Sunday, May 15, 2011

Warm Enbrel is a Bad Thing

I have a confession to make: I am so scared about how my body is going to feel on my wedding day.

I had a minor breakdown about it this afternoon. Since APL and I are planning the entire wedding ourselves, we each have a list a mile long of things to finish, vendors to check in with, and guests to follow up with. We spent the afternoon at home, each working on our own lists. But Saturday is also Enbrel day, so at some point I asked APL to take an Enbrel out of the fridge for me. He did, but then we both got wrapped up in wedding stuff and forgot about it. Several hours later I discovered a warm Enbrel sitting on the counter top. 

Warm Enbrel is a bad thing. Enbrel is supposed to stay refrigerated until you take it. Usually I let it warm up for about 10 minutes, but only so the injection doesn't sting as bad when it goes in. It is still supposed to be cold when you inject it. And, from previous experiences, I know that Enbrel is a lot less effective if you leave it out too long before injecting. 

When I realized we had ruined the dose, I was extremely upset. The last thing I need right now is for my RA meds to be less effective. But, because Enbrel costs at least $400 per injection and is really complicated to get from my health insurance, it wasn't like I could just throw that dose out and take a good one instead. I had to take it and cross my fingers that it will be enough to keep me going.

I was so mad. At first I was furious at APL, because I felt like it was his responsibility to remind me to take the dose, since he was the one who actually took the precious medicine out of the fridge. My first reaction was to blame him for the whole thing, honestly because it felt better not to have to take responsibility for such a stupid error. But the reality is that it is my RA and my medicine and my body that is potentially going to suffer and, thus, my fault. So then I got furious at myself for blaming APL and for being so stupid at a time when I ought to be extra careful.

It doesn't help that I already have all kinds of fear and guilt and anger associated with how my body might feel on the wedding day. I'm literally scared that it will hurt to walk down the aisle or have my first dance with my husband. I'm scared it will hurt when people hug me or that I simply won't have the energy to get through the day. And then I feel super guilty that after a year and a half of planning and all kinds of money and 150 friends and family flying in from all over the country, it's possible that I might rather sit down - or worse lay down - than enjoy the party. And I know nobody would blame me if I had to, but that's where the anger comes in. I don't want it to be ok for me to not feel good at my own wedding!! Because that's just f@%&ed up.

Ultimately I know that worrying and stressing about how my body might possibly feel on the wedding day is totally counter-productive. I know I just need to rest as much as possible, do my best at taking care of myself, and try to relax - and everything beyond that is totally out of my control anyways. I know that having a pity party for myself isn't helping me at all. And I'm going to snap out of it and move on with as positive an attitude as I can muster.

But, at the same time, the end of this month marks my three year anniversary of living with RA. And, after three of the absolute roughest years of my life, all I want is one day of feeling ok enough to enjoy myself. I'm not even asking for feeling good!! I just want to feel more or less ok!!

And I'm angry that somehow that seems like it might be too much to ask. 

4 comments:

~kelly marie~ said...

I am sending you such big hugs right now. As a bride who was extremely ill on her wedding day, almost exactly 4 years ago, I can promise you that adrenaline will get you through the day. It was amazing what the excitement of the whole day could do to keep me going. Did I crash the day after the wedding? Oh yeah. But that day was perfect. I didn't feel like a patient or a sick girl at all. I got to marry the love of my life and that took away all the bad for at least that one day.
I hope for the same for you. I think I can even guarantee it :). Sending lots of love.

Emily said...

Big ol hugs to ya!! I know how stress can make things worse. I'm dealing with the other end of life, the passing of a parent. But know that you have a great support team who will be there for you and a team that will be thinking great thoughts for ya. (That would be us here in the intertubes!)

~Mariah~ said...

KELLY MARIE: Thanks for the hugs. I knew you of all people would understand my worries, but I had no idea that you were ill on your wedding day. Not that I'm happy to hear you weren't feeling well that day, but I am glad to know that you got through it so beautifully. But if you've got any tips for surviving other than adrenaline I'd love to have them. ~;o)

EMILY: So sorry to hear about the passing of your parent. And just as you are there for me through the interwebs, know that I am here for you if there's anything I can do to help!

Little Red said...

Just discovered this post (have been trapped under my grad school rock for a while.) Many MANY big hugs your way, m'dear, and I wish you all the best health on your wedding day. SO happy to be able to celebrate with you, and if you're feeling achy or sad or angry on the big day you can just snuggle into my hair until you feel better. (It has restorative powers. I kid you not.) LOVE you, llama.