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Autoimmune diseases bring a whole different set of problems. There's no reason to try and deal alone. Why not be in it together?
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Thursday, March 26, 2015

Have you ever heard of a drug holiday?

I guess that could actually be two things.  I am not talking about going on a long binge of illegal substances to pretend like you don't live the life you live. I mean, if you want to do that, you be you.
But no judge if this is your thing.
What I'm talking about is going off of a prescribed medication for a period of time, to test the efficacy; to see how your symptoms are without it. So, you could say that's what I've been doing lately with my methotrexate. I mean, what was ACTUALLY happening is that when I briefly saw a different rheumy the proper blood work did not get drawn, so my regular rheumy couldn't ethically refill it until she saw me and ran labs.  I get that, you have to be careful with these poisons we're on.
The result of this mix up, however, was me not being on MTX for about 4 weeks.  And trust me, I'm feeling it. Which is actually a good thing.
It acts as a reminder that my symptoms are real. Sometimes after a period of time on medication, with things moderately controlled, symptoms can dissolve into the back recesses of our mind. I, at least, can become paranoid and wonder if they were all in my head to begin with.  What if I'm not sick? What if I was just whiny and didn't know how good I had it? Or what if it was just a short term thing, like maybe I just hurt myself? Everywhere...
No, any time I end up without medication for a while, all of those questions become clearly silly when I'm gulping down ibuprofen just to get out of bed. And you know what? Thank God. If it weren't for a rare reminder, I may go crazy wondering if I'm even more of a hypochondriac than I initially thought (I should never be working in the medical field. Hindsight is 20/20. I should know, I test vision all day.)
Do you ever stop your meds, or like in my case, find yourself between refills? Do you find some emotional relief in the justification for taking the medicine? Or do you have confidence in your diagnosis even when you're feeling good?
I think I was told for so many years that my symptoms were "in my head" that I can't help but still hear a little voice saying the same thing. I have a very strong suspicion that it is the "little green man" who sat on the edge of my cup when I was playing Circle of Death.

Monday, March 23, 2015

Looonnnggg night

Its going to be a long night of storms moving in and pressure systems stalling on top of us.
Here's a punny joke to help pass the time.

You know what? I don't even need sheets.

I made the bed yesterday. THAT was an ordeal.

Sometimes I feel like my fingers are no longer attached to me.  Like, instead of giving orders via the nerves, the brain is calling them on their cell phone and the reception is shitty.
For my brain, making the bed is easy. You see the sheet sitting there. You reach out your hand and grasp the sheet. You position the corner of the sheet over the corner of the mattress. You walk to the next corner. You grasp the sheet, you stretch the sheet to the corner and secure it. Repeat as necessary for however many corners your bed might have (I don't know how to make a round bed.) But THEN you put MY hands in the equation and they turn into the equivalent of :

For me, that's the must frustrating part. I know HOW to make a bed. These same fingers (that's an assumption that there have been no alien abductions with transplants that I'm unaware of) used to make a bed just fine (my mother would tell you it was my mouth that used to be the problem.) Yet now it feels like trying to place a radioactive pin in someone's brain while wearing lead oven mitts.*

* I should probably watch less
Grey's Anatomy
It doesn't help that I spent most of the weekend in pain. Whether it was weather related, or my body playing tricks on me I have no idea, but I just hurt all around- neck to elbows to knees to toes. It's so strange the weird things that you find yourself challenged by.  Ten year ago I never would have thought anyone needed help making the bed. Now, even typing this is a struggle.

Sunday, March 22, 2015

The Dread Pirate Harrison
So if you follow our Twitter or Tumblr, you have no doubt seen lots of pictures taken at the Alamo Drafthouse here in town.  The beauty of this theater is that they show classic movies all the time.  Since January I have been to see Mean Girls, Moulin Rouge, The Princess Bride, Fear and Loathing in Las Vegas (I am, I think, Hunter S. Thompson at heart), The Boondock Saints, and Fight Club (don't ask me to talk about it.)   Some of those, like Mean Girls and Princess Bride were quote a longs, and Moulin Rouge was a sing a long.  We got fun props like tiaras (I mean, it's just... plastic) and blow up swords (I'm not left handed either.) to use on cue during the movies.  They do drink specials themed for the night, and everyone has an amazing time.  (For Boondock Saints everyone got cap guns and shot them whenever they shot people in the movie.  I was, like, deaf by the time we left.)
This costs about the same as a regular movie ($9-$12 dollars here, I don't know if it varies from city to  city), and is the only time I've gone to the movie theater since... the last Paranormal Activity came out.  Whenever that was.
Movie theaters are kind of one of my least favorite places.  A) there are often children there, which I generally try to avoid.  B) I have to sit in a seat which was designed for the comfort of someone taller than me, for about 2 hours.  By the second half of a movie my hips and knees are killing me, I have a crick in my neck from that stupid "head rest" (it does not reach my petite head. That's a lie, my head is not petite; I have an extremely jutting occipital shelf, which hurts when I press it against a headrest for long periods of time.  It is a burden, truly.  My life is so hard.)
This is why I am not a huge fan of paying more than $10 for a ticket to a new movie that I may or may not like, and sitting there for 2 hours desperately wishing I could pause the thing and walk around for like 5 minutes just to not want to punch someone in the face.  (This is an even bigger problem if I have to sit next to strangers.)
"A piece for Gretchen Wieners"
So, when my friend showed me the Mean Girls quote a long, I was like, "Cool, I love that movie and I can totes sit through it for the whole time.  Especially at a theater that serves alcohol."  Then we found the Moulin Rouge sing a long, which is both one of my and one of her favorite movies of all time.  We both cried. Multiple times.
That was it, I was hooked.  Here was a theater that showed all my favorite movies, all the movies I quote on probably a regular basis, AND they serve alcohol at the same time.  Did I mention they have a full kitchen?  A DELICIOUS full kitchen.  I highly recommend following the link I included and seeing if there is one in your area.
This is turning more into a rambling endorsement for the theater than it is a blog post*.  Let me see if I can bring it back around.  There are periods of our lives when our diseases and symptoms can make a social life hard.  But this has given me a new way to enjoy life.  And it is true what they say, the more you do the more you will feel like doing.  I recently went to a museum and park here in town.  I've lived here over a year and I'm just now seeing all the things there are to see.  I truly credit the discovery  of these cult classic showings (By the way, they also show Rocky Horror about once a month. No more waiting for Halloween!) with my being able to do simple things like just go to a park and lay in the grass. Or embarrassing my friend by forcing her to  learn how to do bell claps in a public park in front of heavy traffic.  (She did fabulously, I hope she's reading this.)
I'm not saying this theater is the answer for everyone who is having trouble getting out there even when they don't feel 100% (do I hear 30%, anyone?), but it was my answer.  And that means there must be an answer out there for you too.  I would never have guessed that there was a place out there where my ability to speak almost every line of a movie would be embraced. I would never have guessed that I would be there almost every week, and that I would find myself considering going out afterwards (I haven't yet, but I think I'm getting there.) So how do you find your thing?  I don't know. Look at what you love in life, and then try googling that plus the city you live in.  See what comes up.  Maybe there's a weekly meeting for people who once loved making those weird square lanyards at camp while watching Disney movies and want to rekindle the love.  If that's your thing, I don't know that it is, but I'm sure it's SOMEBODY'S thing.
To quote one more movie, which I totally think should be shown in the theater, "Baby steps, Bob."  Find your first baby step.

My Samoan Lawyer has advised me to
commit fully.
See, I totally brought that around.  It was planned from the beginning.

*If the Alamo Drafthouse people are reading this and want to cut some sort of deal, I am totally game.  

Friday, March 20, 2015

First wold blogger problems: "I have to blog in a separate app!"

I mean, truly, if that is what I have to complain about then I must be getting healthier. 
I'm sorry I don't update on here very often.  Here's the thing.
You may remember that I have a FaceBook Page, a Twitter handle, and a Tumblr account all for TheFaceofArthritis.  I can update Facebook and Twitter from an app called Hootsuite, which lets me write one post and submit it to both mediums.  And Tumblr is connected to Instagram, which means I can post directly from there.  
But Blogger doesn't connect to these things.  So I have to (exasperated groaning and sighing) open the actual Blogger app in order to create a post.  Which makes me feel like I have to write some witty mini essay to go with whatever picture or snarky comment I'm posting.  

So again, I apologize for leaving you hanging so much of the time.  But I do encourage you to follow our FaceBook page, Twitter, or Tumblr (remember that Tumblr is really only stupid pictures) for more frequent hilarity and hi jinks. 

Batten down the hatches, boys!
In the meantime, please enjoy this photo of my bunny (Harvey Ping) in a rain hat.  Because it has been raining for 2 days now and it seems appropriate.

Sunday, March 8, 2015

The bigger my ass gets...

... The harder it is to get it up and into gear.  But I've decided that #NothingTastesAsGoodAsNotBeingDiabeticFeels . It's my new motto: screw the "nothing tastes as good as skinny feels" bullshit.  A lot of stuff tastes better than skinny feels. But nothing tastes as good as taking care of your body feels. 

Don't take it the wrong way, diabetes is a legitimate problem and a lot of people don't have a choice in the matter.  But I DO. And the people who have a choice should make the right choice; especially if they already have plenty of other things to take care of on their bodies.

I owe it to myself- we ALL owe it to ourselves- to put as little extra stress on our bodies as possible.