There I said it. I don’t want to take them. Not because of any side effects or anything like that. But just because I don’t want to. Every time I look down at my handful of pills (at night I swallow around 10 pills in a myriad of colors, shapes and sizes) I feel like throwing them at the wall. Because that isn’t my life. I’m not a pill taker. I’m not sick. I’m in my 20s. I’m healthy and happy and carefree.

Only. I’m not. Yes, I’m in my 20s. But I’m not healthy. And when I don’t take my meds I’m usually not that happy and definitely not carefree. And I do take pills. Lots of pills.

S and I have talked about this a lot over the past year of our friendship–how there is a psychological block or disconnect–that maybe, just maybe, this time we won’t need our meds. That today our bodies will remember they are young and virile. That if we ignore our symptoms, pretend they doesn’t exits, that they will cease to. Mind over matter. Right?

Unfortunately, hell hath no fury like a body deprived of it’s meds.

And so, as I sit here, my stomach roiling in acid, my bones feeling as if they are going to implode and my brain foggy like London, I tell myself that today I’ll remember to take my pills. Today I’ll pour the Gastrocrom into a glass of water and drink it all. And in a few days I’ll be feeling better.

That is if I don’t throw them at the wall first.

So you have this disease.  That sucks.  You’re going to have it forever?! That really sucks.  Now what do you do?

Do you spend a bunch of time feeling sorry for yourself?  Probably.

I didn’t realize this at the time, but I was going through the Stages of Grief, mourning for the loss of my clean bill of health.  As far as I was concerned, I was never going to be completely healthy, and after:

1. denying I was in pain, and
2. getting angry at my body and about my disease.
3. I bargained and tried to compromise on my physical needs, hoping to regain control over my body.
4. Depression hit me like the titanic hit an iceberg.  I didn’t sink, but there were times I wanted to.
5. Accepting reality became all that was left.

When acceptance is the only option, it’s time to figure out how to move forward. Right?

Trouble is you need the acceptance of your loved ones too.   I went through an extremely hurtful situation with my ex (N).  I have to give myself my weekly Enbrel injection–something I loath doing anyway–and N asked me not to do it in front of him because it wasn’t a very sexy thing… Hmm… No shit!  But what a dick thing to say out loud.

I’m seeing someone new now, and I’ve avoided giving myself injections in front of him.  I’ve hid in the bathroom so he wouldn’t see.  I’ve intentionally changed the day of my injection so he wouldn’t be around.  Last week, I had pushed my injection off a few days, in part to avoid embarrassment, in part because I hate the damn thing.  I was starting to feel the fact that I hadn’t taken it, and broke down and gave myself the shot right in front of him.  He rested a hand on my back while I practiced my yogic breathing–inhaling deeply, exhaling and pushing the injection further in; inhaling, exhaling and pushing more.  When I was done, he pulled me into his arms.

I didn’t know someone could be so accepting of me.  I didn’t realize how much I needed that.  I cried.  I actually cried.

I still haven’t fully accepted it myself, but it’s about time I learn how.

It’s getting cold too quickly.  Weather.com tells me that there’s a chance of snow this weekend.  Aside from the annoyance that we longer have seasons (it’s October, where the heck is fall?), a long period of cold is really bad news for my joints.

Rhuematoid arthritis is a condition of heighten and chronic swelling in the joints.   And I’ve found that it’s particularly sensitive to cold and elevated humidity.   With my doctor, we had worked out a cocktail of drugs that had my condition pretty well managed through the warmer summer months.   I would wake up with the ability to use my fingers and toes, less swollen, less painful.  Cold weather, especially a wet cold, completely messes up that well working chemistry system.

I didn’t need a weather report to tell me it’s getting colder.  When I wake up, I’m swollen for longer.  I linger in bed because the balls of my feet hurt.  Even right now, I can’t close my hands into a full first.  Even if the swelling wasn’t painful, it’d still be causing lasting damage to my joints.

Damn the cold I say.   Every year I tell myself I’ll move somewhere warmer.  Eventually, and despite the things that keep me here, I think I’ll have to preserve my joints.

Since I was diagnosed with RA, I’ve tried all sorts of drugs and remedies.

At the time of my diagnosis, the rheumatologist I was seeing recommended putting me on a very high dosage of steroids and a drug that I wouldn’t be allowed to drink alcohol while taking (methatrexate).  Obviously health always comes first, but I got the news about my RA just weeks before my 21st birthday.  I resisted this treatment on both fronts, wanting desperately to have a normal college experience, and because a doctor friend informed me that she would only give the amount of steroids prescribed to me to someone that was dying.  Great.  Double whammy.  Not only I did this treatment require my long-term sobriety, it was also good enough to help a dying person make it through their last days.  That was precisely what I wanted to hear at almost 21.

I saw a new rheumatologist when I returned to school.  The first one was back home, across the country, and I was going to need a doctor who could manage my case on an ongoing basis.  She recommended the same treatment as the first, but we agreed to compromise.  We would start with a less severe dose of steroids and a more lifestyle friendly alternative to methatrexate.

It was fall semester of my senior year of college.  I was on a reasonibly high dosage of predinisone, and a low dosage of sulfasalizine.  I was to slowly decrease the steriods (predinisone) and slowly increase the amount of sulfasalizine.

The doctor friend of mine gave me more advice.  If at any time while taking the sulfasalizine, I experienced a rash, redness or any skin irritation, I was to stop taking the drug immediately and call a doctor or go to the hospital, as the rash would indicate that my body was going into shock.  One night, just before I was to take the GREs, I turned beet red, flush and itchy in the shower.  It was late, I was hoping for a good night sleep, and I was going into shock instead.  As it turns out, I’m allergic to sulfer (sulfa-based drugs).

You know what that meant?  No more alcohol for me…  I was put on methatrexate, after my doctor accused me of lying to get out of an exam.  (An issue I will need to return to in a future post, as the accusation comes up quite a lot when you’ve got a physical condition that doesn’t respond well to medication and people around you who don’t understand it.) In addition to the methatrexate, I was given folic acid.

The methatraxate wasn’t enough to keep the swelling down.  To avoid permanent joint damage, my doctor then put me on Enbrel, a newer RA drug that was still getting advertising play.   Enbrel makes its way to consumers in two forms, pre-filled syringes and sure-click pens.  I started with the pens, still taking methatrexate, and went looking for a new doctor.

My newest doc wanted to work me off the methatrexate.  He likes to say that it’s not a good drug for a young woman.  What he really means is that if I get pregnant while I’m on the drug, right to choose is out the window–I would have to have an abortion.  So although I was on birth control prior to my RA diagnosis, now it’s by my doctor’s mandate.

Since switching to the new doc, I’ve  switched to the pre-filled syringe, replaced the folic acid with leucovorin and also now carry a script for an antiviral.  Apparently, all these immunosuppressants make it difficult for my body to fight of cold sores…

Now, once a week, I push the contents of a pre-filled syringe into my thigh.  I take a couple of pills here and a couple of pills there.  And I try to lead a normal life.

How does it all make me feel?  I’ll get to that next time…