The Specter of RA: Is Remission Real?

great post! I don't do yoga, but I was imagining every move, and thinking to myself that I had that same fear when I get brave enough to push past my 'normal' limits, like trimming tree bushes with manual trimmers.  When I cut down my bushes a few weeks ago, it was the day before getting on a plane, and I was terrified I was going to awaken that RA ghoul on my back.  But alas, all was quiet! 

     The biggest question is, is it remission or is controlled?  I don't know what it is, but I sure like it!  I like not thinking about that nasty disease or allowing it to occupy much space in my daily thoughts!!  bravo!  ~Des

Hi Sara,

Glad you are doing so well! I say: do all the stuff you wish you could do before (when you couldn't). Hopefully, it will just keep going...

Kelly

How in the world is this helpful to RA victims?  It provides no new information.  It leaves us with a feeling that no matter what we do we are not in command of our bodies.  This kind of writing is not of value to me nor to any other RA cursed folks I know.  Where would you see value in this?

It seems to me that a continuing flow of meaningless information serves little to educate us or show us a way to improve our RA dominated lives. 

The other day,someone on the site asked me if I was in remission.  I couldn't answer. It felt too much like if I did, my RA would come back the very next day. I am hugely superstitious about this - I'll say that the Humira is working well for me, but I will never use the R word.

It can be terrifying to feel well - I once called it Living Under the Shoe. The RA is there, lurking, could go off at any minute and so I try to live quietly, not bringing too much attention to the fact that the Humira is working pretty well.  And I remind myself of the litany against fear in the novel Dune: "I must not fear, fear is the mindkiller" etc.  Not being afraid, not giving into it really is a conscious effort most days.

Thanks for the post Sara. Are you still taking Enbrel?

Hi

Sara has just narrated a great truth in the lives of RA patients. The fear of RA lurking behind us. But try not to be disappointed. I am sure you feel the same way too only now you have other people having the same feeling so you are not alone.

I have never been on remission it is just bad days and good days. I make the most of my good days and on the bad days I wait for the good days. That carries me through my work in my institute, in my home and in my social circle with a smiling face. So stop being angry, smile and put your best foot forward. You need it to get rid of the thoughts of RA ghost.

Ratnapriya

Hey Sara

Greetings from London! I've been reading your blog for a wee while now and am really prompted to comment on this. I can so identify with your comments. As an astanga addict and mad keen sailor I was diagnosed with RA just two years ago. All sport and activity stopped for me and it's been a long haul to get back to a degree of normality. This week I'm celebrating - my first trip to the gym in about 2 1/2 years and yes, I spent the next 12 hours panicking about the possibility of a flare but it didn't happen! So my next step is a yoga class - I never thought I could get so excited about the potential! Keep blogging, we're right there with you.   

I was so happy to read about your feeling better. Wow, what a HUGE DEAL. And just think, every year the therapies will get better and your odds of transforming your RA into RIP will go up.

Jeff

I go to a massage therapist for my RA who is amazing at body work and so much more.  Last time, I told her that I was physically feeling so much better, but couldn't stop being "a sick person".  I was muscle guarding, slouched forward, and still felt terrible just from feeling terrible for so long.  My boyfriend couldn't even sit down on the couch next to me without me getting all jumpy and worried he might sit on my foot or bump my hand or want to cuddle (Good god, man! Do you know what evil potential of physical pain is in cuddling?  Back off!).  I was having a hard time getting out of my sick person cycle. 

She gave me some good advice.  She showed me exercises to help my range of motion, push back my shoulders, and open myself up.  But, the bit of advice she gave me which has helped me the most to date is to smile when it hurts.  So, when I tweak a finger while writing or have pain shooting up my leg while walking, I'm just smiling.  It really does help me feel better, although it also seems a little crazy.  But, really, you can only be a sick person for so long until you are perminately stuck there. 

So, Smile when it hurts.  Life is still good.

Hi I enjoyed reading all your wrote and know exactly how you feel.  I was diagnosed at 54yrs and now 62yr, I"ve been an athletic person for alot of yrs swim, bike, run and yoga at times.  I am still active and so grateful for this.  I have asked my dr more than few times what is this remission?  He told me I was in clinical remission.  So as I read someone wrote we are managed by meds. Than I think great the meds, I'm on enbrel for 8 yrs and scared of it but than its our quality of life.  I try so hard and pray that I live this one day at a time.  sometimes its really hard to think I'll be managed as long as I have the insurance to manage it.  So when I let my head go there I get all crazy thinking and go back to how crippled my grandmother and mother became.  Its a nasty disease but we are so so lucky that we have a horrible disease that for now can be managed.  WE are controlled and I pray that every one of us will get insurance to keep us controlled thats my pray for all of us w/this nasty disease that keeps on lurking w/our every step and every breath every day.  Thank you for you thoughts Linda N.

Hey There,

I understand your fears - trust me.  I remember the first time I found real relief; it came with Remicade and lasted about 7 or 8 months.  After the first three months, however, I had a flare one weekend.  I completely unraveled in front of my husband.  He fortunately recognized the panic.  I had come so far... I had lived as a "cripple" for years, and there was no way I was ready to go back...not after only three months.  He sat helplessy on the floor rocking me, fighting back the tears himself.  I was lucky that time. The flare came and went, and I was overjoyed to find it was a momentary setback.

This past summer, however, we made the decision to come off only one drug, the methotrexate, so that I could try to conceive that second child we had been wanting for so long.  After one month, my body began a downward spiral that happened so quickly, it would make your head spin.  Within two weeks, I not only found myself as bad off as before, but worse.  We made the heartwrenching decision to restart the methotrexate.  And yet, two months later, I am still a wreck.  Years after I have been diagnosed with this illness, I still cannot come to grips with the physical and emotional havoc it plays with my life.  The thing my Dr. seems not to understand is that life, like my illness, is a delicate tightrope act.  As soon as I become ill, everything else spins out of control, and I fall deeper into illness. It is a self-perpetuating situation.  It is best just to hang onto remission as long as one can.  I know that now.

All my best,

K

Sara, I ready your story and new adventure of moving to Baltimore with a feeling of woops, am I intruding in a gals only site. But with the lack of real world info for guys I thought here goes anyway..I've got mild RA and am starting yoga to keep me limber and help with back pain while sitting at my work desk...You mentioned that the yoga seems to be helping and am I hoping the same happens to me...What moves do you do that help with wrists and knee flexiblity?? When the move hurts do you just back off the pressure slightly or bounce into it gradually??

Good luck with finding doctors you are comfortable with. I'm lucky as my wife is a trained healing touch practioner and aromatherpist so when I feel bad she's can give me a tremendous pick me up..She gets more diverse and natural options going to a doctor who is certified for alternative medicine...You might try the same..

As a back up I have Voltaren-1% cream and it works gret for 4-6 hours...

Blessings on you for a future full of hope, comfort, and just good laughs...

Klove in IN