Happy International Arthritis Awareness Day… My Story

Hello.  My name is April.  I have Rheumatoid Arthritis.  I also have Osteoarthritis and Sjögren’s Syndrome and Raynaud’s Syndrome.  Yay me (sarcasm implied).

My Story…

My diagnosis was 2 years ago this coming December…. been a long 22 months.  My Rheumatologist (the doctor that usually takes care of those of us with things like RA and Lupus) said I had it at least 18 months before she saw me the first time, probably longer… based on amount of inflammation and joint damaged I already had when she first saw me.

If I were to think back, I would say that I probably started to see the early symptoms of RA back in probably 2002 or 2003, I definitely saw the effects of the disease in 2006 when I started considering having my wrist (broken in 1998) fixed.  RA is very likely the reason that the ‘fixed’ arm with the cadaver bone in it came apart and didn’t heal at all.  This precious piece of information I learned from the most recent orthopedist who (hopefully) fixed my arm for good this time.

I know that I was flaring on our last trip to Disney World (2008 summer) when my feet hurt so bad that every afternoon I hobbled back to the hotel room trying to get to the grass from the parking lot so it would hurt only a 12 (on a scale of 1 to 10) rather than the 18.  My toes were so inflamed that I had to wear by Teva sandals so I could adjust the toe strap as large as I could so my feet didn’t press against it.  When I got to the room (or the pool, whichever came first depending on which parking lot we got) I would step into the marginally cooler water to try to bring down the swelling enough to tough out the pain.  It wasn’t pretty.  And I love Disney and hated leaving the parks early but it was all I could do to make it through the afternoon.

I was told I was probably just running too much because I wasn’t running at all, but it would mean actually having to admit we aren’t the most amazing doctor that isn’t a doctor in the world.  It was a lot like “you are just typing too much” because obviously typing has ever made my shoulder/elbow/wrist/fingers swell to half again their normal size and I obviously type with my shoulder… ok…

I finally quit listening that all I had to do was not do the things that I loved in November 1010 (yeah… well over a year of being in pain and sucking it up and smiling and not letting on how badly it hurt) when my imaginary aches and pains started to be nodules on my knuckles and I had to quit walking let alone running because I ended up limping if I walked to the mailbox.  And somehow it was still all about overdoing it even though I wasn’t DOING anything…

So I got bitchy and put my foot down (figuratively… SO not literally) and went to the doctor.  My pcp looked at my swollen joints and my nodules and sent me immediately to the lab for blood work.  The next day I was told that my Rheumatoid Factor was extremely positive and I needed to find a Rheumatologist.

That was when Stephanie Booth and her trusty side kick Sean came into my life.  She was painfully (figuratively as well as literally) honest, sent me for TONS of x-rays and more blood work.  Turned out I had 26 involved joints (all my fingers and toes, wrists and ankles) and I was already facing joint damage.  Oh great.  I was 44, 175 pound (over weight but I had lost considerable weight at that point and I wasn’t horribly obese at the time).  Dr Booth suggests that I’m in good health and could loose a bit of weight, but I’m not gaining weight and I walk 4 to 6 days a week.  I’ve taken up wearing my Vebrams because I think they are cool and they are way comfortable on my ankles and knees.

I was sitting at my desk at work when the call came… You have rheumatoid arthritis (which I had already figured out because I dig and dig and dig).  I cried and cried because when I was a kid we visited a great aunt who’s fingers were twisted and gnarled and when I saw the pictures of RA, it was what I feared and remembered.  I was sure that I was going to have the same situation.

Dr Booth calmed my fears, assured me that RA isn’t as awful.  It is, but that is besides the point.  It isn’t an “old people” disease.  It is my body getting pissed off at itself and attacking the joints.  It can happen to young kids, skinny people, middle aged people, normal sized people, old people and heavy set people.  If you are a people, you can easily get RA.  There are some risk factors.  If there are other people in your gene pool that have another autoimmune disease (which is what RA and Raynauds and Sjögren’s Syndrome are… it is what Lupus and Juvenile Diabetes are, as well)… you have a greater chance of getting an autoimmune disease.  It pisses off the little immune system buggies when you have a joint issue (like my booboo wrist that I broke for example) and it can settle into the affected joint and get totally comfortable.

January 2010 I started on Prednisone and Methotrexate (both pills) as well as lucovor.  The prednisone went by the way side soon.  The methotrexate ramped up.  from 2 pills a week to 4 to 6 to 8 to 10 pills a week.  It did part of the job, not all of it.  The pills made me sick (dizzy, pukey, tired, horrible) for 28 hours or so.  made for an awful weekend.

When Dr Booth realized I wasn’t going to be great with the pills, I started on my first tummy injections (1 ml a week) which agrees with me much more than the pills.

The methotrexate makes my immune system not attack my body by turning it way down.  Enter the ease of getting the flu and colds and other communicable diseases.  It is a chemotherapy drug which means it also tends to make my hair thin.  Because it is a long term thing, I would need to lower the dose at best to get any of the hair back.  That is kind of hard.  I’ve never really been overly concerned with my looks, but sometimes having way thin hair is difficult.

But the methotrexate isn’t doing it all.  So in January of this year we added in the biologics. I’m also getting Enbrel shots in the tummy once a week.  This pushes the immune system buggies even further back… so now I worry about touching doors in public places and cups of pop and the buttons in the elevator.  I desperately try not to get completely nutsy over it and become a total germ-a-phobe but some times it isn’t easy.

But right now, because of the ‘fixing my booboo wrist again’ surgery and the fact that I had to stop all my RA meds for three weeks, I’m trying to stay positive about the current med mix fixing it again.  My last RA appointment I had lost ground that I worked so hard to gain.  Now it may mean that I have to change meds again and I’m scared.  Each change means a little stronger and a little worse immune system.

But RA doesn’t define me.  I have RA, I am not RA.

I have started to slow down a little and this is so not a bad thing.  I have started writing again for me and less for meeting deadlines.  This is good.  It means re-connecting with my dreams.

I have been spending more time with my family and less time spending too much time at work.  Again, not a bad thing.

I have completed two half marathons to prove to myself that I can.  I walk and take pictures every weekend with my bear and I spend time just being with my kids.

I understand what it means when my kids have a chronic condition and I don’t stop them from going to the doctor when I know they need to… and I know they need to.  RA has made me their biggest advocate, even more than I was before.  RA has changed my outlook on so many things.

I have RA, It doesn’t have me.

RA doesn’t have to have any of us, it can affect your life but it doesn’t have to ruin your life.

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