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 !

Friday, January 31, 2014

Good Days Can Suck

Most people don't understand chronic pain, and so sometimes your good days can emotionally feel like the worst.  I mean, the bad days suck, do not get me wrong.  I hate traipsing along after my doctor with my knee in a brace and my ankle wrapped and typing constantly with a sore wrist and swollen fingers.  But, when I'm limping and dropping things then people understand; they can "see" the disease, like having a cough or throwing up.  It validates the state of your being for them.
A good day, though, can make it hard for someone to understand the disease.  "How can you not feel well on Thursday when you felt great on Wednesday?"  "Your joints can't be that bad if they feel good some days.  You must not really be sick, maybe you're just complaining."  "We all have pain."
Sometimes, those of us with chronic pain would love to punch those people in the face.  Even during the worst flare there can be good days: and, just a thought here, maybe the massive doses of prednisone may actually be doing their job and making me not feel like shit. But hey, I'm no doctor. 

At the same time, you have to give the average person a break on this one.  They literally cannot comprehend what chronic pain feels like.  They haven't experienced the ever present fatigue.  The way that the "same" pain feels worse and worse the longer it lasts, just because it never lets up.  That constancy is an alien concept to them.  And often, they don't think about the fact that you don't just hurt during waking hours- it hurts through the night, often keeping some of us up for half the night, making it that much harder to deal with the next day.  For most average people the longest they've been uncomfortable was the time they had the flu, or maybe they tore an ACL playing sports.  Both of those suck, but there's a light at the end of the tunnel.  Often times for us, it can feel like the tunnel will never end.  Or, worse even, we can see the light , but it seems to get father away from us with each passing day; a painful reminder of how little control we have sometimes.

Earlier this week I had a "good day".  I only needed 2 doses of ibuprofen and I didn't need a knee brace.  But I still didn't have time to put on makeup for work, or do anything other than a braid to my hair, because I needed more time to wake up my joints and get started for the day.  That's part of ensuring a good day, giving yourself plenty of time to "prepare." 

Sometimes the face of arthritis has a smile on it because a day with a moderate amount of pain is so much better than a day with severe pain.  

Monday, January 27, 2014

Who is Arthritis?

I work in an ophthalmology practice, and a large portion of our patients are geriatrics; especially when you work with a cataract or glaucoma specialist like I do.  It's hard to walk them back, often slowly, almost hearing their joints creaking.  You hate yourself for your frustration at their slowness, knowing that every second puts you farther behind. The medicine lists they give you to enter are a page long, and seem to be one medicine treating the side effects of another treating the side effects of another and so on and so forth.  

It can be scary for those of us who share the degenerative diseases that plague them.  It feels like looking into the future: watching them try to hold an occluder over one eye, barely able to grasp their own glasses and slide them off.

That's an extreme case, of course, and I see plenty of patients who live fairly normal  lives with the same problems and medications I have, but it's the gnarled fingers and hunched backs that stick out in your mind as a stark reminder of why we endure the sometimes painful and uncomfortable treatments that make up our lives.

My name is Kathleen, I am 28 years old and I have Rheumatoid Arthritis.  The disease has taken a lot away from me, but I hope that I am making progress towards gaining it all back.  This is my life with it, all the little things that come up, the accomplishments, the set backs, the little joys I might not appreciate if I didn't know how much worse things could be from personal experience.  Maybe you can relate- I hope that you will share.  Because I don't just want this to be where I share my story, I want it to be where we share all of our stories- to comfort the new patients, to encourage the old patients, to be a community of life.

I am the face of arthritis.