Monday, December 20, 2010

Perspective can really screw with you

It's snowing outside right now.  Winter is really here and I've been feeling it in my joints and hands.  My fingers keep dislocating today which I figure really should be impossible with how swollen they are.  I can barely bend them--how can they bend out of place on with the tiniest pressure? 

I'm losing ground on my hands.  It's because of the winter, I know.  I wake up too early and turn over, reach to bring the blankets with me and there it is: my fingers don't bend.  I can't grab the blanket.  My hands is just this throbbing paddle.  Like a little, "Good morning.  You have this disease, remember?"  And right now that freaks me out.  It didn't a month ago.  But a month ago, I could use my fingers before 2pm.  I'm full up on anti--inflamatories, epilepsy drugs, and malaria cures but winter is bringing in the breakthrough stiffness.  I'm sure it will go away, but I'm just buckling down for a rough ride 'til spring.

And I don't have a doctor yet.  I know I should probably make that call soon, but I just keep putting it off.  I keep hearing the bad doctors in my head.  I'm not in the mood to train another one to listen to me.

I had my meeting with Human Services.  They needed me to fill out a bunch of paperwork, but I could barely hold a pen.  She spent time filling it out for me, so all I had to do was sign.  They gave me emergency funding to get through the month because of the stupid SSI debacle.  Now it's just more waiting.  

My friend recently posted on Facebook a picture of her hand with a bandaid on the tip of her ring finger.  Her post read, "My double finger scroll finger is out of commission. Never realizing how often I did this before; I am amazed by my right hand ring finger's importance. Show some appreciation to this finger today Mac users."

I read that and I couldn't stop laughing.  It seemed so ridiculous.  Like if Paris Hilton were to post about having to wear the same pair of jeans twice and really gaining perspective from it.

And then I couldn't stop crying.  It's funny how my little Pity Pigmy only sneaks out of the cell I've locked him into when I remember that things aren't like this for other people.  I forget and think this is just how things are.  That my body isn't that messed up, but I guess I kind of am.  And other people aren't like this.  That losing one finger can really throw off someone's day.  Appreciate everything, everyone. 

All I want to do right now is do things with my hands.  As soon as they start moving in the afternoon it's time for stretches and exercises, then I crochet until they swell up again at night.  It's like I need to make things out of nothing.  Need to take a ball of yarn and make something that will keep my wife warm.  Need to take a pile of old newspapers and flour and water and build things.  I know it's transparent in motive but it's a very strong need.    I'll hopefully have some pictures posted soon of my cripply creations.

Trying to stay positive like the rest of my bendy buddies.  I really wish I could find a bendy group near me.  Sometimes it feels hard to hold each other up from afar. 

Thursday, December 2, 2010

Never been anywhere

As I posted in my last entry, I have no health insurance because I was given false information from a Social Security rep (mainly that I wouldn't lose my health care) and the overall response from every agency I have spoken to (Social Security, local Social Services, & a legal agency) has been a unanimous, "That's too bad.  Oh well."

So now I am reapplying for Medicaid.  I got a letter that I need to have a meeting at the local Social Services building.  It's during normal business hours, meaning all my friends work and can't take me.  But I have to get there.

I'm new in the state, disabled, and trying to figure this shit out.  Phone calls ahoy!

The local health center that has a transportation service can't drive me there because it's not a doctor's appointment.

The other local transportation service for the disabled only takes people who have Medicaid cards.

There is a bus I could take from the bottom of my street to a restaurant on the street the building is on.  The buses are handicap friendly.  But I have to get to the bus stop.  From my place it's 0.6 miles to the bus and it will drop me 0.6 miles from the building I need to get to.

For someone in a wheelchair in New England December, that's a fucking long way.  Not to mention the way back would be a very steep hill.  And I don't know if you've ever tried to wheel a chair uphill with two bum shoulders and almost no grip strength in your hands but it's a really sucky way to spend the next 4 hours.

I could take a cab.  With what money?  I'm still on my "continuing rate" from my last residence (an amount totally inaccurate because of a my dolt of a case worker, but that's another, "Oh well") so my monthly benefits are $40 less than my half of the rent for the month.  Forget bills and food.  So cab fare?  For a 20 min ride? Both ways?  I considered calling a cab to take me to bus stop then taking the bus to the next stop and calling another cab to take me the last 0.6 miles but this seems insane.

There is a system in the bus company to help disabled people get to and from the bus stop--if you carry a Medicaid card.

If I was all alone, I don't know what would do.  As it is, I'll be okay--someone is taking me to my appointment.  Not sure who right now but, one of my amazing friends will take off from work to get me there.  I feel pretty awful about it.

I have never been anywhere on my own.  Ever.  It's embarrassing.  I really have no independence.  Never been able to drive anywhere alone and now I can't drive.  Never walked anywhere.  Never taken public transport on my own because I fall, I dislocate, I get too dizzy to see, my arms and hands get too painful to wheel, and I generally need help all the time.  That's hard for me to admit.  I didn't think about it until this whole episode. And it kind of hurts to have that come to the surface.

It's amazing how much applying for help really makes me feel like shit.  Just as Benefit Scrounging Scum wrote in her most recent blog, it's really damn hard to have to, "justify how absolutely, utterly shit you, everything about you and your entire existence is."

But the truth is there is no system for people like us.  They think there is.  We assume there is.  There kind of is, but it's made by people who don't have to use it.  So they miss things.  They don't quite get it right. 

It's really scary to me that I've never been anywhere alone.  Like I'm missing out on some major passage in life.  Like I'm really just this big scared baby--even though I know that it's not true.  I know that I'm a strong person but for some reason those two things--being strong and having no independence--clash in my mind.