Category Archives: reflection

This Week at the Rheumy

Posted on May 3, 2014 | Leave a comment

Saturday morning… Coffee this morning that is twice as much hot milk as coffee.  I realize (as I sit in the quiet of my special space watching light steal the darkness from the sky) that everywhere I go changes me.  Brings new realizations and experiences… and I work to make them mine.  Ecuadorian coffee… Vietnamese coffee… Espresso… tea brewed lose in my infuser cup…

It is a good morning.  It was a good week.

I had to put my infusion off for several days, so it was starting to be an ouchy week… but not too bad.

Because my finger was being very problematic for almost the entire month off and on, the Dr wanted to see me.  Turns out she isn’t actually in clinic on the day I was there, but she wanted to be paged, and she was, and by the time I was done with my adventure (Nurse, PA, Infusionists) she was there.  She’s reasonably happy with my progress.  She suggested I go back on prednisone for 2 weeks at 5mg a day.  I don’t think I will.   It is progressing and is tolerable.  I think I’m okay.  But it was a good feeling to have her make a special trip into clinic to check it out and make sure I’m okay.  And I found out that she was concerned enough about it to be looking up possible orencia reactions to see if maybe that was the issue.  I had to smile at that.  I was trying to look up the same things.

My infusion went off without a hitch.  I got juice and crackers… always a yummy treat… and was on my way after only 90 minutes (both appointments, end to end)… just long enough to cost $6 parking… yay me.

And I’ve managed to try to reset my appointments to first thing in the morning.  Not as early as Dr Booth, but not bad.  It makes my parking a little more creative, but if it isn’t storming I don’t mind parking on the roof.

So here I am.  Bright and early on a Saturday morning.  My furniture finally came yesterday (the kitchen table and my desk that we have been waiting for 12 weeks to see).  It showed up yesterday morning and the nicest Amish guy and his driver unloaded it and set it up.  You can still smell the faint traces of wood finish on them.  And today I make a concerted effort to try to get the office cleaned back up and organized and tomorrow, maybe, I can get back to trying to finish unpacking in the bedroom.

And Monday, my little girl and I (my daughter, the one who said she would never ever ever do Yoga) start Gentle Yoga at the Rec Center.  I’m looking forward to getting back to Yoga.  MAYBE I will even start doing the 45 and over yoga a second day a week!

Love and Light

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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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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

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Because It Makes A Difference

Posted on September 24, 2013

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 →

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On Crossing The Finish Line

Posted on September 11, 2013

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I watched a Run Disney video on YouTube this morning showing how people cross the finish line. There are so many reasons why people cross the way they do. It’s really neat to hear the stories about why they do … Continue reading →

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All about the perspective

Posted on September 7, 2013

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So, I’ve been dwelling a good bit lately because I know that people think I’m as dumb as a box of rocks. My post yesterday kind of dwelt on that. I’ve been torn between being dumber than a box of … Continue reading →

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Whining and Kvetching

Posted on August 29, 2013

I just had a nice little chat (is it called a chat if you are talking over text message?) with a friend of mine.  We used to work together and periodically we chat.  For the longest time (a couple years) … Continue reading →

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It’s All About Where You Look and How You Look At It

Posted on July 20, 2013 | 4 comments
Can you see the beauty and the magic?

Can you see the beauty and the magic?

So… Can you see the beauty?  Or can you only see the garbage?

I was on an adventure… camera in hand (duh) and there was a huge, stinky, overflowing dumpster.  Garbage was all around on the ground.  And, there he was, fluttering through the refuse,  on his own adventure?  Do you see him there, on the purple something?  He’s just sitting, quietly.  I have pictures of him dancing through the refuse.  

It really is all about where you look and how you see it.  People passed him.  No one really stopped to see.  Some saw the butterflies dancing in the flowers (although not nearly as many people as I would have thought).  But him?  No one stopped to see him.  No one hesitated in their hurry to pass to stop and see.

It’s been a contemplative few days.  He reminded me to stop and smell whatever I pass.  And to really really see.

Now,  the fog’s rolled in.  The room is quiet (well, it is 3 am) but outside the sounds of the city are starting to poke at the edges.  

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Random chance meetings

Posted on June 18, 2013 | Leave a comment

It’s my orencia infusion day. I got up early fed the fur babies and started my day. I’m a little extra on the achy side this morning because of the rain. I stopped Nd urged on a breakfast taco and jasmine dragon oolong tea and still made it plenty early for my appointment.
I stopped and took a couple wet roses pictures, and made a pit stop in the bathroom on my way to Dr Booth’s office.
Let me digress a little here… I love the sound of bells and wind chimes. So much so that I have a decent sized brass bell hooked to the handle of my back pack. I jingle when I walk.
When I came out of the stall there was a twenty something, dressed in pink and white, drying her hands. She had what will always be to me “Dutchy” glasses… Very thick bifocals… And a white cane.
She was kind of reluctant to talk but she had to know if i was the one with the bells. She has a friend at school who wears bells. She loves them too and her nick name is tinker bell. She asked where I got my bells.
We had a wonderful ten minute conversation in the bathroom. It was wonderful. She said my bells made her smile.
There are small pockets of the day that just make me stop and think about things … Like making total strangers smile

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