World Arthritis Day ~ My RA Story

Before you start…I hate long blog entries and I know this is one so hopefully I won't lose you in my rambling unedited…had I edited, I would have probably edited parts away :)

Every year I procrastinate.  This is the fourth year I am writing my Rheumatoid Arthritis story for World Arthritis Day (you won’t find the other three, they usually end up deleted).  My last excuse, watching The Brendon Clark Show online, ended almost two hours ago and I still found other ways to procrastinate.

I don’t have a problem discussing having Rheumatoid Arthritis (RA), my problem is usually who knows and to what level.  People in my life fall into four categories in regards to my RA.  You either:
1. Have no idea I have it
2. Have as needed information
3. Have had a lengthy discussion with me about it
4. Have it, so I don’t have to say very much because you get it.

For anyone who is finding out reading this, I apologize for that but it’s not a topic that normally comes into a discussion.  It’s not like when you meet someone you say hey, nice to meet you I have RA.  Trust me, it doesn’t mean I don’t like you, it just means it hasn’t really come up.

This is already getting longer than I’d prefer it be so I should probably get into my RA story.  I was officially diagnosed at the age of 27 after three years of constant symptoms.  Especially because I am Sero-negative (the blood test for RA comes back as being negative), it was harder to get a diagnosis.  So I patiently (and sometimes not so patiently) went through test after test.

At the time of my diagnosis, I had spent three years with massive amounts of inflammation and illnesses…almost to a state of being constantly ill with no breaks for three years.  Working backwards through my medical records, I actually showed symptoms of my RA from about 8 and much more after I had pneumonia and then a tumbling accident at 13 and did some damage to my knee.  But it was all things that were attributed to getting older and playing sports and just being an active kid.

For me, the worst part of dealing with Arthur (what I call my RA when I’m really, really mad at it) can be summarized in the title of a speech at an Arthritis Seminar: “Having Rheumatoid Arthritis May Not Kill You, But It Will Destroy Your Life.”  It was a speech given by a doctor and like every aspect of Arthur, it’s true and false at the same time.  RA itself probably won’t kill you but the inflammation can cause problems with organs not only joints.  So if it’s not monitored, realistically it could cause death depending on what it affects.  RA does most definitely destroy your life, at least what you thought your life would be before your symptoms and diagnosis.

Before Arthur came along, I wanted to continue playing sports in high school.  I wanted to be a singer “when I grew up.”  Arthur did change all of that.  I struggled (with what my doctor thought was just problems from my knee injury) through 8th grade with basketball, cheerleading and softball but my doctor wouldn’t approve sports after that.  He barely approved PE class in high school because I just kept getting inflammation throughout my body.  I could live without my sports I figured.  Singing was what I wanted to do anyway.  After I got pneumonia, could never sing again.  Doctors couldn’t figure out the problem and just talked it up to growing out of the voice I had.  It was actually my good friend Arthur.  The first place I ever got RA nodules…my vocal cords.  So Arthur truly didn’t destroy every aspect of my life, but destroyed what I thought it would be.  Don’t get me wrong, Arthur brings with him wonderful gifts that I never want but he won’t take back.  Inflammation of course brings pain, but the fatigue associated with it is much worse for me.

Most people hear the word Arthritis and think of Osteoarthritis (Arthritis from use or breakdown of joints over time) ~ you know, “old people Arthritis.” Rheumatoid Arthritis is not that.  In short, Rheumatoid Arthritis is inflammation that is caused from the immune system believing that the joints are invaders and they need to be destroyed.  The immune system goes into overdrive trying to stop what it believes is something attacking the body.  Anywhere there is any type of joint (or a connection) is generally susceptible to being attacked.

How do you fight it?  Steroids, drugs that reduce the immune system reacting, drugs to counteract side effects of the drugs you take…extra pain pills on days.  My pill count for the week is 200 pills over 7 days plus one injection.  That is just to maintain (or hopefully do so) where I am at.  Medications for RA include drugs that are used in higher doses for chemotherapy and drugs that are meant to change your entire cell structure.

Everyone’s RA is different.  Every day for me is completely different.  Until you have actually visible joint damage, people some think you are crazy.  I have many of those.  Or when I need to use a cane or walker when I am really bad and can’t fight it, the stares and the questions of what is wrong with you.  I have a disease that isn’t going away.  Some days are better than others.  Some days I would like to curl up under a rock and shrivel up there.


There’s always more that can be said, but if you made it this far I don’t want to lose you now.  I do have one more thing for this World Arthritis Day, check out Rheumatoid Arthritis Guy’s 60-Second Guide to Rheumatoid Arthritis (link in next post). It is definitely a good, quick overview of RA.

Thanks for reading about my RA!  If you have any questions, I am always willing to answer.  I just don’t like throwing too much at people.