Wednesday, June 2, 2010

My Arthritis Story

Hello, my reader friends.  I've missed you so.  I've been absent for over two weeks and finally have such a build up of must-blog ideas and stories that I cannot put this off any longer.  You see, I have a bit of news and a story to tell you, and I've been avoiding it for reasons I can't put my finger on.  So, I'm just going to jump in feet first and get it done with so we can go back to the fun stuff.  You may remember in my heating pad post I mentioned having arthritis, this is a story about that.

We had our third child, the handsome Baby T, last September.  In early November, I was trying to peel some crayons for a craft with the older two and my fingers hurt, so I stopped after two or three.  I didn't pay much attention to it, possibly because I was a bit busy caring for 2 small children and a newborn.  That night I got to thinking.  My fingers had been swollen since Baby T's birth.  Swelling is common, normal, after childbirth.  One of my nurses even said it could persist for a few weeks.  But 6 weeks is more than a few. 

So, the next morning, I did a little googling.  And then I called my sister and asked her to please talk me down, I was sure I had Rheumatoid Arthritis and was freaking out a little.  She calmed me down and told me to hang up and make a doctor's appointment.  So, I did.  This was on Friday.  Over the weekend my fingers started hurting even when I wasn't using them. 

Fast forward through over 6 months of doctor visits, blood work, anti-inflammatories, and prayer.  I finally have an official diagnosis.  It turns out, my original diagnosis was correct, I do have Rheumatoid Arthritis (RA).  As of our last check I was still seronegative, meaning the antibodies in my blood that are present in 75% of RA patients haven't yet made their appearance.  I was last tested in November, shortly after onset.  We'll test again this summer.  It really makes no difference, though.  RA is RA. 

To say it's been a tough pill to swallow is an understatement.  In fact, I think it's still stuck in my throat somewhere.  I am active and independent, I'm busy and a hard worker, and I'm YOUNG.  I have so much to do, so much I want to do.  And this disease is going to change things.  To say otherwise is ignorance.  I may, no, I will do the things that are important to me still.  But, I may have to do them slower or differently than I first planned. 

Right now my feelings are all over the place.  I feel stubborn and strong and ready to fight this disease.  At the same time, I feel scared, unsure of what the future will bring.  Will it bring disability and me burdening my loved ones?  I hope not, I pray not, and I'm doing all I can to lessen my chances of that.  Will it bring this disease to my children?  Oh God, I pray not.  Perhaps it will bring my family closer together.  Or a cure.  Yes, let's hope and pray for a cure, or at least remission.  Other times, I admit I'm angry or least resentful.  It's so frustrating to not be able to open a package or to struggle with tasks I did last year without thinking. 

And, I feel a bit like I've been in the closet.  I'm not ashamed of my arthritis in any way, but I am shy and a bit proud.  I don't want to be viewed as a complainer and have told very few people in real life about my situation as a result.  And, it seems the people I have told aren't really very comfortable talking about it.  People either shut down or act like nothing's wrong.  Which is understandable, but hard.

Also, I don't really think most people know a great deal about RA.  Even with my medical background, all I knew was that it was an autoimmune disease that affected the joints.  I've learned a LOT in the last 6 months.  Recently, I came across and have learned even more.  I strongly encourage you to visit that site and check out her RA Info and RA 101 pages.  Especially if someone you know in real life has RA.  It may give you a better understanding of them and the disease they're living with. 

So, anyway, that's the scoop.  I've been processing my official diagnosis and trying to live life in as normal a way as possible.  I'm staying positive for the most part, but the occasional good cry sneaks it's way in.  And, that's ok, too. 


  1. I love you. Seriously, I hope I'm half the wife and mom you are one day.

  2. Thank you so much for sharing - I can only imagine how scary and confusing it has been for you and your family. Much love coming your way.

  3. I'm sorry. My mom has RA, so I know a little about it, but not as much as I should. I think she's had it my entire life. Thanks for the link to the site, I'll check it out.

  4. Thanks for sharing, Megan. As you probably know, my dad has RA and it's been tough. I'm hoping and praying for a cure or some breakthrough too. Thinking of you and sending positive vibes your way. And p.s. I think you're one of the strongest women I've met and I know you can kick RA's butt! :)

  5. Wow. I'm sure that was tough news to deal with. I will admit, I know very little about RA. But I found out last fall that I have a thyroid disorder, and I felt many of the same feelings you felt. But for me, I had been miserable for years because of it, and it was such a relief to have a diagnosis and some treatment.

    What kind of treatments is there for RA?

  6. That is just hard to deal matter what. I am sorry you have to go through the pain, uncertainty, and emotional stress of RA. I completely understand about wanting to keep it to yourself. But the friends that are really meant to be in your life WILL support, love, and be there for you regardless. Perhaps life changes are natures way of cleansing friendships that are no longer useful.
    My best thoughts and prayers to you.

  7. Thank you all for the comments, love, and support. I feel so blessed. Really.

    Regarding treatments: There are a variety of medications, some help alleviate symptoms while others are supposed to modify the disease. I'm on one of each right now with almost no noticeable improvement. Most of the medications are toxic and have a laundry list of possible side effects, the scariest of which is death. If everything goes as planned(read: we figure out a way to swing it financially) I will start Enbrel this summer. About 2/3 of people with RA respond to it, so I hope I'm in that group.

  8. Wow, that is a tough pill to swallow. I'm so glad you are sharing your story. I think the occassional cry is definitely in order. It sounds like you are handling the diagnosis as well as any young mom could!

  9. Megan - I've been reading and enjoying your blog for awhile now, but I don't think I've ever commented. I can't imagine the surge of feelings you've had in figuring out and accepting RA. I read a good amount on the website you recommended and had no idea how serious it is - and different from what I typically think of as arthritis. I especially like the comparison of an overused tool (arthritis) and a tool put in battery acid (RA). I will pray that you respond to the Enbrel and are able to continue doing all of the things you enjoy. :)

  10. Reading this post just gave me major chills! I starting having some joint issues a few months after my third son was born. It took almost 6 months, but last April I was diagnosed with a form of RA. It has been a little over a year, and for the most part I am back to normal {at least no where near as bad off as I was at this time last year}! I am on a bunch of different meds that have been great at controlling my symptoms. If you ever need to talk about it or have questions, please don't hesitate to send me an email:)

  11. Oh man! I know you mentioned this, but I didn't realize the severity of it... I sure will be praying for you!!! I sure have missed your blogs!



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