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Enbrel injection

Good times

I wrote this a few months ago when I was feeling like shit. And for some reason, I was too proud to post it.

I’m better now and less proud, so I’m posting it to remind myself: this too shall pass.

As I’ve written about before (a couple times actually), I was diagnosed with rheumatoid arthritis about nine years ago. I spent the first two of those years in a lot of pain and wondering what the hell was wrong with me.

While various doctors worked to find me an actual diagnosis, I popped a lot of pills that didn’t help my pain very much (nor did they have any narcotic effect, so they weren’t any fun either).  But they did do other weird things to my body–like making my hair fall out. And making me fat.

One doctor thought I had Lupus. Another RA. I picked the RA guy and he started me on Enbrel. Awesome, right? Well..

Enbrel isn’t a pill you can pop. It’s an injectable  medication. Which means, I got to mix my meds, fill a syringe and stab myself with a needle 2x a week. I got to keep a sharps container in my office closet. And I got to walk on an airplane with my needles in my carry on and my doctor’s note in my hand.

It was awesome.

Lucky for me, I actually got better. A lot better. I could walk again. I could chew food again. I could hold a book and I could even sign my name again. It was really awesome.

In the years that have passed since my two years of unbelievable agony, I have still had pain now and then. But nothing like it used to be. I haven’t taken Enbrel in years and my rheumatologist has declared me his first “cure” eva.

The rub?

I still have rheumatoid arthritis.

I’m tired a lot. My joints hurt a lot.

And no one knows.

No one can see it.

And I just deal. I just muddle through. And I get really annoyed and frustrated and even angry  sometimes.

And people probably just think I’m being a bitch. Or that I’m lazy.

But, I’m not really. I’m just in pain and I’m tired and I hurt.

And it sucks.

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Again, sorry for the long lapses between posts. Unemployment can be a real time-sucker.

Thought I’d update everyone on my recent activities since my life is that interesting and I know you are all dying to know. Read the rest of this entry »

There’s a lot of talk around Washington these days regarding health care reform. But do any of us think that a bunch of bureaucrats lining their pockets with health insurance company campaign funding are really going to make changes necessary that benefit sick people?

I have my doubts.

So, I have an alternative plan–one that may be met with some resistance at first. But I’m sure you’ll realize soon enough that it is the only alternative we have–kill all sick people before their health care costs get out of hand. Read the rest of this entry »

I know I’ll probably never have the satisfaction of really knowing exactly what is wrong with me–some unknown, unnamed auto-immune thingy that will rear its ugly head whenever it damn well pleases.  So, I try not to dwell on it. I know things could be A LOT worse and I don’t want to stir up any trouble. And for the most part, I get by pretending nothing’s wrong with me.

But as luck would have it, an alien has come to live inside me whose mission is to remind me daily that there IS something wrong with me.

Lately Mr. Alien has been torturing me in small annoying ways.

First, he made a couple fingers on each hand feel swollen and the joints painful, but he made it just so that other people can’t see any swelling. No big deal. Just a couple fingers. Who needs those? I don’t really.

Unless of course, I need to type anything on my computer. Oh, and if I need to pick up anything. Or open something. Yes, then it kind of limits me. Oh, and if I need to shake someone’s hand–and they happened to have a firm handshake–then you will see me cringe in agony. But until that moment, I look totally normal.

Good for me.

Now, my alien has moved on. He thinks fingers are boring and would like to torture my left wrist for awhile instead. Again, not too much visible swelling so as not to draw too much attention from others, but bend that sucker the wrong way and OUCH! I’m totally at his mercy.

Again, not much need for one wrist–except for the fact I’m left-handed and pretty much find myself unable to lift anything or do anything that involves using that arm. Did you think that maybe I was just lazy? Mr. Alien thinks that’s real funny.

Mr. Alien also likes to amuse himself by sapping my energy and sending stabbing, electrical pain deep inside my bones. Shooting pain that’s there for a moment–and then gone again. Like maybe I just imagined it, because I’m a sick pain-loving freak. Or at least that’s what Mr. Alien thinks.

How long will Mr. Alien amuse himself with my wrist? I wonder. Maybe a couple more weeks? Maybe forever. Time will tell.

And where will he go next? Feet are always a good option. Or a knee. Limping seems to keep him amused for a while.

Why does he do this to me? I think he likes to remind me that I’m not all better and maybe never will be.

But don’t worry.  I can beat him at this game. I’ve done it before.

I work. I play. And I go on. Despite his insistence on barging into my life, my body.

Are you listening Mr. Alien?

You’re not welcome.

You shouldn’t be here.

I hate you.

You will not defeat me.

I will go on despite you.

I know I’m lucky.

But sometimes, I need a reminder.

Like for the past few days my hands have been stiff and painful.

Oops. Looks like I overdid it. Read the rest of this entry »

I could have ran the Boston Marathon today, but I didn’t.

Why not, you ask?

1. Too Easy. I ran .2 miles over the past week (although I haven’t actually measured it, I’m sure all those errands add up to something), so I’m sure 26 more would have been a cake walk. I’m holding out for a real challenge, like 500 or 1,000 miles.

2. Too Cold. Down right nippy today. I prefer running in 90+ degree weather with high humidity.  Africa is where the “real” marathons are run. Just ask a cheetah or a gazelle.

3. Don’t want to take away from other’s amazing stories. I’m fairly certain that if a story broke about a 36-year-old couch potato living in Ashland running in the Boston Marathon, it would definitely steal the spotlight away from the Hoyts or the bunny men below. I just couldn’t live with that kind of guilt.

Who am I to steal their thunder?

Who am I to steal their thunder?

Read the rest of this entry »

After writing my first post about how I’ve been getting on with my life since being diagnosed nearly eight years ago with Rhuematoid Arthritis (RA), I have been thinking a lot about how my friend, my enemy, RA, has changed me. I’m not a different person just physically, but RA has had a hand (like it or not) in shaping the choices I’ve made as a mom, the friendships I’ve made since, and the profession I’ve chosen to pursue. Read the rest of this entry »

Strange, I barely remember the pain now, but eight years ago, I was a mess. I went from an energetic, 20-something, new mom to a barely able to walk, couldn’t hold a phone, couldn’t tie my shoes, couldn’t turn the shower on myself, had no energy, totally exhausted invalid. Read the rest of this entry »