Thursday, February 2, 2012

The Post-Birth RA Flare

In my opinion, there really isn't a lot of useful information out there about dealing with RA & pregnancy at the same time (which is one of the reasons I decided to share my story on this blog). Of the material that does exist, most of it is frustrating and scary rather than positive and uplifting. And you really have to dig through the depressing stuff if you want to find advice about how to conceive/improve your sex life while dealing with RA. 

When you have RA and have actually managed to get pregnant, you start looking for a different type of information - help and advice for during and after pregnancy. Of the information that does exist on this topic, there are two points that the vast majority of articles seem to agree on:
(1) It is pretty likely that you will experience some kind of remission during your pregnancy. And I've already written a post about my thoughts on the big R-word.
It's the second point all these articles seem to make that has got me thinking (and worrying) lately:
(2) Shortly after giving birth, your RA is likely to flare. Badly. And, considering you will be recovering from giving birth and you will have a brand new baby to take care of, the unanimous conclusion is that it will really suck.
Six months after the birth of her first child, Chaunté Smith couldn't get out of bed. She was in "excruciating pain." 
Awesome. That sounds like a lot of fun. The article then continues with these gems:
"I could barely walk. I couldn't pick up my newborn." 

"The pain is so excruciating you will know. You can't even flip a light switch."

She became very sick after her delivery, and when she had completed six weeks of breast-feeding, she resumed her regimen of medication.
(Also, here's my personal favorite quote from the article, which is actually totally unrelated to the point I am trying to make in this post. But it makes me so very mad that I just couldn't pass up commenting on it: Women can be affected by RA as early as in their 30s. Hahahahahaha. What a funny joke!!! Good thing I just turned 29 and I've already been dealing with RA for three and a half years!!!! Way to spread the ignorance that arthritis doesn't affect young people, Huffington Post. Grrr....Ok. Back to my point.)

To be honest, I'm not sure exactly how I feel about having this information about the extreme likelihood of having a nasty post-birth RA flare. I mean, I guess I'm glad to have the warning so that I can try to do something (anything!) to prepare for the inevitable. But, on the other hand, this article and others like it tend to make this flare sound extremely painful and difficult to deal with, and that's really scary to think about. And anxiety + pregnancy = really not a good thing.

To be totally fair, in this article Chaunté Smith hadn't been diagnosed with RA prior to getting pregnant for the first time - she had been perfectly healthy - so the RA symptoms after the birth were a total surprise to her. And I can totally see how a brand new baby could make an RA diagnosis extremely difficult and scary to deal with. 

But I also think it is seriously scary to know that the flare is coming and that there is really nothing I can do to stop it. One thing all sources seem to agree is that the magic R-word will eventually wear off and the RA symptoms will flare - and usually much faster than in Chaunté Smith's case. She got six months, but most articles estimate a matter of weeks. And if I want to breastfeed my baby (which I do) I have to be ready to deal with whatever RA throws at me with almost no help from medicine. And I know that really won't be easy. 

So when people ask me if I'm scared of giving birth I have to tell them that I'm honestly more scared about what will happen after that. I am really trying not to worry about the inevitable too much, but I have to admit that I have been thinking about it a lot lately.

We figure the very best thing we can do is hope for the best, but prepare for the worst. Adjusting to life with a brand new baby is obviously difficult enough all by itself, and since we will likely be dealing with the added complications of a nasty RA flare, APL and I have been working hard on making things as easy as possible for ourselves after we bring baby home - which will give us the greatest chances of being able to breastfeed for a while.

Thankfully both my mom and APL's mom have agreed to take shifts staying with us for a few weeks after the baby comes, and having some trusted help at home (especially from experienced ladies who know what the heck to do with a newborn!) will be a total lifesaver. We've also registered at MealBaby, which is a really cool site that lets your friends sign up to help you out by dropping off meals after baby arrives. And, of course, we're reinforcing our arsenal of heat/cool pads, wraps, and braces for my joints.

In the meantime, APL and I have been furiously researching baby gear to figure out which items might help make things as easy as possible for me when I'm achy and short on energy. We're planning to get a co-sleeper, which is like a bassinet that attaches to the parent's bed, so that baby can literally be within arms reach for feedings during the first few months while I rest or sleep in bed, without me having to even get up. We've registered for what is supposed to be a really great nursing pillow, with the hilarious name My Brest Friend, which will help me support the baby during feedings without straining all of my joints. And, I kid you not, last weekend we spent literally three hours in Babies R' Us folding and unfolding strollers and buckling and unbuckling clasps so that we can find a stroller/car seat combo that will be both lightweight and easy to use (right now we're looking at the Combi Cosmo + Shuttle 33 combo).

So we're doing everything we can think of to prepare for the inevitable post-birth RA flare - and I wanted to share our ideas in case you find them useful! And we are totally open to additional suggestions if you've got them!


Stephanie Kay said...

Sounds like that article was written by someone who didn't know what they were talking about! I was diagnosed at 25 but my symptoms started at 22.

Thinking it over, I don't think I flared in the sense that my RA returned all of a sudden super bad. Instead it was a gradual progression. At about 6 weeks postpartum I began swelling and feeling the old familiar ache return to my joints. It just gradually worsened until I finally went back on Enbrel. Officially you aren't supposed to nurse and take Enbrel but no one I've spoken with has had any problems.

I looked at it this way. The reason I can't take Enbrel by mouth is because my digestive system kills the proteins before my body can absorb and use them. If any Enbrel DOES get into breastmilk, my baby's system would kill it before her body absorbed it so it would just pass through her with no impact.

As for strollers. I LOVED my snap N go. It's just a light weight frame that the infant carrier snaps into. It works with all the major brands of carriers and only weighed about 5 pounds. It was also really easy to collapse and put in a trunk. After that I recommend a Chicco umbrella stroller. They don't have all the bells and whistles that the stroller systems have but they are SO much easier to push, collapse and get in and out of a vehicle.

~Mariah~ said...

STEPHANIE: I do appreciate your perspective on Enbrel and I'm glad you put it out there for others who are considering it. Ultimately I will have to see how bad it is, how much I want to nurse, and then make a decision with the input of my husband and my doctors.

Thanks for the stroller recommendations too! We did actually look at the Snap N Go - but the Chicco one is new to me. However, it looks like the Combi Cosmo we are looking at might serve both purposes with only one stroller. It only weighs 13lbs (which is only 2 lbs more than your Chicco) and it is super easy to fold up. But I am super glad to have useful options! Thanks! ~;o)

Christina said...

You might want to check out the City Mini Stroller as well...

They're not cheap, but they are insanely easy to use. I played with them when we were pregnant and loved it. It has attachments for a carrier too.

We liked the idea of the City Select too, but I never had the chance to play with one and think it would be more difficult to deal with, but great if you know you want more kids...

Just a thought. :)

~Mariah~ said...

CHISTINA: Thanks! I will totally check those out. My sister was just asking me yesterday if we'll have as stroller she'll be able to jog with...not that I'll be doing any jogging!! ~;o)

Christina said...

Yeah, jogging has never been in my vocabulary. lol They roll really around nicely though (the wheels don't turn in opposite directions and get stuck) and are sturdy enough to jog with if you ever do get the urge. hee hee