Tuesday, November 29, 2011

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.

2 comments:

Mom2LittleMiss said...

I know exactly what you are saying about the feeling of instability. I guess I could probably go on more meds to get that "under control," but then Little Miss came along.

See, the thing about the instability.... Once you have another life to worry about - a little person who depends on you 100% - that instability becomes less of a factor. You pick up and do what you have to do and you don't think about it.

I'm not saying that it's gone or that those unplanned aches don't all come back the minute after Little Miss is tucked snug in her bed.... But while she's with me? Well, Little Miss IS the best medicine :-)

~Mariah~ said...

MOM2LITTLEMISS: It really was an extremely weird feeling to "let go" of the stability I had spent the previous 2 years fighting so hard to achieve. But you're right - a little person, even an unborn one or the promise of one, can make it a lot easier to deal with. It's not just about me anymore. ~;o)