Wednesday, November 16, 2011

The “I” Word

Injectable.  Injection. 

This is the very thing I have been trying to avoid since I first got sick. 

I’ve never been a fan of shots, IVs, or needles of any kind.  While I’ve gotten more used to them as time goes on and I have had to stare more and more of them down, I still have a hard time stomaching the idea of sticking a needle into myself.  And I haven’t had to.

But that’s about to change.  Because I saw my rheum today.  

He measures how I’m doing by the mobility and inflammation in my elbows and wrists.  And needless to say, he wasn’t impressed.  He said that he thinks we can do better than where we are at.

He asks me if I think we should make a change in medication or keep things as they are.  I tell him that that’s a difficult question for me to answer.  I never really know what to say to that question.  If I say yes, am I admitting defeat?  And if I say no, am I being headstrong?

It doesn’t matter.  Because I can tell that he has an answer. 

So what is his answer?

A higher dose of Methotrexate (MTX).  I’ve been on 10 mg of oral MTX for over a year.  We believed that 15 mg was a better dose for me, but I couldn’t handle it.  There were too many side effects taking it orally.

So now I’ll be injecting myself once a week, in the hope that things will improve. 

I’m frustrated.  Where does it start and end?  I keep skirting a boundary and crossing lines I once told myself I would refuse to cross.  On the other hand, I have refused to be on daily Prednisone.  And I feel as if I can’t refuse something new or different until I’ve given it a fair shake. 

Especially since there is an unfortunate reality that I continually have to face.  After a year or so on a med, my body seems to plateau and the med seems to lose efficacy.  While I try to be optimistic, this is a continual struggle with my treatment.

And my rheum talks about quality of life.  And the potential for me to get a Cortisone shot in my hip.  But we will wait on that.  One thing at a time.  One foot in front of the other. 

And that’s when reality hits me like a shit ton of bricks.  This is a forever thing.  This may be the best I will ever feel again.  I have to do things that I never imagined would ever be a defining factor of my life. 

I’ll admit, I’m feeling a little sad right now.  Spending over two hours at the hospital today, seeing my rheum, getting educated about self-injection, getting a flu shot, and getting blood drawn, I feel like a sick person.  I feel overwhelmed.  It’s a lot to take in.

Seeing my rheum every six months gives me a false sense of security.  I was beginning to think that I was handling things on my own.  But how can you handle things that you can’t control?      

I can only hope that injecting myself becomes second nature, something that I don’t give much thought to.  Because right now, I’m filled with apprehension.  What if I mess up and do it wrong?  What if it makes me feel worse?  What if, what if, what if? 

But I can’t focus on what ifs.  I have to focus on what is, and what will be.    

Am I going to let a little needle get in my way? 

I hope not.

I hope that other I words will rise above the inevitable. 

Invincible.  Indestructible. 

That’s me.

I’ll keep you all posted on how my first injection goes. 

Wish me luck!

(Oh yeah.  In other news, my insurance rejected my latest physical therapy referral…)

Monday, November 7, 2011

Forgive Me Rheumy, For I Have Sinned

Ah, there’s nothing like full disclosure on Monday morning…

Over the past couple months, I haven’t been a model patient.

I would say about four to six times in the last month, I haven’t been able to sleep.  I just roll around.  My brain won’t shut off.  And I can’t figure out what’s messing up my sleep cycle.  Then when I wake up, I notice that I forgot to take my nighttime meds.  And then my lack of sleep makes total sense, although I am sad to discover that I am obviously still in need of meds to help me sleep.

I don’t take sleeping pills.  I take a muscle relaxer and anti-anxiety meds.  It took me and my rheum awhile to figure out this combination.  When I first got sick, I realized I wasn’t sleeping well because 1) when I would lay in bed, it felt like my bones were crushing in on each other and 2) for an amount of time, when I was at my sickest, I worried that if I went to sleep, I wouldn’t wake up (maybe a very irrational, but very real fear).   

I’ve always viewed it as okay to occasionally skip or forget to take my nighttime meds.  Not on purpose, but I really thought I didn’t have to worry that the world would cave in if I missed a dose.  Now I’m realizing, however, that they serve a very real purpose in my life.  I can’t sleep for shit without them.

I’ve also been a delinquent patient in another way.  I haven’t totally followed through on the “no drinking alcohol” rule.  I’m not really sure how serious of an offense this actually is.  I’m not a big drinker, but for some reason, when you’re not supposed to, it suddenly makes doing it so much more palatable.  But I realize now that because 1) I don’t drink that often and my tolerance is low and 2) I think the meds make the effects of alcohol more potent, when I do drink, it hits me in ways that makes me never want to drink again.  Don’t worry.  I won’t make that mistake again any time soon. 

Also as of late, my fatigue has begun to increase.  I have a feeling that it getting darker earlier has something to do with it.  And therefore, I’ve increased my coffee intake from one cup a day, which I’ve been relatively staunch about in the past, to no less than two cups a day.  But the thing is, and we all know this, caffeine doesn’t do much to cure this kind of fatigue.  

So what gives?  Why have I become a dose-skipping, alcohol-drinking, coffee-addict? 

Needless to say, when you’re feeling reasonably well, it’s easy to push the envelope a bit.  But it’s stupid.  Because as soon as I get welcomed back into pain land, I realize how good I had it when I wasn’t in pain.  My workouts this past week have been horrible.  My knees burn the entire time.  And you how you can grab a cat by the nape of its neck?  It feels like someone is doing that to my shoulder.  It’s not pleasant.

All in all, though, I have an appointment with my rheum in a week and a half, and honestly, I feel like I don’t have all that much to say.  My right hip and elbow are a constant struggle, but that’s pretty much a given in this body of mine. 

And I don’t plan on telling him about my few transgressions.  I wouldn’t want him to think that I’m trying to sabotage this period of relative health.  Because I’m not.  And there are certainly signs that I’m in active disease mode.  My left neck gland is swollen.  Does it ever get un-swollen, I wonder?  Well, I know it does, because now that it’s swollen, it hurts.  And I’ve developed a gash on my lip that just won’t heal.  I don’t know how I got it; seems like my lip has a mind of its own.  It looks like my non-existent boyfriend punched me in the lip.  Yeah, it’s that good.

So let’s be realistic.  We aren’t model patients 100% of the time.  I think we tend to be better patients when we are feeling worse.         

Ultimately, it’s my responsibility to get back on track, and I’m writing this post to hold myself accountable to do just that.