Let me just start out this post with a little note that I bought this book am discussing it purely of my own choice, and these opinions are entirely personal.
So, I actually read this book quite a while ago and am only now getting around to writing about it. I'm guessing it's because I had such a struggle reading it. Honestly this book left me feeling bad about myself. I think it can be a wonderful resource to those newly diagnosed, or those that do not have severe RA. I found myself flinging this book onto the floor several times with my husband gently reminding me that I should not be reading something that makes me feel so bad.
The thing is this: the author stopped taking all meds prior to even trying to get pregnant, then remaining off of them while trying, and continuing to do so while pregnant. I do not have this luxury. I stopped taking meds for a weekend (and even then I was taking tylenol!) and was unable to move on monday. I can't imagine the past 10 months with no meds. The author was also able to take time from work to cope with the pain associated with taking nothing. A one-income household just does not cut it for us right now.
In a way, this book felt priveledged to me. I know that a lot of women cease taking medications while trying to get pregnant, but not all of us can. I also felt that there wasn't enough depth to the suggestions for coping. I wanted specifics of great ways of carrying your baby when dealing with RA in your arms, or easier clothes to put on your baby, that kind of thing. I wanted more meat.
I guess my issue is that I just couldn't relate to this book. Her experience is so vastly different than mine, and I wanted to read something that spoke to me. All in all, this book was not for me, but like I said, I think it could be beneficial to women who have low to moderate RA and are relatively newly diagnosed.
I hope this post wasn't too harsh. I don't want to come across as mean, just that it wasn't helpful to me. I have to continue taking meds while trying to conceive, and I don't need to feel anymore guilty about that then I already do. I completely respect Suzie Edward May and the choices that she made, and the fact that she was able to have children without also needing meds. I just wish that there were a book out there that related to my story, you know?
I really hope there is a book out there that is closer to your situation and you can get your hands on it. Or there are at least a few bloggers that can share their stories of success while on meds. with you I can't even imagine how you feel. Was diagnosed a month after baby came.
ReplyDeletePost was certainly not harsh. It was beautifully honest. Maybe if a book doesn't exist for you, we will see your name on the bookshelves as an author one day. : )
That sucks, I guess that's one of those tough things about our illness - it's completely different for everyone. But rheumforgod has a point, you should write your own book when you're on the other side ;)
ReplyDeleteWhat meds are you allowed to stay on?
Hmmm, you are both making me think pretty hard about writing a book :)
ReplyDeleteThanks for the reinforcement that my post was not harsh, rheumforgod. I just feel terrible saying something bad, but I wanted to be honest about my experience.
Squirrel, I'm still taking diclofenac (until I find out I am pregnant, then hopefully stop as there is a slightly increased risk of miscarriage) and humira. There have been no human studies on Humira, but animal studies have been fine and other tnf-blockers seem to be okay as well. There doesn't seem to be any evidence that it passes the placental barrier.
I know I'm taking a risk with staying on meds, but I have to balance everything out. My doc made a good point the other day saying that a woman with severe epilepsy would likely not be able to stop taking meds while pregnant (or trying to get pregnant). With my level of RA, my husband and I have decided to take that chance.
Whew, this was a long-winded response!
i stayed on enbrel and plaquenil. my doctor made a good point that having my body in a state of intense inflammation was equally bad for a baby. don't have ANY guilt about it! if you don't already do this, tracking your temperature every morning can help you figure out the best time to try...i used fertilityfriend.com when we were trying. good luck!
ReplyDeleteHey Clare! Thanks for sharing your experiences :) I haven't found too many women that stayed on meds while pregnant, or while trying. I used to temp and use a clearblue fertility monitor for a while, but have given up because I don't really need it. We're... ummm...regular type folks :)
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