Friday, June 13, 2008

Brain go Boom; This is NOT a hostel in Germany? Plus Juno and TV.

I had a brain go boom moment last night after I posted the blog. While it has affected my speech somewhat, and left me convinced last night (and today) that I was in Germany (and that the hospital bed was part of the YWCA or some hostel) and it was 1990, my ability to write; the written language portion of the brain seems okay.

I keep getting this spike into the back of my head and another behind my eye when I have these 'brain go boom' moments. Cheryl and others seem to think that I need a CT (like RIGHT NOW), but since I found out that my test results from three months ago about my auto-immune system attacking me actually didn’t result in a referral to a Rheumatologist (though we were told it had been). I have little faith. Do I have a referral now? They are working on that I can get on a list to see many more months. And I only found that out when calling to find out if this EEG test the hospital told me I was to take 16 hours later was ordered by my doctor or not (A "Dr Sparrow"). And the anemia and hemoglobin and hemo-crit problems found in the last set of tests from May are…still untreated. As is the search for why my peripheral neuropathy is dying very, very quickly (for those unused to medico speak that means: all the nerves in my arms and legs – and when they die, arms and legs no move any more!). As is, in fact, the search for why my T1-T4 in my spine is demyelinating as found my MRI in 2007 (for those not in med speak, that means, signals below that part of the spine like LEGS, and bladder and yes, the horny bits, are getting lost and if that continues will all be lost). And the EEG test of last week has not come back with a result which means a) the guy who does interpretation is on vacation or b) They really did send it to Dr. Jack Sparrow, and who knows where it is or c) I have some really odd fucked up result which means they are kicking it around trying to decide who has to be responsible for interpreting it (Quick, cover your ASS!).

Anyway, what does this mean in terms of a CT scan for me? Pretty damn slim I would say, and even if I took one and it showed that my veins were bleeding into my brain and killing cells….well, this isn’t the US, I would probably go back on another list for the FOUR neurosurgeons left in Victoria, so another few months to a year wait there. My GP has not received either the nerve conduction test done here in Victoria many months and months ago or the nerve conduction test done last month in Vancouver which he says is “unusual.” I find that when 'certain' people are trying to say it is in your head, withholding the actual scientific evidence isn’t ‘unusual’ but pretty damn typical (if not expected). We are talking about the same neurologist who withheld the MRI results for FOUR months (and only released it after I refused to continue until it was produced) which showed that my spine was demyelinating.

Anyway, now that I have outline the fucked up state of my non-care. This probably means a continued loss of brain function for me for the near/continuing future since I seem to now average about three TIA’s/Siezures/Mini Stokes a week.

So I did not leave the apartment today because I was still not convinced that I was not in Germany, plus I had a hard time speaking, and coordinating hand function so I stayed in The Chair in the office and watched US films, namely Juno. This film (which is a hit and wins awards) seemed to be about how if you were white and female that having sex with a guy with no protection and getting pregnant at 17, and then deciding to seek a adoptive parent under the want ads next to exotic birds is kind of cool and edgy. And through it all, the pregnant belly is like ‘alternative’, sort of a fashion statement as Juno decides to give the woman the baby even after a divorce and spends most of the time to soul search and finds that she acutally loves a guy (which is obviously more important than, like, her pregnancy).

She is funny and hip and there is no feeling that she will ever have to have any emotional or other consequences from this since after the baby is born her ‘boyfriend’ cuddles with her as they say the don’t want to see the baby since "it isn’t really theirs anyway" (obviously not good grades in BIOLOGY class). And then we continue to see the now non-pregnant Juno biking over to true loves house to play guitar and we sigh knowing that though she has had this “hiccup” she is “Growing up” and will go to college and have sex there and maybe one day get married. Because she is white, and middle class. Because if she was black and in inner Baltimore or Detroit or many other cities in North America, 17 is VERY much the time you can become a mother (documentaries show 14 and 15 is too! Click on the map if you want REALITY!). For REAL girls, not Juno, all the bills are not paid by a couple you found in the PennySaver ads. Juno, the hip, sweet (STUPID) girl appears to have the kind of life that I guess North Americas want to see when they run away from reality into. Is this what they want their daughters to be? Or is this what 14 year old want to be in a couple years? Because I know women who left home to avoid sexual abuse or were kicked out for orientation or other issues or actually DID become moms at 17, and they are all white, but I guess not middle class white or movie American white. Certainly didn't have a soundtrack to the hard life and decisions they made. I dunno. Juno made me angry, that even teenage pregnancy (a particularly stupid pregnancy where SHE planned the sex, had it once, but didn’t plan the condom?), is now just hip and edgy and sort of a fashion statement between alternative and punk. Perhaps if Juno did like, cry or act in any way normally emotional instead of the “that’s cool” fa├žade the entire film I wouldn’t hate it so much. Because now I am just waiting for the “Yeah, my step-dad is raping me, but that’s cool and he buys me bitchin clothes” film. And I am sure it will win Awards at Sundance and show us how family abuse is kind of edgy but can be heartwarming and a lesson which leads to love all at the same time. And how maybe it is cool too, like the kind of cool having an abusive alcoholic parent is (if you are upper middle class and it doesn't have any emotional impact on you at all – I need to meet these people in real life instead of the cool people I actually know who have been dealt a hand of “all fucked up” and after a lot of years, worked to get over it and still be better people than those who gave them the “all fucked up” part of their life). On second thought, I don’t want to meet these “no emotional impact” people at all.

So that is it, I am now going to watch the TV series Weed, as my continuing education to my damaged brain on what North America is like, so that I can be ready for it when I actually leave The Chair and The Bed and go outside again, because Linda keeps telling me that this is NOT a hostel and that no, breakfast is not free (one of my questions last night: “Do we get a free breakfast?").

So, you probably have, like stuff to do and I will be thinking of you, while in all likelihood unless you are like me and fucked up so you have to spend five hour resting for each hour you wheel outside, you won’t be thinking of me at all, and I guess that is sort of the scheme of weekends. Besides, it is not like you don’t have your own families and kids and relatives and stuff like that to see and deal with and get together with and lawns to move and gardens to (what do people do with gardens? I have a feeling “mow” isn’t the right word), and all that stuff. So go and have fun because I would if I could and if I can I will. Right now I am just sort of curious and confused because I have parts I remember and parts Linda thinks I remember (including some conversation about a bed, which I have no knowledge of), and the parts my brain tells me, which Linda says are untrue. So I watch TV, which at least I KNOW is untrue (but my brain is more convincing to me in BEING untrue!), while US TV is sort of a twisted reflection of what people wish was true.



yanub said...

Are you sure you are experiencing brain damage? Because, you see, that's the only sensible review of Juno I've read.

I will think about you while I'm doing things this weekend. I think about you every day, and not just when I'm reading your blog.

SharonMV said...

I think about you every day Beth, and it's not because I'm stuck inside, in bed a lot (and not for any fun reasons). And I promise, when I do get out again someday & actually get to go somewhere & do something, I'll still think of you.

I agree with Yanub about your analysis of Juno. I refused to watch this movie -everything i read about it & the trailers i saw warned me that I wouldn't like it, for many of the reasons you mentioned

Hope you & your brain feel better tomorrow.

PS: Is there anyway you could come to the States & get some medical evaluation? I seem to remember you mentioning that you still have US citizenship? If this is true, there's a program on rare, undiagnosed illnesses at the NIH. They don't provide treatment, but do a full evaluation & try to pin down what's going on. Info other docs at home can hopefully use to help you. Let me know if you're interested & I'll send you website info.

Also read that the Mayo clinic diagnoses about 400 cases of MSA each year. We could all do the raise money for a worthy charity thing(ie, get Elizabeth some decent medical care).

I've heard of people with Lupus and those not yet dxed in the UK have to wait a long time to see a rheumatologist. Is it that bad in all of Canada? Or is BC worse?


Judith said...

i am typing one handed because my grandson is asleep on my other arm. he is, in every way, delightful but his parents are still children and so life is more complicated than it should be. my son and his girlfriend have their own home. my son dropped out of school and got 'not the work he wanted' and they struggle. and, to be honest i struggle watching them and bailing them out and losing my not working time to this litte lad. so i'd best not watch juno cos i might want to hurt people... also, i am way too young to be a grandma! but you should see this child- he's worth it!
how is your head now, can't type question marks! hope your day is looking up.

OtherSarah said...

Great googly moogly. I'm always horrified by tales of medical systems that make the US look *good*. At least reducing us all to productivity modules gives the docs reason to keep us productive.

I am going to a fair this weekend, and I will eat some luscious fried horror, just for you.

Raccoon said...

tell us what you really think about the movie...

I'm in Korea, and I'm exhausted, but I have been thinking about you. I have seen a teddy bear with wings, and today went to a memorial place where six people from the 1400s (I think) were buried after they tried to kick an usurper off the throne.

We got pictures of the headstones for you!

See, I'm thinking of you!

cheryl g said...

Sis, you are dead on about Juno. It's a stupid film with a horrible message.

I worry about you and even though getting test results back and any treatment/action on your condition/symptoms moves glacially, I really do feel a CT Scan is important to get.

I'll see you very soon.

Kita said...

Beth, as always I think about you. See, cause in my addled brain, you are like a sister. And sisters worry bout each other.
I'm sorry you had another 'brain go boom' episode that led you to watch rot like Juno. I honestly feel for you. As Yanub said - your's is the most sensible review of Juno.. what a God awful film! Who put that on? Slap their wrists!

Sharonmv, I am from the UK and honestly, the health service (dxing stuff) is pretty absimal. I have been dxed with so much stuff, from FMS to sciatica to 'possible MS' to 'its all in your head'. My brain goes boom too - I have seizures (non-eplipitic) and I understand completely what you are talking about Beth, cause after my seizures my brain has problems with who I am, where I am, etc. (I haven't been convinced I live in Germany, though.)

Kudos to you Beth. I think I have rambled on long enough.

oh and, people mow their lawns. Not move. You were right the first time.

shiva said...

Have you thought about going to an A&E dept of a hospital and saying something has happened that a CT scan would be the routine immediate response to? (note: i don't actually know what kind of thing that would be, but i'm fucking certain there's something...)

I haven't seen Juno, and, as it's a mainstream US comedy movie, i probably won't, because there's never been one of those i've liked (for some reason, i had actually got it into my head that Juno was British, and therefore might actually engage my sense of humour, but... obviously not).

However, wile i mostly agree with your review, i also kind of think that in a way it's kind of refreshing for a film to portray pregnancy as NOT an emotional big deal, and actually possibly quite radical to positively portray a woman NOT having the "mothering instinct" to her child, but being happy just to give it away without even looking at it, cos, well, i have known women who've actually felt that way, but it's presumed that no woman could possibly ever NOT have those mothering feelings about their baby, and/or that if they do lack those feelings, they're some kind of Satan - so i think it's actually arguably quite radically taboo-breaking, in a "speaking the unspeakable" kind of way, if you want to look at it that way...

I dunno. I had a friend at uni who got pregnant unexpectedly, didn't know what to do, then miscarried, and was actually *relieved* that she had miscarried because she no longer had to decide between abortion or keeping the baby, neither of which options she was comfortable with. Then she got really fucked off because of really insistent medical and counsellor types refusing to believe that she was relieved rather than upset, and insisting she had to "grieve", and that she was "in denial" and even "seriously endangering her own mental health" if she didn't, and that actually upset her far more than the whole unwanted pregnancy situation itself had done.

Will post gravestone photos for you soon!

Heather said...

Lousy news about brain-go-boom.

As for medical records, the Canadian Supreme Court has ruled that patient have the right to their records. By law the specialist is required to give you access to your records. (They can charge you for the photocopies.) And transfer of records to your GP should be straightforward. (Yes I know "should" doesn't mean that it actually happens that way.)

It's a cruel farce that you and Linda have to push so hard to get the records. It wastes the energy you need to do other more important things.

You've probably already seen this site--it gives a summary of BC's privacy/access laws.

Do you think a couple extra people writing to the College of Physicians and the Privacy Commission would help move the record transfer along?

Lene Andersen said...

Bossy medical advice: next time you have a seizure/stroke, call an ambulance, go to the ER and they'll give you a CT scan (well, unless a crazy woman has taken over the CT room again, but that's unlikely). It's the only way you won't be waiting months to a) get one and b) see a neuro. You'll either see on in the ER or get an emergency referral. Work the system, baby!

And thanks for the review of Juno. I watched it and couldn't see why it got all that hype/buzz/whatever. Actually didn't think it was very good. Nice to know I'm not alone.

Gaina said...

Aren't you entitled to a copy of your notes? That way you have at least one copy so you can get up these people's asses and say 'Did you get my results, because if not I have a copy that I can copy for you'. This gives nobody any excuse not to have seen the results of all these tests.

Please, consider the CT.

Anyone who can't see 'Juno' for the blantant ant-choice propoganda that it is has either had a labotomy or deserves one (without aneasthetic). Making Juno cool makes teenage pregnancy cool by default - way to shit in your own nest, Georgie-Boy!

But this is the way America deals with a lot of issues, isn't it? Coat it in fiction with a biase towards only one 'morally accetable' response, but hey everyone is conveniently accomodating and there's a never ending supply of money in this Utopia as you so rightly observed.

Gah, makes me fume!

I agree with Sharon MV, I'm sure we could find some ways to raise funds to get you to America to see a doctor who knows WTF they're talking about!

FridaWrites said...

The Jack Sparrow thing still cracks me up.

Rheumatologists and endocrinologists are the best diagnosticians for many rare diseases, leaving no stone unturned (like vampires drawing blood, they are).

My concern is that something similar will happen to the US when we get national healthcare, which we sorely need because of the high costs and barriers to care. Or will some privatization remain? Thoughts from readers, and esp. Elizabeth, when you have time sometime? Like Sharon, I'm wondering why the Canadian system is so bad. I know people who rave about it, but I also know better.

I'd be glad to pitch in for a trip to the U.S., despite own medical bills, because divvying among many of us would help. In the scheme of things, what's a little more? And one or the other of us in our family will get a different job in the next year or two and move to a one-story, which will help.

I had not heard of Juno, but we watched Waitress recently, and it had similar questionability, though at least she experienced some mixed emotions.

Even when I'm not reading what you write, I find myself quoting you to other people, so yes, you're thought of; the way my memory is lately, that says a lot!

Neil said...

Beth, dear, I think of you many times a day. Yes, I have family, and I consider you a part of my family.

I need to buy a propane torch today, and finish fixing the kitchen plumbing; we need to run off to the farmer's market as soon as my darling wife finishes brushing her hair, and we'll pick up cat food on the way home.

And I'll think of you as we pass the Tramps store where they sell the Disney versions of Miyazaki, and we'll probaly make jokes about "ooh, shiny" in your honour as we pick up my darling's re-sized wedding ring.

And I'll definitely think of you as we try to navigate the horrendous sidewalks between here and downtown.

Zen hugs to you, Linda and Cheryl!


Neil said...

Oh did we ever think of you while shopping!! Found a Skelanimals calendar in a store - June looks suspiciously like Hello Kitty's skeleton.

And we found a skull 'n crossbones cell phone charm.

Plus my darling wife (who I introduced to someone today as my first wife :) ) has a ruly warped sense of humour. In a dollar store, we saw some cartoon character cups, and she started going on about the S&M rooms one WOULDN'T want to see: Bob the Builder, Dora the Dominatrix, Mister Dressup's OTHER tickle trunk...

You've started something, Beth, and I'm not sure it's a good thing!!! :)

Zen hugs, devilish one.

Dawn Allenbach said...

I think of you every single day, no matteer what I am or am not doing.

spinningtransformation said...

so sorry that your brain boomed again - if you need any help getting through the phone calls to find a way to get the CT let me know. I have done a lot of that for my partner and know the craziness that the hospital system here in this fine (!) city of ours.

I'm baffled that your GP hasn't referred you for one though! Ray (my wife) got a non-emergency scan within a couple of weeks of a referral. Having strokes and seizures and NOT getting a CT or MRI is malpractice!!!

Your review of Juno was brilliant! I agree with it all but must say i was too distracted by the unspoken anti-choice message. fingernails?!?! are fingernails the mark of personhood? really?!?

I read your blog everyday and do have lots of time on my hands so yes, I am thinking of you! hope you are able to rest well today...


Elizabeth McClung said...

Thank you for your comments, particularly on Juno; I have not the physical ability right now to comment but I WILL come back tomorrow to discuss and respond to every comment. I appreciate reading them, and I want to give you my thoughts as well (and continue the conversation as much as you would want). Thanks again, and I'll be back in a few hours, hopefully with better eyesight.

Elizabeth McClung said...

Yanub: well yes on the brain damage but I am glad we agree on the review. After you said that I looked at reviews and found words like "Meaningful" and "Insight into our times" - wha?

Thanks, I think of you too actually.

SharonMV: Ditto, I think of you, because you are inside, and feel a little guilty when I can get out that I can't take you with me (abduct you!)

Tomorrow brain was better, after that....

That States thing is looking better and better; really, if I could get a diagnosis, I could get treatment in Canada, it is just they don't usually allow treatment (due to cost) without a definative diagnosis.

Victoria is particularly bad because it is a retirement capital of Canada, so a lot of elderly patients, and I have a sort of traditional "elderly disease" (autonomic failure). So, just get at the end of the long line!

Judith: Yeah, you are pretty much in the "cool" people who deal with, you know, reality, which is who I would rather spend time with than Juno. Ahh, it sort of got better, and then worse. But no guts, no splat! I guts, no glory?

OtherSarah: Um, yes, eat some fried horror for me, I haven't had a corn dog since going to a US public school lunch system. yeah, for getting run over by a Car, the Canadian system is great. For easy diagnosis and treatment, great. For complicated and rare, not great!

Raccoon: I am really privilaged that you took time out of your trip to come and comment - I hope it is going well. Yes, nothing like the threat of the flying teddy bear (the evil witch of the west considered them but stayed with flying monkeys instead!)

Cheryl: Do glaciers move backwards? Because that how my treatment seems to be going, haha.

Glad we are on the same wavelength with Juno - now it is all up to The Dark Knight to save my opinion of reviewers.

Kita: That's cool, are we sisters because we are cool or cause we both have addled brains? As for Juno it was listed as "feel good" and "comedy" because apparently planning sex without a condom is funny? dunno.

I tend to pick places I have been and skip years and since I WAS in Germany in 1990, that sort of made sense, I don't pick places I don't go to, I think Linda was just amused that I thought our apartment was a hostel.

Oh well, people keep doing something to thier lawn! Have a good weekend Kita!

Shiva: regarding CT, I did that once but a woman had barricaded herself in there so they couldn't. This is sort of sadly provincial so like, if the Tech is sick, no one gets a CT in the ER, people just look in your eyes and guess.

I have no disagreement that you would automatically have a mothering instinct, I do think though that carrying a baby to full term, which causes everything from changes in eating to hormonal changes (as well as sucking you dry of many different vitamins as well as calcium) can be of less importance than, for example, a new CD mix that a friend gives you. It is kind of like saying carrying around a doberman dog on your shoulder for 9 months has no real affect on you - which is what this movie showed, except that you know, she wore more cool and hip t-shirts.

As for miscarriages, I also believe you but the 'intervention' could be early since some people don't have an emotional response for several years. But it is a bit like hitting someone with your car and killing them, some people are torn up about it, some not.....right away! But it does change you. And yeah, I know women who have done the whole, "lets fall down the stair and get a miscarriage so no one knows" - yes, obviously there is NOTHING wrong with thier thinking, or issues that might be addressed.

Heather - that is good and usefull news. I have heard some doctors charge crazy fees (in the hundreds) to try and stop people getting their records. But in this case, I will push for those files, since my GP should have them.

The problem with the college is any complaint means you can't see that physcian ever again, which means, in terms of specialists, you are hooped. At least so I was told by the woman who deals with complaints at the college. And she said that human rights or other issues were "not really worth noting" just things like sewing a hand on backwards.

Lene: so I have to lose the one night rather than fight the many days. Makes sense.....but Beth SO SLEEPY - last time they let us out at 6 am. UG!

Well, I had the songs already so I wasn't wooed by that and just went, "what a very stupid girl"

Gaina: Actually, no, not entitled to a record, though a few doctors give some. Better than in the UK where doctors can "withold parts of your record for your own benefit" - errrr, what?

I am not sure about the pro-choice, I guess I missed that in the "golly I wish my life was middle class" envy that you can even get PREGNANT and still end up with a better life nine months later - wow, life sure is good in movie land.

Fridawrites: the big downfall to the Canadian system is...the US - basically you guys steal a large percentage of our specialists becuase we pay them $80,000 a year while they can get 5 times that in the states. Leaving us with the people who are here to get a visa (south africa, India, etc), or people who love being a big fish in a small pond - EGO!

I appreciate the plan and once I get an actually plan and conversation to Mayo in place I might come cap out but on the other hand, as many tests as I have had, my medical costs are still zero - and I hear the stories of so many women misdiagnosed in the US too, first MS, then oh wait, you have this and then that before finally Lupus, for example, only they had to pay not just for consults but for the drugs for the WRONG diagnosis! Plus, I get medicinal weed if I want it - welcome to Canada!

Neil: I think of you, with a certain "ARG!" - I can't believe you found a Skeleanimals calander and DIDN'T get it for me - did the skelekitty earrings I am always wearing in pictures along with the headband not give you a hint - and with my time sense, getting a Calener on sale months late is perfect! And did you get it for seems not! Oh where is the telepathy when I need it!

Yeah, bob the building S&M would be VERY rude indeed!

Hope you had a good shopping trip!

Dawn: same here. It is just, I wish we had telepathy, becuase often I can't get to the computer, or at tests so I never get around to see how everyone is doing or go, "Wow did that just happen" and comment and find out I lost a week somewhere!

Spinning Transformation: Really, you understand the hospital system? I can't figure out why they have the exact same departments at Jubilee and at the other one and yet will only order tests at one hospital?

I will bring it up again this week with him. He likes other people to recommend it, so maybe I will send him back to the ER doctor and the ER doctor can recommend it and then the GP will do it. I dunno. Or I can call up with a disquised voice?

Yeah the whole "fingernails" thing just emphasised how immature all the girls involved were if this was the deciding factors?

Thanks, I try to check your blog too, I have little time on my hands though, and I wish I knew why? Mostly becuase siezures take a LONG time - to have them, to recover, to sit staring into space - long time!