Comments on: Surveillance, Seeing, And The Truth

By: RA Guy

RA Guy — Mon, 01 Jun 2009 16:01:45 +0000

I appreciate everyone’s feedback, thank you.

Yes, one of the thing that still continues to amaze me about this who RA thing is how quickly it can turn on a dime. Even though I’ve been through it many, many times – it still continues to amaze.

As per the family, I’d liked JG’s comment “the reason people are in denial are ultimately because of their own issues, not yours”. I just recently realized this. (The learning curve of RA never ends, does it?)

By: tessie

tessie — Sun, 31 May 2009 05:00:57 +0000

Oh me. Oh my. I TOO awakened the RA gods behind the curtain! Went to my rheumy appt., happy to report for the first time since diagnosis a year ago that I was finally feeling better.
That evening I was back in my splints, hurting all over, and my hands haven’t calmed down yet!!
I’ve never been superstitious before…but now I’m wondering: is THAT an invisible symptom of RA as well??
Sigh.

The outcome for me, however, is that I am having to process all over again what it means to have this blasted disease. I had to admit to myself that the disease is no longer an interruption. It is the baseline. Flares or good days– each are just as fleeting as the other.
And, I must remember not to piss off the RA gods.

By: Just Christine

Just Christine — Sun, 31 May 2009 04:31:14 +0000

Today your blog really resonated with me. I understand the roller coaster effect of this disease. And also the difficulty for those who love us to understand the disease and its physical and mental challenges. I, for one, hate roller coasters! So, I suppose I can understand why my family and friends may not want to “jump on.” Here’s hoping I can learn to accept what they can give or understand and just move on, taking care of me. Thanks, RA guy!

By: Kali

Kali — Sun, 31 May 2009 02:43:31 +0000

For me, the frustrating thing is that while my family has been startlingly accepting of the physical side of becoming disabled young, the mental and emotional mess that come with it? That they do not get, nor do they want to get.

I tried to explain to my mother how offensive and prying it is to have strangers ask me about my medical condition. I was told I had a bad attitude, and should be glad that they aren’t ignoring me, because all of the people with disabilities she knows complain about how people ignore them.

I hadn’t realized that it was an either-or, with no option of just being treated like a normal human being /irony

I hope your hands are brought back under control soon!

~Kali

By: Miss Waxie

Miss Waxie — Sat, 30 May 2009 19:52:35 +0000

Well first RA Guy, I’m truly sorry you’re in such a horrible flare. I more than know your 1984 nightmare – I my self, recently recieveced the good news that my SED rate is lower than it’s been in 5 years…and first I though Great!!, then..I thought, oh god, i just flipped the irony switch, didn’t I? I feel like being happy about a health victory means i’m minutes away from a flare. Which is a really depressing way to live.

…On an equally frustrating topic, I’m sorry some of relatives are less than supportive of your condition. Like so many other who will read your post, this too, resonates with me. Along with medication side effects, this is another silent part of chronic illness. …At least we have each other, right?

Feel better, RA Guy, I’ll be thinking about you and wishing your joints the best of vibes!

– Miss Waxie