Secret Post #5: Positive, Uplifting, Hopeful, and Useful Advice

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

 
 This Post Written June 25, 2011

TMI Warning: This post contains details about sex and trying to get pregnant that you may consider to be too much information. Don't say I didn't warn you!

For anyone who is trying to conceive, it is always in their best interest to get pregnant sooner rather than later. Sex is supposed to be fun, and getting pregnant sooner reduces the chances of "trying" becoming a horrible, stressful chore. 

But, since I have RA, there are many other reasons that sooner would be better than later. For one thing, the longer I am off my meds (i.e. living my life with RA that is not fully treated) the more pain and fatigue I am likely to experience. And, obviously, the more pain and fatigue I experience the more difficult it will become to even have sex in the first place. Also, the chance of permanent joint damage increases as the time between me and my last dose of methotrexate increases. And it's not like I will be able to get back on my RA meds anytime soon - even after I get pregnant it will be at least nine months before it is safe for me to start taking my meds again, and longer if I want to breastfeed my baby. So, yeah, sooner would be better.

This is obviously not a blog about how to get pregnant - this is a blog about living with RA. However, it seems to me that having RA creates really unique issues when trying to conceive. Unfortunately, these issues aren't really addressed by any of the literature out there (or at least not that I can find). There are plenty of depressing articles about how difficult your sex life is likely to be with RA, but these articles contain scant advice for making sex easier. There are a bunch of articles (and a great book) dealing with RA and pregnancy, but none of these seem to address the complicated issue of getting pregnant in the first place! And, as far as how easy it is to get pregnant when you have RA, I found this delightful new study called "Rheumatoid arthritis makes getting pregnant harder." None of this is very useful or hopeful!!

The only real advice that seems to be out there for women with RA who want to get pregnant is that they should stop taking meds that might cause birth defects before trying. But, at least to me, it just doesn't seem that simple.

While it's obvious that having RA makes pregnancy more complicated, I know that it does not make it impossible! Plenty of women out there with RA are also moms! It can totally be done!! So I really feel like someone ought to be handing out positive, uplifting, hopeful, and useful advice about how to make that dream come true - but I can't seem to find anyone who is.

I am not a doctor. I am not an expert. I'm just a girl with RA who would really, really, really like to be a mom with RA. And I know I'm not the only one out there! So I am going to track down whatever positive, uplifting, hopeful, and useful advice I can find about actually conceiving when you have RA and post on this blog. Because it's not impossible. And I think that should be made more obvious.

Secret Post #4: Now We Have to "Try"

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

This Post Written June 20, 2011

TMI Warning: This post contains details about sex and trying to get pregnant that you may consider to be too much information. Don't say I didn't warn you!

Our wedding turned out to be amazing, despite the rain, and I actually ended up feeling great! And we had a phenomenal time on our honeymoon - what an adventure! 

However, sadly our master plan to get pregnant without trying while we were on our honeymoon didn't end up working out. So now we have to "try" to get pregnant - and sooner would be better than later to reduce the amount of time that I have to be off my meds, which will also reduce the chances of joint damage in the future.

I have to admit that I'm a little nervous about "trying." Sex can be difficult enough when you have RA, and the thought of doing it a lot is a bit overwhelming (ok, make that a lot overwhelming), especially because I am not sure how I will be feeling. Also, I'm honestly still nervous that I can't trust my body to "do the right thing" and get pregnant at all, especially since it has done so many other things out of my control over the past three years.

But we're keeping our hopes up.

Secret Post #3: Second Thoughts

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

This Post Written May 10, 2011

I'm not going to lie - with the way I've been feeling lately, I have to admit to having a few second thoughts about my decision to go off my meds before the wedding. I guess it's normal to have second thoughts about any big decision with pros and cons, but I can't seem to stop myself from thinking about how strong I was feeling before I went off my meds. And now I am feeling considerably weaker, and starting to get pretty nervous about how I will feel at my wedding. Every once in a while the thought crosses my mind: have I ruined my enjoyment of my own wedding?

But, whenever I express these concerns to APL, he reminds me that it was because I was strong, because I was doing well, that we were able to make this difficult decision in the first place. And he reminds me that he will be there to love and support me no matter how I am feeling. So, though I have to admit to having a few second thoughts, overall I'm still happy with my decision because it is bringing us one step closer to a family of our own. 

Surgical Consult

This morning I started out my day by barfing up my breakfast - delightful! (Come on, morning sickness! I thought we were just about done with all of this!!) Then I got in the car and drove to the hospital for the surgical consult on my armpit lump.

I actually thought the lump had gotten smaller, because I can't really see it in the mirror like when I first discovered it, but the surgeon said it was about the same size as when I had the ultrasound done. In any event, it hasn't gotten any bigger - and that's good news. The surgeon said it also felt like a neural tumor to her, which is benign, but of course the only way to be sure is to take it out and look at it under a microscope. 

Unfortunately, it turns out we can't (well, shouldn't) do the surgery until I'm farther into my second trimester. I mean, we could do surgery right now if it were absolutely necessary, but the risk to the baby is a lot higher while his/her organs are still forming. So we're going to wait six weeks and then I'm going to go back and be re-evaluated. If it's still the same, I'll probably have surgery that same week, at which point they feel it will be minimal risk to the baby. 

So let the waiting game begin! Wait to stop barfing up my breakfast. Wait to see what the tumor will do. Wait for possible surgery. Wait to see if my RA will actually go into remission. Wait to see if I'll regain any energy. Wait for the baby....

Secret Post #2: This Time It Was My Choice

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

This Post Written April 29, 2011

April has been a total whirlwind of good and bad, happy and sad. In the post I actually published today, I was totally honest when I explained how I have been feeling lately - I'm achy! Extremely achy, actually. And I've been dealing with quite a bit more fatigue than I was a few months ago. However, I was also honest in my post today when I said, despite the extra pain and fatigue, I'm really doing ok with it. I'm happy and excited for my wedding and I'm doing a really good job of making sure I rest enough to (at least hopefully!) prevent me from crashing any harder.

But I wasn't completely honest today about why I'm feeling extra achy and tired. Yes, I traveled a lot last week, and that has a lot to do with it. But I am also fairly certain that part of the extra trouble is from my incompletely treated RA. Which, actually, is another reason that I am ok with the extra pain and fatigue I've been experiencing - I know I'm going through it so that APL and I can achieve our dream of starting a family. And if that's not for a good cause, then I don't know what is!

I can feel a pretty major difference in my body since I started coming off my meds a few months ago.
Honestly, I was most surprised by the difference I felt when I stopped taking methotrexate. I stopped that one first - because it needs to be out of your system the longest before it is safe to get pregnant. Before stopping, I knew methotrexate was helping to prevent long-term damage of my joints, but I really didn't think that it was doing anything to help me feel better on a day-to-day basis. And I was wrong.

I remember when I first got diagnosed with RA, my rheumatologist had me only on methotrexate for about a month, and I remember feeling really frustrated that it wasn't helping me feel better at all. In fact, as we moved along and tried other drugs that did help me on a day-to-day basis (prednisone, Remicade, Enbrel,) I became increasingly annoyed about having to take the methotrexate at all, because I only noticed bad side effects from it - hair loss, tooth decay, potential liver damage requiring lab tests every couple of months, extra fatigue for a day or two after taking the dose, etc.

So when I came off the methotrexate I was actually quite surprised when I did notice a difference in my body. Almost immediately I felt just a tiny bit more achy for no apparent reason - like I had worked out a little too hard or not rested quite enough, but I hadn't actually done those things. Apparently the methotrexate had been doing something to help me on a day-to-day basis. Although I obviously haven't loved dealing with the extra pain and fatigue lately, I actually do appreciate knowing that the methotrexate really was helping me. I think I'll feel better about the drug when I finally start taking it again.

Before we decided we wanted to try to start a family after the wedding, I was depending on a bunch of meds to control my RA. Now every day that goes by I'm a little further away from the combined benefits those meds were giving me. Overall I would say, despite a little extra pain and fatigue, things are going pretty well with the process of stopping my meds (so far! knock on wood!).

The weirdest part for me has been a slight feeling of instability. (I'm not quite sure how to explain this, so please bear with me.) When I first got diagnosed with RA, aside from a lot of horrible pain and extreme fatigue, one of the worst things I had to deal with was instability - I felt like I had zero idea what my body was going to do next. I didn't know what I would have to deal with tomorrow, and dealing with that every day made me lose a lot of trust in my body.

Since that time it has been a massive up and down battle to try to re-gain some stability in my life and my body. For example, when I first went on the Remicade and it felt like it was working, I gained a little stability back, but then I lost it again when it turned out the Remicade wasn't working. Thankfully, I have steadily been re-gaining my stability since I started with Enbrel - which, believe it or not, was almost exactly two years ago! Getting to a point where my RA treatment was working and felt stable was really important for me, because - obviously in addition to the fact that I was physically feeling a lot better - it helped me to re-gain some trust in my body. While I never got to a point where I felt like I could control my body, at least I had reached a point where I felt like I knew what to expect, which was huge relief.

Since beginning the process of trying to get ready for pregnancy, I have definately lost some of the stability that I worked so hard to gain over the past few years. These days, I don't quite know what to expect. I'm not really sure how my body will continue to behave now that I'm off my meds. That's what I mean by a feeling of instability - I feel at least a little nervous and shaky all the time now, like anything could happen tomorrow.

However, it is definately a different type of instability than I felt when I first got diagnosed with RA. That instability came from a place of shock and fear and despair and denial over the loss of control of my own body. The instability I feel today is totally different because it is my choice. I was able to consider all the pros and cons before accepting this instability into my life and, with APL's help, I now have the tools to deal with it. This instability is an investment in the future of my family.

And let me tell you - that makes all the difference.

Secret Post #1: I've Already Stopped My Meds

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

This Post Written March 24, 2011

I don't usually draft my blog posts - I just write whatever I'm thinking about and post it immediately. But this topic is different.

Usually it helps me to be painfully, unflinchingly honest about my feelings and experiences with RA. I tend to sort out my own feelings while I write, and posting right away often sparks dialogue with people who are going through the same thing, which I find useful.  But, unlike most topics, this time I see a downside to telling all the world what I think and feel right now. 

However, after relying on this blog so heavily for the past 2+ years to sort out my feelings, it feels really weird to spend so much time thinking about something I'm not writing about, especially when it is a topic that is so centrally related to my life with RA. This blog has always, always been about providing an honest record of my experiences with RA - and I feel like I'm holding out on people who could learn from my experiences with this topic. Or missing a chance to get connected with people who could help me.

But I also know that I need to do what is best for myself, and right now I don't think it will help me to post about this topic. So I am writing a secret post - as a record of how I feel today - that hopefully I will be able to post on the blog someday. Though I don't know when.

The truth is this: when I wrote the post entitled Arthritis, pregnancy and the path to parenthood the other day, I had already started the journey of coming off my arthritis meds to prepare myself for pregnancy. Which is why, in particular, I found Suzie May's book to be so incredibly helpful - full of useful information, perspective, and hope as I embarked on a difficult process. 

APL and I have been together for 8+ years, so we've actually been talking about wanting to have a family together for a long time - probably even before the RA diagnosis. RA just put in an extra layer of complication to a goal we already had. Over the course of many hours (days, weeks, months) of discussion, we figured out that my biggest worry related to pregnancy and RA was not actually the pain of having to come off meds (which, of course, probably won't be pleasant) but rather the anxiety and pressure of having to "try" to get pregnant with a body that regularly does stuff that I have no control over whatsoever.

In a perfect world, we would have just stopped using birth control after the wedding and waited to see what would happen - no stress, no pressure - but obviously with my RA that is simply not an option for us anymore. Here in the real world, we're going to have to plan for pregnancy months in advance, and then we are going to have to "try" to get pregnant as quickly as possible to reduce the amount of time I have to go without the meds that keep my joints from becoming damaged and disfigured. This is never the way I pictured going about starting a family, but it's now my reality. 

I also have to admit that from almost the very moment I got diagnosed with RA, my deepest, darkest, middle-of-the-night fear has always been that I can't trust my body anymore and that I won't be able to get pregnant.

So the more APL and I thought and talked about it, the more clear it became that the pressure of "trying," plus my anxiety over having a body I feel like I can't trust, was going to make for a really stressful situation in which to try to conceive. And then, if we couldn't conceive right away, there would be the added stress and pressure of failed attempts. And then the longer it took us to conceive, the worse state I would be in from having been of my RA meds for so long, and the worse shape I would be in for "trying" (if you know what I mean). Any way we looked at it, it just felt like a horrible feedback cycle of increasing stress and anxiety, with success seeming unlikely.

So, after discussing all of the pros and cons we could possibly think of, we decided that we would get our best shot at a relatively "stress free" period of "trying" if we ride the wave of adrenaline and good, happy, positive feelings from the wedding and honeymoon. Since the wedding is only two months away, this means that I have already had to start the process of coming off my meds (particularly methotrexate, which stays in your system for a long time after you stop taking it and can cause really scary birth defects).

We both know that it's pretty risky to try coming off my meds before the wedding - because who knows how it will end up making me feel (though so far, so good, aside from quite a bit more hand pain than usual). But we have decided that it is the best strategy we have for dealing with my biggest RA/pregnancy fear - our best chance for a "normal" stress-free shot at starting our family. Probably not the best strategy for everyone trying to deal with RA and start a family at the same time, but it's the best one for us.

Trying to reduce the amount of stress and anxiety I feel about this process is, of course, the reason that I am not going to publish this post when I finish writing it. Announcing our intentions at this point would only put more stress on me and increase the anxiety I already feel about how my body will ultimately perform. And I don't want to feel any extra pressure or judgment on a decision that, ultimately, belongs to no one but me and APL.

I do fully intend to share these feelings on my blog - because I'm sure they would be useful to someone contemplating pregnancy with RA. But I can't say when I will do so. Not yet. 

I'll just have to wait until I feel ready to be honest about this one. Only time will tell.

Our Thanksgiving

We have so very much to be thankful for this year – including a surprise for you:

That’s right – I’m just about three months pregnant! We’re due in June and we couldn’t be more excited!

Obviously my RA has already made the path to parenthood a complicated one for us. Since most RA medications are not safe for use during pregnancy, and some cause serious birth defects and take many months to get out of your system, it was just after the Jingle Bell Walk last year that I started weaning off the medications that were controlling my RA. For almost a year now I have been dealing with various levels of untreated RA – a sacrifice I have been more than willing to make for the health of our baby, but one that has also been both physically and emotionally difficult for me.

I will continue to deal with untreated RA for the duration of my pregnancy. While many women are lucky enough to go into remission while they are pregnant, I’m not sure yet whether this will be the case for me as I’ve been dealing with extreme levels of fatigue lately (sounds like remission, if it happens, usually starts near the end of the fourth month - and I'm not quite there yet.) Either way, the RA will almost certainly be back in full force a few weeks after birth. And the length of time that I will be able to breastfeed will be almost entirely dependent on how much my RA flares after giving birth and how long I can withstand the pain before I need to restart my medications.

Unfortunately, when it comes to getting information about RA and pregnancy there seems to be very little positive, supportive, helpful information out there - at least in my experience. For example, if you Google “RA and pregnancy” here is some the discouraging stuff you will find within the first three minutes of looking:

Discouraging Headlines:

• Rheumatoid arthritis tied to pregnancy complications
• Rheumatoid Arthritis Study: High Disease Activity During Pregnancy Associated with Lower Birth Weight
• Women With Lupus And Rheumatoid Arthritis Have Greater Pregnancy Complications

Discouraging Facts:

• Deciding whether to have a baby is even more complicated if you have RA, because you must deal daily with physical pain and limitation.
• Most RA drugs aren't safe during pregnancy - some stay in your system for a long time after you stop taking them, some can affect an unborn child from the very earliest days of pregnancy.
• It's been proven that women with RA take longer to conceive - which could be because of low sex drive, inconsistent ovulation, fatigue, and pain.
• Pregnancy does not provide relief from RA to all women, and some women show no improvement or suffer flares while expecting.
• Even if you are lucky enough that your RA goes into remission during pregnancy, the improved symptoms do not continue after the pregnancy is over. RA often comes roaring back a week or two after childbirth.

Here's another discouraging fact that no one really seems to talk about: trying to conceive while simultaneously dealing with untreated RA is no easy task. And, though I am only thee months in, I can tell you with authority that pregnancy is hard, and RA makes it harder.

But I know that I am not alone. There are 1.3 million people in the United States with RA - and 70% of them are women. There are 300,000 children growing up with juvenile arthritis – and most of them are girls. Arthritis affects our lives and our futures – and our children’s futures.

Although there are a lot of great blogs about living with RA - many of them written by moms - I have found very few resources that discuss the complicated matter of getting pregnant and being pregnant while dealing with RA. Here are a few:

• The book "Arthritis, pregnancy, and the path to parenthood" is a really great resource - written by an Australian woman who experienced RA and pregnancy herself - twice. She also interviewed a lot of women who provide great insight.
• Curly Bones is a blog written by Christina, who is bravely sharing her experiences with IVF after growing up with juvenile arthritis.
• I also discovered a post on Stephanie's Mommy Brain that talks about Stephanie's personal experience with Enbrel and each of her four pregnancies. There isn't too much other information on her blog about RA, but the comments on this one post are enough to make you feel less alone if you have arthritis and are considering pregnancy. Although the post was written in 2010, Stephanie told me that she still gets 5 to 10 visits a week from people searching for information on RA and pregnancy.

Since my first post in 2008, this blog has always been a very honest record of my experiences with RA. It has always been my hope that sharing my story will help other people in similar situations - or at least let them know that they are not alone. My pregnancy journey with RA is no different.

Although I had personal reasons for not sharing the story as it happened (which I will explain), I have actually written 22 secret blog posts since last March. These posts cover my pregnancy journey up to this point: from weaning off my RA meds, to trying to conceive, to searching for advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. I will post the first of these tomorrow with the hope that sharing my pregnancy journey help others know that they are not alone.

Thank You, Deodorant.

Having RA (and the compromised immune system that goes with it) has made me extra-sensitive to abnormalities in my body. If I find an abnormality, the past 3 years of my life has me well trained to get it checked out by a professional asap.

The other day I was standing in front of the mirror, putting on deodorant, when I discovered a little lump in my right armpit. My primary care doctor took a look at it yesterday. This morning the radiologist did an ultrasound of the lump. The radiologist says that it is most likely that the lump is a benign neural tumor - a tumor on the nerve. He said he has seen several benign neural tumors in the same location over the past couple of years.

Is it possible that the lump could be something more scary? Unfortunately, it is. But the radiologist said he didn't think so, because the mass wasn't very dense. Also, apparently cancerous lumps tend to have a black shadow on the ultrasound and this lump had a white one. The other good news is that the lump is far enough down my armpit that he was able to confirm that it is not associated with my breast tissue - and my primary care doctor did a breast exam yesterday and found nothing to be worried about there.

The only way to be certain what the lump is made out of is to get a sample of it. However, since the lump is so small (less than 2cm) and since it isn't associated with any muscle tissue (which would make removal more difficult), the radiologist recommends just removing the whole thing while we're at it (which is what they would want to do if it is something scary anyways.)

The radiologist is going to talk to my primary care doctor and then they will put me in touch with a surgeon. I'm not thrilled about the thought of surgery, but I am grateful that the RA has made me sensitive enough to my health that I went and got it checked out. I am also grateful for deodorant - because if I hadn't seen the lump in the mirror I probably never would have found it.

Massage Envy Raises Nearly Half A Million Dollars for the Arthritis Foundation!

Remember the Healing Hands for Arthritis fundraiser at Massage Envys across the country on World Arthritis Day? It turns out that event brought in nearly $500,000 - about half a million dollars! - for the Arthritis Foundation.

Thank you so much to Massage Envy for helping us raise money - and awareness! - to fight arthritis. I'm so glad I got to be a part of the event.

Renoir

Did you know that Renoir apparently had the first well-documented case of RA in history? Apparently, though he suffered from severe joint deformation in his hands in his later years, he continued to paint by tying his paintbrush to his hand. Now that's determination for you!!

I learned about Renoir from an interesting article sent to me by my friend JG: 11 Famous People With Rheumatoid Arthritis. Though I have to admit that I have not heard of all of these people  (and they are saying Lucille Ball may not have actually had RA) it is interesting to see the various accomplishments of people who have dealt with RA: artists, movie stars, Oscar winners, singers, heart surgeons...even a Nobel Peace Prize winner! They clearly didn't let their RA stop them - and neither should you!

UPDATE: My blog also publishes automatically to my page on the Arthritis Foundation RA Community. One of my readers there passed along this link, which is a film of Renior painting in his later years. In the film you can see how RA has severely disfigured his hands, but he still continued to paint up until the day he died. It is a little bit disturbing to see his disfigured hands, but you have to remember that in the late 1800s there were no meds at all to manage RA. And it is amazing to see him persevere despite the RA.

(Heard of any other good RA Factoids? Send them my way and I will post them!!)