Training thoughts… Disney Half Marathon 2014

I am fighting a fungal infection, a nasty cyst that needed to be lanced that is trying hard to drain, and getting my brain back into the groove of being “normal” again.  So, right now, I’m not really working much towards lowering weight or anything, but raising my water intake and getting my health stable again.
The doctor is happy that I’m healing so well with the new antibiotics and I haven’t had a pain pill in 24 hours so the end of the tunnel is in sight.
I signed up, yesterday, for a Gold’s Gym membership.  I am going to start training in a more logical and practical way here in the next couple days (as soon as I don’t want to scratch a few inches of skin off).  In the mean time, I’m really starting to think that I can do this, I can finish Disney and not get swept and still have a really special vacation.
I know that I really need to start doing something for me.  I’m starting to stress a LOT because I’m up till midnight answering questions and fixing problems and up at 5 answering questions and fixing problems and if I don’t soon start trying to do SOMETHING just for me, I’m going to start throwing things.  I can feel it starting to creep up under my skin.
You can sleep
HEY… why are you awake
answer this
you can sleep
HEY… what is this
answer this
you can sleep
HEY….
……. sigh… Times like this I really wish I could be like everybody else…

Finally Feeling Human!!!

So, here I sit.  Disney Christmas Music playing on YouTube and the smell of a gas station hot dog eminating from my coworker’s desk making me feel like I want to vomit.  I finished my third glass of water (this one with FIZZ grapefruit electrolyte replacement in it).  I think now is a great time to pull together my “holy crap it’s getting to be nearly time to worry” post for the Disney Half Marathon.

For starters, I’ve been preaching at Amandya to work on HER blog about her volunteer teaching in South Africa helping work through things in her mind and through planning and passing the time.  I guess practicing what I preach is probably a good idea.

I signed up, today, at work to join our company partially funded Gold’s Gym Membership.  It’s probably still more expensive than I should be really doing all things considered, but it is close to work (and frankly close to everywhere) so I can run over at lunch, even when I’m on pager patrol, and get in some workout time.

It won’t be all of the training that I need, but it will certainly help.  I know having that helped before and I know it can’t hurt.  It’s horribly warm out when I can be out walking at lunch and I don’t want to make myself sick.

This trip was kind of stressing me out a little before.  When I signed up, I thought I wouldn’t care so much that I was going to have to deal with the adventure on my own.  I was wrong.  I was stressing.  Being ALONE with a half marathon half a country away from anything resembling people or places of home… not the best feeling in the world.  And the advice to try to get people who were from around here to admit to running Disney was an even bigger joke.

Now, though, it looks like this is going to be an incredibly wonderful trip.  We are not only all going, as a family, we are making it an extended family adventure and taking grandkids and all kinds of stuff along with us.  It’s going to be a truly magical adventure.

I’m actually feeling like I’m going to be up for this challenge because I’m looking forward to it so much.  I’m determined to make this a magical adventure for the kids (big and smallish) and bringing really lasting memories to everyone.

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

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.  

Random chance meetings

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

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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Humans of New York

Okay, so I come to some things very slowly, but I usually get there. There, this time, is an awesome photography blog.  Humans of New York It’s wonderful!  And it has started me thinking (always a dangerous thing) about how … Continue reading

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

A Reason To Hate

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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On Touching Just One

If not me, then who? If I can touch just one, and that one can touch just one, and on and on and on, then maybe the world can change. Once upon a time, I wanted to change the world. … Continue reading