RheumaBlog

Same dragon, different day.

Today is the third day of a dull, all-over flare about an hour ago.

I injected my latest Humira dose the day before yesterday. And I thought, “well, maybe I’m hurting a lot more today because I’m at the end of that last, two-week To Dodose.” The thought was both hopeful and resigned. If I was feeling worse because the Humira was wearing off, that meant it was actually working (I felt better after taking it). That was the hopeful part. On the other hand, more pain might simply mean my rheuma-dragon was getting stronger—and the Humira was another useless weapon.

But it’s only been a couple of days. Hopeful Wren tells me to be patient, let the Humira kick in. Pessimistic Wren tells me to chuck the happy-crappy and face the truth. The stuff doesn’t work.

Then rational Wren chimes in. These drugs, she says, can take a long time to work. Usually, three to six months. It’s been almost three months, yes, but that doesn’t mean the Humira won’t ever work. And you know when you see the doc, he’s going to tell you to be patient and give it another three months. And you’ll nod and say OK because, really, what else are you going to do?

Sigh. Naturally, I hoped this fancy, new (to me) biologic DMARD would quickly turn the tables on my rheumatoid disease. I was looking forward to waking up in the morning without being as stiff as the tin man. I thought it would be so nice toGet-Out-of-Flare-Free_21 put on my house robe with hands and fingers that didn’t gripe and yell with pain. I was looking forward to swinging my legs off the bed and standing up—and not even noticing my feet because, of course, there was no reason to notice them. No stiffness, no pain, no nothing.

And I was looking forward to going through my days without being constantly reminded—by suddenly aching joints, sudden twinges, constant low-level soreness, and a mild but insidious fatigue—that I have an incurable disease that may cripple or even kill me one day, whether I take medications for it or not.

Do you guys go through this too? This constant, involuntary inner dialogue you-get-used-to-itabout being sick? I get so tired of it. My mind’s constant grousing makes me feel like 1) a weak, sniveling wimp, 2) a complainer (even if I don’t say anything out loud to anyone), and 3) a histrionic hypochondriac.

Yeah, I know better. I’m really not any of those things.

My life up until age 31 was perfectly normal, with all of the normal illnesses and injuries: chicken pox, skinned knees, an occasional bout of flu, a sharp pneumonia and a couple of bad sprained ankles when I was a teen (platform shoes), and seasonal colds. I only thought about feeling bad when I felt bad, and that was relatively rare.

The same applies to those six years when my RD mysteriously went into medication-free remission. The only difference was that I can only recall a single cold during that period.

But when my rheumatoid disease is active, whether it’s mild or severe or somewhere in between, it forces my mind to dwell on it. And that makes me question my own feelings, and sometimes, my own reality.

On to more pleasant news: Mom and I dragged out the decorations and brought Christmas into our new home. This is a hard time of year for her; Christmas just hasn’t been the same for her since my Dad died, and the holiday brings with it 592014 Christmas 2 years of memories—with Dad as the central character.

But this year she was the one who brought up decorating the place. I’m so glad! She doesn’t miss him less, but maybe living in a place that’s not connected to memories of Dad is soothing her pain a little bit. I hope so. We had a good time putting up the tree, choosing and hanging the ornaments, talking about the memories each one brought to the surface, and setting out Santas and elves and pinecones and sparkly candles all over the place. It made us both laugh and smile, and you know what? There’s nothing better in the world than that.

Thanks for listening to me rant today. Felt good to put it in words—a catharsis, in a way. I hope this post finds you feeling good and enjoying the holiday season and the close of another year on this precious old planet we all call home.

11 thoughts on “Inner Dialogue

  1. I’m so sorry. But yes, you need to tell the doctor that it’s not working. After three months you should be seeing some relief and (hopefully) you were feeling worse because it was time for your injection. I’m glad you decorated and I know that if your mom is more cheerful, that can only help your mood. Do take care. Sending hugs.

    Like

  2. Irma says:

    I talk to myself all the time, Wren. Especially about what my body is up to. I too wonder if my meds are sufficient and hate that I have to take them or else switch to others. But, what can you do except keep on keeping on. Every day is a gift and every day my hands don’t howl is a wonder to behold. I hope you start feeling better soon. The Christmas tree is beautiful and where can I get one of those ‘get out of flare free’ cards?

    Like

  3. mary says:

    Sorry to hear the humara isn’t doing the trick. Didn’t work for me either but my doc switched me to embrel and that did the trick. I know it’s frustrating and disappointing but hang in there. As you know each biological is a little different come at your immune system a little differently.
    Decorating always seems like a challenge but I always enjoy it when it is done. Hope you feel better soon.

    Like

  4. Betty says:

    See if you can have your doctor give you Cimzia – you get two shots in your belly or can have it put in your veins. Mine worked in about 3 – 5 days and the doctor said in 3 months I should feel even better.

    Like

  5. Betty says:

    Forgot to say that you have the Cimzia eery two weeks for 3 weeks and then every 4 weeks thereafter.

    Like

  6. anet37 says:

    It actually took 6 months for me to see the benefit I was getting from the Humira. But even with it working (or maybe working less well after 6 years now) I still wake up with sore hands and an aching neck. After I wash my face I straighten up by degrees. I don’t know of it’s pills or activity that makes it ease up as the day passes. Good luck to you.

    I really wish to try something else but If I do I can’t go back to Humira if the new drug doesn’t work.

    Annette

    Like

  7. J.G. Chayko says:

    My mind doesn’t quiet down – first I gripe about feeling miserable, then I gripe about the fact that I’m complaining when others are worse off then me, then I tell myself the flare will subside, then I wonder how long I should endure before going to my doctor to get help… it’s a constant dialogue. I hope you feel better soon, and that you can wake in the morning, slip into the comfort of your robe as flexible and nimble as if you were in your twenties.

    Like

  8. Hi Wren, Sorry it isn’t working for you yet but clearly from Anet’s comment there’s still hope! And yes, I think we ALL do that dialogue thing – I know I do, especially in the middle of the night!!!

    Like

  9. Sabine says:

    Do I know days like these! Feeling miserable, thinking how unfair it all is – I could spend days and nights plus lots of energy on this.
    But mostly now, I find that there is only one trick in my box of magic coping skills that works: expect nothing. And I don’t mean this in a defeatist sort of way. I am not a grin and bear person. But it helps too face the hard – and the easy! – times with patience and a gentle heart. Deep breath etc.

    Apart from this mushy talk, I do advise you to get back to your doctor and discuss whether humira is actually doing its job or not.

    Like

  10. Jules says:

    I hate that the Humira hasn’t kicked in yet for you, Wren. I hate the guessing game that goes with all of these drugs that we hopefully pump into our bodies while we use the band-aid of pain meds. Yes ma’am. I have that inner dialogue like the rest of these ladies have said. I don’t think any of us can get through a flare without it. I also find that my inner dialogue gets louder the more I want to rail and the louder my inner voice gets, the quieter I become both in writing and verbally. While it holds no answers my inner voice “gets it” and will listen to me gripe for months. It’s a double edged sword though because “she” will allow me to be more bitchy and petulant then I could never bring myself to be outside my head. I fin that the more I spiral down- the more it feeds the exhaustion- and you know where it goes from there. I hope that either the Humira kicks in soon- or your rheumy changes you to a new course of treatment. I hope that she-in-your-head brings you comfort but does not allow you to spiral. I hope that you and your mother have a lovely, quiet, painless holiday.

    Like

  11. abcsofra says:

    Dang! Sometimes even the DMRADS don’t do the trick. I hope in your case that isn’t the case. Humira never worked for me. You have a very merry Christmas and I love your tree!!!

    Like

Comments are closed.

%d bloggers like this: