Saturday, April 5, 2014

Long silence

Forgive my long silence, I've had a really tough time lately and haven't been on my computer. I plan on doing a real blog post this weekend, after I fix my headset - which is of course, broken. >_> be amuse that was my luck in the last two weeks.

Sunday, March 23, 2014


Really? Cause multiple doctors appointments while my parents are out of town aren't enough?

Saturday I had a flat tire, A's birthday party at chuck e cheese and a freaking ticket for expired tags
Sunday I took my parents to the airport at 4am, had game canceled, took the dog with me while I went to get my oil changed to find out that both freaking fog lights are out and can't be replaced because they are corroded and then got pulled over AGAIN for the tags and I can't freaking get deqed until tuesday. And my pizza was late so I was freaking hungry and I hurt all over and am sweating and hot and this damn stress isnt helping.

Oh and monday I have 10am cosmos watching with B, 12am pick up A, 1pm watch my sisters kids M and H, take care of the dogs by myself, deposit the money to cover the freaking ticket and like not explode.
Tuesday I have a 10am rheumy appointment, 12am pick up A, get deq done in sherwood, go to the dmv, get my stuff together for LARP next weekend so that wends and thurs I can get the things I am missing. I think I am missing a set of petticoats and need a new top for the character. Oh and friday I have a 1030am endocrinology appointment and have to pick up people for LARP and find the new campsite in a reasonable time.

And I have to get my meds tomorrow because I am out of a bunch of them and keep forgetting to refill them which I did today and they are ready at rite aid. oh and I am not on the forums for LARP yet for some reason so I can't get the bloody directions for LARP so I don't know where I am going and I am so freaking stressed. And I need to send in that damn ticket too before I leave for LARP that I am afraid my everything is going to flare up because it's bad already and I have to deal with it alone and it's getting tough.

I am scared what the rheumy will say and the endo will say and I need to call the OHSU echo labs to get my holter monitor set up and I don't even know the number for them so I have to call the main desk and I hate talking on the phone because I get all nervous and I don't know how I am going to deal with the dogs for the week on top of all this shit and I am shaking, sweating, and despite trying desperately to destress and self care all afternoon I feel worse than I did when I got up.

I really fucking need a friend that can be here for me and K is too busy for me and I haven't seen the other K in like a month and without game today the only contact I have really is A and her mom L and I just. UGH. I am either going to pull through this by some freaking miracle or going to crash and burn. Sorry this is so disorganized and messed up I am a freaking basket case right now. Not having my muscle spasm meds isn't helping because my muscles are twitching like mad and the stress is just making it worse.

I am going to go back to watching criminal minds now and ignore the world again.

Friday, March 21, 2014


I am so boiling hot. Like, sweating profusely and unable to cool off no matter what I do. All freaking day.

I wish I could just sleep tomorrow but I have A's birthday at 230 at... chuck e cheese. Ugh. And then I have game sunday. As next week is spring break I am watching A earlier in the day. BOO. She's great but still, it's tiring.


>.> I had managed to shake my obsession with origami for a bit until mom asked me to make one of her kids an octohedron. It's pretty. I'ts been so long since I have done it though that I am rusty on combining propeller units and it took me way too long. I need to make a box for Ari's birthday present too >.< ah well.

I have an appointment for a sleep study but it's not till freaking June. -sigh- At least the important ones are next week.

Wednesday, March 19, 2014

all the doctors

It was doctor contact day apparently.

I got a call from the endocrinologist, I go in the 28th
I got an email from my doctor, I am doing a heart monitor and have to call the echo lab
I go into the rheumy the 28th

And of course all of this is happening the week my parents are in Cancun for spring break and I have to watch A more because of spring break. All sorts of fun times >.<

Monday, March 17, 2014

I hate sleep

In many ways I hate sleep.

Or rather, I hate my relationship with sleep. I desperately wanted to sleep last night, I went to bed at a reasonable hour, I took my meds, I took my sleeping pills and I didn't sleep. All night. I manged a couple of hours of sleep at like 830-9am or so. Boo. Now I am exhausted and all I want to do is sleep but I know that if I go to bed early that I will be awake at like 3am and not able to sleep. Again.

I forgot to call the sleep study people because I was too bloody out of it.

Tsh and t4

Just a quickie, I got my lab results for the tsh and the free t4 levels from when I was at the Er.

My tsh is now .08 o_0 it was 6.95 went a bit far in the wrong direction for sure.
My free t4 is at 1.3 though I don't know how it's different since we didn't check this. 

So yeah, medically induced hyperthyroid yay. Now I know why the Er doc told me to stop the thyroid meds. >_> it gets to even out a bit more while I wait to see the endocrinologist. 

Sunday, March 16, 2014

Oh hai weekend

I kinda forgot what weekends were like when you had time off and could sleep and putz around. It's only been a week and I was all woah. It was nice, I was able to recover from the ER fun and I got a 'new' psp and have been playing the crap out of disgaia.

I see the rheumy in 9 days.
I am calling the sleep study people tomorrow since that got approved.
I am waiting on the endocrinologist to get approved.
I am waiting on my primary to message me back after my email about the ER and my heartrate and such.

All the waiting. >.<

Thursday, March 13, 2014

Aren't Er visits fun?

So the chest pain I've been experiencing spiked sharply today after I picked up A (the young girl I've been watching). I ended up going up to OHSU emergency because it was so bad. It's amazing how fast you get triaged when you have chest pain. After a bunch of readings and an EKG I got set up in a room. Then I got hooked up to the fancy heart monitor and a bunch of blood drawn and then an x-ray. After talking to 4 doctors about the same things over and over and about 4 hours we got results from the tests and such. 

No evidence of blood clots, reasonably normal EKG, nothing abnormal in the X-ray, my heart rate was high but after rest not what it was when I came in. The pain went down, though it is still there. I got told to go off the thyroid meds because my thyroid level had gone in The opposite direction as it had been before. Now I got referred to an endocrinologist to deal with the thyroid stuff and get to follow up on everything with my gp and the rheumy. 

Now I get to sleep because I am exhausted. 

Cochrane reviews are beautiful things.

This post is going to be a science and research heavy post so I am going to attempt to organize it in such a way that you can skip things you aren't interested in. I look at a lot of research regularly. I especially look through PubMed and the Cochrane reviews for new information on things like degenerative disc disease and treatments for chronic lower back pain. This stuff is important for me because I like to use science based treatments and don't want to waste my time and money on things that don't have evidence of safety or efficacy. To give you an idea of my process I am going to walk through what I found today on Cochrane. One of the things to note about these is that all I can really see without logging onto my school's website is a short abstract and the key results.

Opioids for the treatment of chronic low back pain. 
1. People in the treatment group reported less pain and less difficulty performing daily activities in the short term
2. No randomized controlled trials showing efficacy or safety of opioids for more than 4 months.
3. Current literature does not show an increased benefit when compared to other analgesics
4. The quality of evidence in this review was 'very low' to 'moderate' 
This study confirms something I was feeling myself. While subjectively when I was taking the opiods it felt like I could function better after nearly a year on them daily I realized that I still felt the pain but I just didn't care anymore. I am no longer on them and am taking other meds instead and I feel like I function better now since I don't have the fuzzy head I got on the opiods. I am glad I did because of what 2 says: no evidence for safety for use over 4 months. I used them a lot longer than 4 months and 3 shows that their isn't a compelling reason to pick something whose safety isn't confirmed when there are other options.

Non-steroidal anti-inflammatory drugs for low-back pain. 
1. In patients with acute sciatica (which I have) no difference was found between NSAID's and placebo.
2. there are few data on long term side effects
3. 42% of the studies were considered high quality 
I am currently taking a NSAID for my back pain and this makes me question that. The 42% at high quality is indicative that before I do anything I need to do more research into evidence for efficacy. The side effects that are known for NSAID's are scary enough (things like stomach ulcers) that I want to make sure that this is going to help. I have been on them for nearly two months and I have been hesitant the whole time but I do like to follow doctors orders and she only wanted me on them short term anyway. I have another 2 weeks on them. If she tells me to take another batch of them I am going to ask for evidence.

Herbal medicine for low-back pain
1. Devil's Claw, seemed to reduce pain more than placebo and about the same as vioxx2. Willow bark, reduced pain more than placebo and about the same as vioxx3. Cayenne in plaster form, reduced pain more than placebo, about the same as homeopathic gel Spiroflor SLR. 4. Adverse effects included mild, transient gastrointestinal complaints. 5. Trials were moderate to high quality. 6. half the trials authors showed a conflict of interest. 7. There is no evidence to show that these are safe and useful for long term use. 
I am going to preface my thoughts on this one with my personal conflict of interest here: I am a skeptic. It is going to take a lot of evidence for me to think that it's worthwhile to use an herbal product. They do have effects (unlike homeopathy) but they are not standardized or controlled enough to warrant their use. In the US there have been huge issues with herbal product contamination and even outright substitution of the products claimed. I'll leave that bugbear there though. 

As Vioxx has been removed from the market due to adverse effects these studies are not comparing to a legitimate product but beyond that of course willow bark reduced pain more than placebo. We already have something that does that, which is synthetic, derived from the bark of the willow tree, and doesn't require guessing dosages. It's called asprin. The language for devils claw is suspect to me, it seemed to reduce pain? How so? It doesn't tell me that it was statistically significant or anything really. Eh. As for cayenne I have already made my thoughts on homeopathy clear so all this tells me is that it does as well as a gel plaster would. The biggest red flags here for me are 6 and 7. conflicts of interest which will lend a study a bias towards showing an effect unless carefully controlled and with a moderate to high quality there are going to be things that will bias the data. 7 tells me that we don't know if these are safe in the long term and if you have chronic pain you are looking for something that is safe in the long term. Until that data comes in I remain, as ever, skeptical, 

Transcutaneous electrical nerve stimulation (TENS) versus placebo for chronic low-back pain
1. It is unclear if TENS is beneficial in reducing back pain intensity due to conflicting evidence
2. TENS did not reduce level of disability 
I really only wanted to look at this one because I have a TENS unit and I use it when I have to sit for long periods of time, like at school. I never felt like it actually helped reduce my pain but it did help with the heightening of my pain from sitting for long periods. The effect also went away shortly after stopping the current so it's not like it was of great use but at that time even that was better than nothing. There were no indications of risk apart from the minor risk of a heat rash from the current where the diodes are placed. This review tells me that the evidence is contradictory and thus inconclusive.


I am going to leave off at this point, these were just the first few studies I looked at and I will look through studies like this every couple of weeks. Sometimes I have a specific treatment modality in mind, other time I am looking for a condition (like in this one). I use this look at the evidence as a mental map of what is going on in the various treatments so that when I go to the doctor and she asks me if I want to try acupuncture I can say no and have an evidence based reason why. I also am sure to look if there are reviews for the medications I am on or the treatment paths that have been offered to me. I am open to a lot of experimentation at this point because so many things have been tried and so many avenues of treatment have frankly been shit either due to side effects, efficacy or both.

Ideally I wouldn't have to do this, my doctor would but I completely understand. Especially for my gp there is so much going on in the literature that I don't expect her to be up to date on the most current findings. I do however expect her to know that something like acupuncture has been shown not to work, or that homeopathy is bullshit. I know that in PDX it is expected that she offer homeopathy, and indeed most doctors that have seen offer it say it in that 'please don't kill me I have to say this' voice. I have however opted not to go back to specialists because of their focus on so called 'alternative' medicine. No. I go to doctor to get medicine not have bullshit crammed down my throat. If I wanted that I would see a homeopath.

Tuesday, March 11, 2014

Walk to end Lupus

I am blown away by the generosity of my friends.

I have joined Anna's walk to end lupus team and my goal is 100$. No where near her's but still, that's more feasible for me all things considered. I told the group I game with that I was doing this and asked that if they happen to have a little extra money and could donate that it would be amazing.

I asked yesterday.

Today a Dutch friend asked if she could paypal me her donation since the site doesn't take her kind of bank card. She donated 15$
Then another friend, a Jr High student, asked if he could paypal me his donation since the site doesn't take prepaid cards. He donated 25$

The guy that is our main evening streamer let me promote my walk on his stream. Then another person made it into a command so that !lupuswalk would promote my page. They used it. More often than I would have asked for donations for sure. I am not good at asking people to donate money to something, even charity. The fact that these awesome people from around the world have contributed and others in the stream chat have said that they will when they can over the next 6 months is just phenomenal.

If you're interested in donating or the lupus foundation of america's pacific nw chapter check out my donation page here.

To everyone that donates:

Thank you. Really, those words aren't enough to convey the gratitude I feel for donations supporting my walk. I am honestly touched by your willingness to donate.

Monday, March 10, 2014


So I am now watching a friend of mines kid after she gets done with school essentially m-f from 2pm till her mom gets off work (either 6 or 9pm). A is 8 years old and a good kid but wow, exhausting >.< this should be um, interesting?

My parents are both sick again. Mom is doing okay but dad is not. He is so light headed he can't really function. It's worrying. I hope that he is feeling at least a bit better tomorrow. =/

I am doing alright all things considered. The arthritis is down and my back is doing okay. My chest is still really bothering me but all in all it could be far worse than it is. We will see if that continues tomorrow since I have the dogs tonight in my room so that they don't bother mom and dad who really need to get a good nights rest.

Sunday, March 9, 2014


Today was the premier of the new Cosmos featuring Neil deGrasse Tyson as host. This show has so much meaning for me from the original show where Carl Sagan was the host. I came late to the original Cosmos, and late to understanding Carl Sagan as a scientist and a communicator of science. Sagan died in 1998 and while I was an avid astronomy lover and wanted to be an astrophysicist when I grew up I didn't entirely appreciate Sagan until years later. In 1998 I was still a believer in a lot of pseudoscience, when I rewatched the show in 2006 it was like I had never seen it. It was an inspiration and a source of wonder for me even though it had been two years since I was studying astrophysics. There are still lines from that show which never fail to give me a sense of wonder. 
“The surface of the Earth is the shore of the cosmic ocean. On this shore, we've learned most of what we know. Recently, we've waded a little way out, maybe ankle-deep, and the water seems inviting. Some part of our being knows this is where we came from. We long to return, and we can, because the cosmos is also within us. We're made of star stuff. We are a way for the cosmos to know itself.” 
We're made of star stuff. That line hits me right in the feels every time I hear it. I can't help it. As deGrasse Tyson puts it; "That makes me want to grab people in the street and say, have you heard this??" Really. 

“The nitrogen in our DNA, the calcium in our teeth, the iron in our blood, the carbon in our apple pies were made in the interiors of collapsing stars. We are made of starstuff.” 
My niece is 5 and she recently started asking her mom where people came from and where the Earth came from. I ordered two books for her age group; one on the story of the universe (called you are older than the stars) and the other about evolution (called our family tree I believe). We read the first time the other day and this point, the concept that the calcium in our teeth and the carbon in our nails and the air we believe were made in stars. The idea that the air we breathe was also breathed by the dinosaurs awed her. She stopped helping me read and looked at her nails with such an expression of wonder that I was momentarily unable to speak. This here is the same wonder I feel when I think about that, the same awe. 
“We have begun to contemplate our origins: starstuff pondering the stars; organized assemblages of ten billion billion billion atoms considering the evolution of atoms; tracing the long journey by which, here at least, consciousness arose.”
At 5 years old she is contemplating her origins. Wondering at the universe. I may never want to have children myself but here is a child that has some sense of how freaking amazing we are. It started off with an innocent child's question to her mother and because I am so determined to help foster her curiosity about science that I went out and got a book to help her understand the answer to this, such an important question, I think that just a little of that wonder and awe has been increased. My whole goal for any influence I might have on this wonderful bit of star stuff that I have been privileged to help grow is to keep that wonder alive. To keep her asking questions when she doesn't know something and to give her all the tools she needs to find out the answers. 
“We are made of stellar ash. Our origin and evolution have been tied to distant cosmic events. The exploration of the cosmos is a voyage of self-discovery.”
I am still curious about things, still ask questions, still strive to understand the world and the universe I live in. This has led to some very interesting places over the 27+ years of my life. I've come to a place now where I can, with some reasonable assurance, evaluate my understanding of the universe and come to a conclusion that, if not entirely correct, is at least supported by what evidence there is. That is the process of science and is something I have come to apply to my every day life. 
“And you are made of a hundred trillion cells. We are, each of us, a multitude.”
Think about that. A hundred trillion cells and each of them were forged in the furnaces of stars that are long gone. Stars that existed before our solar system. Some of them were forged before our galaxy existed. Billions of years ago the cells that form each of us were made and we wonder why there is so much still that we don't know.
“The lifetime of a human being is measured by decades, the lifetime of the Sun is a hundred million times longer. Compared to a star, we are like mayflies, fleeting ephemeral creatures who live out their lives in the course of a single day.”
How can we even come close to expecting a complete understanding let alone something as complex as the universe or our bodies? Look at our brain, a mass of grey jelly that is capable of so much and yet has its limitations. I have been lamenting the lack of understanding of the problems with my body and yet when I put it in this perspective it is amazing that we even know as much as we do. In Cosmos Sagan and now Neil deGrasse Tyson put the history of the universe into the space of a year and look at the course of things as the year progresses. The big bang is at midnight January 1 and current time is the last seconds of December. The whole of human history doesn't even take up an hour on that calender. It barely takes up minutes from the first evidence of humans to now. It's infinitesimal. The history of our studying the immune system and the body in a way that makes any sense doesn't even take up a second on that scale. 

“The knowledge that the atoms that comprise life on earth - the atoms that make up the human body, are traceable to the crucibles that cooked light elements into heavy elements in their core under extreme temperatures and pressures. These stars- the high mass ones among them- went unstable in their later years- they collapsed and then exploded- scattering their enriched guts across the galaxy- guts made of carbon, nitrogen, oxygen, and all the fundamental ingredients of life itself. These ingredients become part of gas clouds that condense, collapse, form the next generation of solar systems- stars with orbiting planets. And those planets now have the ingredients for life itself. So that when I look up at the night sky, and I know that yes we are part of this universe, we are in this universe, but perhaps more important than both of those facts is that the universe is in us. When I reflect on that fact, I look up- many people feel small, cause their small and the universe is big. But I feel big because my atoms came from those stars.” ― Neil deGrasse Tyson
(all non attributed quotes are from Carl Sagan in Cosmos.) 


Today has been the day of awesome music for me. A friend of mine, Kat, and I were putting together an awesome playlist of opratic metal bands to listen to during the stream. So many new bands and so many awesome bands I already knew that I haven't heard in ages. The things that have made it to my pandora station so far are: Epica, todesbonden, within temptation, e nomine, midnattsol, delain, leaves eyes, nightwish and battlelore. So happy about this. Especially on a day where my chest pain is preventing me from feeling entirely comfortable.

I did manage to run some errands today so I have a new book on chinese knotwork, some new yarn colors for the afghan and a container to put all the squares in. I think my side project is going to be to make a new purse that can fit my ipad and a notebook since my old one is falling apart. I'll do it with pink granny squares, kumihimo rope for the strap and some chinese knot tassels for the fringe at the bottom. I might add some knitted flowers to the cover flap too. I am pretty sure I can make something that I really like with the pattern I am thinking of doing too. I'll post a pic when it's done, of the afghan too.

Alright, looks like I am due back on smite. Hit level 21 today. 9 more levels to go before the 25th when the beta opens. I can do it! Then I can start league play! Super exciting.

Saturday, March 8, 2014


So I totally slept wrong last night or something because I have a GIANT crick in my neck >.< Like of the can't turn my head variety. Ugh. I managed to calm it down enough that I can move but totally have not happy muscles.

I am working on an afghan for my parents, slowly but surely it's coming together. I am going to have to do at least 64 granny squares for the size that I want. 14 done so far 50 to go >.> lots of colors and different weight yarns and the like.

I've been playing games hardcore for the last two days. Banished, smite, cards against humanity. I picked up Smallworld and sunday is D&D or board game day. Then I get to watch cosmos! YAY. I am SUPER EXCITED about this show and plan on watching it each week. Something I can't recall myself having ever done before. But it's cosmos! with Neal deGrasse Tyson! All the superlatives and exclamations ahoy.

I started re-reading pride and prejudice. Woo epistolary novels. I do enjoy Jane Austen though in a rather strange way. It takes being in a particular mood to enjoy her novels though.

Thursday, March 6, 2014


I've been off the computer for a couple of days so there haven't been any updates, I am sorry for that. I got my new book on tuesday and promptly read it. Twice. It was good ^_^ now I have to wait for the next one to come out and I am already impatient for it. >.>

I am not sure that I like my new sleeping pills. Trazodone. I have been getting horrible headaches since I started taking it and while it makes me more tired I don't feel like it's actually helping me sleep. Though it's hard to tell since my pain levels have been pretty high the last week or so. My lumbar is acting up making sitting and walking painful, the sciatica is starting back up in my left leg and my chest is as painful as ever making just breathing painful. I am just so tired of hurting and I still have 19 days until I see the rheumy.

The doc has me monitoring my heart rate since it was so high when I was at the office on saturday. Frankly that is a horrible thing to have to do when things are out of control and you don't know why. I am somewhat comforted by the fact that my EKG was normal, if fast. Still, seeing your at rest pulse at 95 or so on average over 5 days is rather discomforting. One day my at rest was 85 which is nearly normal but another day it was 120, which is essentially the pulse of someone doing an aerobic workout. No wonder really why my chest hurts if my poor heart is working that hard. While smoking does raise my heart rate I hadn't had one for at least an hour when I got the 120 reading. Clearly there is something else going on, I just wish we could figure out what it was.

I had a bigger post planned for yesterday but I have just been so tired and hurting so much that I didn't get to it. Even this post has made my hands hurt from  typing so rather than say more I will leave it here. I will do my best not to have such a long unplanned silence again as I really do enjoy daily blogging. I just was so wrapped up in my own little world, escaping into a new book, that I wanted to ignore everything for just a little longer.

Saturday, March 1, 2014

Oh look, new meds.

So I had my doctors appointment today for the crap that has been going on with my chest. (IE tightness, painful breathing, rapid heart rate etc) We went over things and since I started on an 88mg dose for my thyroid meds we dropped it to 50mg, did an ekg (normal but accelerated heart rate) and she referred me in for a sleep study. Since I sleep so poorly and don't wake up feeling like I slept there is a chance something is going on there. Sleep apnea was her suggestion to check for as a drop in O2 levels would make the night time racing heart make sense. Woo more specialists though right? She also changed my sleeping meds since the Ambien isn't helping much anymore. I have trazodone now.

I have other news on a non health front but I am thinking of waiting until next week when I have more information for that. Just say it involves volunteering for Washington county suicide prevention and QUILTBAG people more specifically. Not sure what exactly I am looking at there but still. I am really excited about this and hope it works out. Nervy though because the referral to the contact person I have came from my mom so I have to be extremely professional and make a good impression. The contact email went well though but still. Meeting with the lady next week!

I am also thinking that once a week I would like to post on one of my other blogs - Queer Transformation - since I am getting a habit of blogging regularly again and I love that blog. It's about gender, sexuality, relationships, sex and all the fun stuff that goes with it. Pondering what my return to blogging post will be about and hoping to have something up by wends.

Friday, February 28, 2014

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

Thursday, February 27, 2014

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.

Wednesday, February 26, 2014

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.

Tuesday, February 25, 2014

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.


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? 

Monday, February 24, 2014

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.

Sunday, February 23, 2014

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. 

Saturday, February 22, 2014

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:

Friday, February 21, 2014

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.

Thursday, February 20, 2014

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.

Tuesday, February 18, 2014


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.

Monday, February 17, 2014

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.

Sunday, February 16, 2014


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

Saturday, February 15, 2014

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.

Thursday, February 13, 2014

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


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. 

Tuesday, February 11, 2014

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.

Monday, February 10, 2014

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.

Saturday, February 8, 2014


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.

Thursday, February 6, 2014


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. 

Tuesday, February 4, 2014

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

Sunday, February 2, 2014


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.

Saturday, February 1, 2014

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.

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.

Friday, January 31, 2014


My internet is borked so I am going to keep this short.
I find out in the morning at my doctors appointment what the tests mean. I'll post then.

Thursday, January 30, 2014


I am completely knackered today. No idea why, maybe I borrowed spoons from today to get stuff done yesterday? I didn't realize I was if I did. I slept for 12 or so hours and I am still just exhausted today. I have done almost nothing today too. I ran to the store for wrapping paper and wrapped my nephew's birthday presents. That's it. I've ate and drank gatoraid and done essentially nothing today. UGHHH I hate being so exhausted for no reason.

Wednesday, January 29, 2014

Physical therapy and errands

I had my first physical therapy appointment at OHSU's pain center today. No big surprises, I have some stretches to do and they are going to send in an evaluation to my insurance to see how many pt sessions they will pay for. It could take up to 10 days. I don't particularly care as pt has never done much for me. I am willing to do it though, I can't move forward until I do so meh. It was an early morning appointment, at least for me. I ended up running a ton of errands after and didn't get home to nap until 1pm. One of those was to get contrast dye for my dad's CT scan on friday so it was a two hospital day for me.

I also picked up the last bit I needed for my taxes and got those done this afternoon. Woohoo! I get about 1300 back total between state and federal. That's a lot of bills getting paid. I haven't been able to pay my student loans in months and my credit cards are desperately in need of paying too. I plan on keeping about 100$ for myself. I might take the little more out I need to go up to britenbush. I need a day of relaxation away from everything and that is my happy place.

If I can get my body under control I hope to some day be a skin therapist up there doing facials and body treatments while living at britenbush village. Hopefully I can get to the point where that is a possibility. 3 more days until I see the doctor again for my lab results. -sigh- getting there.

Tuesday, January 28, 2014

ughhh I hate forgetting things

So I couldn't sleep last night again. I was exhausted and wanted to. My brain wanted to. My body however was against the idea so instead I spent 2 hours in a half doze waking up fully as my muscles twitched and my joints sent stabs of pain to my brain. My hands are still shaking and my legs are still twitchy. The inflammation is bad today. I feel like my face is twice the size it usually is.

I took a sleeping pill around 7am after I took a hot shower to help me relax. I slept until I got a call at about 4pm. From my new PT guy. I had missed my appointment. Hell, I didn't even remember I had an appointment. I don't remember making the appointment. So I called their desk and scheduled one for tomorrow morning. 1015am is super early but better than trying to get there during rush hour. I feel so horrible for forgetting about it but I still don't remember making that appointment at all. I wrote tomorrows down on my whiteboard next to the info for saturday's doctors visit. I should have done that in the first place with the one I missed today but clearly I wasn't exactly in a good head place. This keeps happening more and more. I can't think so often it's driving me up a wall. I should be able to code memory and recall it. My long term memory recall isn't working so hot either. I can't tell if this is a side effect from the medication, from the chronic pain and inflammation or something else. Some new symptom of my ever increasing list of stuff that is wrong with me.

I hate that I can't work. I am so unreliable that I don't feel it would be fair to try to start a new job and frankly I don't know if I can manage the work. I want to be in a spa doing skin therapy so badly. But how am I going to give a facial or body treatment when my hands aren't working right? When I look so horrible that I don't want to go outside and show my face. When I have to use a cane to keep my balance when I am standing still. I had filed for disability and haven't heard anything back yet. I'll have to fix essentially everything after my next doctors appointment anyway so I don't really care yet. It takes so long anyway that by the time they make a decision I'll have 10x more new information for them than they can handle. I need to do it though. I can't work like this. Maybe after we get the right medications? Right. I have so little hope there. We haven't yet and while I am willing to try new ones and new combinations what reason do I have to hope that there is something out there that will make me better? I know I can't actually give up hope but it's so hard to have it dashed so often. It's hard to remember to hope when you're so nauseus you can't even think about eating, or when trying to get dressed is an adventure in not falling over, or when you haven't been able to sleep more than an hour or two at a time in a few days because your muscles are spasming every time you lie down.

Maybe I just need to go be around people? Recycle is tonight. I could go, get some water from the awesome bartender there and sit and listen to music while watching people dance. I might even dance a song or two myself. I don't really want to though. I feel so apart from the people there, even my friends. It kills me to stand there and watch while feeling so different from everyone. It hurts to know that I have to choose between dancing and moving tomorrow. I do have PT tomorrow so I really shouldn't dance. -sigh- I guess that means another night at home. Alone. Again.

Monday, January 27, 2014

Woohoo more waiting

So I got the call from my doctor today, which is cool but unfortunately they can't get me in to talk to her until saturday morning. I find out nothing until then. A week. boo. I really like this doctors office so far though. I messaged them through the online chart thing they use because some of my meds are low and they weren't prescribed through this office. I sent that message at like 1am last night, I woke up to my phone message going off at 9am saying that I had prescriptions waiting. Awesome. My last office would take days for that.

I also got my tax forms today for one of my two jobs so I get to file my taxes as soon as I get the last form. I really need that refund >.< having no job I am having issues paying the bills. Student loans and credit cards are killing me.

Lazy sunday

Today was a lazy entertain myself kind of sunday. See, since I am still waiting on test results I need to distract myself. SO, I had a pathfinder tabletop game (yes I play d&d and its ilk) and then I stopped at the awesome that is fabric depot to pick up fabric to make superhero capes for my mom (20 of them!!) and I also picked up yarn. Now, I don't do a lot of knitting or crocheting but I do weave so ya know - yay yarn. However, this was for a specific project I have in mind. Namely hand knitting a rainbow scarf with white pom poms on the ends to look like clouds. I got the idea from here and though it was freaking brilliant. I have been so gloomy lately how could I not smile by wearing a freaking rainbow like that? Not just rainbow colored either A FREAKING RAINBOW. It's fantastic. I'll post a picture when I am done with it. I have completed the red, orange and yellow sections and started the green one but I got tired and distracted by Smite.

Oh and I learned today that while my d key works for lowercase apparently it does not for uppercase. Wtf technology? Why must you hate me? First my graphics card and now this? Pffft.

I am also attempting to figure out how to refill my prescriptions with my new doctor. She didn't actually prescribe my old medications that I was taking and now I am almost out of some of them soooo yeah. Fun times. OHSU uses an online portal thing that is pretty rocking so I sent a message on there. No need to call and talk to a person or anything woohoo. I hate talking on the phone. >.< I'd rather drive down to the clinic and talk to reception than call. I know, I am strange like that but still.

Saturday, January 25, 2014

Slow day

Today has been a lazy, slow day for me.

I was feeling a bit puffy but alright until I went for a walk. I walked down the block and then half way back before my back started stabbing into me. Right where my ribs are, it stabbed into me making it hard to breathe and hurt like mad. Always fun times.

Still waiting on the doctors phone call.

Friday, January 24, 2014

still waiting

Still waiting for the doc to call with the official results from my labs. -sigh- I hate waiting.

Feeling relatively good today though. Still puffy and my chest still hurts but relatively alright. Went for a walk and almost feel like a normal person. Its strange in that it hasn't happened in so long.

test results but no answers yet

My test results have been posted. They are complicated as we were testing for many things at once. There are a few things I can draw from them even just looking at the results. Others I want to wait to draw conclusions until I talk to my doc. 

1. My thyroid stimulating hormone is horribly high. Like normal range goes to a 4 mines at nearly 7 kind of high. Not entirely surprising to find evidence for hypothyroidism in me as my dad has it. The good news is that's an easy enough fix with a daily medication and regular checks to make sure my levels are good. 

2. My cholesterol is awful. Like, seriously awful. I have high cholestorol, triglyceride, vldl and non-hdl cholesterol. Oh and low hdl. Weeee things that could mean? Higher risk of heart problems and stroke for one, but the test can be effected by... corticosteroids (like the ones I took last month?) and birth control (like the one that is in my arm?) and... hypothyroidism. 

3. We did a comprehensive metabolic panel but nothing was interesting in there so moving on to...

4. Antinuclear antibodies ana. Which was positive. Now, this isn't a yup you have Lupus kind of thing. Because there are types of hypothyroidism that are autoimmune in nature like hashimoto's thyroiditis - a common type of hypothyroidism. But its there and we will have to see. Rheumatoid arthritis, SLE, vit B-12 deficiency and the like all can get positives here. 

5. To rule autoimmune things out we also did a test for rheumatoid factor. Which was just fine. Take that one off the list. 

6. A vitamin D test was done, because it's oregon and I have been depressed. Surprise, low vit D. Hopefully the vitD supplement will help improve my mood. 

7. We did a B27 screen, to see if ankylosing spondylitis was a possibility. It came back negative. Made sense to do the test since it's a long term type of arthritis that causes severe inflammation in the spine. 

8. And finally, the APT-ANA AB ON HEP 2, SER NB. If that is gibberish to you it was to me. Thankfully they have a handy guide to figuring it out on mychart. I am not sure exactly what specific antibodies it is testing but it got flagged up as an anomaly, not much info is given though so I'll have to wait to see. 

I'll go through what the doc says when I finally hear from her. At least the test results didn't take long to pop up right? And I have one answer - hypothyroidism. Beyond that I await my doctor filling me in on what she sees in these. I know there will be a lot that she sees that I don't since I am very much a laymen when it comes to figuring out what these results mean. Now you know what I know anyway.

My body is complicated.

Oh and it's 730am. Why is that relevant? Because despite being so exhausted I fell asleep while talking to friends online for like an hour I haven't been able to sleep all night. -sigh- Me and my puffy hands are going to go for a walk and maybe eat breakfast.