Tuesday, May 29, 2012

Does This Chronic Illness Stuff Ever Stop Feeling New?

I’ve been at this for four years now.  But I don’t feel very practiced.  I feel kind of, well, not numb.  The opposite of numb?  Like I’m wading in quicksand?

To be honest, I don’t know how I feel right now.  But I wonder if this ever gets easier, ever gets less pressing.    

I’ve been wondering lately if I’ll ever get ahead of my illnesses, if someday, I won’t feel quite so much like a sick person.

But it also worries me.  What happens when I get used to this?  What happens when things no longer rock my world off its axis?  What happens when abnormal tests, abnormal blood work, abnormal everything, becomes the rule rather than the exception?  Am I there yet?  Am I already there?

Blood work has become old hat.  I’m no longer a novice at injecting myself.

I bruise easily physically.  But emotionally, too.  It’s exhausting to be on guard all the time.

But it seems like every time I start to relax, every time I start to feel like things are turning around, I’m dealt a new blow.

Because just when I get comfortable, something new and unexpected happens. 

I received an e-mail from my rheumatologist that my latest blood work showed increased levels of Creatinine.  My rheum has referred me to a nephrologist.  My rheum is not an alarmist, but I am concerned that he thinks whatever might be going on now is not within his purview. 

Another new member to add to my medical team.  Yay!  Not!

So, with the Humira, the RA seems to be managed right now, and now there could be kidney involvement due to lupus?  This just stinks.  I said the “F word” out loud when I read the e-mail.

I was like, you’ve got to be kidding me.  Can’t a girl ever catch a break?

So the newest thing is the Humira.  So far, I think my experience with Humira has been mixed.  I guess you could say that the scales are tipping more in the good direction, but that doesn’t mean that there hasn’t been a fair share of bad or annoying.

The good part is that, for the most part, I feel good.  Imagine me doing a little dance like Kristen Wiig does in the movie “Bridesmaids”, when the cop makes her walk the line to see if she is drunk. (See video clip below)

I’m doing a dance like that.  See, I feel great!  Look what I can do! 

But my head feels like it’s going to explode a lot of the time.  Humira continues to wreak havoc on my sinuses.  And, whether it is my seasonal allergies coming out to play earlier or part of the effects of Humira, I constantly have this congested, stuffy head, mixed with a watery nose and eyes.

How is it even possible to simultaneously be stuffed up and drippy?     

I wonder when you consider a drug no longer new.  I’ve been on Humira for almost two months now.  And I still feel very unsure about the whole thing. 

I’m on the pill, but since I started Humira, things have been weird, off, in that department.  And they shouldn’t be, since the pill usually spells consistency.  This concerns me a bit.  But I did find online that this can be a rare side-effect of Humira. 

And I’d go to the doctor, but…Oh, wait!  I don’t have a PCP right now because my amazing one retired and I’m too in denial to replace her.

And I’ve noticed that a few days before my next dose of Humira, I feel like I’m getting a fair amount of breakthrough pain.  I’m not sure if this is typical, or if my body still has to get used to it or what. 

Can you tell I’m a creature of habit?  I’m not too big into change. 

Dose number four of Humira is tomorrow.  I have an appointment scheduled with the nephrologist. 

And I guess I’m waiting for the punch line.  I’m waiting for this bad dream to end.

I’m sick.  I know I’m sick.  And I know it’s a forever thing.  But does it ever get easier?  Will I ever feel seasoned?  Like a pro?  Like the scales have officially tipped in my favor? 

On the other hand, do I want to feel seasoned at this?  Because once I do, illness has become the premier thing in my life.  And I don’t want it to.  But I don’t know.  Maybe it already has…


  1. Speaking as someone who's been sick for 26 years, since I was 2, I'd say that "getting used to it" doesn't necessarily mean that illness becomes the premier thing in your life, or that you're never going to be surprised or overwhelmed by it. I do think things get easier eventually, and you start to be able to ignore some aspects of your illness because you're so familiar with them. I no longer really think about pills or injections - they're just an ordinary part of my life, and definitely not the most important part. I think that's a good thing.

    That said, illness still has the power to surprise me or make me sad and anxious. I think that's always going to be there. The good thing about being sick for so long is that I trust myself to handle it and come out the other side.

  2. I've had RA for 16 years now. It started out so mild, slightly annoying. That is so far in the past. I think this "getting used to it" isn't really so much about getting used to "it" but getting to know ourselves better..how to handle the aspects of having RA. Somedays, the pain and the ensuing frustration throw me for a loop. Others I can manage to take things in stride and look forward to things. It's a tough battle and tight rope to walk to keep it all in balance. It's a journey. But remember, even those without RA are on a journey, different, but most likely they have their own rough things to deal with and to learn from. It does help to know we are not alone. It's good to distract ourselves when times are rough. God bless friends who remain friends even though we are sick.