maureen (mo):

I don’t bake because I would eat it all by myself before anyone got home, and then I would hide the evidence.
mo

[Reply]

Kathy:

Not everybody agrees with your opinion about Twitter.

http://www.fibrochondriac.com/2010/05/09/do-you-know-the-rules-of-twitter/

I found out the hard way.

[Reply]

Katie Reply:
June 1st, 2010 at 7:10 pm

I agree with your post that there’s a hierarchy of bloggers on twitter. Some will only follow back if someone is in the same general traffic levels, others are even more picky. I hate that. I really do.

And I think that there’s a learning curve on twitter. If you ever want to know what happens at the end of a show, always feel free to DM someone, that’s a great option!

[Reply]

Katie Reply:
June 1st, 2010 at 7:13 pm

So then I went back and reread your post and realize that I missed a crucial NOT in the line about spoilers. You were asking people NOT to tell the end. Blame the brain, it’s failing pretty badly tonight.

I hate hate hate when people tell me I can’t expect my show to be spoiler free. Like it’s NOT common courtesy to not ruin the ending of things? Makes me crazy!

[Reply]

jazzhound:

I have my own rant, which unfortunately keeps recurring…

Chewed out my GP again today. Took 2 YEARS to get a referral to a cardiologist. Yep, you read right. Chewed her out 4 times to make that happen.

Then I see the cardio, get ushered into a literal stall with a treadmill in a room full of other stalls, do the stress test, and get to “see the doctor” for all of 3 mins. when he tells me there the med I have been given for 2 years is wrong, take calcium, and try phytoestrogens. Then he hands me a card for a multi-level distribution company where I can get said supplements.

WTF!!!!

So I tell this to my GP, that I am not impressed on any front about any of this. That being treated like cattle is so very wrong, especially when I have been pushing for an actual consult for 2 YEARS.

She tells me to go see him again and try to get some answers, since she doesn’t agree with what he told me.

Then I freak out. Completely.

I tell her I am not happy with how this has been going, either on her end or on his, and that this is just one episode of 17 years of this type of run-around.

To top it off, I work in this bloody system. Which I am rethinking every day. This healthcare system is stressing me out- because I know how it should be, and what it can be, and what has all gone wrong in both my medical management and continuity of care it makes it much worse. Sometimes ignorance really is bliss.

I ask the GP if I should be taking aspirin for my heart, since I now have a diagnosis of atrial fibrillation confirmed by the cardio. She emphatically says “of course!!”.

I get angry all over again.

I counter: Don’t you think you could have told me this 2+ years ago when I showed up at the ER with a 19 hour bout of a-fibrillation that didn’t respond to cardioversion. (Yep, shocking me 4 times didn’t cut it…. nice stuff, huh?) She just responds- it’s your choice. I get madder.

I ask her if the medication he has prescribed is OK for this condition- since I can find NOTHING anywhere on the use of this new med for atrial fibrillation. She says, no, you should be on the one I prescribed.

so I ask her– which do I take,and who do I listen to? You just told me you would defer to his expertise as a specialist, and then you tell me to go back to see him about the drug since you don’t agree. Then she tells me I must make the choice myself.

Excuse me, but holy fuck, I think I’m gonna yell now. I don’t, I just get more insistent.

I tell her– hold it, I just told you I can’t find any inforjation at all on this new drug, and ask you who to listen to, and you tell me to make the decision myself. Either you know what works and doesn’t or not. Either you are practicing “evidence-based medicine” or you are selling me snake oil or pushing the latest med the pharma rep left on your desk, which is it????!

At this point, I’m done.

I have had fibromyalgia for 15 years before I recieved a diagnosis. I saw 17 specilialists pretty much regularly over that period of time. Very frustrating.

I was actually happy when I was diagnosed with atrial fibrillation- a well known, common heart rhythm disorder. I just read an article 2 weeks ago calling it a “modern epidemic”. So why in the hell is the treatment plan and care still so whacked? Why with something this well known and definitive still met with such poor follow up and care?

I am sick to the bottom of my soul over this. Over this system, over my ineffectiveness to advocate on my own behalf even though I am well educated and work in the healthcare system. Even though I spent years working in medical and vocational rehab.

I’m also sad. Really, really sad.

What’s it gonna take to get proper medical care? What conditions are adequately and appropriately treated?

And I’m mad as hell.

It’s a good think I suffer from crippling fatigue or I’d burn the damn house down. I would scream from the rooftops. I would make it my life’s mission to turn the tables. But I can barely stay employed in my regular schmo job as it is. I am just hanging on…..

Therein lies the rub.

They beat us down and minimize us because they can.

Because they CAN. And I am so tired of it.

[Reply]