Category Archives: rant

On Finishing Last…

Posted on October 28, 2013 | 12 comments

Okay, so… I’ve been thinking a lot the last day and a half on finishing a race dead ass last.  Not losing.  I didn’t lose.  Losing would have been quitting because it got hard, or not starting because of the rain, or not trying because it’s work.  I didn’t lose.  I ran my race and I finished.  And I’m glad I did.

But, there are things that you miss out if you are in the back of the pack.

In February, I did the Austin Half.  My time was 4:00:39.  Not really anything to brag about other than I finished.  I was hurting like hell and I finished.  Yesterday I did 10 miles in 2:38:57.  And I felt pretty damn good by the time I finished.

Except…

I learned that, when you’re last, you really don’t seem to count.

The people taking pictures… get great pictures of the HUGE herd of people crossing the starting line… coming around mile 9 or 10 or 12… or across the first street bridge or whatever.  They disappear after the huge herd passes.  I got my picture taken I think three times yesterday… Once at the start, once rounding the 9.75 mile mark and once crossing the finish line.   And that guy really didn’t want to still be there, you could tell.

The people cheering leave.  If you aren’t in the herd, you really don’t get cheered so much except sometimes by the people at the water stops.

The water stops dry up and blow away.  In the half, right were I NEEDED gatoraid and right where I NEEDED water, the tables were there, there were empty cups blowing around.  There was no water.  Yesterday, as we were finishing the last two miles, they were pulling the tables and the water buffalos.  Poof… no water for the stragglers.  The people not elite… the people not fast enough to be in with the in crowd… they probably don’t need water by mile 8-9-10-11-whatever anyway.

I’m not elite.  I don’t have a bicycle riding with me to make sure I make my time and get to the finish line in the first handful of runners.  I’m not even really middle of the pack.  Yesterday, we had the medic buggy pacing us about 7 feet behind my heels.  Okay, it may have only felt to me like they were vultures circling the feast, but, you know what, I had THREE hours to finish.  I guess technically I had until 10:00 am to finish by what I was told…   I finished in under 16 minute miles.  I finished with a good FIFTEEN minutes to spare and THAT was after they delayed the start 15 minutes.  I might not ever be a good runner, but it really is demoralizing to realize that your ass is what is holding up EVERYONE from going out and having their fun.

I paid my money.  I count.

For all of those even planners out there planning races…

Leave the water until AFTER the last runners pass.  It’s not that many extra minutes to your day.

Don’t park your porta-potty truck on the course even if you have to wait for us to pass and it takes you an extra twenty minutes on your day.  Going around you truck is a pain in the ass and tacky.

If you are the people scraping up the bodies that don’t make it, If I happen to still be up and running (or walking or crawling for that matter) BACK OFF.  You are in a buggy.  Staying 20 feet back or 30 feet back… or however far back it ends up being that I don’t have to hear you discussing your lunch plans that I’m ruining by being one of the last 10 people to finish.

I may not matter to you, but this matters to me.  I matters just as much to me, hell, maybe it matters MORE to me, as it does to mister first place finisher.

And if you are taking pictures, I buy your stupid pictures.  Usually.  If I’m actually… you know… IN any of them.  Want to make a buck (or a hundred bucks)… maybe I count too.  Probably not… but maybe.

okay… I’ll quit venting (and hope like hell I can get to sleep soon).

Just… please know… those of us who aren’t in the first half of the pack have feelings.  We spent the same amount of money to be here as everyone else, hell, maybe more.  Have the courtesy to treat us the way that you treated the guy who finished first in a course record.

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Posted in Fitness, Half Marathon, rant

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On Taking Shortcuts

Posted on October 18, 2013

Okay, so, this week I did an interview about real life tips and tricks for living with RA for a magazine.  I also read an article in the Wall Street Journal about the Balloon Ladies that are part and parcel … Continue reading →

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A Rant On My Rheumy’s Nurse

Posted on September 26, 2013 | 2 comments

Okay, so… I don’t CALL the doctor’s office very often. I usually just suck it up. I figure I have RA, I may as well accept the fact that I have RA and live with it. Usually, it works out pretty well for me.

I was told at my last infusion that, if I don’t see significant improvement over the following couple weeks, call them. I was told that, if I see anything weirdly different, call them.

So… I noticed stuff and I called them.
MY BAD…

I called and let them know that my feet and hands are still kind of floofy even 2 plus weeks after infusion. I called and let them know that my hands tingle and feel like they are falling asleep. I looked it up on line and was told that I should let them know stuff like that. So I did.

Advice?

Wear carpal tunnel braces on both hands all the time. If it doesn’t help, call them back.

Really?

Okay…
Because I call so often when something is wrong. The last time was two years ago when I got bursitis in my shoulder. I know they get calls all the time because people want to be fixed their way right away. I don’t call. Ever. Unless there is something that seriously needs to be discussed. Labs… tests… something… and then it is almost always returning the call.
I called because I was told to keep her apprised.

And because my hands have felt tingly for three days and I’m having some interesting weirdness.
I guess I will go strap on the two 2X4s and try to drive for a while and see if that takes care of the weirdness. Or maybe not. Since I know it isn’t carpal tunnel (THAT is only a few fingers, not all of both hands) and since Crystal isn’t ABOUT to ask questions or talk to me about anything, I guess I will wait until my next infusion appointment and talk it over with the doctor. That way I don’t actually have to play nice with the nurse and I can talk through what is going on, not leave a voice mail and allow a ditz to interpret.

People didn’t like my Rheumy’s old nurse. He had a very interesting sense of humor (one that irritated a lot of people based on things I read on line), but I was from the part of the country where he was from, too, so I got the humor most of the time. He would have called me back before he helped the Dr make a decision and talked to me about what was going on. He would have asked relevant questions and not made assumptions. I miss him.

Crystal is pleasant enough. Her sense of humor won’t piss anyone off. She has none. At all. All business all the time. It’s her style, and I guess it works for her. I would rather have a little more personable, but that’s just me. I understand that she is the gate keeper and she does a very good job at gate keeping. If you can sit through the 10 minute message before the beep (if this is for refills do this, if it is for records do this… or maybe that, if it is an emergency call 911… this recording will be listened to ever 2 hours and I will get back to you when I can… beep) you can leave some kind of message and hope you make it before you get cut off. I guess whatever you can manage to cram into the gap is sufficient to make it through the gate. Or not. I know know.

So I sit back and wait. I don’t guess too much horrible can happen in 10 days. Obviously not anything worth noting, anyway.

Tomorrow morning… 3 mile run then off to the state fair.

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Miss Popularity

Posted on September 1, 2013

***** Rant Alert ***** Rant Alert ***** Rant Alert ***** Rant Alert ***** Rant Alert So… I have a Facebook account. I also have a few pages that I started. None of them are incredibly HOLY COW LOOK HOW POPULAR. There are people … Continue reading →

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On Bedside Manner

Posted on June 10, 2013 | 8 comments

I’ve been struggling with the bedside manner of doctors and their assistants for the last few days.  I’m not sure if that class isn’t required in medical school (you know the class, your patients are humans, they have feelings and you might want to remove your foot from your mouth BEFORE you speak and make everything worse) but I know there are a whole bunch of people who obviously flunked it.

I have a shiny new ENT.  I needed the ENT because without his approval that I don’t have Staph any longer and that it wasn’t MRSA and I’m good before I could get the Orencia infusion I was scheduled for last Tuesday.  I went.  I listened.  I answered all the questions honestly (I think that was my first mistake).  Dr looked me over and promptly told me that my face is deformed and that makes it defective.

Really?

They taught you that in medical school.  Tell your patients that they are deformed?  My new theme song is Hunchback’s Outcast.  Actually… it pretty much was before that… I’ve come to embrace my freakdom and realize that sometimes being an outcast is a really good thing.  It means I UNDERSTAND… but I digress (go figure).

So… one doctor told me I was deformed and defective.  Fail

Called my Rheumy office THREE TIMES to make sure they got the ENT’s report so I could get in to get my infusion just one week late (Like the Rheumy promised when I left without it LAST week).  The PA finally actually CHECKED the fax machine… Friday… oh wow, it’s here.  Sorry… grrrrr… well, you won’t be worked in this coming Tuesday, we are already double booked, and next week doesn’t look too promising either and we already cancelled your next two appointments because you didn’t get your last infusion on time. Sorry.  I will talk to the doctor and find out when we will be able to get around to working you back into the rotation.

It would maybe have come off better if she had SOUNDED like she gave two shits about me getting back in or the fact that the antibiotics the ENT gave me kicked me into the mother of all flairs.

The “gee, sucks to be you” tone sent me into a good thirty minutes of crying in the car (sitting in the parking lot of the boob squisher’s where I made the call to the Rheumy.  I know they have to double book the lady who does infusions.  I knew I was taking my chances of getting in anyway.  But the “I really don’t give a shit” tone just sent me over the edge.  It wasn’t MY fault I didn’t get my infusion. I was there, I was healed from the Staph, I was more than willing to get my infusion.  YOU people sent me away.  I did what I was told.  I’m DOING what I was told. Curb the bitchy attitude and learn that you are the PA not the principle at a Catholic School reprimanding me for being a bad person.

Okay, I understand that I frequently take things badly and that I react to the way things are said.  BUT I know that I’m not the only one.  AND I know that you CAN learn how your words sound.  I know that these people have a LOT of education.  I just wish that people skills were a little higher on the list of must have classes even if your dossier does say that you can part the red sea and turn water into whine (yeah… whine, not wine… bite me… it’s my homonym!).

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But it’s just arthritis… Yeah… Right…

Posted on May 15, 2013 | 14 comments

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

Posted on May 4, 2013

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 →

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A Reason To Hate

Posted on April 16, 2013 | 1 comment

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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Venting…

Posted on December 10, 2012 | Leave a comment

I’m tired. I’m frustrated. I’m stressed (Merry Christmas… ho ho ho). I’m aching…

Needless to say I’m not taking life in general overly well right at the moment.

Add to this the fact that I have this really cool new feature (dark tan pigmented spots that don’t itch, that don’t hurt, that aren’t raised, that really probably are nothing but which I’m totally not happy being told I should ignore because this… like the knuckle bumps and the fact that for a few weeks I could barely bear weight on my toes six months before I was diagnosed… is probably just me being silly and over-reactive) .

So, I’m venting.  It’s my party and I will bitch if I want to.

People who downplay a compromised immune system have started to totally irritate me.  I’m sick of hearing how someone with a compromised immune system is getting sick for some convoluted reasoning.  When you have deliberately (or by the misfortune of your condition) destroyed your immune system in an effort to save your own life, you get sick.  Granted some of us aren’t allowed to get sick and if we do we are obviously not as sick as other people, but that is more a genetic defect of being female rather than any other situation.

I know that if I walk passed a germ, bacteria, virus, fungus, whatever… it is going to jump out and get me.  This is less my being histrionic, more being realistic.  I don’t think I have malaria because I feel crappy a couple days after forgetting to use hand sanitizer and sanitizing wipes after I take the pager from the guy who has three kids at home all of whom have been to the doctor for upper respiratory infections.  But if I start to cough and sniffle after a couple days, I smack my forehead with my hand for being an idiot.

I’ve been lucky.  I haven’t been hospitalized yet for it.  It will happen eventually. I’m a little scattered sometimes.  I forget I’m not a normal person who can push elevator buttons all willy nilly and not have to hurry to the bathroom and immediately upon getting off the elevator and disinfect my hands.  I try to remember I’m a freak.  Sometimes I forget.

If you don’t have to worry about stuff like this, be grateful and go on.  Don’t dump because some of us can’t.

I can’t just not look at dishes and assume they are clean.  I can’t shrug off egg or chocolate or ketchup or whatever on a plate or glass or spoon.   I would love to be able to.  I can’t.

I also can’t spend all my time thinking about all the years that I have spent waiting tables and knowing that people pick glasses and cups up with bare hands by the rims.  These people aren’t as careful (paranoid) about washing their hands as I am.  Silverware ends up on the floor and put back in the bin.  Silverware is picked up by the part that touches food.  The silverware bin gets cleaned once a month.  People don’t use the scoopy thing when they put ice in a cup… they scoop the ice with the cup which means their hands end up in the ice.  Tables don’t get washed off as well as they should.  The “check” ends up in the waitress/waiter’s mouth before it gets put on the table.  Even when silverware comes all wrapped in the cute little napkins, the silverware didn’t wrap itself, it was washed (if it is metal) and came out of the nice hot dishwasher and someone wraps it.  They touched the napkins.  They touched the silverware.

I can’t spend all my time on it.  But there are times when I remember and I dwell on it.

They I FIDO (Forget It Drive On).

But I know it is there.

I know that no matter how careful I am.  No matter how careful my sisters and brothers in the “I’m destroying my immune system in an effort to stay alive” club… you can’t avoid being human.

It would be great if germs were so grossed out by us that they ran in fear when we walk past.  They don’t.

Don’t dump on us because we get sick.  Don’t dump on us because we are a little on the cautious side.  Maybe there is a reason.

Okay, I’ll climb down off of my soapbox now.  I think I will leave it sitting where it is though… I don’t know where my feet have been and I was standing on it… I will probably need to use it again later any way.

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When Someone Else Gets an Autoimmune Disorder

Posted on October 20, 2012

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 … Continue reading →

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