Tuesday, February 1, 2011

I {Heart} Diclofenac

I have a love/hate relationship with my body. It is an incredible thing, an amazing gift from my Heavenly Father. But sometimes I feel angry towards it, like it isn't doing it's job for me.

I love that I can give through it, bring forth human life from it, as well as sustain that life. It is an incredible miracle. I love being a woman, feeling feminine because of it, and getting to dress it in fashionable, fun, and modest clothing and accessories and SHOES :) I love working it, straining it to the max, feeling how much my body can actually do. I love being able to taste with it, to prepare and eat delectable food because of it. I enjoy seeing with it, all of the beautiful creations around me. I love being able to try new things with it and learn to love those new things because of different experiences. I love doing the familiar things with it that it has come accustomed and used to. Like rocking a baby. Giving a hug. Wiping away a tear. Riding a bike. Snuggling up in a warm bed next to my Honey. Smiling. All of the things that bring me comfort and joy. A body is really an intense, amazing, wonderful thing. I love my body.

But then again, I feel as if it has failed me. It has disease inside it. It has slowly but surely turned against me. It has attacked itself from the inside and affected my day to day living and way of life. I hurt. All the time. I ache. I cannot get out of bed in the morning without assistance. I can hardly lift my baby from his crib without crying out in pain or having a silent tear run down my cheek. I cannot lie down comfortably for longer than 10 minutes. I was blessed with a wonderful sleeping baby who goes 10 hours at night, and yet, I cannot enjoy it. I don't sleep comfortably, or restfully. It hurts to do things that I used to do with ease. Things you would never even think twice about doing, and yet, now I do. Like lifting a child. Carrying a basket of laundry up the stairs. Taking a big, deep breath. Stretching. Reaching up for that item on the top shelf of the pantry. Simple things.

That is where I am right now. I just fed me baby. It is 5 AM and I cannot go back to sleep because the pain is so great that I don't even want to think about trying to lie back down in my bed. I feel like a stiff 2 X 4, unable to bend. I know that I do not have it bad as some, by far. I am able to function and still live life. But sometimes, I do feel sorry for myself. I really try not to, I know everyone has their lots in life. The reason I feel this way now is because there is something that can help. Diclofenac. Oh how I love that little, white pill. It takes away the majority of my pain on a day to day basis. It is a blessing.

However, before I had Magnus, my doctor told me that, although I could take the medication while I was nursing my baby, it would cause him pain. Colic, a sore tummy, and horrible gas. He told me I would have to think twice about nursing him and decide what I wanted to do.

I had greatly researched and read many articles about Ankylosing Spondolitis and pregnancy. The breakdown was this: 1/3 of woman had no change in their symptoms of the disease. 1/3 of woman's symptoms decreased. 1/3 of woman's symptom's became worse during pregnancy. Originally, I thought I fell into the category of symptoms becoming worse. Now I know that my symptoms really didn't change very much. Because after the article told about that, it said that after the birth of their child, 90% of woman with AS had a relapse (or "flare-up") within the first 6 months and their symptoms came back worse than ever before. That is just the nature of the disease, as it is with many auto-immune disorders. It comes and goes and comes and goes. Sometimes you can hardly remember you have it, other times, it's all you can think about because of the obvious and debilitating pain.

So, what I did was hold off as long as possible. I only took my medication if I absolutely HAD to, in the beginning. I thought I was doing great. My body felt so wonderful just from giving birth that I needed no pain medication. The euphoria from having a new baby and not having that additional weight on my joints was wonderful. Until about 2 weeks ago when all my my symptoms returned, tenfold. I woke up to the hungry cries of my baby in intense and agonizing pain one morning and woke Andy because I literally couldn't move. I hurt and ached all over my body. He had to help me up and I felt like a hunched over 90 year old grandmother as I hobbled to the baby's room where I tried to lift Magnus out of his crib. I was able to kind of swing him up into my arms. I could hardly breath without having pain course through my body. I couldn't sit to nurse. The only way to ease the pain is to walk around and allow my joints to become "un-stiff" from my inactivity during the night.

So then I had a dilemma. I started taking my medication on a daily basis after that. I immedietly noticed my generally happy, sweet baby turn on me. He became fussy nearly all day long. He cried and cried, even when being held. His poor little body would go stiff in my arms every so often and he would cry out in pain. After several days of this, I stopped taking my medication again. After a couple days of medication-less milk, he returned to his good-natured self. I would much rather have myself be in pain than my baby, of course. And then there is the decision that maybe I should just stop nursing. I have nursed all of my babies and I have never had any extreme enjoyment from it. I know it is the best possible thing for my child, and it's not like I hated the experience and so I endured through it for at least 6 months with each one of them, sometimes even longer. I actually started to enjoy it more with each child. But it is different this time, as I suspect I had known it would be all along. This is my last baby. This is the last time I will get to experience any of this "baby-type" stuff. I want to enjoy it and savor it and make it last as long as possible. I do not want to give up nursing already. I would rather endure the pain. So I will.



I apologize for this long, rambling post. It is nice for me to be able to organize my thoughts into something that makes sense to me. And I'm not sleeping and have nothing better to do :) If you have any interest, click here for a little more info on Akylosing Spondolitis. The video at the end gives me hope that they (I don't know who "they" are.... doctors? Scientists? Sure) are working on early prevention and maybe even a cure. Wouldn't that be amazing? I think so :)

10 comments:

The Jubbs said...

Oh Sarah, I hope you feel better :( I would bring you dinner too, but that's kind of an expensive dinner! I wouldn't continue nursing, but that's just me :) I don't anyway! But I'm impressed that you do. Try to enjoy it. 6 months or so (whenever you plan to stop anyway) will come so fast. We'll pray for you.

Miranda said...

You're amazing. What a daily battle, that you have made so meaningful. Maybe you could pump a whole lot and go a week on and a week off with the medication while keeping Magnus on breastmilk?

Chris and Brittani Knudsen said...

Oh my goodness Sarah, I am so sorry to hear about your woes...I didn't ever realize how bad it is. You are such an amazing person, and I know that you will get through this. I could seriously cry just thinking about how much pain you are in. Keep your chin up, and know that people are appreciative the strength that you show through all of this! Thank you!

Melanie said...

Oh Sarah, I am so sorry you have to deal with that. I can't even imagine. I'm so impressed that you are willing to endure so much pain so you can breast-feed. I wish we lived close so I bring you dinner or help out with your kids or do something to help you.

Tara and David said...

Lady, you amaze me!!! Love ya!

Emily said...

Like I said on FB, you really are a Warrior Mom. I knew you had said something about health issues, but I didn't know what and didn't feel comfortable asking what was wrong. This is terrible. :( I checked out that link and everything and I feel so bad that you are so young and going to have to struggle with this disease for the rest of your life. I can't imagine how terrible the pain must be. My hubs has gout and when he gets flare ups,he's pretty much useless and I feel so helpless. I'd imagine this issue is like 100X worse especially since the inflammation is everywhere :( I am so sorry. :(
Also curious to know if you guys have ever talked to a genetic counselor about this and how it might affect your kids. I have always been fascinated by the study of genetics and once considered studying to become a genetic counselor but then again, how depressing it'd be to tell your clients terrible news all the time :( I digress...
Anyways my point is that I feel really bad for you, and for Magnus too...you're officially in my prayers and I mean that.

Amber Kei said...

Oh, my goodness! Feeding my baby in the middle of the night is horrible enough without all the pain. Tonight I will try much harder to be grateful that I'm only exhausted and can't keep my eyes open, when at least I'm not in horrible pain. Oh, Sweetie! I wish I could be there to carry your laundry and lift your babies. Bless your sweet kids for being such good kids. I hope you are able to enjoy your 'lasts' that you want to.

Shana Smith said...

Wow Sarah, I never relized how bad AS really is. I think about the nights when I was 9 months pregnant, standing on my feet doing hair for hours straight, then waking up around 2 AM due to a screaming 2 1/2 year old, and literally falling to the floor because my lower back HURT so bad! That was nothing compared to the pain you face on a daily basis. I am so sorry, I really cant even begin to imagine that kind of pain! You have the BEST attitude. I am sure that one day some kind of cure to this disease will be "invented".. You continue to amaze me, you are a fantastic person Sarah, hang in there a few more months and enjoy nursing Magnus, you are lucky- I was only able to nurse Hyde for 6 weeks and dried up like a bone!!!

Emily said...

Nursing is wonderful, and I can't imagine having to choose between it and being pain free yourself like you do. Being a mom is wonderful, and those of us who get to experience it are so lucky. Good for you, and I hope you can hang on to nursing for as long as you like!

Dave and Kristin Dirkmaat said...

Sara-
I don't know if you remember me but I am Rebecca's friend. we hit the pool and park a few times together. I saw your blog on her page and saw this post. I am so sorry for you. I had a crazy inflammation flare up about 6 months after my third baby. I went to doctor and Rheumatoligist but all the test they ran were negative. The steroids completely kicked it but I never found out what it was. It was horrible though so I can feel your pain. I couldn't walk, carry kids etc. I still don't know if it was a virus, my body may have broken down from having 3 kids in 2 1/2 years, or some type of auto-immune disease but I am so glad it hasn't come back. I hope that they keep finding advancements in this field and you are amazing and keep going strong girl!!! stay in touch!