The Next Adventure Begins

Posted on April 6, 2014 | 2 comments

Sitting in the living room family room den thing where I have been hanging out an inordinate amount the last week.  Fringe is on TV.  Showered and dressed… hobbit feet propped up on the coffee table.  A couple hours from now I head to the airport.  Electronics are all charging, just so I’m covered for the next 12 hours.  Packing is all done.

Ecuador, here I come.

Not sure why this trip feels so huge to me.  I mean, I know that it’s my first international flight alone, even though I won’t be alone alone… we are traveling as a herd.

The altitude scares me.  Not like Everest would (even base camp) but I know that I’m looking at a headache for the next few days and that won’t be fabulous.  I’m all packed with as many medications as I can think to take.  I know I will miss something.  It is inevitable.  I wonder if the change in altitude will piss off the RA.  I know exercise, for the next few days at the very least, is out.  But will there be any interesting side effects to the ouchies or swellies?  I guess time will tell.

WHY is my iPad update taking so long?  None of the other updates took this long… sigh…

The remnants of last night’s Sheetz coffee is feeling very friendly this morning.  I wonder what Ecuadorian coffee tastes like.  I wonder what interesting food will present itself.

I wish I remembered more from Pitt Spanish.

I wonder if I will “get” to see a volcano erupt.  2 weeks… and it has been move and more active since February… I’m betting I might get so see something.

I want to explore.  But I doubt I will have much time for exploring.

I’m looking forward to being actively involved in SIT.  I’m not sure what to expect or to what degree I will be engaged.  It is a functional thing.  But I will be a part of the team… the incoming team… but also the bigger Quito team and the bigger Sherwin team.  I’m nervous but I’m excited.

The adventure begins… wonder what the next two weeks will hold.

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Posted in Beginnings

Methotrexate… a rant…

Posted on April 5, 2014 | 4 comments

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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Posted in medicine, rant

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Uncertainty

Posted on April 4, 2014 | Leave a comment

Let me start by saying that I hate paying $6 every time I have to go for an Orencia infusion. I know it is a little thing, but parking, in general, irritates me a lot. I also hate knowing that they bill almost 10,000 a month for my office call, chair rental, infusion center rental, soda crackers and cranberry juice. I’m REALLY counting on what the insurance company saying being true… that after I hit $3500 out of pocket, I won’t have to pay any more the rest of the year. Except for prescriptions, those come out of a different company and a different bucket (and SO don’t get me started there).
I don’t like knowing that the Intercontinental hotel is DIRECTLY attached to my clinic. That tells me that it is probably billing way more than is absolutely necessary.
All that said, I messaged my Dr through the online thing, and she called me back to talk. She asked that I call her, asked that I just stop in her office, asked that I call her to follow up and asked again today that I call her on Monday. This is a doctor that has crappy ratings in the rate your doctor thingys.
The place is expensive, but… She listens… I miss Dr Booth incredibly. I love her sense of humor and the fact that she always remembers everything about everyone in my family. But Dr Gota cares. She might not care the way other doctors show it… or the way some patients think she should, but she’s very matter of fact and to the point and she follows up. She uses the computer for her records and takes copious notes, but when it comes time to be poking and prodding, she does that just fine.
I don’t always like the look on her face. I certainly don’t always like being sent for x-rays and blood work. But we have ruled out that anything is broken and we know that I waited long enough for my diagnosis that I already have significant wearing in the joints. But we know. And knowing is half the battle.
I’m looking at being able, in the next couple months, to change to a more local (and a not pay to park) rheumy. But I’m not entirely sure that’s what I want. I don’t like the cost. I don’t like being slapped in the face with some of the reasons why the cost is what it is. But… I like her. I think I want to stay anyway.
The decisions that I know I have to make because I have to be comfortable with my care because it is for a long long time, but I have to think, too, about all of the cost… what to do, what to do…
That is part of my uncertainty today.

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Posted in rheumatoid arthritis

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Making a Fist

Posted on April 3, 2014 | 3 comments

069I found out, yesterday, that my inabiltiy to make a fist right now is (most likely) attributable to tenosynovitis. Given the way it presented (one finger on one hand) the Rheumy was kind of surprised that I have it.
She sent me down to get blood work and an x-ray (nothing broken, apparently), called in a perscirption for prednisone (I’m taking 40 mg for a few days and it seems to be wroking, at least way better than 20 did… it’s not all better, but way better… I’m not wanting to chew nails at any rate) and I’m to call her back tomorrow.
So this morning, I’m nearly able to make a fist (nearly… way closer than yesterday when my finger wouldn’t even bend).
That said, I’ve decide that today I have a reason to make a fist and do that whole WOOHOO thing fist pump knee raised.
I signed up today to make this blog my actual registered URL (and the payment went through this time). So from now on, I will not only be on the WordPress URL (https://figmentoffitness.wordpress.com/), I will also, officially, be at http://figmentoffitness.com.
I’ve tried this independently before. I think it’s way worth the money to have done it this way, and the URL is mine as long as I want it to be… for a small annual fee.
so I want to do the whole woohoo thing
I guess I will have to do it with my right hand, rather than my left, at least for another day or two!

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Posted in Beginnings

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Long Hard Month

Posted on March 3, 2014 | Leave a comment

So… we are in the new house and it is starting to feel like home.  I still have a good bit of cleaning to do, but it is feeling much more like we live here and not we have a maze of boxes.  The new job is incredible!  I’m having fun and learning and I’m being a productive part of the team.  It makes me smile.  I don’t always look forward to the drive in right now, but that is because the roads are sometimes kind of iffy not because of the job.

I realized it had been a month since I posted.  Yesterday I was way busy with trying to get boxes unpacked and put away… so another day passed with no posting.  But here I am.  Alone in the dark, realizing how much my RA took a toll on me for the past month.

I don’t EVER want to go over two months without my meds again.  I got my infusion on Thursday last week and it was almost 9 weeks between.  Not good.  Way not good.  The last couple weeks it was all I could do to get up on the morning and get to feeling human.  I was running on prednisone (not a good thing) and determination.  By the time I got home from work every night all I wanted to do was take napproxin and sleep.

I was tired, short tempered, and I hurt.  The day before my infusion hurt so badly that my fingers wouldn’t work when I told them to and my knee wouldn’t bear my weight for long (and my weight is starting to come down slowly!).

I’m glad I spent an hour on the phone with the insurance company.  Goodness only knows how long I would have had to wait if I hadn’t pitched a fit.

But the infusion was Thursday.  The infusion center at Cleveland Clinic is incredible.  They give you graham crackers and juice and a TV and a blanket and you can have company while you are having your infusion.  For me, given it is 30 or so minutes, the visitor part was kind of nice to have but not as important as if I had been one of the longer infusions.

The infusionists use a neat light to find the good veins to hit and it went really well.  I still miss Keoto, but I think I will be able to do this.  In July I will be able to start getting my infusions in my town rather than having to go clear into Cleveland to get them.  I will probably try to do a work from home thing those days and save some time.  It’s way better to have to drive 2 miles to the clinic and back than to take thirty minutes by bus or car and have to pay for parking.  I’m starting to really like the city but I’m starting to really dislike parking again.  Eh, it all comes out in the wash, I know. but if I can avoid the extra hassle I think it would be awesome.

And here I sit, alone in the darkness, my creatures at my feet… coffee and a shawl… missing my left behind son… and contemplating getting around to do my daughter’s hair (the thought of that doesn’t make me wince this morning either!) and getting my butt ready for work.

 

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Posted in Orencia, reflection, rheumatoid arthritis

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Gallery

Happy Groundhog’s Day

Posted on February 2, 2014

This gallery contains 1 photos.

    The little rodent was shoved out of his happy little home this morning only to determine we are going to have 6 more weeks of winter. As I sit here watching the fluffy white flakes drifting down and … Continue reading →

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Five weeks

Posted on February 1, 2014

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 →

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One Day At A Time

Posted on January 30, 2014

So, here I sit. I’m counting the days down until my next Rheumy appointment. I’m overdue. And I’m likely to be significantly more overdue for my infusion before I have any hope of getting in to get it. My hands … Continue reading →

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When Does Late Night Become Entirely Too Early Morning

Posted on January 2, 2014

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Yesterday, I could blame it on the dog.  This morning… it’s my thoughts racing and chasing and my inability to stop them. And the achies that have settled into my hands. It is with great regret that I think of … Continue reading →

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2013… It was quite a year

Posted on January 1, 2014 | 1 comment

Sitting here… the quiet of the house is settling around me.  I’m watching the jobs running at work… running at work.  I’m half way packing for the Disney trip.  I’m contemplating the past year.

It’s been an eventful one.

Just a year ago Adam had his first seizure.  I remember the panic in Brenden’s voice when I got the call.  I remember helping laying Adam down on the couch as the post ictal overtook him and he slept… he turned 21… he came out.  He tested the waters of dating, gotten burned a little.  Found love a lot.  This afternoon I watched him dance for the first time in sixteen years.  The last time he danced was in kindergarten… he cracked his lip open when he fell… fear of the pain of dancing, tonight, was overcome by  Over The Rainbow by Israel “Iz” Kaʻanoʻi Kamakawiwoʻole and Travis.  The dance was incredible.  The smile on Adam’s face even more priceless.   He’s grown in his art.  I need to find a way to encourage him to chase that dream, and his writing.

Nearly gave up on the Austin Half Marathon.  I hurt so bad.  I felt so alone.  The volunteers have no idea how many times they kept me going.  I wasn’t last.  I did finish.  In retrospect it was less awful than it seemed at the time.  But… it woke me up and taught me a lesson.   I need to listen to my body when it is bitching at me and not put off being completely honest with my doctors.  I need to rely on myself to get through and get by.  At the end of the race, when you cross the finish line, it’s not about when you finish, it is all about that you finish.  And that is one horrible hill in Austin.

I watched my (adult) children grow and bloom.  I watched them struggle.  I watched them become more and more.

I saw the pride on my little girl’s face when she finished the Austin half marathon in Disney Half Marathon time with ZERO training and a knee that was hurting about a million.  I watched her grow as a photographer and find her voice.  Now if I can just help her find her confidence.

I grew friendships that mean the world to me.  I realized what it means to have a best friend.  To be a best friend and what not being able to talk to your best friend and share the stupidest things with them means.  I have laughed and cried and worried and prayed and realized that it’s awesome to have someone to share with.

I have seen black spaghetti, beautiful multi-cultural places of worship and laughter… I fell in love with noodle soup (pho) and the amazing real places that we’ve seen.  This world is an amazing place.  It is full of truly amazing people.  I struggle even more now than ever before with the bigotry, ignorance and intolerance that I see in the world.

I’ve struggled with my health.

I’ve struggled some with work.

And… the coming year is starting out exciting and frightening and depressing.  I hope I’m up for the challenge.  I hope everything in 2014 turns out to be a wonderful adventure.

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Posted in Beginnings, reflection