Tag Archives: health

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Sunday Morning Contemplation

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Sitting at my kitchen table, coffee in hand, spending some time spending time. Dog Channel is playing… the ocean through the sea grass… sunrise… the dogs could honestly care less about Dog TV, I keep it for me. And it … Continue reading

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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Because It Makes A Difference

So, I’m sitting here having a text message conversation with someone who I used to work with. She is 4 months down the “just diagnosed” trail. Prednisone for 4 months, MTX for 4 months. She just switched to my Rheumy … Continue reading

Orencia Infusion Week

Started out to the gym this morning. Turns out they are only open 24×5 and open at 8 on the weekends.  So… a 14 mile round trip wasted at 5 am.  Sigh.

Got home and started working on stuff at home… crochet projects I want to get done, have to get done, enjoy working on… writing… answering pages on pager patrol… I realized that my knuckles ache this morning.  I also realized that they should have ached a few days ago if the last few months were anything to go by, so I’m thinking that I’m continuing to improve.

So, right now, I smell of Tiger Balm and thinking that I’m really glad that Tuesday is my infusion day.  I’m waiting until 10:30 to take my Delsym so I can hit the gym when I take my little girl to work and get my tummy shot when I get home.  I’m dwelling on trying to get better… because I need to get better for me.

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!).

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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

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.

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

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So, I sit here, listening to the wind blow the cold front through. It’s going to get chilly tonight. I’m looking forward to that with mixed feelings. On the upside, it was 84 degrees when I left work today… it … Continue reading

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Cold Front Friday

So… it was 91 degrees Fahrenheit yesterday. That’s about 33 Celsius if anyone  reads this who lives in a place where that is more common (as in ANYWHERE but in the US… ). About 9 last night a cold front went through.  Windy and … Continue reading