Small children talk a lot.

I slept a ton last night (think went to bed at 9pm kinda thing). Still too tired today but still. Could be worse.

I went and got some arrows to make into boffer arrows for larp and some yarn for the blanket I am making for my parents. Then I got home to find my sister arriving along with her kiddos. I love those kids but 5 hours with them is more than I can handle. M is a cute little thing and told me all about preschool and everything she could think of. H is a 3 year old that thinks he's 5 like his sister and wants to do all the things himself. Of course he is TINY, even for a 3 year old so that doesn't work very well. I took them to the park while my sister cleaned the house, which was fun but Ugh. Not a day where I can keep up with them for terribly long.

I hurt today. My everything hurts but especially my back and hips. Sciatica down my left leg, which hasn't happened in a while. My chest hurts making it hard to breathe. Thankfully I have a doctors appointment tomorrow early so I can talk to my doc about the chest pain. It's only getting worse and more constant.

I emailed someone my mom knows from washington county about volunteering with their new queer suicide prevention group and other similar groups. They pay for my advocacy training and such. I am optimistic about this and will be meeting with the lady next week or so to talk about details of the various groups and how to get involved as a volunteer. She told my mom that there is a good chance it could turn into a paid gig eventually which would be boss. Even without that I would love to get to work with these groups. Queer people need the support and are at such risk for self harm, especially with

This is a title.

No real blog post today. I am exhausted and going to bed.

Getting minimal sleep in 1-2 hour chunks isn't conducive to feeling well. Go figure.

long walk

I went for a long walk today and it exhausted me completely. 4 miles when I only intended 2.5, I made it okay-ish but when I got home I promptly passed out for a few hours. Okay like 4 hours but still.

Have to take the sinbad puppy to the vet tomorrow since he has a giant hot spot between his eyes. Mom got some information for me on a lead to do some volunteer work for a queer suicide prevention thing that is starting up for one of the local counties so I am calling them tomorrow. I also may be meeting up with a friend around noon to hang out. Going to be a busy day.

Hearts and Lungs

I have a doctors appointment saturday morning with my PCP. Woo.

My heart and lungs have been freaking me out and so painful that I have to talk to her about it. Again. I told her what was going on the first time I went in and she put me on a new anti-inflammatory to try to help calm things down. It's only gotten worse. It's to the point now where it's painful to breathe more often than not, where every day my heart feels like it suddenly jumps into triple time and hurts, it constantly feels like I am wearing a chest compressor. I can't handle it anymore. It keeps me from sleeping. I didn't sleep more than 3 hours at a time for essentially 4 days in the last week. I managed to sleep okay last night through sheer exhaustion.

To make up for it I have spent most of my day shaking uncontrollably. My hands are shaking so bad that I can barely use them. It feels like I am shivering from cold only I have been hot all day. I don't have a fever that I can tell but still. I had to stop driving for a while today and sit to eat because I was shaking so bad I didn't feel like I should drive. I nearly drove myself to the hospital. If I hadn't managed to calm down over the course of like 15 min I would have.

Feeling so out of control of my body is scaring me. It's worse than the pain and nausea. Feeling like I have no control over how I move is a nightmare. I have never done street drugs, I rarely ever got drunk (and don't drink at all anymore) because I want to be in control of myself. Instead my health is taking that away and there is nothing I can do to get it back.

It's amazing how much we take things like being able to take a breath of air comfortably for granted.

Restless

I'm restless tonight. 

Did the other half of my pt despite having done a full core workout at the appointment today. Took a shower. Went for a walk. Then another. Still restless but my body can't handle any more physical exercise now. I'm hot and sweaty but its so windy I'm hesitant to open the window like I usually would. 

Hands are too sore to crochet more.

I took a full sleeping pill why can't I sleep? 

Woohoo PT

I just stepped in dog poop while attempting to not get rained on while I was outside.

That rather sums up my day. PT was rather brutal today. My therapist stretched out my back and hips and it was freaking painful. Then we worked with some elastic resistance bands and on a couple of machines. I was completely exhausted since I couldn't sleep last night again thanks to being unable to breathe very well. When I finally got home I said hello to my mom (who was grumpy having been to the dentist today) and then passed out for nearly 4 hours. Grabbed noms and hopped online. Spyparty stream and then Caley did a magic draft. I watched while working on some new crochet patterns I found. My hands hurt now but I got 2 successful squares done. I am going to try to make a blanket for mom and dad.

The book I was looking forward to got delayed until the 4th. Boo.

It's nearly midnight and I am thinking I will skip playing Smite with the guys and just go to bed. I am exhausted again and my body hurts. It's a night for a whole sleeping pill rather than the half I usually take. I am just so tired of hurting and having my skin randomly freak out and being so tired. I sent in a request for a doctors appointment to see if we can do something so that I can breathe without it hurting like hell and so that my heart stops waking me up by racing and hurting.

If I didn't need a good nights sleep so badly I would go steal my puppy to cuddle tonight but he tends to wake me up more than I can afford right now.

Larp season is coming up and I am updating my item tags and character info. I'll be needing to finish the long dress that I started and if I can manage it I'll be making a new skirt for her too. I need to find a new top that will look good with the skirt. Maybe make a few more accessories. Not sure. My girlfriend, her partner, her friend and two of the guys I game with all need to get their character stuff together and send in item tags too. Going to be a busy month getting ready for the new season. I can't wait for it to start though, I love LARP and miss my friends I don't get to see very often outside of the season.

Sick and tired

I'm completely exhausted today. Sick to my stomach and sore as hell. My hands are swollen and my feet hurt. I had to leave game early because I was nearly asleep and didn't want to get sick while I was there. I had to miss dinner with the girlfriend because I was so tired and sick. I hardly get to see her and I hate missing time with her. We're queer platonic and I need that contact, especially when K is complicating my brain. I just wish my body was more reliable. 

Last pt appointment tomorrow. And my book I've been waiting for should come in tonight. At least there is a bright spot today. 

Tears I Cried

Well I didn't expect to go shopping today but I ended up at Macy's with K to get him a new dress shirt. It could easily have been worse. We ended up hanging out at his place after attempting to play the new Dynasty Warriors 7 Empires. Which was awesome, I hung out while he got ready for his LARP and well. I completely broke down crying. I have no idea why, everything just fell apart in my head. Thankfully K was wonderful and just held me until I calmed down. He was really wonderful.

I miss being with him so much it's almost a physical pain sometimes but if he is happy and I can be his friend it's going to have to be enough for a while. I like his new girlfriend, she's someone we LARP with, which is good and bad. I just wish I had that support still.

He told me he misses me sometimes.

-sigh- Relationships are complicated.

"You take the tears I cry and lift me up to the bluer skies Yes, you gave me hope Gave meaning to my life, I love you so 

You never asked me why, just smiled and took all the tears I cried Baby, now I know What life means and what I am living for"

Things like what happened today remind me of one of my favorite Siam Shade songs; Tears I Cried. If you haven't heard it, here it is:

A day full of small children

So I have spent essentially my whole awake portion of the day surrounded by my niece and nephew... I love those kids to death but they are freaking exhausting >.< SO much energy. Even when they get tired they have way more energy than I do. It's funny and yet even when I am not playing with them it's tiring.

We traced around them with their arms stretched out beside them, let the kids color them and mom will be sending them to my grandmothers tomorrow. Paper hugs since we can't see them very often. Too freaking cute.

Nothing new on the doctors front for me. Have my last insurance assisted PT appointment the 24th and then still another month until I see the Rheumy.

Sleeping is hard

Totally didn't sleep at all last night and trying to catch back up during the day just didn't work. I managed to get to bed at about 10 this morning and then my sister called at 2 and chatted for a while. I tried to go back to sleep and over the next 3 hours woke up at least 4 times with my freaking heart fluttering and my chest hurting. Again. Ughhh.

Tried to play smite with some friends and between being super tired and my hands getting steadily more inflamed I could only play like 2-3 games. =( I am so tired of this and I still have another month before I see the rheumy.

I gets things done

I got lots done today, at least for me. I vacuumed and took the trash out of my room and downstairs and I did dishes and made horns for a lovely friend of mine. Then I played smite and even a bit of spyparty.

Oh and I did my PT.

I am however, now exhausted and out of spoons but still. got stuffs done so yay.

I really like my new craft stuff shelves. I can even set up my polymer clay oven again woohoo.

organization!

I will never claim to be a neat person but I have a love for organization that is rather ridiculous given how messy I tend to be. I have been getting edgy at how I can't find any of my crafting stuff when I want to as it has all been in a big rubbermaid for the last 6 mo. So I went to IKEA today (which I am not generally a fan of, but it's not quite as awful on a weekday early afternoon) and I got a new shelf and a drawer unit. They are awesome. I have shelves for my fabric and baskets for the yarn and drawers for the smaller crafting supplies and YAY!

Sadly I ran out of spoons after I had gotten about halfway through what all I wanted to do but still.

Happy panda.

Lazy day

I can honestly say that I have done essentially nothing today. It was rather lovely to be honest. I lounged about and read 3 new books that I found (which were great) and did nothing. I have been feeling so sick and tired and all that, I rather needed this. I don't feel particularly better physically but I do mentally. I would likely still be reading save the series only has 3 books in it at the moment so I have to wait for more to come out.

I love reading. It's my escape and sets my imagination going like little else does.

Sorry

My hands are hurting like mad and I am exhausted sooo. no real post tonight. Sorry everyone. <3

Arthritis in my... jaw?

So I wake up after an enforced very long sleep last night (took a full dose of sleeping pills, something I don't normally do) to find bruises on my knuckles and to find my jaw super painful. Like hurts to talk, to chew, to just sit here doing nothing kind of painful. I was doing okay most of the day all things considered but I crashed again, hard. Managed to eat something even with a very upset stomach, went for a short walk and am now trying to convince myself I don't need to take a nap for the first couple of hours of my buddies stream.

Not sure I am going to manage to convince myself of that to be honest.

Game tomorrow and a date with my lovely girlfriend. Going to be a long day to be honest. We shall see how I manage it.

I am beat

I am so exhausted today it's horrendous.

I watched my 3 year old nephew for an hour or two this afternoon, which is fine but I was supposed to stop at the store on my way home and I was so fatigued that I nearly fell asleep driving. I went home to nap instead and slept for around 4 hours. I've done essentially crap since but I perked up in the evening and wanted to go out and hang out with friends. Nothing strenuous. Grab dinner, play games that kind of thing. No one was available. Not even my girlfriend. So I stayed home. I've managed a couple of games of smite with the guys online but now I am just thrashed again.

I decided to go for a walk to perk up a bit and had to stop halfway because my stomach was rebelling. I haven't felt so exhausted and crap for weeks. Not that I have been well per se but I haven't felt so tired that I couldn't make even my short walk like this. My doctor seemed to expect that after a couple of weeks on the thyroid meds and the vitamin D I would be less tired all the time. Hasn't happened yet.

I called the rheumy today since I haven't heard from them yet. The next available new patient appointment is march 25th. Soooo I am on the wait list for an earlier appointment and get to hope.

Not going to manage my PT today, just too freaking tired and not feeling well.

Poor lux-y puppy

Took lux to the vet today to get fixed. The poor thing is quite pathetic. She's confused and tired and just wants to cuddle. So we deposited her with world class baby cuddler dad on the couch and she immediately passed out snuggling up next to him. It was cute as a freaking button. Now shes sleeping on their bed (normally she sleeps on the dog bed) and the sinbad gets to sleep in here with me so he leaves her alone. He's quite the pathetic dog today too. He missed lux all day and has been super needy. So he got to go to lunch with me downtown and took a nap with me for the afternoon. Now he gets to sleep on my bed tonight (the puppies don't get to spend much time on my floor, too much for them to get into) and he's still pouting. He spent nearly the whole time we were downstairs before dad and I got lux going from leaning against me to the door to look for lux. It was sad. So he gets spoiled too, not like he knows whats going on either or why he can't cuddle with his sister like they usually do.

Oh and I forgot, everyone in my house is sick. My mom has yet another of her chronic sinus infections and is doing anti-biotics again. She is finally going to an ENT specialist to get things checked out. I swear she has had a sinus infection more often than not for over a  year now.

Had PT today, 930am is too early for pt but whatever. More new exercises to do and annoyance that my insurance company will only authorize two PT visits soooo yeah. It's going to be an all at home programme. Ah well, no different than usual then.


Lux spent a solid 5 min like this on the couch before she finally got down. That didn't last long as she wandered around aimlessly and looking confused.

So I deposited her on dad

Sinbad had fun in the car with me today so I don't feel so bad for him

Sleep

I have a very complicated relationship with sleep.

I love sleeping, completely and totally love being in my dreamworlds creating stories for myself to live in. I've never been particularly good at falling asleep however. Primary insomnia. So innocuous sounding until you realize it means living awake for hours, desperately tired, wishing you could sleep. Now I have the pain and discomfort to make that even worse. And the medication to help the pain that makes me jittery. So I also have sleeping pills. Half an ambien used to knock me out. Now I don't feel it. A full one however means ill sleep at least 8 hours. God for it if I need to function before that however. Or for that matter if I get distracted and don't end up going right to bed when they start to kick in. 

Secondary insomnia. Waking up repeatedly and not getting into REM sleep. The pain makes this true. If I manage to fall asleep when the half an ambien kicks in I can stay asleep 4 hours at most. And then I wake up. Over and over again. Sometimes because of pain, sometimes because my body is now a combat zone.

I can't remember the third type of insomnias name but its where you have issues waking up. I wake up at least part of the way reasonably easy but not entirely. It's so easy when I should be getting up to just stay in the twilight world of sleep. It also means I deal with sleep hypnagogia - where you wake up but your body is still in lock down mode for REM sleep. You can't move and it feels like something's sitting on your chest and the suspension of disbelief from dreaming is still in effect. Essentially you're trapped unmoving in a waking dream. Fun fun. 

The first I've dealt with my whole life. I love being awake at night. I'm most Awake and alert then. But the world isn't so I got little sleep quite often. Now I can sleep during the day but even if I want to go to sleep I can't (like tonight) and I get to deal with all the other fun issues that come with chronic pain, fatigue, medication and of course, completely unstable sleep patterns. 

Oh, and sorry if there are any strange auto correct typos, I'm on the iPad and don't have my glasses on. My eyes hurt today sooo I am avoiding putting them back on. I have to take my little dog lux to the vet at 730 this morning. That's in 4 hours. My everything hurts and my chest is all inflamed again making breathing hard. Oh, and the damn rash on my hands went away for like 12 hours but ts back now. Goodie goodie gumdrops. 

PT and rheumy

Missed a call from the PT people but I got the letter from the insurance people in the mail. They approved 2 pt session. Two. Seriously? How is that going to help? I'll be calling the PT place tomorrow though.

Still waiting for the rheumy to call but if I don't hear from them by thursday I will be calling them.

Got a planner and started writing the contact stuff and my appointments down. It's depressing to write down all of my diagnoses and appointments and tests and the like. Boo.

Sick everything

So my dad has some horrible intestinal infection

My dogs been throwing up (poor sinbad)

Lux is a brat since sinbad's sick and she's getting fixed Thursday so fun fun

Thankfully mom seems to be okay.

I in the other hand feel like crap.

My hands are swollen and painful and now I have a rash on my palms, my joints hurt, my stomach is upset, I'm bleeding like a stuck pig over every nick and I can't sleep again.

Still haven't heard from the rheumy but the cities been shut down due to snow since Friday. If I haven't heard from them wends ill call. I think the NSAID I'm on is making the bleeding so bad so I may have to call the clinic and talk to my doctor, still havent heard from the pt people so ill call them Thursday too. 

It's my friends one year anniversary of having lupus. She's throwing a party Sunday. 

I meet the qualifications for the diagnosis too. My doc wants another opinion - hence the rheumy. I just want to function again. Have a job, a life. Something. Thinking about it brings tears to my eyes because I have had to put everything I love aside just to function at the level I do and it's not enough. 

I tried to read a book Sunday and despite loving the series I could barely get through it since I can't concentrate. I hate this. 

So much. 

This is sinbad, he's my snuggle buddy tonight. 

Even if I can hear his tummy make funny noises and he snores. 

I love him dearly.

Well isn't this accurate.

Snagged the link from the lovely Anna's blog 365 Lupie days:

Things not to say to a mother with lupus

While I have no kids nor do I plan on having kids
and I haven't actually gotten the diagnosis yet
still has some fantastic points.

Puppies

My dogs have been both adorably cute and pains in the rear with this snow. Everyone is stuck at home, and they keep wanting to go outside and play but as soon as they have been out there for 30 seconds they want to come back in because it's cold. But then they want us to go outside with them. >.< I love these dogs dearly but jeeze.

I don't really have much to say today since I can't go anywhere or do anything.

Still waiting on the insurance company to get their act together and approve my rheumy and pt.

Snow!

Yay! We have real snow! Like 5 in of snow, all powdery and pretty. I love it. We are snow bound for a few days as no one here is ready for snow like this. We barely have any snow plows here even. Apart from the joint pain I have been quite enjoying getting to walk in it ^_^

Makes for a good day to curl up and watch sailor moon. Which of course is what I have been doing. Nearly done with season 3!

Nights and music

"A still more glorious dawn awaits.

Not a sunrise, but a galaxy rise. 

A morning filled with 500 billion suns, 

the rising of the Milky Way." 

- Carl Sagan (RIP, you are missed) 

I love the night time, the dark, the quiet and the stillness that it brings. I love walking at night, in my small mountainside community, in the woods, in the city. All of it. Each has a different flavor and feeling and all of it brings me peace. My damn body is determined to take that away it seems. I don't like mornings and I am so exhausted all the time that mid day is spent asleep usually. Nights are where my brain is alive and working and where I can be at peace. Until the arthritis hits. The stabbing pains in my back and hips. The tightness in my chest. The sharp pains when I breathe. The bone deep exhaustion. The muscle spasms. The headaches. Some nights they don't hit till early morning - 5, 6, 7am. Days like tonight some of them hit over a half an hour. I go from feeling good. Playing games with my friends, talking laughing. Being normal.

"We are all connected;

To each other, biologically

To the earth, chemically

To the rest of the universe atomically"

- Neil deGrasse Tyson 

(One of the few I consider a hero, even after meeting them) 

Then one thing after another spirals out of control and I need to rest. I need to sleep. But I can't. I don't get my nights of walking anymore, I can't risk being too far away from home at 2am. I don't get to game most nights more than an hour or two anymore. My back and my hands and my head fail me. I don't get to sleep either. I lie down in bed waiting for the sleeping pills to take me only to be kept up for hours by muscle cramps and spasms that set off all of the other pains. I curl into a ball whimpering, wishing I could just pass out. Sometimes I take a hot hot shower to relax what muscles I can only to lie back down after. Warm and content until the pains come right back and take me away.

"One of the great revelations of space exploration

Is the image of the earth, finite and lonely

Bearing the entire human species

Through the oceans of space and time"

- Carl Sagan

I hate that my body wants to take everything away from me. I love nights. I love sleep. I love going and doing things. Seeing new things. Talking to people. Dancing and playing. Instead so often I can't do any of this and have to just keep walking in circles trying to keep some of my muscle strength up. Instead I lie in bed trying not to cry because my everything hurts in a book's worth of ways. Instead I stay at home, alienated from my friends because I hate to burden them with my company when I go out. We used to walk for hours all over town. Now I can barely make an hour at a slow pace with periodic stops. Usually I need a cane if I am going to walk for a while.

"As the ancient mythmakers knew

We're children equally of the earth and the sky

In our tenure on this planet, we've accumulated

Dangerous evolutionary baggage

We've also acquired compassion for others,

Love for our children,

And a great soaring passionate intelligence

The clear tools for our continued survival"

- Carl Sagan

The things that I love doing have been taken away from me by my own body and now I feel like a foreigner stuck in a body whose language I don't speak and whose people are hostile. It's a daily struggle just to figure out enough to function let alone do more. I wish there was some way to translate this all and to somehow fix things. I shouldn't be alien in my body, I shouldn't be at war with the very thing I need to keep my self alive.

"Every cell is a triumph of natural selection

And we're made of trillions of cells (Within us is a little universe)

Those are some of the things that molecules do

Given four billions years of evolution (We are, each of us, a multitude)"

- Carl Sagan 

As an atheist and a methodological naturalist I can't even take comfort in the lie that when I am finally done with this body, when I am finally dead, there is something to look forward to. Because there isn't. The self, the mind is a function of the brain. When my body dies, and my brain dies, my self dies as well. There is no emergent phenomena out of dead brain. No emergent self, curious and wondering at the universe that could be so complex as to form something as amazing as the brain. There is no soul, no essential spark, that will ascend to heaven, or reincarnate, or live on as a ghost. Just nothing. I can't even wish for that kind of end because that would be it. This is the only chance I have. The fact that I got a crap body to ride around in is the breaks I got so I need to figure out how to live. It's just hard when each day is a constant fight with your body to do what needs to get done let alone what you want to do.

The random quotes are from Symphony of Science's fantastic music. If you like them (and the videos I link to at the bottom) check out more of their stuff at their website.

"There isn't a sharp line dividing humans
from the rest of the animal kingdom

It's a very wuzzie line

It's a very wuzzie line,

and it's getting wuzzier

All the time

We find animals doing things that we,

In our arrogance,

Used to think was "just human""

- Jane Goodall

"There is a powerful recognition                                         "The universe is made of 

That stirs within us                                                            Twelve particles of matter

When we see our own little blue ocean planet                        Four forces of nature

In the skies of other worlds"        

- Carolyn Porco                                                      That's a wonderful and significant story"

                                                                                              - Brian Cox

"Onward to the edge

We're moving onward to the edge

Here we are together

This fragile little world"

- Neil deGrasse Tyson

After that why don't I cheer you all up with some symphony of science.
First an Ode to the Brain:

Then one of my favorite songs ever. A Glorious Dawn, where the quote at the top of the blog today comes from. It features one of the best communicators of science we have ever had, one whose loss has effected us all in so may ways. Carl Sagan.

And finally a reminder of how we are all connected to each other. This one is called we are all connected.

Okay one more... about the secret of the stars. 

Friends Birthday

It's a friends birthday today and she wanted us to dress up for recycle tonight. I am so exhausted and hurting that there is no way this is going to happen. I can't handle the wig and wings and such tonight. Hell I am  barely going to be able to handle just /being/ at recycle tonight. I really wouldn't be going if it weren't her birthday. I just hurt so bad all over.

And it's beginning to snow.

Tiger balm

My hands have been hurting horribly so I have cannabalized a tiger balm patch and stuck it on my left hand. Hopefully this helps. Sorry if the posts are short though, hurts to type. <3

Hands

Supposedly my hands are doing stuff but between the horrible inflammation and the pain to use them I don't believe it. My left hand especially hurts so bad I can't type on my keyboard anymore.

I was playing smite with some friends but I can't anymore tonight. It hurts too bad and my left hand is for wasd (movement) sooo makes it hard to move well which is rather important when you play super team support like I do with chang'e.

I'm so tired of this stuff.

Nerd bowl

Today is Superbowl Sunday. As I can't stand football, don't want to be around people that are drinking and don't feel well I'm at my buddy Ryan's house for nerd bowl. We're here to make new d&d characters but instead they are watching evil dead.

I hate horror movies.

So I'm sitting on the floor while they all sit on the couch watching a crappy horror movie. I feel pretty alone even with four other people. I'm exhausted and don't feel well.

Can we make d&d characters yet? I prefer that kin of nerd than shitty zombie movies.

Out of spoons

I had a very long day.

The doctors appointment this morning.
Then Henry's birthday.
I caught an hours nap
Then frozen with mason and the rest.
Then home, play with the puppies and watch sailor moon.
Got an episode in and my body failed. First my stomach, then my muscles, then the headache and the shakes.

I'm all out of spoons and I didn't realize I'd used so many. Its hours before I usually sleep but I feel so battered that I can't keep going. I'm going to have to do a bunch of self care tomorrow to recover.

I hate this

Lab results are in

The lab results are in, but I still dont really know what's going on.

I am now on thyroid medicine and cholesterol medicine

I have a recommendation to a rheumatologist now, because of the positive ana test. My doc still thinks its lupus but she's not comfortable making that call so - the rheumy. I have to wait for the insurance okay and then the clinic will call me and set up an appointment.
-sigh-

I had to get one of those old lady pill things so its easier to keep track of the meds.

Its my nephews 3rd birthday today and were eating pizza and cake. My niece is here too. She's 5. I love these kids but they just remind me of how exhausted I am all the time. I'm going to see frozen with them this afternoon, should be fun.