Spreading the word on chronic pain and chronic illness

February 13, 2012

I found this great web site the other day, How to Understand Someone With Chronic Pain.  This is one of the more accurate and insightful sites I’ve seen.  The problem is, it only works if people read it.

I emailed this site to some specific people, I posted it on Twitter and on Facebook.  I’ve told people about it.  But I can’t force anyone to read it.  I’ve seen other good sites and videos, but again, they only work if people read the pages and watch the videos.

For the people important to me, I think that if I email them the site and tell them that it’s important to me, they’ll read it.  But then, these people already have a better understanding than most, since they’ve watched me deal with this for 20 years (or as long as they’ve known me.)  How can I get their friends and acquaintances to read it?

Really it all comes back to the same old issue: ignorance in the general population.  I’m tired of people suggesting that I’ll feel better if I get more exercise, or that I just need a good night’s sleep, or that I can’t really be doing that badly if I’m acting or looking so good.  I know that at some point I have to ignore people and just not care, but that can be very difficult to do.  I’ve learned to ignore strangers, but what about friends of friends?  What about coworkers?  It gets complicated.  We all have our thresholds, and lately I’ve been hitting mine.  A lot.

There’s no real point here, only that I hope everyone who reads this will email/post this site, or a similar one, to the people they know so that we can spread the education.  There are millions of people with chronic illnesses; we can’t pretend otherwise.  Let’s spread the word!

 

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2 Comments | Educating, Frustration, Insensitive, Intrusions, Isolation, Rants, Raves | Permalink
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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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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
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Communicate, people!

February 1, 2012

Many years back I created a family medical history chart.  I sent a spreadsheet around to the family listing all known family illnesses, and asked each person to fill it in, adding additional illnesses as needed.  I filled it out for my grandparents.

As it turns out, this was a brilliant idea!  Everyone loved it!  They all filled it out right away.  I compiled everything, then split it, making one spreadsheet for my mother’s side of the family and a separate one for my father’s side of the family.  I sent the appropriate spreadsheet to the appropriate people, and suddenly we all had a comprehensive family medical history!  I still bring this with me to medical appointments.  I recommend that everyone do this.

The problem is that it’s very outdated.  I tried to update it years ago, and no one was interested.  Of course, this only works if people update it.

I guess it makes sense, then, that I didn’t know about my aunt’s hypothyroid.  I got tested for hypothyroid many, many times over many, many years.  Then they changed the “normal” standards, and suddenly the same test results that were considered “normal” were now considered hypothyroid!  I started taking meds, adjusting them a bunch of times over the years, and figured this was the least of my problems.  (I was very wrong about that, but that’s a subject for another post.)  Last year my doctor decided to test my thyroid antibodies for the first time.  It amazes me that no one thought to do that before.  I got diagnosed as having autoimmune illnesses years before the hypothyroid diagnosis.  Why didn’t anyone think to test that?  With the “normal” antibody range maxing out at 35, and my results coming in at over 300, it was clear that I had an autoimmune issue with my thyroid.  Shocking.

I spoke to my doctor’s office today, getting the latest results.  Suddenly it hit me that this has a genetic aspect to it, so I emailed my immediate family and my cousins.  And what happened?  A cousin wrote back that her mother, my aunt, was diagnosed with a hypothyroid years ago!  WTF?

Now, I’ll admit, I wasn’t fantastic about communicating my antibody issues, but at least that only happened several months ago.  With my aunt we’re talking years.  For something with a genetic component.  It took 10 years for my first autoimmune issue to be diagnosed.  Now, 9 years after that, I have 7 diagnoses.  So far.  Many relatives were diagnosed after me, and theirs were much easier because they had my history to reference (I’m just about the oldest in my generation, and mine started at a young age, even before my grandmother’s RA.)  Wouldn’t they think that this information may have helped me get diagnosed?  Wouldn’t they think that maybe, just maybe, this is information worth sharing?  What else don’t I know?

ARGH!!!!!!!!!!!

I try to be patient.  I really do.  But when family members don’t share basic information….?!?  Time to revive and update that chart.  And this time I’ll hound people until they get it done.  It’s too important to ignore.  We all need to talk about these things!

 

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