When Someone Else Gets an Autoimmune Disorder

Irony is amazing isn’t it?  I mean, the very people who blow you off when you casually mention the fact that you have an autoimmune disorder that will affect the rest of your life are sometimes the very people who melt down and totally lose control of their intellect when it is a different person (not even THEM… not even anyone in their family) who ends up with a similar condition.

I’ve been struggling the last couple days with trying to wrap my head around this kind of irony….

We have a diagnosis (that the doctors don’t want to actually pin a DIAGNOSIS to right now… they want to wait and treat the symptoms rather than poisoning my son with prednisone and methotrexate and biologics… they said that if they do this when he’s 20 without worse things going on in his body he will have way too much trouble getting health and life insurance in the future and there is a good chance that treating the symptoms will help him feel better) of sjogrens for my son.  (how is that for a run on sentence or parenthetical paragraph)

It isn’t like I’m not beating myself up enough for that diagnosis already.  I mean… my brother has juvenile diabetes <autoimmune>… I’ve got great aunts and great great aunts who had rheumatoid arthritis… I have RA… I figure it is my fault that he’s looking at this situation.

YES, I know it is illogical.  YES I know it is pointless.  Yes, I know it is a mom thing.  And Yes, I know I will keep doing it periodically.  It’s what I do.

This week I had what could loosely be  called a conversation with someone who, when they were told I had RA and I had 26 involved joints and would be starting on chemo therapy drugs almost immediately and would be routinely poisoning myself for the rest of my life casually (sorry… callously was the first thing that sprang into my brain… but I fight the urge most of the time) commented that other people in the world have it way worse than I do, I should (not quotes but the sentiment was there) suck it up and keep my ass at work so I could keep being a productive member of society and not a drain on the system and besides it isn’t that bad, it is only arthritis.  Same person a couple years later finds out that my son has the beginnings of an autoimmune disorder and I’m dressed down, chastised, berated.

“Do you realize what it means to have an autoimmune disorder?!?!?!?!”

Do I realize?  Really?  Really really?

No, I totally don’t.  I’m incredibly stupid, I don’t care about my children.  Now go away while I eat my bon bons and drink up all of the hidden stores of Arizona Ice Tea.

Chuch Fou Yarly.  Yes, I do understand.  I completely and TOTALLY understand.  I try to figure out how to not offend people who hand me the pager at work and I leap for the Clorox wipes to try to clean it the best I can.  I get the stupidest looks in the world when I stand at the sink in public bathrooms humming two choruses of happy birthday while I scrub my hands.  I don’t shun hugs from people who obviously have a cold but my brain clicks into overdrive at what could happen.  I live in mortal fear of MOSQUITOES because some 90 year old lady ten miles away died from West Nile.  I line up when the store opens the first day of flu shots and I offered to get an annual pneumonia shot.  I carry a bottle of hand sanitizer in my fanny pack.      I don’t freak when we are out to eat but it does cross my mind who set the table… how did they touch the silverware.. even if they only touched the handles, they touched the handles and the person washing dishes touched the handles and the I’ve waited tables, I KNOW what the gray silverware trays look like in the bottom (what if mine was in the bottom) and how did whoever put my coffee cup on the table touch the coffee cup and should I worry…

Yeah, I totally do understand.  I understood LONG before you did.

I consciously choose to live my life.  I choose to LIVE my life.

I could turn into that woman that I waited on when I was waiting tables in PA.  The one who insisted that my hands always smell of bleach when I waited their table.  The one who insisted that I only touch the bottom of the cup handle (at the place where it touched the side of the cup) when I poured her coffee (not the saucer, not the handle any other way… and we were INSTRUCTED that we would be fired if we were caught pouring coffee into a cup that was sitting on the table… so I HAD to touch the cup).  The one who always inspected every inch of her silverware.  Now I wonder at what the reason was she was like that… and I think that it was a small price to pay to have always to be bleaching my hands.

I could.  But I haven’t yet.

I’m not stupid.  I know what goes on in the kitchens of even the better restaurants.  I know that other girls always saw her come in, and if she were seated at their table they would lick the silverware and polish it so it shown… they ran their fingers down the inside of the cup they knew would be hers… and after they bleached their hands they went and ran them through the dirty water in the soaking pans… after all, she never tipped much and she was a pain.

I choose to coach very young kids in soccer even though I know most of them are probably in day care and are with kids who are germy and you know what, I hug them when they want a hug.  And most of them want hugged.

I usually do wipe off the lid of the pop can.  But I buy cups of lemonade from kids along the street in our neighborhood if I see them.

And I put drops that burn in my eyes.  And I take drugs that make me foggy for a couple days and I suck it up and get shots in my stomach once every week and twice every other week.  And I wear my buff because it is my fashion statement.

I get my ass out of bed even on days when I SO don’t want to get my ass out of be and I take my kids to school (neither of them are seizure free long enough to LEGALLY be allowed to drive yet) and I go to work because I have a job that lets me have insurance to pay for the drugs that I’m on and that the rest of the family is on.  I drag their asses to the doctor when they would rather not just so I know we are ahead of whatever might be going on in their bodies.  I do what I can do.

I wear my headsets to drown out the talking in my office on chemo brain days and enjoy the audio books or the music and git-er-done.

And I walk the half marathon while I still can… and I fight back happy tears when my kid tells me I’m the strongest person they know.

I’m lucky.  I’m not as bad off as a lot of people with RA even in the US.  There are a lot of people who can’t do what I can still do.

And I feel guilty because I do know what it means to have an autoimmune disease.  I’m glad that Adam won’t lose his hair any time real soon and that he won’t lose the pictures he’s only so recently found and that he can have a beer when he turns 21 and that he can have kids… but yeah… I know that the person who asked the question will never ever ever “get” it… but I do understand… and I wish with all of my heart that they understood nearly as much.


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