Hand photos--otherwise it's business as usual

I've been meaning to post some pictures M was kind enough to take of my hands and the new weird stuff that has been showing up on them.  None of it is painful or even very noticeable to other people, but to me, it really sticks out.

Things have been pretty average.  EDS is EDS--I've been popping joints out and back in as usual.  I went down to my half dose of plaquenil and the sky hasn't fallen which is nice.  My pain level is up.  My hands hurt more than they did before, they swell more in the morning, and the pain wakes me up some nights.  But it's still a manageable amount of pain.  If when I report to my Rheumy in two weeks he tells me he'd like to stick with this treatment plan, I wouldn't fight him on it.  As long is it doesn't get worse.  And as long as my organs are still all in working order, which my bloodwork that I got done on Monday should tell us.  Here's hoping.

Finger Pictures!

These are the dents I had in my fingernails.  You can see them on my index and ring fingernails.  There is a tiny one on my pinky fingernail but it doesn't really show up.  They have all, except for the pinky, grown out.

Here is a not so great photo of a splinter hemorrhage on my thumbnail.  By the time I thought to take a picture of it, it had already half grown out, but here's what was left of it.  You can see it (it looks like a black line) in the right-hand corner of my nail, right before the nail turns white at the edge.

And here are what my nail-beds and cuticles look like now.  Back when I first started seeing docs for this autoimmune thing, they had checked my cuticles and said they were right on the edge of being abnormal--but they looked normal to the eye to me.  Now they don't look so normal, so I hope my doc checks them out when I see him next. 

You should be able to see along my cuticles, there are little blood colored dots and streaks.  They weren't there a month ago.

Up's and down's = Middle ground?

I have been awful about keeping this up.  Apologies.  I'm sure the rest of you bendies/spoonies know how it is.  Also, hugs and good juju to everyone out there having a hard time this month. 

It's funny, my hands still don't look like my hands.  It's been over a year since my fingers went all wonky.  They don't look like they used to.  Even on good days they're red and swollen and knobby.  Mottled with reticularis.  The skin is loose and shiny from being stretched out during flares.  You'd think after almost a year and a half I'd be used to the look of these new hands, but I'm not.  They're still weird hands. Bad hands. It's strange.

I finally received word that I have been approved for medicaid!  Again.  After their screw up.  But it's back!  So I have my back up insurance and that's a good thing.  There have been a few other insurance debacles that I just can't even bare to go into.  They involve hours on the phone and a bunch crying from me because I'm a wimp and get overwhelmed.  Bottom line, I think things will be okay.  

My condition has been pretty stable.  Joints pop out, joints pop in.  Muscle spasms.  Standard EDS junk.  Brain fog is in full force and nasty.  It's hard to find the words I mean to say.  It's like suddenly English is my second language and the vocab is hard to remember and everyday is a pop quiz.  I've had a few flare ups of my autoimmune disease.  At least I know now how to predict them.  If I start getting splinter hemorrhages, I know I've got about a week until I lose use of my hands.  

I think I've got Beau's lines on my fingernails that showed up during my last flare and that's weird.  You know in cartoons when someone's hand gets slammed in a door or car trunk and when they take it out they've got this big dent in their hand?  That's what my fingernails look like, except I didn't shut a door on them.  I took pictures for my doc.  I don't know what that means, but at least it's growing out.

I've lost weight.  Not on purpose.  More like I'm slightly concerned that I've lost weight.  Nothing drastic, just 10 pounds but not on purpose.  My appetite is riding pretty high.  Sometimes I feel like I did on prednisone: I COULD EAT EVERYTHING!  I try to keep things reasonable, but I'm not trying to drop more pounds even though I'm technically "overweight" and I bet my docs would probably like me another 10 pounds lighter.  But whatever.

The point is that by dropping weight I'm now right on the edge of the dosage amount for Plaquenil.  At my weight I should probably be taking half of what I'm on now.  So, as I said before, my Rheumy has instructed me to drop down to half my normal dose at the end of June and see how it goes.  The plaquenil has been working wonders for me.  My last blood workup had me at almost normal ANA levels.  It's really suppressing the disease.  I'm worried about what will happen. It's a little scary.  I'm worried the disease will come back on full force.  I just want to stay the course I'm on.  You know, without liver and kidney toxicity from too much plaquenil.  That'd be great, thanks.  While we're making requests, I'd also like some cheese fries.  (See, there's that appetite thing again.)

 I have a deck garden now.  M is so good to me.  She financed it and let me do all the dirty work.  It's nice being a kept woman.  It looks great and I love it.  I am pretty content actually.  I mean there are SO many things that I want to do that I can't: work, run, hike, drive, knit, etc; but still.  With what I have, I feel so content and happy.  The things that I want are out of reach for the time being and I'm starting to accept that but not in a way that I feel defeated.  More in a way that I feel zen.  So ignoring those wants and ignoring my ever present want for good health, I don't really want for anything right now. 

I used to feel like I was missing huge chunks of my self.  Like EDS and UCTD had taking big raw bites out of me and run away with them.  But I don't anymore.  I feel whole even with all my limitations.  I used to feel like not enough of a person when I couldn't dress myself or open a bottle, but for the most part I just feel like a good, whole person.  I still have my bad days, my bad moments when I mourn how dependent I am, how I just can't work a job no matter how hard I try or want to,  how I just want to be well, but they pass.  It's not like if I could do those things, I wouldn't--just that I can accept that there are things that I cannot do.  I know all this sounds contradictory, but maybe you just have to live through it for it to make sense.   I acknowledge that I am broken, but I also feel whole.  I guess it would be more succinct to just say: I am thankful.

New Rheumy, Chilblains, & Test Results

Thankfully my primary care doc was able to make me an appointment with the other local Rheumatologist (Dr S).  It wasn't much help with the flare up of my autoimmune disease that I was having at the time because by the time the appointment rolled around, my hands were back to "normal."  The flare lasted about a month and was awful.  But fine, he did see me.

He seems like a good doc.  Not the warm, friendly type but seems to know his shit about autoimmune diseases and hasn't come off as knowing nothing about EDS so I'll take it.  I explained about the extremely painful lumps I got on my fingers right before the flare up went to town and he thinks that I had chilblains.  Chilblains!  Shit!  Oops.  Apparently they are not uncommon for people with Raynaud's and that I need to keep warmer and use warm water, NOT HOT, to bring my hands back to life when they go all white and corpse-y.  Eek!   ...I will also completely stop my practice of squeezing the blood back up into my fingers when they take too long to come back.  My bad.

He had me run bloodwork since I hadn't had an autoimmune workup since going on plaquenil.  And I just got the results at my follow up and they're all good!  Woohoo!  All specific CTD markers were negative and even my ANA titer was only 1:160, down from my last 1:320 and way down from my initial 1:1280.  It's basically normal which Dr. S is typical when going on a drug that suppresses the immune system like plaquenil. 

In the next coming months, he wants to see how I do with halving my dose of plaquenil which to quote him, "Is a great drug...other than making people go blind."  So I go down on my dose in about 2 months.  He also gave me some prednisone to take in a small burst if I have another flare up so I won't be stuck on my own with nothing to help me.  Which is awesome.

Then there's this whole other thing with my insurance company that just NOW decided to tell me that they don't cover pre-existing conditions.

"But you sound young so that's probably not a problem for you."

Ahahahahhaahahhhahahhahaha.  Funny story.  About that.  WTF!!!???  So now I'm running around trying to get that waived.  Which is, in fact, so stressful for me that I can't even blog about it because I will just start crying again.  So that's that. 

Turned away by new Rheumatologist. My day could be better.

Sorry for the radio silence.  Here's where I am right now.

I moved a while back and I've been scrambling since to get my medical stuff in order.  Got a new primary care doc, Dr. T, who I like.  Got my meds transferred over to my new insurance. 

I still haven't heard any news from the state of NH about my medicaid.  So thank the gods for M's insurance or else I'd still be waiting for insurance from the state that I lost because of a false information snafu.  My meds would have run out last month and I'd be a painful mess. 

Here's my new problem.  I've been meaning to get a new Rheumy since I moved but I put it off because all the medical running around tires me out.  My old Rheumy, Dr. K, recommended someone local to me but I hadn't called. 

My autoimmune disease is having a flare up.  I had red lumps on my right index and pinky finger joints at first.  Those seem to be gone but now those two fingers are so swollen they don't bend anymore.  Right index finger is easily double the size of my left one.  My pain and stiffness is up in the rest of my hands as well.  So I called.  Turns out this Dr. P won't make an appointment with someone until their medical records are sent over for her to review.  I didn't like that right away.  It felt like I was auditioning to have a doctor.  I called the other Rheumy close by and he does the same thing. 

So fine.   I had my records sent over to Dr. P and today I got a call.  She has looked over my records won't be taking on my care.  She strongly recommends that I stay with Dr. K. 

What?  First off.  What the hell?  Secondly, stay with Dr. K? Who is over 2 hours away?  And books 5-6 months out?  For this flare up I'm having now?  I can't work, I can't drive.  Travel is expensive.  My benefits cover my half of the bills with about 30 bucks left over.  Travel is also extremely painful.   Taking the bus the 1 hour ride to Tufts before would knock me out for almost a week after the fact.  My joints just can't take it.  So now we double that?  Sure, this sounds like great advice, doc!  I was having an okay day, but now I'm a weepy mess.  Fantastic.

Is my disease that weird that you just don't want to deal with it?  I know UCTD is complicated.  It's not set in stone.  It changes, it varies.  Sort of like EDS.  Manifests differently for each of us.  But seriously.  What.  the.  fuck.   Pardon me, but grow a set, doc.  You don't even have to figure out what it is.  I told you what it is.  Just help me if it gets worse. 

I may have confusing conditions, but I'm a good patient.  Friendly, smiley and generally compliant.    Plus, I'm cute and small and fit easily into most overhead compartments. 

To me, I seem like a patient jackpot.  I'm a privately insured nice person with a chronic disease that will require lots of tests that need to be periodically repeated and will need to be seen more often than most.  I thought doctors liked money. 

I'm sure there is a reason for Dr P to reject me like this.  I know that probably she thinks that I'll get better care for my crazy-ass disease at a top notch place like Tufts.  But right now that doesn't help me.   I'm in pain and not getting help, so it's hard for me to give a damn about the logical reasons of why she made this decision.

Anyway.  I'm upset.  And I'm tired.  And my hands don't work.   Dr. T's office called once they had heard what happened and at least they were understanding that Boston is a haul for me and sort of out of the question.  They're trying to set something up for me with someone else in the area.   Have to wait for a phone call.  So I hope.  It's a thing I have to remind myself to do.  I pray and I hope.

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. 

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.

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.