Saturday, April 2, 2011

Searching for RA Answers

My tenth anniversary came and went last summer with little fanfare.  No cake cut.  No balloons blown up.  No congratulatory cards.  I doubt that anyone even realized the importance of June 2000.

Why was it important?  Because that's when I received a diagnosis of rheumatoid arthritis.

Rheumatoid arthritis isn't your grandma's arthritis.  You know, when she says it's going to rain in the morning because her knee hurts?  Nope, not RA.  That's probably osteoarthritis and is caused by a joint wearing out from constant use.

RA is different.  It's an incurable disease in which the body's immune system attacks the lining in most of my joints.  My immune system literally eats away at the lining which causes swelling, pain, and eventually deformity.

Chronic.  Incurable.  Pain.  Frightening words even for the bravest among us.  When the words come before babies do, they strike fear deep within a woman's heart.

In 2009 I wrote a series of blog posts sharing my rheumatoid arthritis story in detail.  I wrote to make sense of my story.  I wrote to help other women.  And I wrote so God can use my story.

I receive 5-10 visitors a WEEK who are searching for information about RA, pregnancy, breastfeeding and Enbrel (my medication).  That's a lot of women who are scared and searching for answers.

Sometimes they leave comments or email me and I encourage them.  But most of my visitors never contact me so I have no way of connecting with them further.  Even though they don't contact me I feel the fear and pain in their search engine keywords. 


Like the woman who found me by searching "is Enbrel safe during pregnancy."

What she's really saying is "Enbrel helps me function like a normal woman.  I don't want to give that up.  But I desperately want to have a baby.  I'm scared of the RA pain.  But I'm also scared to damage my baby.  Someone give me answers so I can make a choice and not be afraid of the consequences!" 

Oh, Friend, how I wish I could say "yes, Enbrel is safe for pregnancy."  But I can't because studies haven't been done.  I can only share the choices I made.  Which feels less than satisfactory in the face of such an important decision.

Then there's the woman who found me by searching "will I ever get off Enbrel."

What she's really saying is "I'm tired of giving myself a shot every week.  I'm tired of remembering to order my medication from the specialty pharmacy.  I'm tired of dealing with doctors, insurance companies and pharmacies.  Will I ever be normal again?"

Oh, Friend, how I wish I could say, "Yes, a cure is available!  You can throw away all the medicines and not think about doses and co-payments."  But I can't because most women never go completely inactive without medication.  I can only share how great the drug works for me.

Finally, there's the woman who found me by searching "my husband is taking methotrexate and I had a miscarriage is that why."

What's she's really saying is "I lost my baby.  I need answers.  I need to know what caused it so I can prevent it from happening again.  I need to know if it's our fault this happened!"

Oh, Friend, how I wish I could hug you and tell you it wasn't the Methotrexate (another RA medication)!!  But I don't know.  I've never taken Methotrexate.  I can only share that I've also experienced a miscarriage.  The loss is real and is always there, though the pain lessens with time.

The one search I've not received visitors from is "why did God give me RA."  This is a question I have wrestled with personally. 

What I really meant was "why did you let this happen?  Why did you give me a life filled with physical pain?  Did I do something wrong?  Was I not good enough?  Is there something I can do so you will heal me?"

Today I don't believe God gave me the disease but I do believe he has allowed it.  RA is not a punishment because I sinned nor is it because I failed.  God is able to heal me, if and when he chooses. 

This year I took 2 Corinthians 12:8-10 as my theme:  "when I am weak, then I am strong."  When I can go no further, then God steps in.  By sharing my story God can use it to encourage other women.  That gives a purpose to all my shots, aches and fatigue.

I'd love to celebrate my 20th RA Anniversary with a cake, balloons, and the women who've been encouraged by my story.  What do say?  Can you make it June 2020?

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This post was entered in a contest at A Holy Experience in the hopes of winning a scholarship to She Speaks.  The She Speaks Conference is about women connecting the hearts of women to the heart of our Father God and that your heart is to serve Him and His daughters, as He leads.

4 comments:

Amy said...

I'm up for the celebration in 2020! :) Thanks for sharing...

Lee Good said...

I have RA too and had a full body scan (Looking for cancer) and they found RA in most major joints of body including neck. But as I have 3 other autoimmune disorders the doctors did not seem that interested in the RA! It is the thing that causes me the most pain, I think.

Stephanie said...

Lee Good, thanks for stopping by. If you're doctors aren't proactively treating your RA then I suggest you get another doctor! Left untreated RA can cause joint deformities that can only be repaired with joint replacement surgery. It's important to find a doctor who is willing to treat all of your autoimmune disorders.

kairoscoaching said...

Stephanie,
I enjoyed reading your post! I pray that you won't have a 20th anniversary because God chooses to heal you first!! However, if you do have a 20th anniversary, I have no doubt you will still be giving God all glory in your gutsy authentic way. Keep on writing. You have the experience that will help so many others. Glad to have met you on Better Writer, friend!

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