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.