Guilty

I have a horrible secret to disclose.  I'm jealous.  I'm jealous of other people who are sick with the same things as me and can leave the house and even drive, but complain that their pain is worse.  It makes it worse when those people insinuate that I must not try very hard if I'm homebound with pain, or suggest that really it's mental.  I'd expect this least of all from an EDSer.  I'm jealous of people with good insurance, because I know with good insurance, instead of state Medicaid, I'd be healthier than I am, and could see good doctors.  I could even get braces made for me, rather than having to buy them on Amazon or at Wal-Mart.  I'm nearly jealous of people with my disorder who can walk, drive, work, or go to school...and I hate that.  I hate being jealous, and I'm usually not a jealous person.  Some EDSers can even climb stairs, something I haven't been able to do for years.  I haven't been able to drive for years either.  It pisses me off more than I can say when people say "well I do it because I have to."  Do you fucking think I don't have to?  DH (Darling Husband) is also disabled and I need to drive, too, but I can't!  I can't hold my hands up on the steering wheel, or push on the gas or brake, because the pain is so bad.  Or do you think that I don't want to drive, go up stairs, and get out of this fucking house with every bit of me?  Do you think I fucking like staying in this house all the time?  Do you think I fucking like my life like this???  I'm so lonely I cry from heartbreak every day as well as cry from pain every day.  

Ehlers-Danlos: A Mystery

A flare and I'll miss you forever

I've been in bed all day in too much pain to move.  I couldn't even hold the book I was reading, which incidentally, is very good.  So for most of the day I've been lying still, drifting in and out of sleep.  For 2012, I had a pain flare two to three times a month, and four times in December.  I made it until January 4th of the new year before I started flaring.  So...I made it a whole four days into the new year.

I have been doing good at keeping a food diary since the new year, all five days of it, and I need to be as diligent with keeping a pain diary.  I intend to keep up on all of my blogs a bit better this month, too.  The best I can do right now is to make monthly goals.  Making a goal for a whole year is just too overwhelming.

Obviously I'm moving now, at least enough to type.  I'm on the couch now, wrapped up in my zebra electric throw that DH (Darling Husband) got me for Christmas, and moving as little as possible.  I've tried some gentle stretches but they seem to only add to the pain.

I've been so frustrated with my hand pain lately.  I want to crochet so bad, but I can't because of the pain.  I see all these beautiful things I want to make on Pinterest and it's driving me nuts to not make them.  If you are interested in crochet, I have a few boards on Pinterest I'd like to recommend:

• Crochet Jewelry/Wire Crochet
• Crochet Instruction/Tutorials
• Crochet Pattern Websites
• Crochet Afghans, Granny Squares, & Mandalas
• Crochet Stuffed Animals, Amigurumi, Flowers, Appliques, Hearts, Balls, & Butterflies
• Crochet for Baby/Toddler
• Crochet Scarves, Shawls, Wraps, & Ponchos
• Crochet Hats, Headbands, Etc.

These aren't all of my crochet boards on Pinterest, but they are the best ones.

Christmas was nice, I was very thankful to have my own family: DH, Sterling, Niki, Katya, and me.  Our kitties are definitely our babies.  We just put up a tiny tree this year so they couldn't knock over anything big, and do a lot of damage.  Of course, they knocked over the small tree a million times.  We had a nice fake tree until a couple of years ago, but Niki climbed it a bunch of times the last time we had it out and she broke off and/or bent beyond repair the wire branches.

DH got me a zebra electric throw, which was perfect for all these flares.  He gave it to me early, well, because of the December flares.  He also gave me a craft knife set I can use for clay, which I want to try, on days that my hands are playing nice and not bitching at me.

I got horrible news from my parents a few days after Christmas.  My dog, who was my best friend growing up, and was there for me no matter what, passed away.  He was one of my soul mates, and I never would have made it through my teen years without him.  Heck, I wouldn't have made it through my favorite Aunt's two bouts of cancer if I hadn't had him to lick away my tears.

I just realized that there are tears streaming down my face.  I'll miss you forever, my puppy dog.

April 17th, 1994

Foot pain again and again

Between hypermobile feet, piezogenic papules, blood pooling in my feet from POTS, and toes that are subluxing constantly (and sometimes dislocating), my feet have been in extreme pain.  My feet always hurt and it hurts to touch the bottom of them.  However, this pain is incredible, and it hurts to lie down, sit, and especially stand.  I wear socks to soften touch against my feet.  It is hard to never have the bottom of my feet touched at all, especially when I have the weird habit of playing with my toes when I'm nervous.  I know that's a weird habit.

It's another rainy day, too, and it's playing mean with all my joints.  Ow.  I hurt so bad last night I was on Pinterest for awhile, then I couldn't even do that, and had to watch TV online the rest of the night.  I'm really into the Investigation Discovery shows on Netflix, but I can't watch too many of them in a row without getting a bit depressed.  My favorite show is probably Life After People, but I've seen them all.  They are so interesting, though, that I can rewatch them again in a few months.

I need to clean off the desk, it's really messed up.  However, on these yucky, rainy days it really hurts to clean, even if I sat down.  I still want that dang desk cleaned, though!

Ow! 

The real reason doctors become doctors--MONEY

I live in a rural area and have traveled all over my state to see doctors.  As you probably know if you read my blogs (and if you don't, welcome to my blog!) I live in poverty and rely on Social Security Disability.  They pay very little, and we barely have enough to make ends meet.  It takes months of saving to travel for a doctor's appointment.  None of the doctor's I've seen want to help with my pain, they all pretty much say to just live with it.  I have never, ever asked for pain pills.  I always tell my doctors pain medication will be a last resort and I want to try to manage my pain in every other way possible first.  

Right now I am almost completely housebound from pain, and can't even make it to my doctor appointments over half the time because I'm in too much pain to even walk to the car. I've already had a doctor drop me because of that, and I totally understand their point of view on it, if a patient keeps canceling, what are they supposed to do? 

 I cry every single day from the pain, and I'm no stranger to passing out from it, or crying myself to sleep from pain. Or, of course, the opposite, where I can't sleep for days from the pain. I was disabled before and on disability for my bipolar, but now I find myself so much more disabled than ever before, when you add the EDS, POTS, and fibro to mix with the bipolar. I've been on a walker since I was 29 because of the pain when trying to walk. 

Doctors don't care about their patients.  There isn't a solution, because a doctor would rather you are crippled, i.e. they get to see you more often equals more money in their pocket (even though it doesn't turn out that way), than help you lead a normal life. Most doctors really don't care about their patients, they care about the reason they became doctors--money. They could give two shits about their patient's quality of life. I don't know how many times I've left a doctor's office crying and not even being able to hide it.  I would be past the point it was possible to hide it, I was in so much pain from the trip, and so stupidly hopeful they would help. Like I said, the days are gone when doctors cared about the quality of life of their patients. I'm sure some doctors still do, but most don't. 

Sorry, my view is very pessimistic, but it is my experience.

Lots and lots of pillows

I can't remember not being in pain and I can't remember not loving pillows.  I think lots and lots of pillows are a necessary, along with Aspercreme, splints, braces, ice packs, and heating pads.  I made the bed yesterday morning and couldn't help but laugh at how lopsided I'd made it when I put all my pillows on my side.  Do you think you can tell which side I sleep on?

Health Activist Writer’s Month Challenge Day #30

Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about
your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http:/
/www.wordle.net/