Thursday, July 1, 2010

“Le Talk”

There are always blog posts to be written. Things I want to write about, but can’t, don’t know how to, or simply don’t have time. I’ve wanted to write this post for a while and I’ve been waiting for this appointment – yesterday – with my rheum for a long time. I was excited to tell my rheum that I actually think I am having more good days than bad, and that while this is great, I suspect I may have some symptoms of Central Nervous System (CNS) Lupus, and that it’s time he and I had “the talk”.

“The talk,” you ask? What talk? The I want to have a baby someday in the not so distant future so please tell me what that will look like talk. Oh, that talk. Yeah…

I told myself I would not have this conversation until I was good and ready, until there would be someone else in the room with me who wanted to know the answer. To this point, neither my rheum nor I have given a whole lot of thought to my fertility. The greater concern has been getting my health to the most stable possible place.

The night before the appointment, I found myself getting oddly emotional. When I first got sick, I thought that my life was over. I really felt like I would never find someone to love me. So to be at the point where I’ve met someone and we’re making future plans, I never thought I’d be having this conversation with my rheum. And for that reason, it wasn’t really something I thought too much about before. Why? Because it wasn’t until illness, and the possibility of I can’t, that I really felt like saying I can and I want to. And it wasn’t until several months ago that I even had somebody in my life that I would consider the possibility with. But I really do believe that this current relationship is a forever thing.

I was given a print-out a few months ago that went through any possible interactions between my medications. Included with this was an explanation of whether the drugs can be used during pregnancy. It comes as no surprise that all of the drugs were either “contraindicated” with pregnancy or using “extreme caution” was suggested.

My main concern at this point is: will I be able to live without medication?

Our conversation wasn’t very long, and it was a bit awkward, but my rheum seems to have a fairly concrete plan for me, although he did not want to entertain what ifs. He said that many women with rheumatoid arthritis feel better during pregnancy. With lupus, he said, it’s a mixed bag. Some women have less disease activity, others get worse.

I was hoping there would be some trial period, like I could try going off meds now to see how I do, rather than waiting until it’s a necessity. But he didn’t seem to think that was such a good idea. So, I will have to get off of the methotrexate for six months and the plaquenil for three, before I can consider getting pregnant. And then prednisone will be the drug of choice. But I guess if I’m going to get fat and have food cravings anyway, bring on the prednisone.

And I’ll get a new member of my medical team – a high-risk obstetrician who will manage that side of things.

While I see now from other people, that even with illness, and however high risk, children are a possibility, it scares me. A lot. Will I be able to handle the emotional upheaval of trying and failing, and maybe ultimately, failing?

I can be very headstrong. And the more people tell me I can’t, the harder I try to prove them wrong. But in this case, that could be deadly. Will I be able to stop myself? Will I be able to hold in check my frustration, when my friends and their husbands have the joy of “trying” whenever they want, and I will have to calculate everything to the very last second?

I had always envisioned that when I really started to contemplate having children, it would be such an exciting conversation, not one filled completely with trepidation, fear, and anguish. And as chronic illness is so good at doing, I feel like time is compressed, like I have much less time to try and to succeed before the window of opportunity closes.

And there are also other reservations, some illness related, some not. Will I be a good mother? What if I’m in too much pain to hold my own child? How will I be able to take care of a child, when at times, I can’t take care of myself? With so much about lupus being unknown, do I want to bring a child into this world who may have the same fate as me? 5% of patients that have lupus will have babies with lupus. Will my future child (or children) be in that 5%? Because as many of you know, when given the choice, my body prefers to go the 2% route rather than the 98% route.

And the reality is that pregnancy has the potential to throw my body into a total tailspin. G-d knows lesser things have done worse. And I have to wonder. If my body mistakes things that are meant to be there as foreign invaders, what is it going to do with a baby? I know others have gone through this before me, but right now, it feels like I might as well be the very first person in the world with lupus to want to have a baby.

Most women, I think, feel like they can trust their bodies, until their body gives them a reason not to. I cannot trust mine. I cannot trust mine to support myself in the way that I need it to. So how do I trust such a body to support another living thing? You know, many women train for marathons. For me, I feel like I will have to train for having a baby. I’ll have to get my body in top shape, peak performance.

The idea of becoming a mother is almost seductive. The remission idea is incredibly interesting, and a bit seductive, too.

Here is an interesting article about the pathways that impact autoimmune diseases going into remission during pregnancy that my boyfriend brought to my attention.

But we can’t predict the future. So I guess for now, all I can do is try and attempt to get off the meds, try to live fully without them if I can, and rest in knowing that despite all of the unknowns, I know that I am with the person I want to have children with. And if it’s meant to be, I have to trust that the rest will fall into place.

So I guess this is only the beginning of this journey. It’s not like I’ll be having a baby tomorrow, but just as my readers have shared in everything else, I hope you’ll all stick around for this, too!


  1. Hey Leslie,

    Great post! As you've probably read from my posts over the past few years and now that I am pregnant, I can *totally* relate. All these years I've been writing how universal many of these fears and concerns are, and your post really resonates--our situations, like so many, are totally different, but the overarching challenges remain the same:

    Can we care for a child when there are times it's hard to care for ourselves?

    Can we safely carry a baby to term and give him/her the best start possible and still be healthy (relatively) ourselves?

    Can we be the kind of parents we want to be? Etc, etc.

    (The answer many of my readers gave me: It takes a village. But more on that some other time.)

    You mentioned the word fertility and I confess I don't know enough about lupus to know if it actually causes infertility or if the meds might, but if you are worried about the possibility of infertility, my suggestion is to have an early consult with an RE (reproductive endocrinologist). Since my condition nearly guarantees infertility, we did that very early on just to feel out the landscape, ask questions, etc, and it was really helpful.Infertility is incredibly challenging, but the more you know and the earlier you start thinking about it, the better.

    But infertility was never the toughest part for us. The harder part was deciding that if we could ever get pregnant (and after 4 years of failure, that was a bleak prospect), *should* we, and that seems to be the bigger concern you have--rightfully so. What we did that was an enormous help was have an early consult (and then a second, third, and fourth opinion) with a high-risk OB at the very beginning. These people are amazing-they know the risks of medications, the implications of diseases, the risks of prematurity at various stages, etc better than anyone else since it's their entire job. We asked tons and tons of questions, got a (scary) but realistic look at our unique challenges should we become pregnant, and felt like we had all the information we needed to make the most fair, prudent decision for everyone. All of this takes time, especially for additional consults, so it's good you are thinking through these things early.

    It is a scary, isolating place, I know. Keep having these types of conversations, collect information, and in the end, hope and trust in your decision, whatever it may be.

    27 weeks into a very high-risk pregnancy I can say it is intense, but every challenge is worth it.

    Good luck with all of this, and feel free to ask any questions.

  2. Hmmm..just left a long comment but it said it was too long to go through but then said it would be visible after approval...guess I'll check back soon and re-post if it didn't come through. Sorry!

  3. My mom has RA and Lupus so I do know about those conditions. She didn't have it while I was growing up though...

    Difficult questions to answer, aren't they?

  4. I know exactly what you're saying! I don't have Lupus, but get similar responses wanting to have a baby with Lyme and CFS. Luckily there are some antibiotics for Lyme treatment that are okay during pregnancy. It's a toss up whether or not I'll feel better or worse. I look forward to reading your blog and seeing how things go for you! Good luck :)

  5. I always worry about that and RA. My boyfriend wants me to go on meds, but I'm worried about the effects on my body and the fertility aspect of things. It's nice to have a place to point him to in order to show him how I feel.

    I hope you're feeling well!

    Also, I just nominated you for the One Lovely Blog award:

  6. I've had many of these same types of thoughts over the past few years, more so now that DH and I are married. We definitely want kids, but the idea of going off my meds and the unknown of how I'll react to pregnancy truly scares me. (For pregnant migraineurs, it's about equally divided between those who get better, those who get worse, and those who stay the same).

    As for the "should" questions, I have plenty of those, too. While my health certainly has improved over the last year, I still have a long way to go. My kids have about a 50% chance of inheriting migraine disease, but I also have a very strong family history (all of the women on my mom's side have it).

    Ultimately, I think the best thing any of us can do is ask a lot of questions and make the decision that feels best. Laurie has some great insight, as I'm sure you've seen, and I'm hoping as the online chronic illness community continues to grow, more of us will be able to connect and share our experiences.

    I'm so happy for you that you're to the point where you can start seriously thinking about this and asking these questions. <3


  7. we always know the major symptoms, as no one is free of suffering, remember that these cause chronic pain if not treated properly.