Nobody Knows

This afternoon I received a message on Facebook:

Someone has proposed that us, GIRLS, do something special in Facebook to help gain consciousness of Breast Cancer. It’s so easy that I’d like you to join us to make it spread! … blah blah blah

What do you drink?  blah blah blah

I misread “What do you drink?” as “What do you think?” and didn’t hold back in my reply:

What do I think? I think there is already a ton of awareness about breast cancer.  People already know what cancer is.  They are already aware of the numerous body parts that can be attacked.  Even if they don’t know the difference between in-situ or metastatic cancer, they have a general idea of what cancer is and what’s involved in fighting it.

On the other hand, I’ve posted numerous times about raising awareness of autoimmune diseases – something most people are clueless about.  I have not gotten any support at all.  Do you click “like” on those posts?  Do you re-post so that the people on your friends list have the opportunity to learn about this group of horrible diseases for which there is no cure and no known cause?  Did you play in the IAAM scavenger hunt to raise awareness last weekend, as I requested everyone do?  Did you let others know about the awareness weekend so they could play or have the opportunity?  Do you even know what autoimmune diseases are?

There are horrible diseases deserving of a lot more publicity than something that everyone already knows about.

So, for those fed up with the slacktivist’s ”I’m a beer/red wine/champagne/etc woman” FB status, any ideas on how we can generate more publicity for autoimmune diseases on Facebook (or other venues)?

Grumpy

When methotrexate was first prescribed to me, I was worried about getting sick; I’d read numerous accounts of people who got one infection after another, and didn’t look forward to joining their ranks.

It turned out that my fears were unfounded.  I’ve taken methotrexate for a full year and haven’t been sick once.  Four of my kids have been sick at various time during the past year, but I haven’t had so much as the sniffles.  If you’re looking for information on mtx and illness, I’d say, “Don’t borrow trouble.  Chances are you’ll be fine.  At least give it a try.”

I haven’t had any trouble for an entire year.  Until now.  Last week I started coughing, a horrible, dry cough.  It’s gotten worse in the last two days, and it feels like I should be coughing stuff up, but that’s not happening.  I’ve been coughing so hard today that I’m going to need diapers if this keeps up.  My chest hurts like it did a few years ago when I had pneumonia.

Fortunately there’s no accompanying congestion, so at least I can breathe.  Unfortunately, all that coughing has given me a sore throat, and the sore throat has made me sound pretty hoarse. 

Adding insult to injury, the other day I was cooking and suddenly, out of the blue, it felt like someone stabbed me just below my ribcage, then jerked the knife straight downward.  I stopped right in my tracks, it hurt so bad.  And then it went away.  Well, not exactly away, but reduced to a dull ache.  It made me wonder if I have to deal with kidney stones on top of everything else.  My back’s now hurting something fierce, too.  I’ve increased my water intake to see if that makes a difference.

And this evening I’ve started running a fever.  According to the warnings and precautions on a number of my medications, that’s another reason to phone the doctor.  Cough = phone the doctor; sore throat = phone the doctor; hoarseness = phone the doctor; fever = phone the doctor.

I don’t want to phone the doctor.  That always turns into, “You should come in to be seen.”  Before all this, if I got a sore throat, I’d drink hot lemonade, eat chicken soup, and become a hermit until I felt well again.  Now apparently I have to call the doctor about every little thing.

I just want to crawl into bed and be left alone until I’m well again.  So I’m grumpy.  But it turns out that “mood changes” are also listed on my prescriptions as a reason to contact the doctor.

 

Cross-Posting

Last month’s cross-posting was quite an experience.  A couple months back, after reading Dr. Kevin Pho’s CNN article, Will the doctor answer your e-mail?, I blogged a response to his suggestion that patients should be Making Demands.  The Queen of Optimism kindly suggested that I submit that response as an op ed, and to my surprise and delight, Dr. Pho cross-posted that piece on KevinMD (here).  The comments over there got significantly off track, but the email responses were favorable.

Earlier this week, on Monday, an edited version of my third post in the speaking up series was cross-posted at KevinMD.  The responses were not nearly as positive (to put it mildly), leaving me wondering:

• am I completely off-base on this?
• do commentors always make such erroneous assumptions?
• has my writing become that unclear?
• was the whole point of my post edited out?

Reading some of the comments left me fuming:  not at the commentors who don’t know the whole story – well, maybe a little.  Mostly at the medical provider who could have killed me with his bad prescription.

Quite an experience, this cross-posting.

I’d be interested in knowing your opinion.  Was the piece really that badly written?  Am I doing the crazy patient bit?

Addendum:  Due to excessive spam, comment on this post are now closed.  I can still be contacted via email.