My RA Story…

I was talking to my mom this week and she asked me how it started.  I realized that I probably haven’t ever really written down my story… so (as I sit here with the rain tapping on my window and my coffee cooling at my side) I figured it was probably time to tell MY story, too…I have been ‘talking’ to someone on line who I think might be walking my path… and maybe this will help.

I grew up in a family where you sucked it up and made do no matter how crappy you felt.  No one believed me when I had a fever of 103.  No one believed me when I had appendicitis for 2 weeks… they had to take out my 4 inch appendix before anyone bothered to believe me.  You didn’t go to the doctor, you didn’t complain (it didn’t do any good anyway).

It all REALLY REALLY started in 1997 when I broke my arm roller blading.  I broke it VERY badly (radius was compound, ulna was greenstick).  Morphine is a joke.  It healed badly the first time so they rebroke it and it didn’t heal so great after that.  I’ve gotten used to it aching.

In 2005 I went to a ‘hand specialist’ (currently using that term rather loosely) who had me get an MRI and x-rays and figured out that the reason I couldn’t use my arm normally… my left hand turned the way it was supposed to, right hand had about 50% the range of motion it is supposed to have… so he ‘fixed’ it (now I have 60% range of motion… OH BOY… because he decided to only do half the operation he signed me up for… ).  If I never hear the phrase “If you were 80 and had this <whatever> we would let it go but you are young and we can give you so much more” it will be too soon… I’m so tired of people trying to fix what is so obviously messed up only to make it worse.

2007 I decided I TOTALLY needed to start getting healthier and loosing weight (maybe that was my mistake… ) .  I started going to the gym with a couple girls from my department (they soon quit going… I didn’t quit going).  I started to gain stamina and loose weight and feel better.  I started thinking that I could start running races.  So I started going out in the morning and first walking the neighborhood then jogging the neighborhood.  I was starting to feel like I was making progress.

I would have days when my wrist/fingers/elbow/shoulder/knees/ankles/toes… pick a joint, at some point they all gave me issues just not all at once… would hurt.  Sometimes they would hurt an 8.5 (and this is from someone who hurt so bad morphine didn’t cut the pain when I broke my arm… and again when I had it fixed).

Given how I grew up (and the fact that bear grew up the same way and was always reinforcing the fact that it was just over use or over work or being out of shape… now that I was getting IN shape…that was causing me pain and I just needed to rest) it really isn’t surprising that I chalked everything up to “it’s just me” and pushing on.

Even in 2008 when we went to Disney World and by the middle of the afternoon it was all I could do to bear weight on the fronts of my feet and the fact that my toe joints were swollen and painful… so painful that I hobbled to the hotel room and was nearly crying because it hurt so much even in bare feet to walk across the parking lot and the grass.I figured it was just me.  It was a very huge bone of contention because the very expensive trip was having a damper put on it because I was being such a woose… I ended up most of the time spending half a day just sucking up the pain and not letting on.  It was more productive that way.  AND… I TOTALLY love Disney and refused to miss a minute of the trip.  My dream then and still now is to participate in either the Disney Half Marathon or the Princess Half Marathon… the entry fee is kind of steep, but a dream is a dream and if you can’t dream about Disney what can you dream about.

I bought a great pair of running shoes in the spring of 2008 that by the summer of 2008 I could not wear because they squeezed by toes so bad that I couldn’t walk in them.  I convinced myself that even though I was loosing weight the reason my shoes didn’t fit any more because I gained weight in my feet.

By November of 2009 there wasn’t any talking myself out of the fact that there was something just not right.  I went through periods of not being able to bear any weight on my right knee because it hurt SO bad and it was so swelled up… not being able to raise my arm over my head.  Not being able to do much of anything some days… but other days were pretty much status quo (the aches snuck up on me and really were something that I just got used to.  What caused me to finally go… OH… Uh… um… yeah… time to see someone?  A bump (RA nodule it turned out) on my middle finger, middle knuckle of my right hand.

I did my research (I’m a geek, it is what I do) on what it might be… I narrowed it down to either a cyst (which could be drained and that would make me happy) or RA.

I went to my Dr and she wiggled and poked and sent me for blood work.

Three days later I got a phone call at work.  “Your rheumatoid factor indicates that you have RA.  You need to see a Rheumatologist.  Here are some names we recommend”

Oh.  This was NOT in my plans.  I called home and cried.

Rheumatoid Arthritis was the hands that I remember visiting (I don’t remember the person other than my great aunt was her friend) when I was little.  The hands that had fingers pointing it all the wrong directions and that had bumps all over them… the ones that didn’t bend right or didn’t look right… it was pain and disability and fear.

Depression sucks really bad and not being able to get in to a doctor for a few weeks is even worse.

Then I met Dr Stephanie Booth and Sean her nurse.

I found out that it is not a death sentence.  I was pretty bad and I had it for quite a while.  I was started on methotrexate (after a course of prednisone that took down a good bit of swelling and pain for a while) pills.  They made me feel dizzy and like I was going to throw up but I went through them.  I hated Fridays because for a year I was SICK every Friday from the meds that were designed to make me better.  And it helped some.  That and Predinsone got me through my first half marathon last February.

6 months ago we started on MTX shots.  They helped a little more but not enough.  The DID mean that I didn’t have to feel like puking or being dizzy any more so it isn’t so bad to get a weekly shot in the tummy.  About the same time we realized that I have Sjögren’s Syndrome and it is causing me problems with my eyes (add Restasis to my meds).  Oh boy!

Oh… and now my fingers and toes are almost always freezing.  So much so that I often have to take a hot bath just to make them warm enough to get me by.  It is reassuring (I think) that it isn’t my thyroid but only something that sometimes goes along with RA.  Oh boy… oh… and will probably be forever… oh boy… eeesh.

Skip forward to November (I’m starting to not like Novembers) and we figured out that I’m not being helped enough with all that I am doing… and I would need to start something else to beat RA into some kind of submission… Enbrel… don’t you just love the cures that sound worse than the disease?  Eesh.

So here I am… feeling better after my first enbrel shot (still doing MTX shots… so 2 a week in the tummy) and hoping against all odds that my body doesn’t figure out what the cool new meds are and I don’t get the swelly toes back after the next dose.  I do get a headache and I have a hunch that, since I tend towards headaches, I will keep getting them from the shots.  The new shots burn going in (partly because they have to be kept cold).

I’ve decided that, part of the reason I was diagnosed with RA when I was was so I would be able to understand to any degree what Squirrel girl is going through with Epilepsy and now with whatever it is she is dealing with that is making her sugar higher than it is supposed to be but that isn’t currently diagnosable as diabetes.  Forever conditions are forever conditions.

Maybe it is something I’m just supposed to understand so I can really understand…

Whatever it is, it is part of my path… part of my Red Road… part of the me that I am.

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3 responses to “My RA Story…

  1. Are you using a syringe, or a pen for your enbrel?
    Take it out of the refrigerator 20-30 minutes before injecting (it says that in the directions), and it won’t sting as much. Also, the pen stings more than the syringe. With the syringe, you can inject very slowly. If it ever starts to sting, I pause until there’s no discomfort, then push the plunger very slowly. The gradual injection seems to really make a difference.
    HTH

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    • I’m using syringe and Sean told me that it will sting a little but not much if it is 20 min out on the counter… DO NOT use a hair dryer (really?) to warm it…
      Sean yelled at me for reading the directions before I went in to learn how to do the injection… especially the part about ‘if you get blood in the syringe’… something about what surgeons REALLY do in that situation and what would happen if you disinfect the area of the shot and you have to pull it out of YOU and put it back into YOU… just saying… you should always (wink wink nod nod) follow exactly what the directions say but it IS $600 a week and it is contaminating your body with stuff that came out of… your body.
      It is one of the reason I really like Sean.

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  2. Sean sounds like a good help 🙂
    I’ve wondered why it would matter if a needle that was in me went back into me. Sounds like it really doesn’t matter.
    The other thing I wonder about is pulling back on the syringe at all. It’s not like the auto-injector pens have that feature.
    Anyhow, I find that injecting very slowly reduces/eliminates the burn as the med goes in. I hope the future injections continue to help you.

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