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.

Thursday, January 23, 2014


I hate waiting on test results. A week or two to wait and have no idea what to feel. The anticipation is horrible, I almost wish the doctor hadn't told me what she was testing for until it was done. I know that she has to talk to me about it and has to ask me about it. Its horrible though. Sitting in the exam room alone, staring at nothing and shaking. Waiting for her to come back and tell me if she thinks I need to do the lupus blood test thing. Now I have a week or two to wait until I get results back. I hate it. I've dealt with this more than once and it doesn't get any easier. Waiting on results from my tests is common enough for me now that you would think I would be used to it. My dad is going through stuff too, I might have to take him to the doctor next week if my mom can't take the day off. Things I don't want to do includes helping my dad after anesthesia. But then, they didn't want to deal with that for me either. I am so lucky to have wonderful parents that take time off work to come help me through things like a discography.

Discographies are the WORST DIAGNOSTIC EVER. Yes that deserves caps. They are horrible if you actually need them. You may not know what they are so a brief explanation. They give you a mild topical anesthesia and then insert large bore needles into your spine at each of the discs they are testing. In my case this was 5 discs. Then they poke your disc with a needle and ask you on a scale of one to 10 how bad does it hurt. For me, I was screaming. It hurt more than anything I have ever felt. They do this for all of the discs they are testing. Then, if that wasn't enough they test the pressure in the disc by injecting some sort of solution into them. And they ask you again how bad it hurts. The doctor stopped asking me after the second disc. He was supposed to go through the test twice and didn't. He didn't feel the need to confirm the results. After the first disc he asked if I wanted them to stop. I said no, I didn't want to go through this again. Everything was a 10.

My everything hurts today. I am so sore all over, even my eyes are sore. The doctor has me on a new medication - nsaid anti-inflammatory. She's also having me take vit D and fish oil daily. I don't know that the new medication is doing anything yet but ehhhhh. I'll take it. I already have a bunch of things to take, adding more isn't that big of a deal. My arm where the tetanus shot was is a big ball of soreness and the other arm where they drew the blood is a big old bruise. I'm just so tired. At least the inflammation is down a bit. My hands are still puffy but I can get my ring off now but my face still feels like a marshmallow. So do my legs.

I feel disordered today. I can't keep thinking on any one topic. Simple questions are so difficult to answer and I don't feel up for anything complex. I had a lovely dinner with my mom though. Dad was out to dinner for work so we got sushi and udon. The udon was horrible but the sushi was fantastic and we had a great conversation. I wish I could game tonight but I am not sure I would be up for it. The dogs were being loud downstairs though so I have them upstairs with me. Puppy cuddles ftw. Even if lux won't stop pacing around my room.


Well, I was right. Blood draws it ended up being. 6 vials for a plethora of tests. I'll get results sometime in the next two weeks.

My band aid had bees on it. Its cute.

Wednesday, January 22, 2014


At the new doctors office. Waiting rooms and paperwork. Discussions about symptoms and medication and tests and diagnoses. Treatment options.

"Have you been tested for autoimmune disease"

So more paperwork. Like the sle checklist.

Oh. And a tetanus shot.

I'm waiting for her to come back now. We shall see what else I have to fill out and what new questions I need to answer. Maybe I'll get blood drawn even. Aren't I just lucky.

Hectic day

So I spent my entire morning on the phone with insurance people, doctors offices and such. Downside - its exhausting. Upside - I have an appointment tomorrow with my new doctor. My old PCP isn't covered by my new insurance so I get to go to a new one. I am going to the OHSU richmond clinic since I want to go back to see the pain specialist at OHSU and the referral will be easier through one of their clinics. This has however necessitating me going through my piles of medical records and test results to get a list of all of the medications we have done and the tests we have done together. I am bringing medical records, ct scans, mri scan results, discogram images and results, and a freaking partridge in a pear tree. I have a long list of medications, it's rather disheartening actually.

The upside is I am going to a doctor. I need to keep repeating that so I remember. I get to see a doctor. For a reasonable price. My prescriptions are going to be a reasonable price. My tests are going to be a reasonable price. They cover physical therapy. They cover psych services. Can we say yay?

Right now though, with my chest hurting and my back twitching and feeling like knives are in it and my hands and legs inflamed and my joints aching I just want today to be done.

So I have decided it is. I am going to bed hours before I usually do because I am exhausted.

And my appointment is at 9am tomorrow.

Tuesday, January 21, 2014

morning world

This morning is brought to you by twitching muscles, puffy fingers, and hold music.

lots. and lots of hold music. -sigh-

Monday, January 20, 2014

Hard day

Today has been a hard day.

I woke up early to call the insurance people but it's a holiday so they weren't there.
So I couldn't call the doctor.
And I had a flat tire on my car so I had to go to les shwab and have the tire fixed.

I woke up with my chest hurting, my back twitching and I am horribly inflamed.
I went for a walk after I took a nap and my knees are killing me from being horribly swollen.

I feel like a marshmallow. A giant, twitchy, painful, marshmallow.
I can't think and I am exhausted even though I slept for 6 hours after I got home.

Days like today I feel like the pain is going to be here forever.

Sunday, January 19, 2014

Just a quick one

I expect I will have more to report later this week but I got the last of my healthcare info this weekend which is good because for the last two days I have felt like there is a rubber band around my chest and that I got punched in the solar plexus. It's painful and worrying at the same time. I don't usually have more than the body aches anywhere save my lower body. I'll be calling my health coop tomorrow to set my primary care physician and I'll be making a dr. appointment to figure out my options now that I have healthcare and to figure out what the heck is going on with my chest and ribs.

For now though I am just dealing with it. It's making it hard to game and the shakes I still have are making everything else hard too. Phuuu. I hate feeling like this, it is so frustrating in so many ways.

I got some quality puppy cuddle time last night though since I snagged the dogs to cuddle with rather than letting them sleep in my parents room. Lux was a bit put out since she doesn't fit under my bed and doesnt like my room much. Ah well. She can deal, Sinbad made up for it by curling up beside me and snuggling.

My dogs are too cute sometimes.

See. Cute puppies. 

Saturday, January 18, 2014


First the yay for my day:
I got the rest of the info I need for my healthcare plan! I need to call them monday to set up my primary care physician and then I can make an appointment with her and get my referral back to the specialist and start all that back up. holy run-on batman. Anywho, exciting for me. I have dental too so I can get my teeth cleaned and stuff which is cool. No vision though, good thing my glasses are pretty durable right?

Today has been rather tough though. I am shaking badly and I feel like there is a giant band around my chest and ribs that is just getting tighter. It's more annoying than painful compared to everything else but still. I also woke up all sorts of puffy. My face is just horrible and my hands feel like marshmallows. I would think it's dehydration but I drink so much water that if it is just dehydration then I will never be hydrated.

I have been playing Smite a lot lately with some friends and it's been good. We are all about the same level, have been gaming together for about a year now and are on teamspeak together. It has been great fun. I really like the game, I really like the company and it's such a good feeling to hang out with friends in a way that I don't get so exhausted doing it.

Friday, January 17, 2014

Good day

Feeling pretty good today. Didn't sleep well last night but even so.

Spent some time with my family, my poor nephew is sick and miserable with it and so is my mom. If I get out of the next few weeks without a cold I will be pretty happy. I got to help my niece make some rubber band bracelets and gave her a bunch of pony beads. She's such a cutie.

de/vision Rage

Last night I killed you in my dream
I was afraid it felt so real

Every time I hear that song I feel like it's my body singing a song to me. Its own sick twisted version of a lullaby.

Everybody is addicted
Underneath the skin
My rage is but an image of the
World I'm living in

I sing some parts back to myself. Usually I dance. When I can. Addiction. Heh. The medications are so addicting, its another terror to think of having to change them again.

My rage
Is taking over
Your pain
Will soon be over

I can't help but think that the only way the pain will be over is death but I have to have hope right? Maybe the next treatment. The next procedure. The next round of steroids. Will be my last and I will live like a normal person again.

My rage
Is taking over
Your pain

It makes me so angry sometimes. That's not just the steroids but they help fuel it. And then the pain takes over and I just hurt. I am just tired.

Last night I killed you in my dream
Today I'm gonna make it real

I worry about the side effects from these medicines for so long.
disc disease can't kill me.
But the medication can

Everyone's a sinner, baby
And so are you
We don't really need a reason
For the things we do

I know I haven't lived the best life, or been the best person I could be but still. I don't deserve this. But disease doesn't need a reason does it.

My rage
Is taking over
Your pain
Will soon be over

This big angry ball of pain and weakness is inhabiting my body with me.


My rage
Is taking over
Your pain

Taking me over and trying to make my world nothing but pain. Each day it succeeds a little more and I fight futilely to keep moving. Try another medication to keep it back but it morphs again and again, slipping around the medications. For every week I feel okay I get two where I don't. I hope that someday in the future that will be a better ratio but a part of me is so sure that it won't. That it will get worse. That some day the pain will take over and I'll be the parasite living in my body, not able to really live.

My rage
Your pain

Thursday, January 16, 2014

And on wends they rested.

Rested today. Played Smite with the boyos.

It has been good.

Sore from the last two days but feeling better than I have in a while. Emotionally anyway. Not sure I am going to attempt rock climbing this week, might just go (sigh) swimming. Don't want to push the physical activity too hard.

Tuesday, January 14, 2014


I'm out any recycle tonight, I missed these guys and this music.

I feel so disconnected with everyone and everything. Everyone's great and they don't coddle me but its hard when you feel even lonelier in the middle of a crowd.

Monday, January 13, 2014

I want my life back

I've been doing pretty poorly, especially since I lost my job. I feel like in the last year I have given up my life to my pain and it's just not okay. I stopped rock climbing and fencing over two years ago now, I stopped hiking and martial arts over the last year. The only exercise I have let myself do is walking in town and swimming. I am too afraid of hurting myself. I don't dance anymore.

I can't do this.

I thought about this all of last night when I couldn't sleep. I am in the same position I was a year ago, nothing has changed except now I am too scared to do anything I love.

I went for an hour long walk downtown with sinbad today.
Tomorrow night I am going to recycle and I am going to dance. Even if it's only one song.
I am going to dance.

And later this week I am going to go to the rock gym.

If I fall and hurt myself I am going to be in no worse of a position as I am now and maybe allowing myself to do the things I love will help me get through this funk I have been in. Depression due to chronic illness is more debilitating sometimes than the pain and I just can't do it.

I will have my life back damnit.

Sunday, January 12, 2014

A look through SBM

Today is another one of those horrible days for pain, still in a moderate flair up and am rather not pleased by any of this. Soon I will have health care all sorted out and go back to the doctor and hopefully move forward with all of this. -sigh- One can hope. 

So I decided to take a look through the fantastic blog over at Science Based Medicine for the various things people have suggested I try for my chronic pain. So many of them are bunk that its just sad. Anyway, here goes: 


Hypnotherapy is a hard one as there is no good clinical definition for what it is. Nearly every practitioner you ask will have a different definition and a different method of doing it. This makes it hard to evaluate realistically in research but what research is out there isn't exactly compelling. 
I'll leave it up to Steven Novella for a better way of putting this: 

"My personal current summary of the clinical research is that there is a suggestion of a positive effect from the specific operational elements of hypnosis (specifically increased suggestibility) for the treatment of subjective symptoms, like pain and nausea, that are amenable to suggestibility. However, the research has not yet adequately isolated this variable and therefore more research of better methodological quality is necessary to definitively answer this question.

Acupuncture: Part 1 and part 2

To be honest, the first linked article's title alone sums up my views on acupuncture for back pain: "Acupuncture Does Not Work for Back Pain." I have looked at study after study testing acupuncture for back pain and to be honest, I have stopped looking. NONE of them have compelling evidence and most in fact tell me that it doesn't matter where you stick the needles or if you even use needles at all (Heck I saw a study that got just as good of an "effect" from poking people with toothpicks. No joke.). As Dr. Novella puts it "the only reasonable scientific conclusion to draw from this is that acupuncture does not work." For more on the situation with acupuncture research check out the article in part 1. 

Part 2 has one main line that I wanted to pull out (though the whole thing is worth reading if you aren't familiar with the shenannagans that get pulled in acupuncture research):
"The data on education for back pain indicates that it is as effective as medical interventions for acute and subacute low back pain, and effective but not as effective as medical intervention for chronic low back pain. " - Dr Novella (emphasis mine)
This is another common things I get - Here, try this book on managing back pain! There IS a difference between chronic pain and acute pain. And things that work for one don't necessarily work for the other.


I am sick of this one as much as I am sick of acupuncture recommendations. It doesn't work, it has no plausible mechanism, no evidence of efficacy, nearly no safety evaluations and I am just plain tired of it. Subluxations are made up and don't exist thus we can't find them and adjust joints to correct for them. I know this seems harsh but when you hear the same thing over and over again you just want to explode. It's not my job to educate people, I have enough stuff to deal with already rather than having to say 'thanks but I'll stick with what my doctor recommends' 50 times a week (sometimes it feels like 50 times a day). My link is to an article by a former chiropractor about the field, check it out, and look through SBM for info about chiropractic to see all the bs that is within.


Oh yoga. I like doing yoga, it's a nice, relaxing stretch and light exercise. When my balance isn't off too  much I actually do a 30 min yoga routine designed to help work my core muscles and stretch my back and legs. It is quite effective as a low impact stretching set for those of us that have to be very careful about how we stretch and move. So what is the downside? The whole host of woo that goes with it. The "chi" "qi" "shared energy" "symbiotic earth mother energy" "shared spirit" and more are all names for woo. There are claims galore, quoting from the article: 
"during one bent over pose they say you are squeezing the pancreas/liver this apparently pushes toxin out and they also say you can taste the toxins coming out in your mouth (taste described as chloriney), during reverse back bending pose they say if you look back as far as you can you can stretch your optic nerve, in one pose where you bend your arms awkwardly they say that you build up blood pressure and when this pressure is released the blood will move so intensely through you arteries it will blast away plaque build up, near the end they have a breathing exercise which they claim is pushing out all the toxins the stretching has apparently pushed into your lungs, throughout they talk about the increasing of bone density and of joint strength, finally that stretching your lower back calms you because personal stress building up in your lower back muscles/tissues."
These aren't even the tip of the iceberg in the claims but they are a good sample. Before I move on I like Dr. Novella's response to this pile of woo: 
" I certainly hope that yoga practitioners are not squeezing their liver or pancreas, or that they are stretching their optic nerve. Nerves don’t like to be stretched – that causes damage. It also would not be safe to perform a maneuver that backs up your blood flow and then releases it in a powerful blast. This has a much greater chance of causing a brain hemorrhage than scouring plaque off your arteries. In other words, the yoga instructor better hope that everything they are claiming is a lie, or else they are likely to find themselves liable for very real medical harm." 


I have been told to take every bloody multivitamin under the sun. I did take a single daily multivitamin with my night time medications for a while. What happened? I started throwing up my medication every night. I went to my doctor and she recommended I stop the multivitamin. Why? Because many people that take them don't need to anyway and its the most likely cause of my nausea. Since I hadn't been on the high level pain pills at the time we didn't have a more likely cause hanging over my head. Ya know what, until this last week the nausea has been gone and I haven't puked up my meds again. 

The linked article looks at routine use of multivitamins, something many people do, to see if its effective and safe. Not all supplements are useless - prenaitals, specific supplements for a specific deficit, vitamin B12 in anemics, vitamin D for breast feeding babies, etc. SPECIFIC vitamins for a SPECIFIC reason can be effective and safe. I have a calcium deficiency, I can opt to eat more calcium rich food (which is what I have chosen) or take a supplement. Someone without a calcium deficiency is just peeing out the extra calcium, where is the point in that? 

The conclusion cited from the Annuls of  Internal Medicine on multivitamins?

"The large body of accumulated evidence has important public health and clinical implications. Evidence is sufficient to advise against routine supplementation, and we should translate null and negative findings into action. The message is simple: Most supplements do not prevent chronic disease or death, their use is not justified, and they should be avoided. This message is especially true for the general population with no clear evidence of micronutrient deficiencies, who represent most supplement users in the United States and in other countries."
If you think you have a deficiency, talk to your GP and have it tested for. If you do then you can take the one or two things you need rather than a whole host of other things that aren't helping. 

Low Dose Naltrexone

LDN is one of those things that has fallen into the dangerous side of pseudoscience for me. Not because it does or doesn't work but because of the timing of when the major marketing push started and its resultant effect on research. The clinical trials for this are in a preliminary phase and the results have been interesting. There are only pilot studies and preliminary studies so far done. We haven't seen ANY high level clinical trials done and the preliminary studies aren't nearly conclusive enough to justify human use. 
Yet pushes LDN as an effective treatment for all kinds of things (big red flag ahead) including; 18 different types of cancer, ALS, Alzheimers, Autism, Celiacs, Chrons, Emphysema, Endometriosis, Fibromyalga, AIDS/HIV, IBS, MS, PLS, psoriasis, arthritis, Lupus, and many more. Look at that list. It's horrible. One low dose of a medication with somewhat promising results in pilot studies can not have indications for so many disparate things. Not only that but something that will help with my fibromyalga is going to help with anna's lupus and is going to help with another friend's IBS? They don't even have the same cause! Something that effects the immune response for HIV patients could very easily kill a person with lupus. It's ridiculous. To quote the article on that point: 
Further, there is an inherent contradiction in simultaneously treating diseases that are auto-immune (the immune system attacking the host), and immunodeficiency diseases (like AIDS) and claiming to treat cancer by “boosting” immune activity. Increasing immune activity actually worsens auto-immune diseases, and suppressing the immune system would worsen AIDS. This is a difficult contradiction to resolve. - Dr. Steven Novella
I want to end this one with another quote because I couldn't put it better myself: 
"LDN promoters may in fact harm research into LDN by giving it a bad name. Researchers may be reluctant to hitch their careers, or funding agencies commit resources, to a treatment that has a dubious reputation. If the research is promising it will still get done, but if anything it is likely to be slowed by the efforts of the LDN promoters. 
This is just one of the many ways in which pseudoscience poisons the system." 


I am just going to quote the articles conclusion for this one:
"This study is encouraging but far from definitive. It might justify antibiotics for patients with chronic low back pain and Modic-1 MRI changes following a herniated disc when they have failed to respond to all other treatment options. This was a well-designed study, carefully carried out, with a credible rationale, impressive results, and a cautious interpretation. This is how science should be done. The authors cautioned:
We rely on our fellow colleagues to use clear evidence-based criteria and to avoid excessive antibiotic use.
 Back pain is a frustrating problem, and patients who learn about these results may ask for a trial of antibiotics even if they don’t fit the criteria of the study. That would not be justified and might be expected to do more harm than good. Chronic low back pain is a mixed bag with various etiologies, and it must be stressed that this study addressed only one very limited sub-group of back pain patients. That said, it is a ray of hope for those patients, and I hope it will be confirmed." - Harriet Hall
I recommend reading the article if you're interested. 


I can't tell you how many times I have been told I should just take Tylenol. It drives me batty. Oh yes, because pain that makes you neigh insensible can really be helped by popping a couple of Tylenol. Never mind the fact that its not an anti-inflammatory (which is something that is rather useful when your body gets super swelled up with a flare up). Don't get me wrong, the side effects are better and it's not as addictive BUT if you have to take a lot of it (like I do) the dangers from taking too much are significantly worse. 
To quote the linked article: 
"Poisoning due to chronic ingestion, which are often unintentional, are far more difficult to manage. The early signs of liver damage are not obvious, and can mimic flu-like symptoms. Once hepatic damage has started, the antidote’s effectiveness drops. In severe cases, a liver transplant is required" 
Chronic ingestion. Oh like what I have to do with high pain levels on a regular basis? Sometimes for months at a time? The funny thing to me about people recommending tylenol is that it is usually an after thought to telling me not to take vicoden or percoset (which I currently do). Um... you know that both of those are acetaminophen based right? Clearly not. This one is complicated and frankly I am going to listen to my doctor on what pain medication to take and when. 


This isn't one random people tell me to take very often, at least not specifically. They DO tell me to take ibuprofen - usually for the anti-inflammatory effect. NSAID's are all sorts of fun to deal with regularly thanks to a very special set of side effects that go with them. I get to hear repeated warnings about ulcers, and high risk of heart attacks and strokes, blah blah blah. I see my doctor at least every other month right now and will be seeing her more after my insurance stuff goes through. I keep close tabs on that stuff. I get a lot of fear mongering around some of the medication I take and apart from the heavy pain pills, these are seen as the biggest threat. 

Other interesting stuff:


I have started to pay more attention to the advertising surrounding back pain relief in the last few years and they are horrendous. The article talks about a big offender - those silly traction machines that don't remotely work. It just makes me mad to see claims for cures in the chronic pain realm. Taking advantage of vulnerable people is something that is done by the worst kind of people. The person doing the 'treatment' may be well meaning but the person running the con is scum. 

Chronic pain as a disease in its own right:

First off, read the whole article. Harriet Hall is brilliant. She writes about a book by Melanie Thernstrom which is great. Chronic pain is dehabilitating in its own right, independent of the underlying cause. Dr. Hall writes about how the nervous system can rewire itself to the pain pathways, how muscles can atrophy causing new sources of pain to develop and more. I want to read the book Dr. Hall references now.

Causes, care and consequences:

This is just an interesting article I thought would be good to include. Check it out if you are interested in the various types and causes of back pain and what can happen because of them.

Its another one of those days

I've been hurting pretty bad again. Not quite enough for a round of steroids but getting there.

Last night I couldn't seem to get warm, didn't matter the heat pad was on or the blankets I had on. Nothing. Took hours and a hot shower to warm me up enough to stop shivering. My nails were even blue. Odd really as I am usually the opposite. I get overheated at the drop of a hat but rarely cold for long. Worries me, but I don't quite have enough info on my insurance for me to want to go to the doctor yet so, I'll wait and see. I know my immune system is shot from the steroids and such, I could just be sick. Again.

Anywho, I'm exhausted and have to get up early tomorrow so, hopefully I sleep well tonight and can function tomorrow.

Friday, January 10, 2014


Not having a good day, my back is spasming and I'm shaking. Not getting sick I swear :-(

Over at my sisters for dinner tonight. The kids are being pills but they're cute.

Thursday, January 9, 2014

Hello World

So my lovely friend is doing a 365 days of lupus blog and it gave me the idea to try one of my own. I know it's not the first so I'll be doing it until the 8th of 2015.

My name is Lee. Hello.

I have multilevel degenerative disc disease. What is that you ask? Well, I have tears and bulges in about 5 of the discs in my lumbar region. This pushes against my spinal nerves and the peripheral nerves that come off the main column causing sciatica, numbness and the like. It's also really sensitive and my whole lower back will get inflamed quite easily and often cramps up. The years of this has really trashed the muscles and ligaments in my back and the pain often radiates into my hips and legs. My balance is trashed because my legs are numb so often they don't always work right and even on good days I still hurt. The chronic pain and inflammation has made it so my whole body aches regularly and on bad days I can barely move. I'm on a whole host of medications to help calm things down and even more when I have a flare up.

My immune system is shot from the meds but I do what I can to stay healthy. I walk every day. Back and forth down the street since I don't always know when I am going to have to stop. I live on a mountain so if I walk too far there is a good chance I won't be able to get back up to the house. Since I can't work because of my back I don't have the money for a cab and unless it's really early there isn't a bus in most of my area. I would live somewhere I could walk further but I can't afford rent, not working as I am.

I just applied for SSI again today. Hopefully I get it. That would help greatly. I did get my insurance card in the mail today. yay for insurance! If even a couple of my medications are covered then it will be huge. I think I will be able to start physical therapy again and even see the pain specialist at OHSU again. Even with my parents help there is no way I could afford to see him without insurance. Just need to get the last of the paperwork in and I'll be seeing if I can go.

Today I am sore from swimming too much yesterday and tired because I couldn't sleep again last night until about 6 this morning. I tried to go to bed at midnight because I was tired, it just didn't work. Ah well. Hopefully tonight will be better. I feel bad because I was grumpy at the stream guys over on krazycaley's stream. Easily provoked is me when I hurt all over and am sleepy. Went for a walk in the rain to cool off and am just tired now. Better than tired and grumpy I guess.