Wednesday, January 25, 2012

The R-Word

I know I've promised a couple of times recently to write a post about the R-word, and I have to admit that I have honestly been thinking about it a lot lately. So here it goes:

For those of you who have no idea what I am talking about, the "R-word" is "Remission." (There. I said it.) Considering the trials and tribulations of the past three and a half years, sometimes that word seemed too magical to say (type) out loud. You mean all the pain, fatigue, and suffering could just....go away? I could actually feel normal again? I could go back to doing everything I want to do?

Since getting pregnant, I've been thinking a lot about that magical R-word, because if you've ever read anything about RA and pregnancy, you'll have read some statistic about the possibility of going into remission (or at least seeing a big improvement in RA symptoms) while pregnant:
  • Around 50 to 75 percent of women with RA who get pregnant go into remission - everyday Health
  • Approximately 70 percent of women with RA experience an improvement in symptoms beginning in the second trimester and lasting through about the first six weeks after delivery - Arthritis Today
  • Many women, up to 75%, find that the pain and swelling associated with RA is much improved during pregnancy usually in the second trimester - National Rheumatoid Arthritis Society
So now that I'm well into my second trimester, I feel like I have been asking myself daily if this is really it - am I actually in remission? APL thinks I might be.  And, the more I think about it, I think he is probably right.

I mean, if you look at the posts on this blog you can see that I have had trouble with a lot of my joints over the past three and a half years: toes, ankles, knees, hips, shoulder, elbows, wrists, fingers, jaw....and you know what? None of those joints hurt right now. And I honestly haven't had much trouble with any of them since I got pregnant. (The the only pain I have been dealing with lately is the pain in my SI joint - my low back on the right side - which my rheumatologist says is more related to the pregnancy than my RA.) So if my RA made all of those joints hurt on a regular basis, and none of them are hurting now, maybe I actually am in remission?

So why don't I sound/feel more excited about it?

Here's why: I think I had unrealistic expectations about what pregnancy remission actually meant. I mean, APL and I literally used to joke about getting me pregnant just to avoid having to deal with the RA. I honestly thought that if I was lucky enough to be in the 50-75% that went into remission, it would be like a magical pathway back to my life before the RA diagnosis - where I would feel great and be able to do all the things I used to do, at least for a few short months.

I'm sure some of you have had the same dreams/expectations about pregnancy remission. If you have, I truly hate to burst your bubble about it. In fact, that's one of the reasons it has taken me so long to write this post - I really hate to take away anyone's hope for relief because sometimes that's all you have to keep you going when the flares get bad. But this blog has always been about honestly telling my RA story, and the reality of remission has been a big part of my RA story lately. And though it's true that this post might take away some of your hope, maybe it will also save you from disappointment.

Because I have to admit, if this is remission then I honestly feel a little disappointed by it. I mean, don't get me wrong, it's really great that the long list of joints that have given me trouble over the past few years are all behaving. I am truly grateful for that relief - and I'm really not trying to look a gift horse in the mouth or anything.

But still...

I think I gave the magical R-word way too much credit. And I think I also underestimated how difficult pregnancy itself can be. Because deep down I thought, once I got past the nausea of the first trimester, the magic Remission was going to kick in and I was going to feel truly great. But I really don't. Most of the time, I actually feel pretty crummy. I'm still dealing with huge amounts of fatigue (which is now probably from being pregnant rather than RA - but who really cares? I'm exhausted!), I've got hormone headaches and pain in my SI joint that I can't take any meds for, I'm being tested for pregnancy complications, and my body is still doing all sorts of crazy stuff - from pre-cancerous spots on my face to disappearing armpit lumps (for which I am, of course, grateful - but it was still an exhausting experience.)

My point is this: I am still struggling. Remission, if this is really it, has not been a magic pass to feeling fantastic. But, though it has been hard, I am actually still pretty happy. I know all this struggle is for a really good cause this time. And I realize now that pregnancy remission can't be a magical pass back to my life before RA, because there is no such thing. That life - my life before RA - is gone, and there's no sense clinging to it. Like the title of this blog, I have to look forward, not backwards. And honestly? Forward is looking pretty good right now.


Living It, Loving It said...

I often wonder about remission myself. Ironically, I posted about it earlier today. I am sure that I will ever really hit that point even with my RA tamed. (I am knocking wood because I, too, am afraid to admit that.) Remission is larger possibility in pregnancy but the hard part is wondering what will happen after you give birth. It is like what you said – probably just for a few months if it even happens. I hoped that for you it would be possible but RA remission rarely happens – with or without pregnancy – no matter the statistics. Truth be told, my symptoms subsided a bit during pregnancy. I actually felt better than I felt before pregnancy but I still felt like crap. Additionally, my symptoms came back in full force after my son was born. So, I can relate to what you are saying that despite the reduction in symptoms, you are still struggling. Your last line “That life - my life before RA - is gone, and there's no sense clinging to it” – really made sense to me. I said something similar in my own post in that life before is RA is exactly that and it is unrealistic for me to try to go back to that. And, I absolutely agree with you about going forward, not backwards. But motherhood teaches you what you are capable of and it is more than anything you ever thought possible.

Take care,

~Mariah~ said...

LANA: Wow. I just read your post about remission and it is pretty eerie how we are thinking about the exact same stuff! ~;o) I also wonder about it really being "remission" if you have to continue taking strong meds for the rest of your life. I feel like that's more "under control" not "gone away" - if that distinction makes any sense. I think you understand that I really don't mean it to sound despondent that my life before RA is gone now - I'm not sad about it. I think realizing it is a step I have to take - moving forward and trying to stop looking back. I think it's a good thing. ~;o)

And, like you, I do think I feel better than I did before I got pregnant - just not as good as I expected to, which is I think what was causing my less than exciting reaction. I've also been thinking a lot about something else you said in your comment - that your symptoms came back in full force after the birth. That seems to be the unanimous conclusion about giving birth with RA, and honestly it scares me. Honestly I'm more scared of the first few months after the baby is born than the birth itself. But I am sure you are right that motherhood will teach me how to do it. ~;o) Thanks so much for your thoughtful comment!!

Melissa said...

I'm starting Enbrel next week so the big "R" (remission) has been in the back of my head too. I want to think positively but I don't want to get too excited. Just in case.

Are you worried about what will happen after the six weeks or so after you have the baby? They say the 'remission' lasts during pregnancy and up to six weeks afterwards. So, after that, is it a flare from hell?

~Mariah~ said...

MELISSA: Good luck with the Enbrel! It worked wonders for me for several years and I'm looking forward to getting back to it after the baby comes.

I am certainly worried about what will happen after the baby comes - you are right that most sources are unanimous that about 6 weeks of relief is all I will get. But if I want to breastfeed longer than that, I'll have to figure out how to manage without going back on my drugs - so yeah, it sounds like it will pretty much be the (untreated) flare from hell. So I am super nervous about it but we will have to just see how it goes. And obviously I'll write about it as I can. ~;o)