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Humans of New York

Okay, so I come to some things very slowly, but I usually get there. There, this time, is an awesome photography blog.  Humans of New York It’s wonderful!  And it has started me thinking (always a dangerous thing) about how … Continue reading

But it’s just arthritis… Yeah… Right…

The “just arthritis” that people talk about when they impart their wisdom on those of us who have courage enough to admit to having RA (or one of the other ‘flavors’ of autoimmune arthritis) is usually osteoarthritis.

The comments are usually something along the lines of…

If you would just lose weight you would probably feel better
Exercise helps everything
Have you tried Gluten Free
Oh, yeah, I have that too in my left knee.  I hate when it rains.
Oh, my grandma had that, but she was fine if she took a couple aspirin
You’ll be fine.  It might hurt but no one ever died from having a little arthritis.

I’m never really sure how to feel about the comments, because I am an odd person who tries hard to believe that most people are well meaning when they make these kinds of comments.  I try to not think they are being deliberately mean or uncaring.  I try to understand that they probably don’t understand.

What bothers me most are the people who, when you try to explain to them that I’m not just fat and lazy, I’ve been tested for gluten sensitivity (and every freaking other thing under the sun) and I’m actually finished three half marathons since my diagnosis.

I know that, after my half marathons,  my body gets a little ticked at me from the stress I put it through.  My joints swell, and I get what feels almost like the flu for two days.  I know people mean well by telling me what is probably wrong with me (and I completely understand that there are SO many things that can be wrong with me), but I know my body.  And I know my doctor.  And I know my test results.

I have shoes in three different sizes.  So I can be decently comfortable no matter how fluffy my feet joints are.  I have wool socks so I can make my feet warm no matter what the weather…. ones for my regular shoes and ones for my Hobbit Feet shoes.

My fingers hurt… in the joints and in the knuckle bumps (hello… knuckle bumps).

My toes hurt.

My ankles hurt and my knees hurt

Not all the time, but usually bilaterally, and when I flare, they swell to nearly twice their normal size.

I have to take infusions every month.  Infusions don’t do anything for “just arthritis  and I certainly wouldn’t spend $2500 a month for something that wasn’t going to be working at all anyway.  And it does (for which I’m very happy).

My hair is thin (I can hold it in an entire hairstyle with one bobbypin) because I’m on chemo drugs and I will be forever.  Chemo drugs do nothing for osteoarthritis.  When I tried by wean off of my chemo drugs, my body got so pissed at me I had to go back to the old dose and add in some extra meds.

I know that I can’t touch elevator buttons, pop cans from a machine, or doorknobs without thinking.

I have to hum happy birthday twice when I wash my hands after I use the bathroom.

I have to carry Clorox wipes with me.

I have to THINK about whether I can deal with buttons and jeans today or if I need to resort to elastic pants and pull over shirts (usually sweats and a t-shirt).

My primary care physician doesn’t even actually bother with diagnosis any more.  If I call with a problem that I’ve had before (and I’ve had many) she just calls in whatever it is I had last if it worked.  I’ve been her patient for nine years.  My record was three inches thick by the time they went full digital.

I think, though, that the bumps are the scariest.  ”Just Arthritis” doesn’t come with fancy nodules that grow on your knuckles.  I have them.  I don’t yet have enough joint damage that my fingers lock in any one position or that twist and turn back on themselves.  I can still see the hands of my great great great (something like that) aunt that we used to visit who wasn’t as lucky as I am.

I fight every day to maintain where I am and to scratch a few inches back to where I used to be.

It isn’t the worst think that could happen to me.  I understand that.  But it certainly isn’t “JUST” anything, let alone Just Arthritis.

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But You’re Too Young

Have you ever heard this?  From family members?  From doctors?  From well-meaning coworkers?  It doesn’t necessarily have to be about RA (or autoimmune disorders in general) but can really be about just about anything.  In my case it is about … Continue reading

A Reason To Hate

I awake this morning to continued coverage of the Boston Marathon Bombing. As a half marathoner, the thoughts that went through my mind were many.  Fear, sorrow, anger.

As the reality of what was happening set in, my thoughts were with the victims and their families.

But this morning I realize more and more that hate is what seems to be rampant in the hours after.  The Westboro Baptist Church intends to picket the funerals.  People are quick to blame groups of people and I know that there are hate messages flying around seeking vengeance.  Rhetoric runs thick through the online world. It runs thicker through the minds of people who hate.

Words said in anger breed more anger.  I understand the frustration but hate?  The call to arms to target people who have nothing to do with anything.

I understand that everyone has an opinion, but I’m trusting in the people trained to determine who the responsible parties are to, well determine who the responsible parties are.  It’s their job.  I know that there are… like totally way more smarterer people than those people who know way morere about what is really going on.  But hate words cause more hurt.  More violence.  More angst.

If you want to hate, why not find something worthy of your hate?

Me, I think I’m going to pick fig newtons.  I don’t think we should outlaw them or anything.  They just make me gag.  They seem like a good thing for me to hate.

Turn your hearts to the victims.  Turn your hearts to the families.  There is too much hate in this world to add to it.

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On Touching Just One

If not me, then who? If I can touch just one, and that one can touch just one, and on and on and on, then maybe the world can change. Once upon a time, I wanted to change the world. … Continue reading

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Broken Graft

Broken Graft I grew up on a farm. It wasn’t a formal farm. It was a family farm. Even when I was small it had fallen frequently to disrepair. The walls of the barn were even then being pushed out … Continue reading

Backsliding

So, Sunday I finished the half marathon again.  It wasn’t easy.  It hurt.  And my time was way off.  And I realized since then that there is a good reason for that.

I am now just as bad as I was the day I was diagnosed (maybe a little worse).

All of my toes, my ankles and one knee are involved.  The Rheumy said that she would buy into the fact that it was post half marathon swelly squishiness but I only ran on my feet, and my fingers (all joints) and wrists and elbows and shoulders all seem to be involved now, too… and I didn’t run on my hands.

She was going to keep me on what I was on before and add in Plaquinil… but that will really only help if you have a couple of joints that are being difficult, not if you have back-slid to way where you were before.

So, I’m going to be starting (if the insurance approves it) infusions of Orencia in the next couple weeks.  IV drips for 30 minutes every 2 weeks for a month or so then once a month.

I knew my hands have been hurting a lot.  I’ve been toughing it out a lot.  Using a lot of Tiger Balm (like it is hand cream) and taking a few more Aleve than is probably prudent.  I guess there is a good reason.  There is a good chance that my hysterectomy changed my body chemistry enough that the Humir a just gave up and now I have to work through whatever it is that is pissing my body off.

The adventure continues.

I did finish though and I did get the bling.  I’m scared I will never get to do Disney now… and I have to do Disney at least once.

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On the Week of Coming Out

No, not me.  My baby boy.  But, as anyone who doesn’t live their life in a vacuum, the act of coming out as gay doesn’t affect only the person who is actually doing the coming out.  It effects everyone. But how … Continue reading

The Eve of Distruction

Well, technically, the eve of the spring semester for the kids at college, but you know… it all kind of seems like the same thing.

Mondays and Wednesdays are going to be an adventure.  Two different campuses, with work about 33% of the way between the two campuses.  Drop Squirrel Girl at campus 1 at 7, Drop Skinny Butt at the bus stop a mile or so from work, work, make sure Adam gets to the bus stop by 4, hopefully leave work at 4 (pager week this week… I REALLY hope I don’t run late) pick him up on the way up to pick her up then home.

Neither of them is going to have a great Monday/Wednesday either.  He has absolutely no time between classes.  She has ten minutes down time between 8 am and 4:30 pm.  She is going to have to carry her book back pack as well as her camera bag backpack.  It’s going to be a long semester.  BUT I think it is going to be kind of an exciting semester!  I’m looking forward to what the semester brings.  Wonderful new pictures, boosted self confidence for them both.  I think it will be a good spring.

Something tells me that supper time twice a week is going to be kind of late and very  ”inhale everything that isn’t nailed down”.

It’s my Self-pity-party and I’ll whine if I want to

Am I REALLY that weird?

And before my kids (on the off chance that either of them actually read this) have a chance to chime in, yeah, I realize that I’m really kind of that weird in MOST ways… but… am I REALLY that out of the norm?

I don’t think I am because I’ve talked to people at work who are “like me” and they are a lot like me.

I have RA.  Duh…
I hurt (big shock there).  Some days more than others.  Some days really nearly approach what I can remember (from half a decade ago… when normal might have been).  Some days it really is like someone poured crushed glass into my joints.  Most days I ache but I can take enough of the edge off to not let it rule my life.

Thank heavens that I’m not disabled… at least not yet.

I have days when it depresses the crap out of me.  Again… duh…

But as a general rule, I figure dwelling on the why me… being debbie downer… why waist what energy I do have on being whiny about it?  They say it takes fewer muscles to smile than frown.  Fewer muscles, less work.  Logic dictates that means that if I smile (even if I don’t FEEL like smiling) it is less work.

Shutting up is less work than bitching.

If I can lose myself in music (irrespective of what the music is that I chose) then I’m losing myself and not getting upset.

I understand that there are times when you really just need to dump on people who understand.  Hell, sometimes you just need to dump, it doesn’t matter if it is on someone who understands or not…  but I just don’t understand how can anyone spend so much time dwelling on the worst part of their lives?

Maybe I am that weird.  I know that when I’m in the middle of a flair, I TOTALLY don’t feel like being mary sunshine.  But I keep remembering… Whether you think you can or you think you can’t, you are usually right