My story

I have been meaning to start this blog for a long time.  I was diagnosed with RA almost 5 years ago and have been looking for support groups in my area but have not found them yet.  I enjoy reading other RA blogs and figured I would start one to 1. get all of my thoughts out of my head and into cyberspace and 2. hopefully create an online support group where people can share their thoughts, struggles, triumphs, frustrations etc.  The one thing I try to do is stay positive, but as we all know, there are just some days where that seems impossible.  I promise not to dwell on the negative too much.  If I do, call me out on it and tell me to stop the pity party.  Most entries on this blog will not be as long as this one, but I wanted to share my story just in case someone can relate.  Some entries will also focus how I manage my RA while at the same time raising my very spirited four year old son :-)  I am sure that some can relate to that as well!  So here go nothing...

I am not one to make up or exaggerate medical issues.  In fact, I tend to blow them off until it gets to the point where my gut tells me to stop ignoring them.  Sometime around August 2008 I noticed that my ankle was swollen and I had no idea why.  I couldn't for the life of me remember having twisted it and it really wasn't all that painful.  When it didn't get better I made an appointment with my PCP.  If I remember correctly I didn't see him, but someone from his office who told me I was just clumsy and probably didn't remember what I had done.  Fast forward about a month or two and the pad of my thumb was excruciatingly painful.  Again I called my PCP and again I was scheduled with the physician's assistant.  I was a mystery to him as well.  He tested me for Lyme disease and RA but assured me that it wouldn't be RA because no one else in my family had it.  I guess there is a first for everything because my rheumatoid factor was off the charts.  It was official, I had RA.  At that time, I had no idea what that meant.

By the time I found a Rheumatologist, I had discovered that I was pregnant.  I was one of the lucky ones and my RA went into remission during my pregnancy.  I was feeling great!  On June 22, 2009 my beautiful baby boy was born, and I was about to find out what this RA thing was all about.

My Rheumatologist told me that the normal course of action would be to treat the RA very aggressively  to prevent joint damage.  I had other plans.  I was REALLY adamant that I wanted to nurse my baby.  We kept having this discussion at every visit but she was unable to convince me to go on any medication even though I was in so much pain I wanted to cry almost every day.  Most nights I was crawling up the stairs.  As my son got older and more mobile I was barely able (if at all) to get on the floor to play with him.  I lied to the doctor though, told her things were not that bad and tried to convince myself that was true.

By December 2009/January 2010 I was back to my pre-pregnancy size.  Yeah for me!  By April I had a lost a significant amount of weight.  So much so that I couldn't ignore it.  Once again, I tried to make an appointment with my PCP on a Friday but he was out of the office.  I saw another doctor at the practice on a Friday who did some blood work and told me to call my PCP on Monday.  Bright and early on Saturday morning, the next day, my PCP woke me up and told me to stay home and avoid all crowds.  What the what?!?!?  What was he talking about?  He told that my white blood cells were so dangerously low that he was afraid of my chances for infection.  Here we go again.

When I visited his office the following Monday with my mother all I heard were words like "leukemia" and "lymphoma."  They wanted to do more testing.  I almost lost it.  I had a baby!!  I was in my early 30's and just wanted to have a normal life!! But instead, I had weekly blood tests, CT scans, bone marrow biopsies,  and lymph node biopsies.  I had to go on prednisone, which made me a absolute crazy, angry lunatic.  Long story short...I was diagnosed with Felty Syndrome.  I obviously had no choice but to go on medication.  I started with methotrexate.

The methotrexate made me feel better, but not great.  I kept asking my Rheumatologist what else I could do to make me feel better (diet etc) and besides exercise she had nothing.  Time for a change.  I switched doctors and it changed my life.  From the moment that I first saw my new Rhuematologist she told me to go gluten and dairy free and told me to take a bunch of supplements (fish oil, probiotics, tumeric, calcium, folic acid, an anti-inflammatory shake, B-12).  That made all the difference in the world.  I felt amazing.  My medication hadn't changed (I had been on it for a year at that point) so I know it was the diet.  She tested my C reactive protein what I first visited her.  Normal is 1, mine was 40.  Within the year we got it down to 0.  I was on top of the world.

As often happens, I got a little too complacent and started cheating on the whole gluten free thing.  I stopped taking most of the supplements.  That, combined with a stressful new job, was the perfect storm for another flare.  I was so mad at myself.  I was a recluse...I neglected my friends and totally hibernated during last fall and winter.  This time I had to tell myself to quit the pity party and I did something about it.  I decided being a lawyer wasn't for me and I got an amazing new job teaching Spanish at an all girls school near my home (teaching Spanish is my passion!).  It's not going to make me rich, but I am sure I will be happy :-)  I got strict with my diet and started taking most of the supplements again.  I am in the middle of switching medications because I definitely have some joint damage and I want to make sure that I don't ruin my joints any more.  I took this summer off to spend with my son and we have had a blast.  I started exercising again and taking more "me" time. Things are looking up and I want to ride the wave of positivity for as long as possible.

Sorry if this has been wordy.  I hope that some of you can recognize parts of your own journey in my story.  I would love you hear your stories, your thoughts and your feedback.