Monday, November 23, 2009

Where I have been, a bed on fire, and late remembrance

I am still alive…I can tell because parts of me hurt. I finished, just 3 minutes ago, a 4 day marathon of listing items for ebay (92 manga lots!) in hopes for getting some funds to save and enough to pay ebay sellers and get gifts. Sorry I have been not communicating, as it has been: get up, work, take pain pills, sleep, repeat. Over and over I worked until fingers, wrists, arms, forearms, shoulders, back, pelvic bones stopped working, just ached. Until I was not all here. I don’t know a time where I haven’t known only working and pain...literally, I can remember vague things in the past, but my recorded short term memory can’t believe it is over! Now this is what I WISH Linda and I had been doing. I mean, someone, well two someone’s has to do it, why not let it be us! Oh wait, I have the lacy thong, woot! I get to be on top! Sorry, fantasy distraction, late night thing.

The items and lots for sale on ebay (was over 90) include Yaoi (which are boy/boy love manga books come'on they are CUTE, and there is a KITTY! Most of Yaoi are buy it now or choose to bid and hope you get it – postage is included) and Shojo manga lots (Female romance, falling in love stories, couples stories) and Action manga lots like Vampire D’s oversized 200+ page mangas. I tried to list only complete sets as I know the frustration of buying half of a set and not knowing the rest of the story. Some of these I bought before I got sick, I think, or started. The ebay listings are HERE if anyone is interested. There is quite a lot that younger teens would like, high school romance, even 9th grade romance, plus books for singles in the big city, college romances – Venus in love is that one, where a girl is going after a guy in college, only to have the guy in the dorm next to her, her friend, in love with him too! Lots of Ghost story style ones (3 stories solves a volume or one a volume), and some cult ones like Lunar Legend, or Eureka Seven (famous anime) or The Girl who Ran through time (an alternate story on the famous Anime Movie: Girl who Leapt through time).

Sorry, it is all I have been staring at for um, days? Weeks? When did I start taking photos? Wow, I have a LOT of Yaoi. But you know most of the Deux Yaoi (and others) are more like fun boy love light romances, (isn't the build up and the moment of first kiss the tingly 'aww' moment particularly when the uke/femme is trying to be all butch! A "I don't know what you are talking about" - response: KISSED!) often the best yaoi is with no heavy adult scenes (or few), I recommend Manzai Comics, Idol Pleasures and Part Time Pets!
I am off to bed at 4:00 am, and tomorrow to the doctor, and then two more appointments later this week – no sign of any treatment in sight yet. But I keep working at it. The night worker who came on Wednesday and said she would come back told the schedulers she would, and then would not, so we will see tomorrow if it is just a timing conflict and get that changed.

I have been going through a long dark patch. Sort of self harm fantasy, compartmentalized, then lying in bed or when I was alone or with people every night, every afternoon, I thought about setting myself on fire. I believed it was the only way to help Linda and myself and get out of the loop I was in (I didn’t say I was very sane at this point!). I held the bottle of spirits I was going to pour over me, and then over my sheets in the bed before I lay in it and lit it. Now I look back and think that might not have been a very um, (I can’t think of a word that isn’t a horrid pun: ‘bright idea’, ‘illuminated thought’, ‘flash of brilliance’) good. Sorry, thinking about setting yourself on fire for dozens of hours is NOT GOOD, but it is sort of very ME, which makes me glad I didn’t do it. Got to stop listening to the voices, whether they be inside (like the ‘Bad Beth’ and Guilt Inc. voices) or outside (like the questions, insinuations, harassment, and basically abusive relationship doctors can hold over us: and health officials).

I hope you had a better weekend and I really hope all this work brings me the financial security I am hoping for. Now I really am low on manga! Seriously. I also hope all these doctors appointments bring SOME sort of treatment. Linda got a link to treatment for MS people to give remissions (not a treatment that would be approved here however) – still advances continue, treatments will come but until then, I have to live, to find balance – and to pray that the insanity of Black Friday (Thanksgiving is this Thursday, the day after that, Friday, is the most busy shopping day of the year) crazy spending in the USA spreads to ebay!

I sort of missed Remembrance Day. I wanted to remember on Nov 11th and did and do now, all those who worked as nurses in the field and in the stations all the way back to the home country on both sides of WWI and WWII. These women, who had PTSD and ‘shell shock’ went unrecognized and unappreciated. Florence Nightengale’s experiences in Crimea left her in bed – Shell Shock, M.E./CFS? I also want to remember all those families and spouses, communities who assisted in the caregiving of those who returned from war with impairments from psychological to the physical: the lungs, the limbs. There are millions to remember those who fought, let me and those who chose to remember those who tended men ripped apart by shrapnel, or who died holding their hands, and they went back to their cot, cried, then got up and went back to work.

13 comments:

wendryn said...

I'm glad you are still alive. Sounds like the past few days have been really hard - I hope you get a chance to rest & recuperate!

The pictures are great and really expressive.

The weekend was good except for the very end, when one of the kids decided to throw up on me. I haven't ever met a child better at throwing up on purpose. Blech. Anyway, the rest of it was pretty cool, and I thought about you a lot, hoping you were ok.

*hugs*

rachelcreative said...

Hoping all your manga sells well and you get loads of cash.

I'm ever so glad you didn't set yourself and your bed on fire too. Not a happy place to be. Oh those voices they do test us.

At those times I have to remind myself (sometimes over and over again) that this is a sign I want life to be different not over. Last time I reminded myself of that it made me snort out loud because it's kind of bloody obvious I want life to be different. But it did help to remind myself.

Ebay listings can be so exhausting. I'm impressed you managed to get so much done.

Hope you can get through the appointments unscathed and preferably with some treatment. I can hope!

SharonMV said...

Beth,
I hope you can stop listening to the dark voices. Please rest now. After pushing yourself so hard, you need to take it easy. I've never self-harmed, but in the last couple of have come to the point where I considered it - and I think I understand a little more about why people do it. I wish you could have some counseling, some one that you could talk to. You suffer so much emotionally when dealing with severe chronic illness & pain. Living with constant threats to your life must be so hard.

Not much going on here over the weekend. Dennis & I are both suffering from the cold that will not end. I washed my hair (major accomplishment!) Did a little stamping on Sat. On Sun we celebrated Chloe's advancement from kitten food to adult food. She is one year old!!! I can't imagine our lives without her.

Rest! And try to have some good fantasies. Hope you make lots of money.

Sharon

Victor Kellar said...

Um, you know, that's not how you're supposed to set your bed on fire. Refer to pic of lacey thong.

Rest. Get better

Raccoon said...

My weekend? Quiet.

Don't set yourself on fire. If you were on fire, you wouldn't be able to stop it from spreading, which would not be good.

Besides, it would get Linda upset. Not so much the fire (although I don't think she would like it), but that you would choose that way to go.

I'm going to have to spend some time looking at your eBay page. Not the yaoi, but the rest of it. Some of it looks pretty good.

Baba Yaga said...

Glad you didn't set yourself on fire. Leaving aside the small fact that we'd miss you, or that Linda would be very upset, fire has this nasty tendency to be uncontrollable. (Which is why I, control freak that I secretly [?!] am, always stuck to sharp things. I don't recommend that, either, you understand. But of the two...)

Glad you're saner, too. Those are very dark places. And you have more than enough darkness in your life as it is.

The Beeb recently broadcast chunks of a WW1 nurse's diary. Perhaps we're beginning to see that even that war involved more than just men maiming and killing one another.

yanub said...

Setting yourself on fire would be a very bad thing. And if you won't think of how bad it would be to do that to you and Linda, think of how a fire would spread in your apartment building and possibly injure or kill some sweet child or a visiting puppy. I know you will always think of others before yourself, so think of that. Be good to you, because being good to you is being good to others.

Dare I ask how the appointment with Dr. Perfect went? I am put in mind of words from the Don McLean song, "Everybody Loves Me, Baby":

Yes, and the ocean parts when I walk through,
and the clouds dissolve and the sky turns blue
I'm held in very great value by everyone I meet but you"

Oh my. Manga for sale. Who are you on eBay?

Elizabeth McClung said...

Yanub: It started so well, I asked the doctor who first tried to sit on a kitchen stool to loom over me - I pointed out that looming over a person in a wheelchair was really rude and please sit on the couch (he tried to make my apartment his doctor's office). I said that he had his years of experience and knowledge and I had experience of my disease, and my knowledge and could we exchange information so he could the family as equals. He then spent some time explaining how with his experience and since he WAS a doctor and a specialist and such that we could NEVER be considered 'equals' so no, he would ask, and I would answer. I asked for collaboration. No, just answer my questions. It went on for three hours and he started saying he had a disease with autonomic failure - I said to please let me know what it was so that I could tell other undiagnosed people with autonomic failure there was another disease to consider. "All in good time" - he would use this paternal phrase about 50 times, like "And this is GENETICALLY relevant?" - All in good time. Even now, he has a theory, wants to test my DNA, wants me to do the blood at his lab, Tomorrow or Wednesday - no results until Jan. But must be done now. I talked how the nurses taking blood were quite good, he said dismissively, "Oh, they are just techs!" - kept trying to tell me what I was thinking, or like, Him: "You lost your eyesight at birth." - Me: "Um, no it was when I was 12, after a car accident, it was recorded in court due to insurance.", Him: "Yes, so you lost it at birth."

He finished with: "The reason you are not getting treatment and don't have a doctor is because of your presentation."

Me: "I am sorry, do you mean the complex presentation of symptoms?"

Him: "No, I mean YOU, that YOU are the reason that specialist drop you because you take too much time and are intellegent, they only have ten minutes, look at the time I have spent here! I wish I could tape this and show it to other doctors of classic defensive reactions."

Me: "All in good time." (he missed the joke)

At the end, as a final power trip Linda asked, "So what happens now?"

He says, "Oh, I haven't decided whether I am going to take her as a patient yet, this is just a history" - a wait and then, "Yes I am."

Me: "So what form of treatment plan is there to be?"

Him: "All in good time."

Sigh. He has promised if his theory does not pan out to give me IVIG but even Linda thinks he will simply drop me as I am not interesting to him anymore, whether he refers me before that I can't say.

Elizabeth McClung said...

The ebay items - push the HERE below the Vampire D picture and you will pop up at a list of them.

Wendryn: HArd days, hard days ahead. So tired. BUt I really wanted to let people know I am still here and still fighting. Throwing up at will? - that is a SORT of talent.

Rachel: You are right, it is a sign that I want things to be different, though part of me actually does want to know what it feels like to be on fire, to smell it. I think that is the sort of not so sane part left wandering the mental halls.

No treatment, and a diagnosis that is so wacky, I will have to try to explain it in context and even then I am not sure I can (I am ill because all my organs are trying to produce testosterone - but the test show I have NONE - which makes me wonder why I am not fatigued more. But also, I have no estrogen either, which is why I take pills, which are not absorbed - but the disease is related to testosterone in my cells or something, and that everything wants to produce testosterone. Doesn't answer the autonomic failure of my heart, my lungs to convert oxygen (had the oxygen meter on to test me tonight and it kept dipping down into the 68-65, once down to 56% then up to the 80's and dancing into the 90's - doesn't explain which autoimmune disease I have to which my thyroid died as a secondary cause - doesn't explain anything except some nerve death (I can't quite make that make sense here - and the example was about Queen Victoria and a disease that most men had, Hemophilia, due to inbreding, and I have a disease like that, which few women have so maybe it is autonomic failure for women?

Sharon: congrats on Chloe's 1 year, I washed my hair too!

Yeah, I wish I had counselling - the doctor just walked up and started pushing my clothes around - he wanted to see my veins for blood draw - but said nothing - it isn't abuse, it isn't sexual assault, it isn't rude because.....he's the doctor! Except it is in my home. Yeah, lots o triggers.

Victor - thank you, the good fire of LUV! Will try if I get the time between hospitals.

Raccoon: Yes, I am selling a lot of the sets I was keeping back before, as well as big and think ones, good bindings and thicker manga. A lot of good supernatural investigators. Yatsuba is a girl who starts investigating with two guys - her 'guardian spirit' is a kick ass and take no prisoners beauty and she changes into her - the spirit loves one guy, the girl loves another - sort of very odd romance going on - would make an interesting movie. Sorry, probably not your thing. Eureka 7?

Ah right, I did not think about it spreading. I did not think at all about what comes next. Just the lighting of the match and then everything goes. But the hard thing is to go on, the easy thing is to set myself on fire. So I go on, right?

Baba Yaga: I usually do sharp as well but as the cat bite picture shows, that is harder to get satisfaction from and I don't want to go down to bone accidentally because I can't feel my muscles or control them, or because I am not getting blood. So I switched to fire, I really liked campfires, and fires with my grandfather - he showed me how to walk inside them (he made them out of trees and bush). I always dreamed of burning his rowboat in a viking burial - it was a joke between us - I had read that in La Morte I think and wanted to do it - I guess now I want to do it again - a hospital bed is a boat of transporting from one world to another in a way.

Yanub: Nothing to endanger Linda or others, or the books - you are right!

Lene Andersen said...

Thank you for mentioning the nurses - not something I've seen before (ever?) in Remembrance Day coverage and am retroactively pissed about. Argh!

So glad you managed to beat down the suggestion to set yourself on fire. I will refrain from making bad puns - especially since you took the best ones! Super dark sense of humour, my friend.

Will check out the ebay. It's time I try manga.

FridaWrites said...

I didn't realize or somehow missed that the interview was in-person rather than by phone. He does sound very old school, with the idea of the physician being the authority and the patient somehow subservient. What doctors don't realize is that this kind of hierarchy is a social construct and doesn't have to exist in that way--it doesn't with midwives and the women they assist, for example, although midwives are experts in birth. And for that matter, you're a doctor too, someone with as much training in another area. I don't like that "in good time" crap; some kind of theory or suggestion would help, or even, "I have a few ideas but need to research more."

I know all the stresses you've been under can lead to suicidal feelings, but can your illness in particular cause some of that too? That happens with a whole host of conditions; lupus comes to mind, though it's not that way for everyone with it.

Baba Yaga said...

What a patronising git. *Yours is the classic defense reaction?!

See your problem wrt sharp things and hot things. I'd like to say, "please, don't hurt yourself more than you already have", but, umm, I know that misses the point by a mile. Still, I'd much rather bring you tea and scones (actually, given that I sink everything which should rise, you'd be better with biscuits, or maybe fruit cake), and administer comfort to your battered soul and body, than see you having to wreak more damage to one, in hope of soothing t'other.

Anna said...

Hi

Agree with all the rest. Fire bad idea.
Beds are for sleeping or sex, not fires.
So.....don't work so hard. Sleep a bit in bed. (or sex)

As for doctors 1. You've got a diagnosis now? That is good isn't it?

As for doctors 2, I totally understand that git doctors are stupid. But, can't you act the way the doctor wants you to just to get what you need and want?

I go to an old school polish gynecologist. At my first visit I was completely me, that is all knowledgeable and a bit sassy about my condition. Didn't work AT ALL. So, did he have the right to treat me with superiority, of course not. But that is obviously who he is. OK, he gets paid to be proffessional, but if he has that personality and schooling, I can't change him.

What to do.. I really wanted him as doctor because in my town he is one of the best in his field. So during my next appointment, and now, I act as a more timid woman and treat him as the DOCTOR.

It might not be completely honest or right. But I have got all the tests and examinations I want....and believe me he is really good. So, am I selling my soul, maybe, but it is getting me what I want and need.

I just hope you'll figure something out.
Take care Anna