Thursday, February 28, 2013

On Having RA

I hate it.  I want to wake up and find it was all a dream.  It's my reality.   I hate it.

Now that I've gotten my true feelings on the matter out of the way, I can maybe write with some clarity.  Three months after Kenly was born, I was diagnosed with rheumatoid arthritis.  I couldn't for the life of me understand why everyone around me was crying about my diagnosis.  My best friend cried.  My parents cried.  I won't say I was elated.  I was upset, but I felt relief that my pain had a name and it was only rheumatoid arthritis.  I was convinced at the time that I was dying of some mysterious bone cancer.  I felt sure that I would never see Kenly grow up.  That she would never know my voice or remember me.  So, hearing the words rheumatoid arthritis knocked the wind out of me, but I quickly found a sigh of relief.

Fast forward to now.

I've found my tears.  I don't let them flow freely all the time, but occasionally the pressure builds and I'm afraid I might explode if the floodgates don't open.  When I cry, I do a good job.  The past two weeks I've been struggling with pain, fatigue, and weakness.  Last Friday I bought a wrist brace after I nearly dropped Corah in the middle of the night.  My left wrist just gave out, wouldn't support her 19 pounds of wiggling weight.

As I type, I feel like I have the flu in my hands, fingers, and wrists.  It isn't a debilitating pain, but it keeps me from editing photos, from reading bulky board books to the girls, and from having tickle fights on the floor.  In short, it makes me feel old and weak.   It keeps me from doing things I love.

I'm 37.  It's not supposed to be this way.  I'd like to think that if I had received this diagnosis at 65 that I would have rolled with the punches.  Thankful for 65 healthy, "pain free" years.  That's how I view the 65 year old me taking the news.  I'm probably looking through some freakish rose colored glasses.  In truth I would probably be just as disappointed, hurt, and angry as I am right now. 


I don't know how to do life right now, with all of its physical demands, with RA.  I'm trying to navigate the waters of this disease but I feel adrift.  Lost.  How do I have a dance party with my girls when my knees and ankles ache?  How can I tickle them until they're breathless when bending my fingers causes pain?  How do I hold their adorable, warm and wiggling bodies without hurting?

I feel like I'm less of a mother because of RA.

I'm reading One Thousand Gifts by Ann Voskamp right now.  I know God place this book in my hands for such a time as this.  I need its challenge.  I need to struggle with what I feel is a curse.  I need to find the blessing in the pain.

Honestly, I'm coming up short.  Some days I wake so thankful.  I've had 24 months, 2 WHOLE years, without significant trouble.  Most people with RA struggle daily. God gave me almost a year off methotrexate while trying to get pregnant with Corah.  I carried Corah for 9 months and felt the best I'd felt since 2008.  I've had 15 months of nursing Corah while taking only hydroxychloroquine and the occasional ibuprofen for pain.  In three years I've only had to take one steroid taper.  I'm blessed.  I know that.  I've had almost three years of quality life without methotrexate.  So why do I feel so cheated right now?

Why am I mourning being the Mama who can toss her girls into the air?  I get to be their Mama.  That should be enough.

Every time I've had a pain free period, I have secretly hope my RA has gone into some sort of super remission.  That I won't have any pain for 30 years.  When I feel the stiffness and pain creeping back into the picture, I mourn for a few days.

I need to embrace my reality once and for all.  But how do you embrace something you hate? 

I don't like telling Kenly that I can't braid her hair because my hands hurt.  I don't like dropping the knife three time while trying to spread peanut butter.  It is frustrating.  I hate hearing Kenly say, "Mama, let me do that so it won't hurt your RA hands."  I want my girls to remember a happy, healthy mama.  A mama who made them laugh.  I don't want RA to define me.  I don't want it to control my life.

I need to call the doctor, but I don't want to.  I need to wean Corah, but I don't want to.  Why?

I know Dr. Meyer will tell me it is time to take methotrexate again.  My hatred for that drug is almost as strong as the hatred I feel for RA in general.  Its only saving grace is that it keeps the pain in check most of the time. 

I will.  I will call.  I know it is important for me to be healthy for them.  For my loves--Adam, Kenly, and Corah.  I have to, but I don't want to.

I'm struggling.  I'm wrestling with God and asking Him to show me the beauty in this mess.  I don't see the benefit, but I know He does.  I know He cares even though sometimes I feel like this has to be some sort of curse.  I'm claiming Romans 8:28.  I know He can somehow make all of the RA nonsense into something beautiful, something good.

Ann Voskamp wrote:
"That that which tears open our souls, those holes that splatter our sight, may actually become the thin, open places to see through the mess of this place to the heart-aching beauty beyond.  To Him.  To the God whom we endlessly crave."

I want, as she writes, "to give up resentment for gratitude, gnawing anger for spilling joy."

I want to see the beauty.  I want to find joy in the midst of joy.

I will keep looking.

My eyes are open.  

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