Monday, January 31, 2011

Too Much Snow

Figured I'd update this thing before the next storm knocks me on my ass yet again.  (We're looking at 20+ inches in the next two days.  UGH.)

My visit with Dr. T went great.  We went over my medical history and he gave me refills on the meds I don't get through the mail.  He was nice and soft-spoken and a good listener.

The thing that stuck out most to me is that he didn't make me feel like a circus freak.  Once most docs see the "frequent dislocations" thing, they start requesting me to do the tricks, the clicks, the thunks, the bends, the twists.  And then, of course, they say I shouldn't be doing those things since it's bad for my joints.  Right.  As long as it's not for you.  But Dr. T didn't go asking me to bend all my bendy bits.
  So either:

A. That's not his style because he's Canadian and super-chill.  (We Americans think Canadians are all super-chill and cool.)

or B. He doesn't quite know what EDS is and was opting to do his own research at a later time and catch up with me at my follow up. 

I wouldn't blame him.  I came in with a huge mofo of a stack of records and a laundry list of conditions that he didn't have time before my appointment to go over.  But overall, I like him and at the very least he seems really low-stress.  Yay!

He is making me go on ANOTHER medication and get a bunch of vaccinations though.  Apparently, he doesn't like that I'm not on something to protect my stomach since I've been on 1000mg of naprosyn a day for a few years and will likely never be able to come off it unless I go on something else different/stronger.  Bleeding ulcers are a big risk and the risk just goes up.  So I'm taking prevacid now.  Bringing my good-day pill count up to 12.  I am made of pills! XD

Also I'm apparently immuno-compromised enough from the plaquenil that I need to get a flu shot, a pneumonia vaccine, and a tetanus shot.   So I got my first ever flu shot which was no big deal.  Still need to get the others.

Okay, need to stop typing now.  Just wanted to update this thing before the snow starts up again.  Best of luck to all of those getting hit by the storm and to everyone else in general who needs it. 

Thursday, January 20, 2011

I got the New Doctor Nerves

Nervous nervous nervous!  Today I'm meeting with my new Primary Care Doc,  Dr. T.  I was really sad to lose my old PC since we was probably the best doctor I've ever had.

My fellow bendy folks out there know what I'm talking about. 

I had Dr. B broken in.  He understood the EDS as this rare condition I have as opposed to other docs who looked at me and called my symptoms impossible and dismissed me as attention seeking.  UGH.  And I don't want to go through it again.  My mistrust of doctors is pretty stupidly deep.  And I'm tired of it.  I just want to find a good doctor, attach my suction pads too him so he can never move or retire, so he can be my White Knight against the rest of the world.  Because it was absolutely amazing the kind of turn around my medical care had once I found Dr. B. 

I would tell doctors, "I keep dislocating my joints.  Um, help?  Please?"

And they'd go, "You can't do that!  Crazy person alert!"

But Dr. B said, "Oh my.  You ARE dislocating your joints!  Diagnosing you!"

AND Dr. B would also say, "Hey other doctor!  This girl is dislocating her joints.  Could you help?"

And they'd say, "Oh dear!  Dislocating joints?  Neat-o!  Let me see what I can do!"

So I'm nervous.  I just want another one of those.  I have a friend who sees Dr. T and said he's super chill so I have high hopes and I'll be going armed with the best weapon I have--my wifey.    Right now I'm copying something like 100 pages of medical records.  Sorry trees!

I talked to Dr. K from Tufts.  He doesn't like how bad my hands have been in the past few weeks.  Said he might consider putting me on MTX but we'd need to meet to go over things before that.  At this point I am opting out of treatment with MTX.  Yes indeedy.  I'm okay to not go on chemotherapy just yet.  I don't think things are that that awful bad right now. 

I just think my body really hates winter.  We keep getting blasted by snow and ice storms and my joints are feeling every bit of it.  I'm so done with winter.   Okay, Spring.  You can come out now! I expect once the weather warms back up that my hands will be back to how good they were in the fall. 

Which is still pretty sucky for a normal person, but I'll take what I can get with a big-ass smile.

Friday, January 14, 2011

How do you push with negative leverage?

I'm writing today to ask you take a few minutes of your day to take a look at this blog: One Month Before Heartbreak. 

One month from today Parliment will be slashing Britain's DLA (Disability Living Allowance).  Valentine's Day.  As I live in the US, this will not directly affect me in a financial matter, but I am strong affected nonetheless.  For those of us in the US, this would be like Congress deciding to ditch Social Security and implement a whole new system.

From what I have read, the new system plans on cutting DLA from 25% of those who receive despite the numbers of those defrauding the system being something like 3%.   So that's 22% of of the people who require financial help from the government to live, as deemed so by that government, who will be dropped.

We are the one group who can't fight back like others.  I get excited when I can put my socks on in the morning--I'm not in a position to participate in a march or a rally.  I can't stand outside a government building holding a sign.  I can't stand in a crowd so the media can show how many people will be affected.  When nurses or teachers have their pay cut, they can strike and people feel the lack pretty quickly.  What can we do?   

I am disabled.  I am a "drain on the system."  Am I just some lazy bum, who isn't really that sick?  Hell no, I am not.  There isn't much I'd like more than to be able to work.  Would the US economy be the tiniest bit better if I didn't exist?  Sure.  Does that give the world the right to ditch me?  Is that the message we want to send?  Because anyone can be hit by a drunk driver or develop an incurable disease and suddenly find themselves unable to make rent.  Sure, it's inconvenient for everyone else that there are people who need to be cared for, but wouldn't it be even more inconvenient to find you suddenly are unable to tie your shoes at the age of 23?

Really I can only speak from my experience of applying for both state and federal aid in America.  If you haven't gone through it, you can't understand it. 

What's the big deal.  It's just filling out a few forms, right?

Well no, not really.  First off, it's letting go of the hope that maybe things will be better next week.  Maybe next year you will be feeling better.  Maybe you'll be able to work in a few months.  You just hit a rough patch, it won't last.  At least in the next 5 years you'll finally be better.  You have to admit to yourself that's not the case.  That you can't and you won't and you need help.

So, yeah, you fill out the forms.  Most aren't hard forms in terms of intellectual difficulty, but it's never easy putting down, income for the past month? $0. 
For the past year $0. 
Do doctors believe your condition will ever improve?  No.

And then there are the hard forms.  The 40 pages of invasive questions.  
Describe everything you do on a typical day.
Do you have difficulty using the toilet?  How?
Can you cook for yourself?
Make a list of things you used to be able to do, but can't anymore.

They need to know everything you do and it makes me feel overly exposed.  Just try to stay positive while highlight just how awful your situation is.  Rubbing lemon juice on the wound. I've done nothing wrong, but it makes me feel like a criminal.  My old case worker often accused me of lying and would put down different information than what I had said.  

Then there are the phone calls.  I am terrified to pick up the phone when it rings.  My heart leaps into my throat every time without fail.  It's going to be someone who wants to talk to me in cold, disinterested tone about this thing, this disease, this condition that has turned my life upside-down.  But to them it is just paperwork.

I live in fear of more paperwork coming in.  A denial, a change, a glitch, yet another form.  Going to court to appeal the decision.  I was "lucky" in that I was deemed so sick I didn't need to have a medical exam by their doctors.

And once you've been approved, it doesn't really end.  They reevaluate every so often.

Now--everyone in Britain who has fought this battle and finally won, would have start all over.  Jump though different hoops with the knowledge that they plan on cutting a fourth of you.  This is unacceptable

My heart goes out to all of you that will be directly affected by this.