Friday, September 21, 2012

This is important.

This woman is amazing and brave.  Please read her post.  It is important to have a voice right now. 

I am disabled.  I refused to apply for disability for nearly 2 years after my doctors told me that I should apply.  I wanted to be independent.  To take responsibility for my life as you put it.  I lived off savings from a job I had as a teenager.  I applied to every job I could.  I wasn't hired and I physically couldn't work them so that was probably for the best. 

This was 2009, right after the crash.  I was 23 years old, just out of college, and living with an incurable, untreatable genetic condition, an incurable spinal condition, and an incurable disease.  My doctors ("It's not your fault, you never had a chance,") and my empty bank account convinced me that I had to give up for now and apply.  Every day, I still feel guilty even though I shouldn't have to feel that way.  The system is set up for people like me.  I don't want to use it, but it's the reason I eat, have heat in the winter, and a roof over my head.  Every day I think maybe this new treatment, this medicine, this wheelchair, this physical therapy will help me work again. 

I had refused to apply because of pride, because I didn't want the government to pay my way in the world.  I still don't want that.  But I understand now that as a country we take care of each other.  We are supposed to understand that anything can happen at anytime to any of us and that the system, while far from perfect, is here for everyone who needs it.  Do some people abuse it?  I'm positive they do.  But most of us aren't like that.  We're just trying to live, one day at a time with our diseases, our conditions.  Our pain and our inability to live the life we imagined.  Not the big things, the ballroom and yacht dreams--the little things--walking down the aisle, picking up a glass, holding someone's hand, running, using the bathroom on our own.
I admit to having been a victim in my life. I have been robbed, bullied, sexually and emotionally abused, and attemptedly raped.  I was a victim then and I healed and grew strong and rose above it.  NOT on the government's dime, might I add.  Now, my own immune system is attacking me.  My DNA is flawed.  I do not consider myself a victim.  I stand up against this and I fight the good fight everyday.  I fought hard to stay off government assistance and I fight hard still to go off of it one day, even though I am gently reminded by doctors that I will never get better, that I will only get worse. 

So no one has the right to say that I am not taking care of my life.  To say that I consider myself a victim.  That all I want out of life is to live off the government (that I have paid into) and bask in my pampered moocher lifestyle. 

I find it disgraceful that a candidate for president would use phrases such as "those people" or "people like that."  You do not pick and choose the people you represent in office.  But I am not an elected official and so I will use that phrase.  It is people like Mitt who instill that feeling of shame and guilt that kept me from accepting the help our government has in place for people in my situation. 

People who yell at the top of their lungs to pull yourself up by your bootstraps, but they have never experienced what it's like to not be able to put your own boots on.  To have to ask for help to get dressed in the morning. 

It is important to understand that this 47% view of the world is not only cold-hearted, it's wrong.  The 47% are the disabled, our troops fighting overseas, our elderly, and our very very rich who have no need to work.   Do not belittle my fight, my daily efforts often against medical advice, by saying I don't take responsibility for my life.  Not until you've watched me put my dislocated shoulder back in place for the 3rd time today so that I can keep doing my physical therapy and maybe, maybe be well enough to work one day.   

Monday, June 4, 2012

An Update: As requested.

Yikes!  It's nearly been a year since I posted on this thing!  OOPS.  I wish I could say I haven't been posting because I've gotten all better via some fantastic miracle (preferably from eating some magically cookie), but alas no.  I'll try to catch you up without writing a novel on here (EDIT: I failed to not write a novel here.  You've been warned.)  I'll try to start from my last entry.

  • I showed my Rheumy the pictures of my beau's lines like dents.  He said, "I don't know what that is," and left the exam room while I was still actively asking questions. Me = unhappy.
  • Showed the pictures to my primary care when next I saw him--Yup.  They are definitely Beau's Lines.  Basically, my flare was so bad that it caused the nail matrix on the affected hand to stop growing (the cells stopped dividing) for a while so when they started growing out again, they had a gap.  That just doesn't sound good.  My doc was concerned but it's not his area.  I asked to see a new Rheumy and he referred me happily.
  • New Rheumy!  I was really nervous, but she's fantastic.  Very warm, listens, stays with me as long as I need.  She saw me, heard my story, ordered labs, and wanted me back in a week so she'd have some time to research EDS in conjunction with Scleroderma.  Confirmed Beau's Lines and looked at my cuticles and confirmed I have nailfold capillary drop out.
  • Labs were my average.  Positive ANA but no other markers.  She tested for a rare Scleroderma maker which was negative, thank the gods!, because it's associated with Sclerodermic Renal Disease.  She contacted an old professor on Sclero and asked him to review my case.  Conclusion is that if someone has both EDS and Sclero, docs should NOT expect to see skin hardening.  So she's not diagnosing me with Sclero, but said that she was going to treat me as though I were one of her Sclero patients.
And then from there it was business as usual from November to March.  Well, actually in February I got walking pneumonia and I was super pissed off because I've gotten the pneumonia vaccine and I had a nasty reaction to it!  Like 102 fever for days and I couldn't move my arm it hurt so bad!  But I thought, it's okay because at least I won't get pneumonia! But I did and what the hell, vaccine!  But at least I didn't get full blown pneumonia so there's something.

Anyway.  March is when things started to go downhill.  Normally I have swelling and increased joint pain in my hands early in the morning and late at night.  The swelling stayed the same, but the pain started to last longer in the morning and come earlier at night.  And then once or twice a day it would show up in my feet.  And then my ankles.  Then my wrists.  And then my knees.  And then the pain was in my hands and feet equally.  And then that pain tripled.  It got so bad I wasn't sleeping at night.  And I was keeping M up because the pains were so sharp and sudden that I'd flinch/jump when they happened.

The best way I can describe it is that it's a little like a game of whack-a-mole.  I promise that will make sense in a second.  In whack-a-mole you've got a little mallet and you're waiting for creepy little plastic moles to pop up so you can hit them.  Well, it's like that in that I know that there is going to be this sharp stabbing joint pain.  I don't know where on my body it's going to pop up, but I know it's coming.  A hand this time?  Or a foot?  One of my knees?  So I'm waiting, but I'm never really prepared and then BAM! it pops up but I don't have a little mallet or anything to fix it.  So I called my Rheumy.

She put me on an 8 day round of prednisone, hoping it was a flare that we could get to calm down.  The prednisone made me feel like a thousand bucks.  UCTD joint pain went away (EDS joint pain wasn't really affected, but I'd take EDS pain over UCTD any day of the week).  And the brain fog went away!  I could think clearly again!  It was fantastic!  And then the 8 days were over and I rapidly went into withdrawal and spent the next 3 days either on the couch or vomiting.  Not sure what I was vomiting because the sum of all my meals for those 3 days consisted of water and maybe 10 saltines.

But when the prednisone nastiness cleared, I was back to my normal! YAY!  Back to my normal UCTD pain!  Not perfect but I'll take it!  It worked!

And then May got here.  And the pain started to spread again.  And it came back worse.  The constant pain in my feet was so bad that I couldn't put any weight on my toe joints/the balls of my feet.  I started walking on the sides of my feet, on my ankles, and sometimes on my heels.  I walked less and less.  If it was that level of pain on my bad days, I could do it, but it was my everyday and it just isn't a level of pain I can handle.  I'm losing more and more of my mobility in my hands, but thanks to EDS, it's still more than average non-bendy folk have.

 I also got my first where-in-the-hell-did-this-come-from rash.  On the back of my shoulder.  It itched like mad and at first looked like 3 bug bites, then swelled up like crazy to be this 3 inch circle of red.  Then it stopped itching and just burned.  Doc said it looked like it could maybe be poison ivy, but I'd spent the whole last week on the couch with angry don't-touch-me feet so I hadn't been out much.  It's gone now and my doc's not worried so I'm not worried.

Saw my Rheumy again about the pain coming back.  Did more labs and an MRI.  No answers, but also no joint damage so that's good.  We talked options for a while and came down to me going on a 5mg maintenance dose of prednisone for 1-2 months and then coming off of it.  Her hope is to put my disease back into remission, even if that gives me just 1-2 months of remission until the symptoms show back up and then I go back on the prednisone for 1-2 months.  It's not a solution I was super happy about because I don't like being on prednisone, but so far I haven't had any nasty side effects or bad reactions at this low a dose.

It's working enough.  It's not working as much as I'd like.  The pain is reduced enough that I can walk on the correct parts of my feet, but the pain is not gone, and it's not even back down to my "normal" level of pain.  But it is manageable.  So that's how I'm living right now. I am managing.  I've had some times when I can't walk on my feet, but it's usually early morning or in bad weather and it doesn't last, unlike before.  And my Rheumy is having me take my insomnia meds daily now so I am sleeping through the pain.  I see her at the end of the month to see how things are going.  If this doesn't work, our next option is methotrexate which comes with a boatload of nasty side effects and regular blood work to monitor blood counts as they fall (which they will) and liver function.  So if we can avoid MTX, that's for the best.  I just continue to hope and pray that this temporary solution works to put me back into remission when I come off of it this month or the next.

It's been hard as there are more things I feel like I can't do anymore.  More things this disease takes away.  I haven't been updating this thing, because often, I just don't want to think about it.  But M and my faith have really been getting me through.  It's not something I feel a need to hide from the world, but it's not something I talk about much either--mainly the two groups of people I talk to are either atheist/agnostic and religion is for the unenlightened, and in the other faith is truely a personal foundation, but it's assumed and vocally a Christian faith.  In the past I haven't felt comfortable talking about my faith openly because I can't predict the reactions, but right now that fear feels unimportant and small.  Without my faith, I'm sure I'd be in a capital-D Depression.  But I'm not.   I know that my gods are right here with me and they hold me up.  It is coming up on 10 years since I was dedicated to my patron god.  It sounds like a long time, but it doesn't feel like it.  I have evolved and grown and changed so much in 10 years, but he has been a constant; he has lived in and around me like breath, reminding me to let go and follow, that I will be taken care of, reminding me of my own strength.  He fills my mind with wind when it feels hollowed out by pain.  I just can't feel right about keeping this a secret for fear of what others will think.  Hi, my name is K, and I'm a poly/pantheist who practices what I just recently found out is called Celtic Shamanism.  Who knew.

But it's not just the gods getting me through-- M is amazing. I will never be able to thank her enough.  She's my perfect companion. She's always there when I need her and she scolds me for not taking care of myself and reminds me to ask, and to accept, help.  She's the reason I can say in the face of all this pain and restriction, I am happy.

Wednesday, July 13, 2011

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.

Tuesday, June 14, 2011

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.

Friday, April 29, 2011

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. 

Thursday, March 24, 2011

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.

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.