Wednesday, February 27, 2008

I take medical control (failed) while headway with Japan & Kimono obsession

I decided to take control of my life today. When my GP called I told him that I was only going to have one medical appointment a week for the last two weeks of march because a) I am booked every day until March 12th already and b) I need to be healthy enough for an international flight. He said, “Well, that would be nice…..but….”

I think that falls into the “Oh Shit” category. I have concluded that my specialists need a subject, but must that be ME? For example, if I had NOT had the “help” regarding Dragon 9 which was supposed to help me make sure I made all my writing deadlines, I would not, for the first time in 2008, be missing a deadline tonight (I can write a draft….but I don’t turn in drafts!). Because I could have used that day to write the piece. So, I am offering good Canadian money (worth more than US….some days), for someone who will step up as Elizabeth McClung and fill in on these tests for me.

Because again, we are all in mystery autonomic function territory here and quite honestly, I would think after being wrong a solid year the doctors might let me call a few shots. Like the Dr. A. who not only I but also MY GP thinks her last diagnosis is completely contrary to these recent tests (much as her earlier diagnosis), has said to me, “Ego may be a factor in getting the assistance we need.” (no sadly, not mine being stroked but Dr. A’s). And this is while Dr. A. is refusing to give up her LAST assessment which I need to get PWD status federally. My doctor’s staff has actually contacted Dr. A’s staff who say that Dr. A won’t give the notes for my visit to her in Oct/Nov to THEM; so they can’t give it to my GP. No, it isn’t Monty Python, why do people keep asking that? This is a well ordered system of socialized medicine: I might note however that my FATHER’s hand tremors shown to the same GP as I showed MY original hand tremor’s too got two results. My father got…… immediate order for an MRI! I got……a diagnosis of PTSD and a prescription of valium! Not saying there is gender bias, just pointing out the difference in response. Actually, if there are ANY males who have been diagnosed with “hysterical” anything, can you let me know? I just say that since my seating clinic Physiotherapist had been referred to MANY cases of females with “hysterical paralysis” but no males.

Okay, now it is midnight, and……

Sorry short post today because I spent 5 hours today reserving hotels after learning about Japanese culture. I called IACE and said I would stay on hold to answer questions while they called the reservation in. This is when (four days later) we find out that, they are not authorized to make calls to Japan, which is why the itinerary was sent to Tokyo for review, why everything is in slow-mo mode. This took until 6:00 when I called Tokyo and made a reservation and then after the nap we called Kyoto: Linda on one computer looking up web pages while I scrolled through review sites calling out possible places. If they matched on three sites we called them, asked for a room, asked how many steps to the bathroom and asked for the QUIET side (it seems EVERY hotel has a noisy side and a quiet side), so far we have 2 candidates for Beppu, three nights reserved in Kyoto, 2 in Kanazawa, two in Tokyo and one up in Kakunodate. So we have most of our rooms reserved or possibilities, particularly the busy central Kyoto or remote areas and now feel a little better. Only oxygen and a wheelchair to go! I am obsessed tonight with getting a silk Kimono from Kanazawa which uses a 18 step technique and uses purples and deep blues, far different than the Kyoto colours, and recognized as an art of its own in 1975. Linda is like “When are you going to wear it.”

I have a glazed look, “Want KIMONO! I will frame it if I have to and put it on the wall. WANT pretty Kimono!” Here is an example.
Anyway, off to sleep as no ebay done today but we are yards ahead in the “Are we REALLY going to Japan and not going to sleep on the street?” question.

More news tomorrow on all the juicy details of where we are staying and what we are planning to do (like watching the apprentice Geisha at twilight as they hurry in groups to the performing theatres and special rooms in Kyoto)


Jerry S said...

I'm male, and I've had, and been diagnosed with hysterical paralysis (though I think the docs avoided actually using those terms!).

My left leg ceased working before my undergraduate exams. Also a tremor in my hands. Afterwards it started working again, and tremor went away.

cheryl g. said...

Is there anyway that your GP can address the problems with Dr. A to the specialist in Vancouver and bring pressure on her that way? You know, inquire if the Vancouver doctor could provide a second opinion on the test results and perhaps provide a diagnosis for your PWD status?

Yahoo! Progress towards the Japan trip! I sent you an email with some stuff about wheelchair rental. Let me know if I can help...

em said...

Yay for being yards ahead!

em said...

Oh, and if you want to take medical control I say Go! Maybe those #%$&@ would benefit from seeing that you are not there at their whim.

cheryl g. said...

Just wanted to add... the kimono is gorgeous and I can easily understand why you want one. What has wearing it got to do with owning it?

OK, Linda - I admit I'm not always practical.

Elizabeth McClung said...

Jerry S: Thanks, that was very brave and honest to say that - so we know that the condition does exist for both genders (Chronic Fatigue used to be a "hysterical disorder and they used to put people in sanatariums) - I think they use the phrase Conversion Disorder now (which translates: Brain does stuff we no understand), but still left with why so many females get slapped the label. Glad it went away, but it must have been a very view altering experience?

Cheryl: Unfortunately that was why my GP was talking about ego stroking because Dr. A IS the gateway to the specialist (her teacher) in Vancouver. I have everything I need, for PWD status it is just since Dr. A changes her diagnosis 180 degrees every few months, I can't, for instance, send in the letter from August where she says I will be close to completely cured by Jan 08. - Thanks for recognizing the AMAZING kimono - the same town Kanazawa has this place that has been supplying 99% of gold leaf for Japan for several hundred years so people buy something with gold leaf as a souviner (as cheap as $3).

Em: Yeah, it was exhausting to the point of trembling but there was a high from actually getting the stuff done and reservations made! And it is funny how I tell Linda she needs to be more assertive to her bosses and yet these people call me on the phone and I go, "When....okay!" - all meek and mild., yeah, a bit more GRRRR!

Jerry S said...

Hi Elizabeth

"Glad it went away, but it must have been a very view altering experience?"

In an odd kind of way not. I've always been a bit of a nervous wreck. A couple of years prior to the leg ceasing to work incident, I was dumped by a long-term girlfriend. All my sadness came out in physiological symptoms. I'd be sitting in a seminar, and suddenly my arm would shoot into the air for no reason, or it'd feel like an army of ants were marching around my body, that kind of thing. Quite disconcerting, but I always figured it was just, as you say, a conversion disorder (or psychosomatic, as I would have said then).

Same with the leg paralysis. The most embarrassing thing was the tremor, since it meant that my desk rattled all the way through my finals! :-)

It went away, but - you know - the anxiety stuff has made itself felt in other ways over the years. And it will again.

Dawn Allenbach said...

I have an idea for a little joint project when you get back from Japan. Email me!

*evil giggles*

FridaWrites said...

I can't think much, but saw kimono, want kimono too. It's beautiful.

Does Canada allow all patients access to medical records by law, as in the US? I'd say she's definitely gender biased and afraid of ever being wrong, even when she is.

Lene Andersen said...

Saw that kimono and almost pounced through the monitor before I realized I wouldn't be able to touch it (ok, grab it and keep it for myself) that way. Beautiful. My favourite colours. Now I want to go to Japan.

p.s. and I'd totally frame it for the wall, too. Sorry, Linda.

Michael said...

All of your appointments? At the end of March? Forget to write them down, and then forget to go to them? Except for Dr. A., because I think if you miss one of hers, you won't get another chance to see her until October...

As an American, in these litigious states, I have to suggest the option of a lawsuit. I mean, Dr. A. isn't helping you. At all. She is withholding important medical information from your doctor, and preventing you from treatment, and is contributing to a decline in your quality of life. Of course, down here, we can go to a different doctor for a second opinion if we want. We might have to pay for a couple of office visits, but it is still an option.

As for gender bias -- I'm not even going to attempt to go there.

Want to watch Geisha! Happy looking at picture of Geisha!

I think you will have to frame the kimono. Either that or train your staff the correct way to put it on you. Somehow, I don't think your staff would be that appreciative.


April is Cherry Blossom Festival, isn't it?

Elizabeth McClung said...

Jerry S: Wow, well, after I became a rapid cycling bipolar I sort of had a incentive to try and "keep calm" so Linda does a lot of the money stuff and things that build tension while my A-type personality and my erratic thinking keep me tilting at windmills but within a workable range. It sounds like you have made peace with your anxiety, which is good, or better. I know it still can suck and does even for me. Yeah, I've been in a final where a guy sniffed for three hours and I shoved a box of tissues at him and he was like, "I'm okay" and I wanted to say, "Blow your nose or die!" but I made it through, so table rattling would have been sort of normal for finals.

Dawn: I'm up for a project, and I did email you tonight (twice) so tag- now it is on you!

Frida: Yes, it is beautiful and if we are going all the way out there to the west/north coast, we should at least get a nice beautiful kimono - I mean, it's not like you can say, "Next time I'll get one." (Linda keeps saying, "Remember, you buy it, we have to haul it" - but isnt' that what post offices are for!).

I don't know, in UK the GP can withhold records "in your best interest" - while for example, my GP is STILL trying to get records from my specialist because my last GP (Doctor Death), simply sent almost none of my records on (I have a VERY thick file by now).

Lene: Well, that one is actually only $65 - I don't know what kind of budget you have but I can always look for a used one (that one is, it is from a shop in Kanazawa, which I am SO visiting) becuase even if you don't wear it, it would be SO beautiful - so want me to look for you too? Of course, I want one there too, so I can roll out in my Kimono and go to the festival or the shrine in it and totally blow people away!

Michael: Yes, the old "so sorry, did I have an appointment" trick - good one.

The difficulty of this system is that I CAN sue or make a official complaint against her BUT that means I can't see her BUT it also means that no other neurologist MUST see me (As I found out with GP's) which is why my GP wants me to ego stroke her to sending us to the OTHER neurologist in vancouver. Unfortunately in socialized medicine, a small town can be a REAL disadvantage.

A week after we leave is when the Golden week occurs and most of the crazy cherry festivals start (which means no hotel rooms) - so we will likely get the beauty of the trees, with some minor festivals but without crowds of drunk japanese guys singing karaoke under cheery trees. Which is fine by me. I do want to go to a "festival" and try to catch goldfish though. And take pictures of the apprentice geisha, and get a picture of course - a disabled aprrentice geisha - I started laughing in bed last night and linda asked why and I said, "Can you imagine what the Devotees would pay for a picture of a female (me) dressed as a geisha in a wheelchair or pictures of her transfered to a wheelchair (total femme and total wheelchair), they would be unique, like devo rarities and we could PAY our whole trip on those photos!" - and then she started giggling too. Sorry, it is sick but at 2 am, you do get odd thoughts.

Dawn Allenbach said...

You emailed me, yes -- but you didn't ask me about the project!

Donimo said...

In Canada, you have the legal right to review and copy all of your medical files. It's always a bit of an eye opener to look at what the doctors are saying! It sounds like you need an actual letter from her and not just copies of letters to and from specialists etc. I have to, once again, suggest an advocate for this PWD stuff. They really can help things move along. They can also help reduce stress. Just a thought.

Elizabeth McClung said...

Domino: thanks, I'm sure I WANT to know but now I can get my records; and I will try to get an advocate because my energy is gone, gone, gone.

Marla said...

Very exciting for Japan.

I do think there are great gender biases in medicine. I know when Joe would go to appointments with me I was always taken more seriously. Even in regards to my own health, not just my daughters.