February 11, 2012

“Avoid stress and get more sleep.”

That was my doctor’s advice when I was first diagnosed with an autoimmune condition.  After 11 years of symptoms, I finally had some idea of what was wrong, and the best he could do was “avoid stress and get more sleep”???  Was he kidding me?  After all, if it was so easy to do, everyone would do it, right?

Well, it’s not easy, but it is possible.  And I’m pretty good at it, especially for an uptight type A control freak.

But sometimes stress isn’t so easy to avoid.  There’s the stress of meeting a work deadline.  There’s the stress of handling these damn CIs.  But then there’s the stress involved with the illness or death of a loved one.  I’m doing pretty well with the first two, but this last one is really a problem.

I know what can happen if I let the stress get to me, but when the doctor says a loved one could die “any day now”…. well how is anyone supposed to not feel stress?  Today was a tough day.  She was in the hospital for the second time in just a few weeks.  And it was also the anniversary of the death of another loved one.  I couldn’t visit the hospital thanks to my crappy immune system, so I stayed inside, did laundry, watched tv, and worked on a project that I know she’ll love.  I just hope she’s around to see its completion.

Anyone would feel stress at a time like this.  I just have to find a way to handle it the bet I can.  Because I know what the stress can do… and I have to somehow make sure that doesn’t happen.

 

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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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Oh social life, wherefore art thou?*

February 5, 2012

I should be at a Super Bowl party right now.  Should be.  But I’m not.  Damn body.

Every year my friends host a party.  Most years I go.  Ok, to be honest, I don’t actually watch the game, but I do love the party.  Good company, good food, and sometimes I watch the commercials.  I missed it last year because of car problems, but I was determined to go this year.  All weekend I was thinking, yes, my body has been through a lot in the last few days, but I’ll still be able to make it, right?  WRONG!

Friday was the long drive across the state, playing with kids, then driving back (details in another post.)  Friday night I slept better than I have in ages.  Saturday was taking care of an injured family member, but only for a few hours, because I knew I needed rest.  Today was rest rest rest all day.  But I woke up exhausted, felt sleepy all day, then passed out in the afternoon.  I woke up on the couch right around the time that I was supposed to be leaving for the party.  Oops!  In that moment I knew I wasn’t going.

So here I am, sitting at home, hearing the occasional shouts from neighboring apartments, and wondering where my social life went.  Sure, I hadn’t been going out every night before, but over the last several months, as I’ve felt worse and worse, my social life has edged towards zero.  A friend asked me out to dinner yesterday and it suddenly hit me that it’s been a loooong time since I’ve gone out to dinner with anyone.  Probably more than a month.  And even yesterday I didn’t feel up to it.  The last non-family party I went to was New Year’s Eve, and before that…. I really don’t remember.

Tonight was supposed to be easy.  A simple drive, a laid-back atmosphere, friends and acquaintances who I like and who I haven’t seen in a long time.  Tonight was going to be a chance to get out an socialize.  Tonight was going to be fun.  I’m starting to forget what fun is like.  Tonight was going to be a chance to get out and be around people.

And then it wasn’t.

Here’s hoping that next year is better.  That next year I’ll be at the party.  That next year I’ll have a social life.  Let’s hope.

*Note: Yes, the title is a takeoff on the famous line from William Shakespeare’s Romeo and Juliet.  It’s not as poetic as his version, but then, I’m no Shakespeare.

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2 Comments | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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

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