I am awake at 5am watching a marathon of Veronica Marrs.

beacuse I can't sleep because I hurt and if I take won't make me hurt pills I will seriously sleep until 6 or 7pm.
which I feel causes massive resentment from the people I'm staying with (which may be all in my head) and I start pushing myself to do more as each day passes.  Yet lack of sleep just makes most of which is wrong with me worse as my muscles don't get a change to regenerate.

Have I mentioned that I HATE THIS ILLNESS?

sorry there have been no updates recently

but doing some RL stuff and the pain/sleep cycle I've gotten behind on this blog.
Starting up a Chill campaign and playing AD&D again.  When almost immobile, pull out the things you enjoy that don't hurt too much to do. I need a bed I can fold away so I can sleep somewhere other than the couch or maybe a double height twin air mattress that I can deflate in the mornings.  I think this couch is what's causing or at least aggravating my hips and lower back.  ROFL the Julia Needs A Bed Fund donations can go to my paypal. gipsydreamer@gipsydreamer.com. (I'm actually not serious, I know funds are tight for everyone and an abandoned and hurt person doesn't tug the heart strings like and an abandoned and hurt animal.
Crap, see, now I've gone all morbid.

Gonna take my night night drugs and go to sleep.

tonight I wanna die or at least I feel like I am

 My muscles ache, I forgot my morning meds because I slept through when I should have taken them. I fell getting out of the tub and had to have help getting out. I'm bruised all over because my balance is going.  I think I need more intensive care than the clinic here can provide.  I think  I have also developed a kidney infection. as that's where my back hurts and oh god does it hurt so bad..  I don't know what to do, I can't afford the ER and  I can't afford a non-free clinic doctor.  I feel like I'm dying as it is.  :(  help me? even if it's only prayers. Where is the help for people like me? The invisible ones, that fall between the cracks in the system?

Don't be afraid, come right on in! I won't bite...much

I started this as a place to freely express how my body feels on a day to day basis, however, I know you're out there and maybe a little scared to talk to me in comments. I won't glom on I promise, I don't even expect a omg I'm so sorry honey on each post but I kinda feel like I'm talking to myself,

If you are a fellow sufferer of any of this mess, please speak up, the lonely feeling is the worst of them all.

If you are a loved one of someone with any of this going on and you just want perspective or even to vent, feel free to speak up but honor my wish that this be a safe space and keep it polite, we may all learn something from each other here.

If you're just stopping by or landed her by accident, feel free to look around and say hi and maybe take your shoes off and stay a while.

Pain update for today, drowsy with a chance of clumsy, this balance and dry-mouth issue need to be addressed asap. everything is still sore

peace,

Jules

real pain post (I know, I know no witty title today) be warned there may be whining involved

here we go

• Shooting pain down my arms and legs all this week
• Joint aches in my fingers, hands themselves, wrists, elbows, hips, (omg my hips) lower back ankles and feet
• What I can only describe as 'splintering' pain up my shins in the front
• exhaustion on a level that scares me, getting up to go to the bathroom and getting back has become an event. three-four tries to get up, catch my breath and my balance, go pee, wash hand, stop by the kitchen and grab something to eat and drink because god forbid I have to make this trip again any time soon. By that point my body is screaming at me and I'm in tears as I collaspe to the couch, panting for breath.
• oh and last but not least, the water retention along with severe dry mouth.

This is an everyday occurrence for me multiple times a day, The drugs aren't helping, the main stressors in my life are things I can do nothing about and lack of my own car keeps me trapped here. I need new friends and more positive energy around me.

Some Times It Hurts So Much To Love

This past week has been hell, I need about 3 tries to get up off the couch and I can hear/feel my knee joints grinding together. I have two molars that have broken open to the nerve and hurt constantly, but no one here does charity dental work. So I'm stuck for a lack of about 80.00. My ex, who I won't name by name in this blog has decided that he is parking my domains for my make up and jewelry business and that if I want him to keep hosting them I need to pay him 200.00 a year for each one and that I need to do so by the end of this month. He know I have no income and since I was honest and told DSHS that after he kicked me out I've been spending most of my time in Oregon. I'm waiting for an answer from my ssi appeal but I think I may have to refile. I am flaring so bad, it takes me 3-4 tries to get up off the couch and I am winded and almost crying in pain. I don't know what resources are out there for me but I need to find something. Living on Kris & Johns sofa can't last forever. I need my own space and prove to myself that this Illness isn't controlling me. The ex called me a thief and a liar because I called him on his own crap. Someone told me I should put a fundraiser button up that links to my paypal but I'm too proud and I know money is hard for everyone right now. I want to combine the make up & the jewelry and combine them under one name. I can get hosting service for 42.00 a year that does the exact same thing that the ex did with out the guilt and the stress that triggers the flare up.

I was going to post the email exchange between us but i figure y'all don't need that.

good night everyone.

I don't like the drugs but the drugs love me

My medication routine stands at this (for now)

AM: Wellbutrin,Clonipin, Topamax

Mid day: Flexaril, Vicoden Clonipin

PM: Flexaril, Vicoden, Clonipin Traznodone

this pretty much means I'm a walking (when I can) zombie.
so far I'm not liking the Traz. It's a failed antidepressant l at made people sleep, so it's prescribed as a sleep aid. Problem is, it makes me burp-up all day and makes me so drowsy all day long that I feel like I'm never really awake and like I'm moving though mud or in slow motion.

Tonight we cut my dosage of the Traz down to half a pill to see if it makes me more functional and less lump on the sofa.

In other news, Ava the moose sized doggie has been a godsend for me this past week. She shadows me everywhere I go and on more than one occasion has braced me when I thought I was gonna fall down. I told John tonight he should look in to service dog training for her. If she were mine I certainly would

Here's Ava! I think she's trying to decide if she can lick the camera or not.

Ouch this hurts

those are words that for most people mean nothing really. Temporary pain that goes away after a while, maybe leaves a scar. For people like me, the pain never really goes away. Some days are good, I can do most things everyone else can, some days I'm lucky if I can get out of bed. This illness of mine has cost me so much. My freedom to enjoy hiking in the woods, to trust my body to do what I tell it to do. You run down a slope and on to the beach and I will stand there and carefully consider the safest way down for me and if once down there and exhausted from the day at the shore, will I be able to get back up. This illness has cost me friends, as who wants to hang out with someone they feel they have to be responsible for the whole time they are out together. It's cost me my dreams of finding true love as no man I've ever met wants to fall in to the role of caretaker that they will inevitably fall in to if they are with me for an extended time. I am a burden and I am aware of it. However I am also beautiful, funny,sensual, loving, giving and a damn good cook. The fact that I have lost faith in anyone ever taking me on makes me sad as they are missing out on something wonderful. I am ill but I am not my illness.

My diagnosis at this time is Fibromyalgia, Osteoarthritis PTSD, Bipolar Disorder and I have hit 6 of 11 markers for Lupus. I'll be keeping track of my symptoms day to day here and maybe just a bit of humor, cause if I can't laugh at this I'll die.

oh! this is me!

Nice to meet you!