We are ALL the Face of Arthritis

Autoimmune diseases bring a whole different set of problems. There's no reason to try and deal alone. Why not be in it together?
We would LOVE to feature your stories and opinions- email us at contribute@thefaceofarthritis.com !

Tuesday, July 29, 2014

I bet Charles Lindbergh never got stopped at airport security because of joint braces.

I mean, that might have been because they didn't use metal detectors and full body scanners and the wand things way back when... it might also be because he was the pilot and he was the only one on the plane, and often times he owned it.  Whatever.
That doesn't change the fact that I am not Charles Lindbergh, nor am I a pilot or a plane owner, which means I got to have a fun old pat down after going through the full body scanner.  And, ok, I will take some responsibility for this. 

 See, I had to drive a rented car 2 hours to get to the airport  (did you know they charge HUGE drop off fees if you rent it going one way and for only one day?  Jerks.)  and it is, of course, my right knee that is my worst knee.  So before I left I put on my semi-immobilizer to help with the discomfort of the drive.  If I had been thinking clearly I would have thought about the fact that it has metal in it.  And that the fashionable straight leg jeans of today don't exactly roll up very well.  And that I was going through AIRPORT SECURITY where they get a little particular about long, thin, sharp looking pieces of metal apparently hidden on your body.  My bad.  
My wrist brace set it off too, but that I could easily take off to show them I wasn't hiding Ninja throwing stars (like I'm trustworthy enough to be given Ninja throwing stars) inside it.  But, damned if I couldn't get my pant leg up to show them that, no really, I'm not planning to kill the pilot, I'm just trying to not fall sideways when I walk.  

The woman was super understanding, though, about the fact that even if I had put those pieces of metal in there to try and kill the pilot, I wasn't going to be getting to them without first removing my pants which, it has always been my personal experience, they frown on in the cabin.  Even if the fasten seatbelt sign is off.
No sense of humor, that TSA and Air Marshalls.  

Tuesday, July 22, 2014

Let the Music speak to and for you

My  Body is a Cage

sung by Peter Gabriel 

My body is a cage
That keeps me from dancing with the one I love
But my mind holds the key

My body is a cage
That keeps me from dancing with the one I love
But my mind holds the key

I'm standing on a stage
Of fear and self doubt
It's a hollow play
But they'll clap anyway

My body is a cage
That keeps me from dancing with the one I love
But my mind holds the key

You're standing next to me
My mind holds the key

I'm living in an age
That calls darkness light
Though my language is dead
Still the shapes fill my head

I'm living in an age
Whose name I don't know
Though the fear keeps me moving
Still my heart beats so slow

My body is a cage
That keeps me from dancing with the one I love
But my mind holds the key

You're standing next to me
My mind holds the key
My body is a...

My body is a cage
We take what we're given
Just because you've forgotten
That don't mean you're forgiven

I'm living in an age
That screams my name at night
But when I get to the doorway
There's no one in sight

I'm living in an age
They laugh when I'm dancing with the one I love
But my mind holds the key

You're standing next to me
My mind holds the key

Set my spirit free
Set my spirit free
Set my body free
Set my body free

Set my spirit free
Set my body free

Friday, July 18, 2014

Oh Hell, I Had to Go and Open My Mouth

You know, sometimes I am such an idiot.  I had been doing well (as far as not catching infections or anything to keep me out of work) since beginning to work in our contact lens department instead of following a doctor around all day.  I hadn't had to call out in several months, hadn't been desperately begging to leave work early because I felt like I was dying from the inside out.
But then, I went and said so out loud.  Earlier this week I made a comment about how well I had been doing.  Which, of course, meant that I would end up puking at work today and being sent home.  I managed to hold it in until after 3, but of course my manager (and one of my good friends, you may recall) has my "I just yakked" face memorized, and immediately hugged me and said "go home."
What the crap, self?  You know better than to say those things out loud, get with it!

Wednesday, July 16, 2014

They just don't make The Help like they used to...

I've been struggling a lot lately with whether to stay with my current rheumatologist or begin looking for someone new.  After a less than stellar appointment yesterday I have heavy heartedly come to the conclusion that it is time to try someone new.
This is a tough choice sometimes.  I've had rheumies that I just flat out didn't like- who made me feel like a private in the army just taking orders from his superior- even though it was my body.  I've had rheumies whom I loved, were personable, got along with me well, seemed to be willing to treat as aggressively as I was comfortable, but had the most shit-tastically run offices I have ever seen.  Now I have one who seems nice enough, and competent,  but rather than treating me as a partner in my treatment is acting more like I'm sitting in the back seat just along for the ride... like, "Ok sure, we'll get pizza for lunch, but first lets run these few errands I have, then we can TOTALLY do what you were just yammering on about."
So, when do you say enough is enough?  It's hard to balance the long periods of time it can take to see improvement with treatment changes, but where is the line that says "waiting is no longer an option"?
Some of you are new to the world of autoimmune disorders and are still trying too navigate the tricky situations that can arise as a result, but I know a lot of you that have years of experience.  Share with us the key signs you look for, or that we should be looking for on first visits to help us determine if a doctor is going to be the right fit.
Choosing a rheumatologist is just like hiring a maid: you don't want to hire a maid where you feel like you have to clean up the house before she gets there.  As one forum member at Arthritis Foundation  pointed out to me, these doctors are your employees and they should be including you as an active, decision making part of the process.
What are your guys' thoughts?
K

Thursday, July 3, 2014

If no one sees your disease, are you like a tree that falls down in the forest?

Did you know there are different kinds of refraction?  The one most people think of- where a lucky tech like me gets to stand there saying "which is better, one or two?" - that's called a subjective refraction, because we rely on the opinion of the patient to determine the prescription.  There are also objective refraction options, or rather, refractions that are based on the physical makeup of your eye, rather than what you think you see.  Few doctors trust these objective methods implicitly because, well, it's YOUR vision, and even if the retinascope says this is what you need, you may not like it.  So, often times, objectives will be used to find a starting point and then the subjective refraction will be done by the tech or doctor to finalize a prescription.

Pain is just like vision: yes, it is something that should have objective indicators which a doctor can monitor.  But, there is also a hugely subjective component that can only be measured and expressed by the patient.  And, just like most people find the which is better test to be stressful (because the B looks better on one, but the N is darker on two, and how am I supposed to know which one I prefer, this is beginning to feel like a life or death decision ohmygod someone please help me I'm DYING!) trying to measure your level of pain becomes one big mind fuck. "My fingers are killing me today, but they don't look swollen.  And my knees won't bend, but there are no pressure systems near me, there aren't even tiny storm cells to watch.  Maybe it's in my head.  Maybe I'm not really sick, I'm just whiny and if I bucked up I would be fine." 

That's the problem with having an invisible disease: yes it's hard to convince others that you are sick, but at one point or another you're going to end up psyching yourself out and feeling like a hypochondriac.  Because, can you REALLY be sick if you don't look sick?

Yes.  The answer, is yes.