I hate those calls.

Yesterday morning I had drunk a cup of coffee, spent some sweet time talking to God, and played with my kiddos. As they were playing quietly, well, not really independently, I sat down at my computer to write an encouraging note to a friend.

Before I could type anything, the phone rang.

I hate that feeling when caller ID says it's the doctor's office, but there's no good reason for them to be calling.

It's my liver. It's not doing well right now. Probably related to medication.

We're not changing anything right now, but we'll repeat tests in a week and a half. If the numbers are still in the toilet, we'll stop the RA drug I take every day. Then we'll repeat the tests again a week or two before my next infusion (which will be about four or five weeks after stopping the first drug), and if the numbers aren't better, then no IV for me. And then I'm not sure what our plan will be.

The nurse asked me a bunch of questions, and I could tell that she and Dr. T were hoping that I had gotten drunk sometime in the week prior to the test, which might have explained my numbers in part. That made me chuckle a little. (The last time I had a drink was March 28, 2004.) Um, no. No alcohol here.

So please pray for my liver to start functioning normally again. 'Cause, you know, I'm kind of attached to it.

No, thanks

With rheumatoid [arthritis], you just don’t have good options.” Those words from my doctor on Tuesday sum things up pretty well.

Tomorrow I’ll have x-rays. Last time we checked for bone erosion and joint damage with an MRI. This time that’s not necessary because x-rays, which show less detail, should be able to show my damage. In other words, it’s bad enough that we’ll probably stick with x-rays from now on.

However, even if those x-rays show ugly realities, we’ve already ruled out one treatment path. You see, there’s this drug called methotrexate that we were planning on starting now-ish. Yep, were. Past tense.

Is methotrexate medically advisable, given that Remicade alone isn’t cutting it for me and given that odds are good that my body will begin creating antibodies against Remicade if we don’t add the drug? Yes. If we had no reservations about it, would my doctor have started me on methotrexate this week? Yes.

Am I taking it? No.

Here’s the thing about methotrexate. It’s used for other things. Yucky things like chemo. Unpleasant things like terminating tubal pregnancies. If you take methotrexate, you have to take lots o’ preventative measures to prevent little ones. Because, you know, a drug used for chemo and for abortions isn’t very compatible with pregnancy. Imagine that. If you’re taking it and want to get pregnant, you have to stop it for several months before trying to conceive.

And here’s a kink for us: we don’t have much trouble getting pregnant. We have sweet friends who have struggled with the opposite, so we definitely consider our fertility to be a blessing. But in a situation like this, it makes life a bit more complicated.

We have Christian friends who have decided it's worth taking (and who are taking lots of precautions to prevent conception). And it's been discussed since the day I was diagnosed. But we didn't have to think about it in real terms until this summer, when we realized that we weren't comfortable with this option that we had been planning for.

So we prayed. A lot.

And talked to friends.

And read our Bible. A lot.

And prayed. A lot.

And talked to my other doctors, including my gynecologist.

And did I mention prayer? Yep, a lot of that.

We’ve decided that methotrexate is a no go for us. We think we may be done with biological children (though we plan to adopt), but we’re not confident enough in this to take permanent action. And no birth control option – even if we combine methods - is 100% effective (other than abstinence, which isn’t an option!), so that means there’s a small chance that God could create a life within me and then the drug could end it.

The chance would be small, unlikely even. But it could happen. And we would never know on this side of heaven.

We struggled with whether or not God would allow it to happen, creating a life that He knew wouldn’t survive in my body. We struggled with whether or not He would affirmatively answer prayers to close my womb for a period of time. We struggled with whether or not a tiny, tiny, tiny chance was worth struggling with.

We don’t have the answers to all those questions, and we’re okay with not having all the answers. The one answer we do have, without a doubt, is that any chance of destroying life isn’t an option for us.

So it’s no to methotrexate.

For you created my inmost being;

you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

My frame was not hidden from you

when I was made in the secret place.

When I was woven together in the depths of the earth,

your eyes saw my unformed body.

All the days ordained for me

were written in your book

before one of them came to be.

~

Psalm 139:13-16

Thank you for praying

Thank you, friends, for your prayers. As I expected, my appointment on Tuesday was not an easy one. We’ve upped my dose of one drug, opted to avoid another drug (see an upcoming post for more on that), set up x-rays for later this week, and decided that I need to be seeing Dr. T. at every visit instead of every other one. Oh, and we’re keeping an eye on some neurological and cardiovascular issues.

In other words, the visit was as hard as I expected that it would be.

And, at the same time, it was easier than expected.

I’ve been discouraged by easier appointments than this one. And I wasn’t defeated this time around. I had a healthy dose of the sorrow that comes along with living in a fallen world with the knowledge of a place in which no more suffering or pain will exist. That, my friends, isn’t a bad thing. It’s the reality of setting our eyes on Christ while setting our feet on earth. Of being in the world but not of it. Of living between the already of Christ’s coming and the not yet of eternal glorification.

But, beyond that healthy sorrow, I was okay with it. Sure, the circumstances aren’t ones I would have chosen, but they’re part of God’s plan in my life so I want to make the most of them for His glory.

Being prepared - pre-prayer-ed, that is – made a difference. Praise God! And thank you.

A truth-proclaimin', prayer-requestin', struggle-sharin' sort of post

 Though the fig tree does not bud
       and there are no grapes on the vines,
       though the olive crop fails
       and the fields produce no food,
       though there are no sheep in the pen
       and no cattle in the stalls,

 yet I will rejoice in the LORD,
       I will be joyful in God my Savior.

 The Sovereign LORD is my strength;

       he makes my feet like the feet of a deer,

       he enables me to go on the heights.

 

Habakkuk 3:17-19

Let us hold unswervingly to the hope we profess, for he who promised is faithful.

 

Hebrews 10:23

 

 

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Romans 8:28

If you get a chance, would you mind praying for me and my heart? Tomorrow is one of my Remicade infusions. It's not all bad - I sit with my feet up in a recliner with the company of reading material and my fantastic nurse (and sister in Christ!) Penny. It's almost enough to make me forget that I have a needle in my wrist, which turns out to be the best place for IVs for me. 

 

(I never expected to know little bits o' trivia like where the best place for an IV would be. I'm in double digits for the number of IVs I've had at this point, though, so it's good knowledge to have.)

 

I'm fine every other IV, the ones when I get to just sit back and get my IV. This one isn't one of those, though. This one is one of my visits in which I go to see Penny, get my IV started, and then go see Dr. T. I really like him, but at appointments when I just see Penny I get to read and chat about school and books and faith and kids and life in general. At the appointments when I see Dr. T., we have to talk about rheumatoid arthritis. And not just in general terms, but in personal ones. Because God, for reasons that I don't fully understand and that I don't need to 'cause He's the God dude and I'm not, has deemed that RA be part of my testimony, even though I would have said, "RA? No thanks. How about Skittles or Starbucks chai tea lattes? I like those."

I don't like talking about my rheumatoid arthritis.

 

I really don't like it when we have to talk about drugs not working as well as we'd like them to and about next steps that we'd rather not have to consider and about what warning signs I need to pay attention to for complications (those related to meds and those related to the disease itself). And that's what our conversations will be tomorrow.

I realized after my last visit with Dr. T. that I need to be pre-prayer-ed for these appointments. If I'm not, I walk out feeling defeated by the circumstances of the world instead of victorious in the truth of our God. I think, knowing my heart, that the risk for that defeated feeling is high for this visit because (a) I'm recovering from an emotional weekend and (b) I don't expect our conversations tomorrow to be all rainbows and butterflies and unicorns.

Will you join me in prayer? I would really appreciate that. 

Thanks, y'all.

Word of caution

Hypothetically speaking, if you tell your child that it's okay to pee in the water at the beach - like my husband might have hypothetically done because bathrooms weren't easily accessible - then you might also want to tell your child that she should not make said action obvious to other beachgoers.

Or maybe I wasn't speaking hypothetically.

I'm just glad it was early in the morning, and the only people (an older couple, probably some child's grandparents) who noticed were laughing. At my kid? Or at the fact that I stopped to take a picture before addressing the behavior? I'm not sure, but probably both.