Tuesday, December 07, 2010

World Peace and painkillers, plus my junkie arms and firm medical breasts

What do I want for Xmas? Why world peace and free painkillers for all in need of course.

I’m serious, since the doctor has altered and increased my dosage for the 3rd time in two months, we are in fiscal fear. I am having an last ebay auction of manga here, sets complete and rare, some yaoi and some stuff I have been holding onto like signed books, and cult sets that cost a couple hundred to buy they are so out of print. It ends Sunday so the manga can be posted and received before Xmas. Money is used for 1) Rent, 2) Medicine, 3) Drugs, then if there is some left, a night’s room in Seattle to go to Sakura-con. But will see. No more ebay sales until at least March or April if I am able.

I gave blood a couple days ago. The bad news is every single vein blew (the vein walls are weak), making all these nice round blood eruptions dotting all over the inside of my elbow giving me the drug addict look from 60 yards away. You can see how the branches of veins from the injection site, a wall blew on the vein, to the left, the right, below and above the injection. After the spurt which caused the 'needle injection infection' look, you can see the yellow of pooled blood under the skin. I told Linda I was coming in to the study to inject my next 'fix' into my eyeball or between my toes since right now all my arms are blown. That was a joke (the drugs part). What is more worrisome is where are they going to get blood next time? My other arm does not have a strong vein. Guess stuff changed in the months since the last blood tests.

I had some medical reactions from drug combos which had caused me to sleep and only be awake about eight hours a day. Now I am slowly getting better but the cell degeneration in my body is worse, as is the crazy Edema. I went to the doctors, and he asked me to take off my shoes and socks. Linda helped and there was one foot so large that it was like a soccer ball on the end of my leg, and my ankle couldn’t bend but the other foot was perfectly normal.

“Did I mention how each side of my body has separate circulation?” I said as the neurologist looked and then started taking blood pressure readings from both arms. Scientific method, I like that. Except my exposed feet had totally black toes in 10 minutes, like the black you see on climbers up on Mt. Everest for days. BLACK.

“Um…yes….um…” the doctor said staring at them before asking me to “cover them up.”

Then he checked my heart beat by using his hand to move my bra aside and nestling his hand around my breast with the listening device right by my nipple. This was an unusual place to hear my heart, but must have given him some added advantage because he pushed the bra aside to get his hand on the breast, I mean, listen to my heart four times in all. VERY rigorous exam.

He wanted to know what I write about, and he talked about migraine research. I mentioned how orgasms are one of the top ways to reduce a migraine for females. Which which is why, with Xmas rush, and relatives, and all the pressure, the tension builds and honestly, frequent masturbation will keep you from frizzing out, or help.

"Masturbation!" He was outraged, "A waste of an woman's orgasm (with me around!), you know! Heh...heh!" No I didn't since he was (even Linda agrees) clearly over 70. Oh God, time to check my heart rate AGAIN? I didn't know my breast was so good at conducting sound since he had to move the scope to many different spots.

The good news is I didn’t need to stay in hospital and he is taking the case, plus he is friends with Dr. Sacks (of the guy who writes the book, and the movie Awakening is based on), so he likes the unusual cases and is going to see if he can find anything on mine.

The bad news is there is no way to get IVIG in BC. This is because a guy with a name like Barry or Larry controls who gets IVIG for the whole province and his ego is somehow tied in to making sure no one gets any. I had heard another neurologist say, “Barry would never approve it.” but didn’t know what he was talking about. Apparently much like censorship or rating film boards, Barry only likes to give IVIG to the candidates he was taught to give it to, about 15 years ago. Now, it is regularly given for autoimmune diseases including Lupus and Neuropathy and helps people keep working and just stops the progression – the wonder drug. I hear from a neurologist that one guy has neuropathy so bad that they are completely paralyzed and only his eyes can move, but Barry still won't approve the IVIG.

This idea depresses the neurologist so he goes back to my breast. I try to cheer him up by telling him that the neuropathy is affecting one eye, much like the circulation issue. This perks him up and he plays with the light in the eyes thing watching one move slower than the other.

I leave there and give the peds blood station the hello kitty band-aids I got when I ordered gifts from Japan. I seem addicted to ordering gifts only to realize that I don’t have anyone anymore to give them to. Which kinda sucks when I have Hello Kitty with her friend saying, “I love mushrooms” inside a giant mushroom as stationery (seriously, what is not to love about that irony!). Last time I gave all the Hello Kitty and Anime stationery to an orphanage. Oddly, most of the stuff I get goes up in price until it is stupid price valuable, but I’d rather give it away than sell it. I have several boxes of gifts to give away, including a puzzle for a space/shuttle affectiano but it sits waiting.

Peds love the band-aids and so next time I will bring in the Hello Kitty cold masks I have ordered for them also from Japan.So next time we can afford gas/petrol to drive to the hospital I am taking them, and they are really looking forward to them. Peds nurses are cool.

I end up missing my meds because I didn’t want to drink or take meds before the blood tests or neuro tests, so I miss three of the four heart pills. The delay in taking Lyrica for nerve and seizure disorders ends up with me having several seizures, which make me a bit ropa-dope. So later, very confused, and also with blue fingers, my Lifeline phone tells me “It is TIME to press your life line!” I do, and fail. And fail. I simply don’t have enough strength to press the button. The button is recessed so I am not able to push it down with my teeth. But I finally hit it.

“This is life line…do you have chest pain?”

Me (post seizure and brain of swiss cheese): “Yeah, I do, how did you know that? Is that why I had to call you?”

Lifeline: “Ms McClung, are you okay?”

Beth: “Probably not, I mean, do ‘okay’ people have their phones talk to them? Oh wait, look at that, my elbow is purple, that’s kinda odd.”

Lifeline: “Are you sweating?”

Me: “No, I don’t sweat, it is part of my ‘thing’”

Lifeline: “Are you clammy?”

Me: “Still don’t sweat. I do change different colors, kind of like those mood setting lamps they have in offices to sooth you.”

Lifeline: “I think you are in distress, do you want an ambulance?”

Me: “I don’t know. How do I know that? Didn’t you just ask the questions to figure that out?”

Linda takes the phone, after they keep asking me different questions and I am confused and it is 4 am and I keep saying, “I don’t KNOW.” Which is the truth, at this point, I don’t know if I am in South America, or if I am that assassin who slices off my marks’ heads and trades them in for $5,000. I don’t know why I have these alternate odd memories of being an assassin and working as a maid or setting up different hits and then taking off the head and double wrapping it in plastic inside a duffle bag. It is a pretty good job, actually. I get to do a lot of different jobs, though only for a week or so, waiting for the right time to take my mark down (steel stylus through the ribs into the heart and a little squiggle twist, just like they used to give for lobotomies – presto, one dead guy – now, time to take the head).

I pass out. Then there are guys standing there asking if I need an ambulance. I tell them that I told lifeline I didn’t know, and why did they send the ambulance? The senior guy calls off the REST, which is the second ambulance and the fire truck which are coming (to take bits of me?). We talk and I tell them what my blood pressure will be, and we talk about the local pyromaniac, and it turns out one of the Medics lived right down the street from him. I am not sure how much my neighbors enjoy this conversation at 4 am.

The next day I talked to Lifeline. A guy calls me. He wants me to use a box where there are straws and I need to puff and sip into them. This is because I have to push the button, which is recessed and I don’t have the strength to do it (either by biting, using my thumb knuckle or index finger of the right hand) normally much less after a seizure or during a stroke. I don’t think this is going to work, and ask: What do users with degenerative diseases do? He thinks they stay in bed and have the puff and sip box (larger than a box of cigarettes) by the bed. I do not want to spend days in bed. I cannot do as much as before but I can get out of bed, and wheel to the study. I can even get dressed and put on earrings, despite the knowledge I am not going out – this is the femme rebellion against an illness that steals life away: earrings, Satsuma Body Butter (Yum!), lip gloss, Linda braiding my hair and a push up bra.

I sleep a lot on Saturday, and on Sunday we get up early and match and stamp. I got to match from the three new postcard books I got from Amazon, and one from a Ghibli of Oga and other artist for Studio Ghibli (Totoro, Spirited Away, Howl’s moving Castle and others) shown in a limited exhibit. The exhibit had a special postcard set, I found a set online, waited for it to go on sale and bought it for $40 (16 postcards). Why? We need medicine and I spend $40 on 16 postcards and shipping from Japan. Because these were high quality art postcards from a great artist. This postcard of Porco Rosso, free in the sky ('A pig's gotta fly'),available no where else, which once sent I will likely never get or see again, if I can send this to the right person, just might make the difference between solitary sadness and the feeling of knowing that they are special, and will always be special. It is stupid isn’t it, to exchange food and a little more security this month for a belief that not just getting ‘a postcard’ but finding the RIGHT postcard for the right person can make a difference in how they feel, and feel about themselves.

I think some days that like Don Quixote, I have spent too much time in reading and believing that my mind had ‘dried up’ as I believe that all scullery maids are princess’. But I do believe. And while I often fail in matching the 'right' card at the right time, but when I do, it matters and I am, for a time, worthy to be living a life of service...for a time. So with Linda and Cheryl’s help, we matched postcards collected over the past two years, and stamped them,. I was in the study writing postcards for hours until they had to cool my spine. You see, the effort to write so much was overheating my spine with the amount of signals it took to try and move my hand for many hours (due to ‘dead end’ circuits, the body ends up sending huge amounts of signals in order to get one through, so that the hand and arm and fingers can move). I ended up passing out from the heat coming off of my spine, but they helped cool me and I continued. And over 60 postcards get sent out that night.That was a good thing. I hope the postcards will help people at Xmas time, which can be a lonely time.

Saturday is punky, my face is grey says Linda. I have conversations in bed but can’t see. Typical. This pisses me off, so when I do see I try to go for a walk (the nature of not feeling means no matter how high the blood pressure, heart beat or lung pain, I don’t feel it, or my feet or ankles, so I use a walking stick and sort of bounce around, leaning up against things. I make it outside purely on adrenaline, because truth be told, I am having my period and so is Linda and so emotions are high (like how C-4 sometimes goes ‘bang’ high). Whoever said women shouldn’t be president due to periods is WAY off, as only some/few women (like me) want to kill people and only on one or two days a month, as opposed to an entire government department of guys dedicated to war.

I pass out, or so the stains on my clothes tell me. I keep losing consciousness but Linda and 15 strangers offer to help, I think 14 of the strangers think I am drunk and passed out. I have several small seizures. This only adds to the ‘drunk woman’ look. I hope this means more people will talk to me in the future, as drunk and passed out is far friendlier than scary disease woman. Somehow, I end up at Starbucks. Starbucks is much like going to the hospital: I sit in the wheelchair that arrived with Cheryl and they stop me falling out of it until I can talk again and there are machine noises and beeping. I decide to steal the chocolate bits out of the top of Linda’s Hot chocolate and miss, ending up with whip cream all over my face, having totally dunked myself in her cup. I am sure this will add to my ‘drunk’ rep.

Some readers think that I am an attention seeking addict. I know this from the various comments which are left anon about me getting a ‘fix’ and such. Ironically, these are people I have probably worked through the night to send postcards to, and still do. (sarcasm) Yes, I am an attention seeking drug addict, who is only awake a few hours a day, never gets to go out, has the windows covered to keep out the construction noise – I find spending my time indoors talking to no one the best way to get attention. And the patches work great, except that they leave burn/blister marks where I have them, so my arms and back are covered with those.

The doctor I have treats cancer patients and other late stage/pallative patients. I think those who judge me as some sort of drug junkie would see all of his patients, those dying of cancer as ‘addicts’ or ‘getting our fix’. If someone really has the time to believe or worry about such things, that after two years the desire to not be in pain=drug addict. Because apparently the idea is I could hand my medical file to a doctor (in a city where waiting lists to have a GP are in the hundreds PER GP), have him examine me for 40-50 minutes for four times and each time he up my pain medication, even over my protests the last two times just because I just tell him, ‘gosh my back hurts’ (I don’t tell him that, I tell him about waking up with my teeth clenched so hard that they make cracking noises like ice, but only because he asked, and he nodded as this is something he has seen before, this pain symptom). He is an odd doctor, I explained how I am used to being in pain and now that I can see straight instead of through the red filter of pain haze where no jokes ever make it through (I laughed on Friday, almost hysterically, I haven’t done that in two years). He keeps trying for me to not be in pain. What a strange doctor.

The Fentynal is supposed to be on Pharmacare, but the doctor said that they will take months of tossing it back and forth. I didn’t believe it but Linda said it is true, as he sent in the form right away (a Pharmacare exemption). After a month they told him they needed a detail about if I had tried codine. I had, and he sent it back the next day. Three months later. He says if they keep sending it back asking for details each time, then it never gets an exemption. Even if it does, they never pay back the costs of the Fentynal you buy while waiting for them to decide. You can’t apply if you haven’t bought and are using the patches. Cancer patient often die before they get the exemption. It is a cost cutting game. People lose, but the government wins in saving money. Sad.

I have learned that I really only understand three time periods: Before (when I can remember things from being able bodied), ‘What I know’ which is either all yesterday or this morning, and NOW. So everything that is told me that I remember about costs, or problems covering pill costs, or medication costs, or food costs, it is all in the ‘What I know’ and I feel it all like it was told to me this morning. I do not know that one financial problem may have been told to me six months ago and another last week. I just know them all in ‘What I know.” And I try to figure out how to get a job. I kinda hate NOW because it is filled mostly with money stuff related to medical costs from ‘What I know’. We can’t afford batteries, we can’t afford the phone, we can’t afford condiments for food, we can’t afford multivitamins anymore, we can’t afford the pill, which was keepin Linda and I regular and also lessened mood swings. Because we are married to each other, we can’t get them for free, indeed it is really expensive. We can’t afford the B-12 I need, but it was a gift (thank you). We can’t afford the vitamin D and the Fish oil (to make my veins stronger to stop them from bleeding out all over like mine did. I want beef jerky for Xmas, because I can’t afford that either. We can’t afford hair cuts, and mine has tangles which will serve as nests for small birds come spring time.

This is why ‘NOW’ sucks and why a doctor talking about extending my life depresses me. I am supposed to be happy when all I think of all day is how, on Fentynal, tramacet, tramadot, Lyrica, pot, codeine and aspirin with tension every week the rent is due eating stuff from the freezer, and the dinner of rice crispy squares I had tonight (go rice crispies!) and soup last night. All the tension Linda has had about money from the last year I remember in a big BLAMMO, like it happened an hour ago. I have that memory and feeling every day, every morning and afternoon. I just want us to be able to be as well off as when we were students for over 10 years, and could have a pizza every now and then. Back then I would work an extra job, until I had 2 or 3 or 4 jobs if needed. Now if we have a pizza, that means no thyroid medication for a month. Just a life where I can live peacefully, with caregivers (Linda is meeting with the manager as I am being moved to ‘critical’ in care), while Linda job hunts and then we spend evenings together.

Linda said she is going to write a blog post on Girl’s Gotta Fly so check that out tomorrow. If would like stuff, please let me know, because the problem when I don’t hear from about 50+ people in months is that it really limits my gift giving, which sucks. I buy the gift, then Linda reminds me that we haven’t heard from them in a year or two.

I got Linda her music box from Kiki's Delivery Service, and she liked it, though it wasn’t Xmas yet, it had been a rough week and I wanted her to know that I love her. And now I make sure to thank her each night: "Thank you for taking care of me today." It matters, what she does.


And Cheryl, I gave her one of her presents (Linda has another one coming, so does Cheryl – I got them when I had money from the last manga sale). Know a person and you know the present. Cheryl likes guns, and while buying her an actual GUN collection would be difficult and illegal in Canada, I was able to get her mini-replica guns from a Japanese Hobby store where you can add clips and scopes to the six to ten different assault weapons (including a AK-47). Cheryl was very happy, “Oh a blah blah automatic SLR with grenade launcher! It has been years since I shot one of these..” Cheryl reminisced.

I thought, and hoped, she was joking. I know she was a law enforcement ranger and ‘secured’ facilities after 9/11 but a GRENADE LAUNCHER? No, she wasn’t joking. Turns out some law enforcement people like to collect guns, and shoot them – imagine that. She like them. That made both of us happy. I imagine maybe Xena warrior princess is now sporting an assault weapon, but I certainly hope the figurine character from Yotsuba!! Isn’t playing with guns, no no, leave the AK-47 for Hello Kitty! As my grandfather used to say, “Guns aren’t a toy. You could seriously hurt someone. That’s why you have to be 10 or 11 at least before you shoot one.”

But honestly, for Xmas, besides world peace, what I would love for Xmas is home stability – so Linda doesn’t have to try and do everything on her own: for example, a couple someone’s to help pay for the Lyrica, which has to be ordered every 2 months. Without it, I have, on average, 15 seizures a day and nerve pain. Which isn’t the ‘good workout’ pain. Some to help pay for Linda’s anti-depressant and anxiety med (when your caregiver, who has 4 of the top 5 stresses possible outside of war going all the time and she DOESN’T have her meds, it is very scary for the helpless person). And help to pay my OCD and anti-depressant med (it took me 8 years to find the right one, and without it, well, I start stabbing things through myself, or I did before – it is for people resistant for SSI) which is ordered every months or so here - I used to take 4 mg, I am not sure what Linda gives me now, I think it might be 6 mg or 8 mg under doctor’s prescription – on a side note, it has been found helpful to reduce pain in over 45% of people with fibro. Also the patches, which I am not sure how much they are, but Linda would (her email is Linda.mcclung at shaw.ca), as the doctor changed the frequency from 3 days to 2 days, meaning a 50% jump in the amount of patches we need for a single month.

Am I embarrassed to say, “If you want to give an Xmas gift, please give pain pills or anti-depressants, as the thyroid med is covered by Pharma-care.” Sure. But having a life where I and thus Linda think about his and only this from morning until night sucks worse. There are lots of stuff we could do with apple juice and cinnamon and cloves. Or watch movies from the library.

If you do buy a Xmas gift, or set up with Linda to help sponsor a medicine, please let her know YOUR address, so I can send you a present. I send presents not just because it is bonding or polite (though it is) but because I want things to be where they can be happy, with caring people.

Linda is here, so much for a short little update.

26 comments:

Baba Yaga said...

Sometimes I am entirely useless. Here you write a long post full of all sorts of things meriting responses, and all I can think is, "Could you get the pill free if you claimed to be having an affair with the feely dr.?" Or both to be having affairs with him.

No, never mind.

I'm glad you have a doctor with the strange idea that pain should be taken away, anyway. 'Though it never ceases to appal me that getting better treatment (any treatment) equates to financial worry.

Dawn Allenbach said...

I have some ideas swirling about getting money to you and Linda. I will email Linda to ask her about approximate amounts and what types of meds. I can definitely get some B-12 and fish oil sent to you.

Dawn Allenbach said...

Be looking in your PO box for two separate packages. One will have two bottles of 250-ct B-12 dots that you dissolve under your tongue. The other will have two bottles of 180-ct fish oil capsules. At one a day, these should last you a year (fish oil) and more (B-12).

wendryn said...

The doctor was feeling you up? What a putz. I mean, I'm glad for the pain meds, but really!

I wish I could help more with the meds and money. I'll see what I can do. I can't promise anything, but I will look.

I hope the painkillers let you rest, at least!

Elizabeth McClung said...

Baba Yaga: Haha, I think as you made me and probably others laugh it is a good response. I think I would need a sliding scale: so many breast fondlings for these pills, and so on.

Yes, to have a GP working to tackle problems like fatigue (blood tests then treatment), pain, Edema, care giving instructions and neuro consults in order to get better treatment, longer life, and better quality of life. It scares me: both the change and that he might disappear one day.

Dawn: Please do, her email is Linda.McClung@shaw.ca - I know she would like emails. Thanks for the B-12, with the gift I recieved of it earlier, it should last a year (as I take two sublingually a day until I am in the 350 range) also two of Fish Oil/Cod Liver Oil. Thanks so much.

Elizabeth McClung said...

Wendryn: this is not the first doctor who is ennuendo heavy, just the first who is both SO "hands on" AND over 70.

Yes, I sleep for 8 hours sometimes, the first time in two years. It does make a difference, the pain not there all the time.

Bonnie said...

Ok, *hangs head in shame* I disappeared for a bit...I am almost done with nursing school and needed to focus solely on that.

HOWEVER, I would lovelovelove to buy HelloKitty stuff, especially HelloKitty medical stuff. Like facemasks.

I have been following and am fricking delighted that you have a doctor who actually *gasp* believes in pain relief. What a find!

Linda said...

One of the other supplements Beth didn't mention is Florastor - it adds flora in your intestines, and since using it Beth's irritable bowels have almost disappeared. It works great and is on Beth's Amazon wishlist if anyone would like to pitch in for that.

Thanks Dawn for the Vitamin B12 and the Fish oil pills. That will keep us going for quite some time.

Laura said...

I echo Baby Yaga in that you have a doctor that believes that pain should be taken away. I am also glad that you are getting more sleep at one time and not waking in pain.

I will see what I can do as far as coming up with some financial aid for you.

I have been busy with so many things as of late that I have been remiss at keeping up with my writing to you. I am sorry for that. I will try harder in the future to keep you updated as to what is going on around here. Give my love to Linda and Cheryl.

rashid1891 said...

I wish I could help more with the meds and money. I'll see what I can do. I can't promise anything, but I will look.

Neil said...

Attention-seeking, are you? Well, you do keep a blog going; isn't that kind of like seeking attention? But that's in a good way, I think.

I'm ashamed of our medical system when you praise a groping doctor simply because he'll take you as a patient. Something's WRONG there. Still, hurray for eight hours sleep, and less pain.

Love and zen hugs,
Neil

A. J. Luxton said...

Hi there. A few baubles are going in the mail today (hope they arrive what with Christmas mail wobbles.) I also made a donation thru Linda's blog. :-)

A. J. Luxton said...

P.S. - Unprofessional attitudes from medical professionals suck. If there's a silver lining, well, I'd prefer a rude doctor who has some understanding of medicine over a polite one whose M.D. isn't worth what it's printed on, but you shouldn't have to choose.

SharonMV said...

Dear Beth,
well, for starters, I hate Larry or Barry and the system that lets him be in charge of who gets IVIG. It's hard to get it here for Lupus, only for certain neuro symptoms & failure of other treatments. It's easier for CDIP & other types of neuropathy (I think partly because more people have neuropathy & so they have more advocates). Even we immune defficient patients who are number one on the list of approved use for IVIG (it is the standard & only treatment) have to jump through hoops to get & keep our IVIG infusions.

I hope your fentanyl patch is a higher dose, so that you only need one patch at a time. That will save your skin some. I'm sure you're moving the patch to a different spot when you change it.

I'm glad you have a neuro even if he does seem a bit perverted. At least he is interested and not put off by a difficult case. I like Dr. Sach's work. I've read some of his stuff & seen several good PBS specials on him & his work.

I know Dennis goes through some of the same cares & worries as Linda does, dealing with all the financial burdens and the high cost of my meds. It's hard not to panic about it sometimes. It must be especially hard for you as it hits you all at once every time. People who haven't dealt with serious chronic illness just don't realize how expensive it is even when you have insurance like we do, or whatever meager payment the national health in BC provides.

What kind of batteries do you need? I have some extra as they keep sending batteries for the infusion pump every month. I'll check to see if it's on the list.

Sharon

Lene Andersen said...

A "short little update"?? I'm not complaining, mind you - it was a great post with so many things to comment on that I don't have the ability to say everything I want. I love your version of "short".

I think it's very nice of you to offer your breast to the doctor so he can fondle... I mean EXAMINE you when he gets nervous or anxious. Good lord. The things we go through in order to get medical care. And speaking of. I really like your doctor - not the neurologist, the other one. The one that believes you should have manageable pain levels. What a concept.

I'm sitting here wishing that I had more money so I could sponsor a medicine, pay your rent or buy your pizza. I have a lottery ticket for tonight, am hoping my financial situation changes by tomorrow morning. If so, I'll be sure to share it with you.

Raccoon said...

Heh. Sometimes, it's all in how you tell the story.

And I know that you're talking about serious things, but...

I'm glad you have a doctor that is willing (and apparently, able) to do what doctors are supposed to do.

You know, him being over 70 might be why he's trying to help? Because he grew up in an era when doctors, when people, were more interested in people than in money.

Olivia said...

erk. I hate that your doctor is so revolting and yet you are obliged to be so grateful! You do have a sense of humour about it (or at least write that way).

Anonymous said...

Doctor's feeling up the breasts of women with disabilities is not funny, I'm horrified you think it is. I was told to read you by a friend - I regret that I came here today, abuse is simply intolerable, I had to stop reading after your description of the doctor grabbing your breast while you talked about masturbation. I feel victimized by this post. Goodbye.

Elizabeth McClung said...

Bonnie: J-list has the hello Kitty Bandaids, as for the face masks, I asked the dealer I got them from if they had more or could get more and they couldn't, so I am not sure where to get those - however the peds nurse had on Hello Kitty scrubs so they must be available here.

Laura: Yes, I am fortunate to have this GP, I begin to have hope that problems which occur are not just ours alone to deal with but now we have a doctor to talk to - also that the results of the blood test will be acted upon.

Rashid: thank you for the kind thought, it is just a choice for those who would want to give a Xmas gift. If you want more details, please contact Linda (linda.mcclung at shaw.ca) as she deals with the amazing task of keeping up to date on how many of each of all the different medications (whew!).

Neil: writers write. I guess it is about as attention seeking as someone being a teacher, lawyer or academic. I am not particularly shy but blogs are the history of the unseen, from the mass of blogs from women to blogs I have read from homeless people updated in libraries - I write what I wish I had been able to read from my friends who died, but yes, most people in the arts have an aspect of 'LOOK AT ME' - I mean we write, take pictures, make sculptures, draw, play music, create lyrics, erect buildings, dance and more - however, the 'attention seeker' was used linquisticly as a negative trait and part of the us/them seperation, so I don't think they meant those who are artists or writers.

Well, my GP doesn't grope and the groping doctor is just part of medicine, I had them in the UK, they are part of academia (for example, not a single sexual abuse claim in our local university has ever ended in penalties against the professor, as it must be 'reviewed' by the department, in which the female is humiliated and treated in a 1970's style of 'must have been asking for it/lying to get attention' style. Considering that some medical people have demanded I strip when it has nothing to do with the visit, medically this was merely...well, someone who was old school, and flirting (or thinking he was). Yeah, not optimal, but life.

SharonMV: Yeah, I think most of the neurologists along with a lot of patients hate Barry/Larry - I was merely basing my information on the articles from the IVIG magazine you got for me, which has articles of elementery school teachers and so many people getting it quite early, often pre-diagnosis. Thanks for the picture of use in the place you live.

Linda do move the Fentynal around a bit and the dose is larger, but then larger again, so there is a large patch and a smaller patch as they don't make a size between the medium and the next step up, and I have no desire to go higher, particularly if the effect lessens as is mentioned (and happened to Wilkie Collins). Thanks though.

I could use batteries thank you, they are another thing we can't afford. We use a lot of AAA, and AA - For specific medical batteries, I am not sure, we use ones for the concentrator and other devices, but they are larger, and weight more.

Very true, obviously a good job would help a lot, and the worker system is in place to take that over when Linda gets one and insurance, but yes, I think there are lots of people making livings out of those with chronic illness', particularly in Canada, as one special use plate, with side for neuropathy costs $26 in Canada, so Linda bought it in the US for $6 - when it came, it said on the bottom, "Made in Canada".

Elizabeth McClung said...

A.J. - Thank you. I will also have a posting surprise for you.

Yes, I wish there was a world where we didn't have to choose between guys trained in 1950's values and views of women and those who have a 'not my problem' view - which is why I tried brand new doctors for a bit, but that didn't work out - desperation makes us all accept the unusual as usual, and right now, I would do a lap dance for IVIG, if barry is into that (of course a neuropathy lap dance is me sitting still while humming and swaying my shoulders).

Lene: Well, I wanted people to know why I was silent and the medical stuff, and it just kept...going. Then I added some more pictures. It was SUPPOSED to be short.

I like the GP also, I am starting to feel that he is going to do something about this blood work and ALMOST convinced he won't just decide to drop me for asking him a question.

yes, well, I think the 35+ age difference made me recognize that he was doing flirting moves but it took a while before I believed that he really was such a flirter/leech. But the first neurologist which said, "I don't know" and "When we don't know about things, we go to the library - I am going to read up, and research." - what, a specialist which didn't already know everything? And compared to medical bad experiences this was low on the list - Lying on a strecher brought in by EMTS at the hospital waiting area while the admitting nurse fills out forms, and you get to hear your frequent flier nickname, and the nurse mistakes you for a sex worker and yells out she needs the name of the history of your STDS across the waiting room is on a higher mortification factor. Being in stirrups at a new gyno at the hospital when he mutters about how that is really interesting and leaves, returning with a class, and talking about you vagina to THEM, not yet to you - that is higher still in experiences which are part of why most people, particularly women don't really like going to the doctor (much less the whole given a pee cup publically and pointed to the restroom in the waiting room - that has to be the most UTI common one). The fact that I can laugh is a sign that I am still here, and the pain has not beaten the tongue in cheek view of the world out of me yet.

Raccoon: I am glad it is entertaining, since there is often a slapstick side to medicine as I am sure you know.

He did say that 'I'm the one they all turn to when they don't know' - I'm just glad that the particular habit he had when I saw him out of my gourd in the hospital was so distictive that he could be found again - and the referral took 3 weeks instead of 9 months.

Oliva: Thankfully he is not my GP, but the specialist - see 50 male doctors and I have had a lot of er 'different' experiences, and with some pain control, I don't want to cry anymore, but laugh - maybe he really does hear better through the breast?

Elizabeth McClung said...

Anon: The rate of sexual abuse for women with disabilities is I think six times higher than those without. And you are right, in a better world it shouldn't be funny but since doctors in this province can actually rape women and keep their licence (and move to the city, where they have to say they are 'not able to see women alone....for six months'), I guess my extreme exposure to so many doctors has jaded me. I can hope this happens to no one else, but I have had enough emails and an entire blog about these experiences (and four pages of names of doctors sanctioned for far worse than this....this month, at the college of P. and S. for the province) to know that is sadly not the truth. I do believe that females have the right to masturbation and am not ashamed of female sexuality, and he did ask me what I wrote about, that was the third example -- I am sorry that reading it upset you. I cannot understand how me sitting through heavy handed flirting and blogging it victimizes you, but I recommend female doctors. If you happen to get a disease like I have which requires seeing all specialist, ALL specialists, then the choice can be 'have breast touched' or 'die earlier than needed as this is the guy who CAN prescribe hospital treatments' - if you asked me if I would have accepted this with bemusement before being ill, I would have said no emphatically. Is getting extensive medical treatment entering the sex industry without knowing?

Defying Gravity said...

Hi, I'm sorry I haven't been in touch recently at all. I'm sure you won't remember me, and there's no reason that you should. However, I've just made a small donation through Linda's blog. I hope finances start to get easier for you both.

SharonMV said...

I think the IG Living mag has more positive stories as it is published my companies who manufacture IVIG. Yes, some people are lucky and have good insurance companies & doctors who help them. And good doctors who will fight the insurance companies to cover it for non FDA approved uses. But as it is expensive, insurance companies don't like it and try to get out of paying for it. I had no problem getting it covered at first, but last year my insurance company canceled my treatment because "patient was still sick". A weird reason, I thought. I had to go through a lot to get it re-instated.

Sharon

Vanessa said...

I'm glad I read this post twice as you added some stuff and pictures! The vein picture put's it into perspective for those of us who don't/can't really get it.

I checked out Linda's blog and left her a message too. We've been saving up for a Xmas care package.

Oh and HUGE snort of disgust at the Anonymous poster! What an ass...

tinarussell said...

Wow, this piece is every reason I cherish you, Beth. It was very moving and just very you.

Random thoughts: 1. Creepy doctors, gaaaahhh 2. I got an Oliver Sacks book as a present when I was, like, twelve years old. I didn’t read it until I was seventeen or so, but I remember being happy that someone respected me enough as a kid to give it to me. Anyway, it was a good book (“An Anthropologist on Mars,” which profiles Temple Grandin in the title piece at the end).

Anonymous said...

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