Category Archives: rant

People are Just People

People are People So, I’ve pretty much had it with people dumping on people because there is something, just a little something, that they don’t like. Hair color, nationality, sexual orientation, gender, whatever… People rag on other people for lots of reasons. None of them are really good reasons.
I don’t know if I’m getting old, or I’m just flat out weird, or maybe a combination of a lot of things, but (as I’ve been watching out the window of the bus navigating the highways and byways of Ecuador) I realize that that People are People.
The people you pass on the street? They may not be JUST like you, but they really are just like you. They have their own problems. They have their own opportunities. They hurt, they get angry, they get happy, they love.
Life is so full of ire and anger and stress, why is it that people find it necessary to spend so much energy and effort on judging and hurting other people.
Cliche? yeah… I know.. but… seriously… why can’t we all just get along?
I watch the people… they are going to work, carrying their children, waitng in line at the bank, packed like sardines (more cliche? full of it today, aren’t I?) in city busses.
What is it about people that compels them to judge, to hate, to malign? Energy would be much better spent focussng on making yourself less stressed and more content rather than expending it on hate against others…

okay… soap box over.. you can go back to your regularly scheulded programming.

Methotrexate… a rant…

Okay, so I gave you fair warning.  This is a rant.  I try not to let it eat at me and fester, but there are just some things that are so irritating that I have to let lose.  THIS is one of them.

Methotrexate has always been kind of a sore spot with me (not to… you know… make bad jokes about stomach shots and stuff).  For a while I had a hard time finding a store that had sufficient available Methotrexate (liquid) to fill my prescription.  It isn’t a profitable drug.  Passe.  So the makers don’t always manufacture sufficient.  Or there is a mass recall (this has happened more than makes me comfortable).  Add to that, my DOCTORS have suggested that I would be better off using the “with preservative” kind and have written my scripts as such.

Most pharmacies don’t have a problem filling what is written.  Most… If they have it.  I’ve had trouble with one chain in more than one city… in more than one state… in more than one TIME zone… when it comes to this drug.

In Texas it was ‘suggested” (okay… they told me flat out) that they don’t carry my medication as it is written.  I need to go BACK to my doctor and MAKE her write my script either as pills (which make me really REALLY sick) or as the injectables that they DO carry because the company they happen to chose to use doesn’t carry the with preservative vials.  So… I said that they wouldn’t be my pharmacy, I trust my doctor and it is HER job to write what she wants me to take… not theirs to prescribe what they want to sell me.

Now I find myself insured with a company and the pharmacy that I HAVE to use for maintenance drugs (which, despite the fact that I take MTX every week and have for three or four years now, apparently this isn’t… ) is… yep yep yep… the one that doesn’t like my MTX script.

Skip forward to yesterday.

Dr called in my refill.  One month supply, 4 shiny little vials (except the doctor thinks she’s calling in two moth supply… blood test to blood test) came from the pharmacy.  Bear and I got into a lengthy text message conversation about the meds.  He said the bottles didn’t look like what I’ve been taking.  They didn’t.  They say preservative free on the vials, so I got a one month supply, half of which I would be throwing out, and the vials are bigger and a different shape than what I use.  OH… and they are twice the dose I use.  The ones I take are 25mg/ml the ones they filled are 50mg/ml.

Now, I’m not a pharmacist or anything, but I’m good enough at math (it was one of the dual minors on my undergrad degree) to know that 50 is kind of a bigger number than 25.

I called the pharmacy.  They don’t carry my script and TECHNICALLY the doctor didn’t say it HAD to be with preservative.  They GUESS (they guess???) they can TRY to get what I take to fill my script NEXT month, MAYBE, but only if the doctor SPECIFICALLY says they HAVE to.  Otherwise they will give me what they like to sell not what I take.

What do I do with the drugs I won’t take?

Toss them they guess, they can’t do anything with them.  WE left the store.

The guy on the phone laughed at me.  He thought it was hilarious that I was calling him about this.

I called the insurance company.  The part of the company that handles the prescriptions.  The part of the INSURANCE company DIRECTLY AFFILIATED with the pharmacy (which is why I HAVE to use them for maintenance drugs) because I was concerned with being laughed at and being told that there is NOTHING they can do until they get a different prescription.

And I had questions about why (maybe the doctor changed what dose she wants me to take even though I’ve been mostly controlled and even though when I was there she verified my dosage) it was 50mg rather than 25mg.

The insurance company showed that 25mg had been billed in Feb and (GHASP) yeseterday.  25… 25… yeah… the right dose.

I was also informed that MTX is apparently not considered a maintenance drug, so I can get THAT filled anywhere I like.  So I’m going back to where I can get what I take without argument or stress.

I don’t understand why they think it is okay to mess up my meds.  And I know it isn’t personal.  They mess up meds for lots of people or it wouldn’t be such a joke.

My MTX… taking twice the strength might make me feel crappier than usual for a day, but it probably wouldn’t do any real lasting damage.  But other people take other meds.  They RELY on pharmacies filling the scripts RIGHT.  They might not realize the dose is doubled.  What then?  Not everyone has a George Bailey looking out for them.  Not everyone triple checks the labels every time (okay, MOST times).  What happens with them.

he he he… ooopsy?

shake my head… you are dealing with LIVES… it’s really not that funny.

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Five weeks

Sitting at the glass table. No desk. Beggers can’t be choosers even if the overpriced loft isn’t actually nearly as good as a similarly priced apartment. Yay me. The fireplace doesn’t work. But it is a lovely place to stick … Continue reading

On Finishing Last…

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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On Taking Shortcuts

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

A Rant On My Rheumy’s Nurse

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

***** 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

On Bedside Manner

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!).

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