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.