Europe & Christmas

Have been in Europe for about 10 days now & still have 2 more weeks. I LOVE long holidays!
I was trying to think back to my last 3-week holiday, and, you know, i don't think i have had one since i finished university. Yup, i have had 2 week holidays, but not a whole 3 weeks. And it's great. Think i am going to have nasty shock going back to work though....

So, what have i been doing?
Started off in Stuttgart - and had a very happy reunion with The German. It is *so* good to be back with him again, but i don't think that's a huge surprise to anyone. And i won't bore (shock?) you with all of that.

Instead here is a brief rundown of some of my 'firsts' on this trip:

• visited my first german xmas market - complete with mulled wine (gluhwein)
• ordered beer in german (woohoo! i'm multilingual now)
• had beer in the infamous kaisereck (K's favourite bar)
• met k's entire family - all lovely lovely people (i feel very lucky to have a boy with such good people around him)
• had christmas on christmas eve (mainland european style)
• met many many of k's friends (again, all good people, and all speaking amazing english - thank god!)
• embarked on a semi-epic road trip with K. Yesterday we travelled across Germany, through Luxembourg and into France to my parents' place.
• seen my parents' house with them living in it (last time i saw it, they were house hunting & thinking of buying it) Lovely lovely house - so much space!

And those are the firsts i can remember. However, due to large quantities of gluhwein, beer & sparkly, i think i may have deleted a few brain cells...

Hope everyone is having a great time wherever they are - And Happy Christmas!

Mid-Week Rant

If you're not interested in reading a stream of consciousness selfish rant about things, then now would be a good time to go look at another website.

For those of you who are still reading, be warned. I'm grumpy for reasons that will soon be explained.

Now, as i have mentioned before, my TB meds are not screwing with my liver & my body is recovering. Also, after reading the loooooooooong list of side effects, i know that it's not messing with me in any other ways either.

However, there are a couple of HUGE minuses about taking this particular medication (Rifampin).

Firstly, you'd think that taking large amounts of antibiotics everyday would protect you from catching colds or otherwise getting sick.
Oh No. Nothing could be THAT simple. Apparently, my meds are anti-bacterial. Colds & flus and the like, are viral. Therefore, my antibiotics offer bugger all protection against anything else.
Not only that, my meds interfere with efficacy of a shit load of other medications - including a lot of pain killers & cold remedies.
So, not only can i catch a cold, i can't do anything about it. Am fighting a little one now - i refuse to let the bugger beat me... Just drinking buckets of green tea & trying to eat more fruit & veggies.

Secondly, my meds interfere with the efficacy of the pill.
I've been taking the pill for a few years now because don't want to spend 1 or 2 days every month curled up in a little ball of extreme agony.
When i started my TB meds, i stopped taking the pill. First month wasn't too bad at all & i was quietly optimistic that things wouldn't be too unbearable.
Ha!
A week and a half ago, i spent 4 hours throwing up & then 4 hours curled up in a ball of extreme pain.
Fun.
And there's more!!! My meds not only fuck with other meds, they screw with your menstrual cycle. And right now i am feeling severely PMSy; back ache, grumpiness, mood swings, nausea, hot flushes, food cravings - the whole whammy. It's been 11 days. Is my cycle going to be the shortest ever cycle known to woman? Can i at least get Guinness World Record for 'Woman with the Shortest Menstrual Cycle'?

And that is my rant.

If anyone has any suggestions about how to prevent colds or deal with them in a non-drug way, I'd be very grateful for any advice.
Also, any ways of regulating periods & PMS would also be much appreciated.
Please. Need all the help i can get.

9 days till Germany. Am getting so excited. Just wish everything could be in happier circumstances.

Consumptive Diaries - Part 28: No it's not over yet!

Went to the hospital for my monthly check up & prescription refill today.
And the news is good! My liver function is slowly returning to normal - now a 35 (from a 37 last month). A healthy liver should be around 30, so i'm nearly there! Woohoo!

The doctor did, however, say something that made me think.
I've just been thinking in terms of numbers,("Shit - it's over 100!") with regards to my liver. Wasn't really thinking in any other terms. But the doctor's comment today was that there was still some remaining damage to my liver, but it had nearly gone.
I hadn't been thinking in terms of damage at at all. I was always thought the high numbers meant that i was at risk of damage - not that my liver was actually being damaged. Luckily, because my liver is nearly back to normal, the news didn't freak me out that much.
And the fact that the liver can repair/regenerate/whatever itself is also a reassuring thought.

In other news, i got back the results from my company health check.
It was interesting because it's like a report card & you get graded (A, B or C) for your various functions.
I got mostly As (a first in my life, believe me!!). I did however get a B and C.
Apparently, a B means to take care of this area, but not to worry too much. And a C means that you have to have a recheck at some point.
My B was for cholesterol. Apparently, i've got a little too much of the bad cholesterol. However, i've got a shed load of the good type & they kind of balance out, so there's no problems there.

And the C? One guess.
Yup. My liver. No surprises there.

So, yeah, I am healthy! Good blood, good stomach, good lung capacity, good eyes, good intestines, good heart and good poo.

(They test everything, you know...)

So, in honour of the good medical results this week, i'm posting a photo a rainbow i took last week.
Realised that i don't see too many rainbows in Japan. Don't know if it's me, but am sure i saw way more in England (probably because of the pissy & constantly changing weather). I miss rainbows - so i was really glad i could actually take a photo of one for once. Usually they end up as a smudge in the sky...

17 days till Germany!!

・・・Ups & Downs In Sinland・・・

Been a lot going on in the last few weeks - so here's a round up of the good, the bad & the ugly:

K's dad was diagnosed with lung cancer; luckily is appears to be treatable, but that still means a course of chemo and radiation. Really feel bad for K's family - this year truly has been a shitty one health wise.

My grandma is bouncing in & out of hospital (she's out at the moment). She keeps having random black outs which have become more and more frequent. Hospital has checked out pretty much every part of her body which could potentially cause this, but have come up with nothing. It's really worrying for those close to her; who have to deal with it & pick her up. However, grandma is quite blase about the whole thing; 'Oh, I'm blacked out, so don't feel a thing!' Funny woman...

K reached the end of his 6-month TB treatment. He went to the hospital, and the doctor said he would have to have a further 3-months' worth of meds because he took so long to get a negative sputum test. So, that's not even over yet. But it does mean we'll both be ending our meds in February (if everything goes to plan...)

I'm still feeling OK (touch wood). Have another TB check up next week, so will see for sure then.
Had my first company health check a couple of weeks ago. That was definitely an experience. Had pretty much everything prodded and/or x-rayed. Even did the barium thing. I opted out of the chest x-ray, seeing as i have already had 4 or 5 this year, and think my lungs are doing pretty well. Haven't had the results yet, but as the nurses/doctors didn't let out any gasps of shock or surprise (or even awe, sadly), I don't think anything too awful will show up.

I have actually bought my ticket to Germany - flying into Frankfurt on 19th December & flying out on 11th January. Still trying to sort out the logistics of when, where & who - 2 families & three countries. Fun. Least they're all in the same continent & neighbouring countries.

Last Saturday, i went to the Dr Sketchy Exhibition Party, which turned out to be one of the best nights out i had had in ages. Lots & lots of fun & smiles & friendly faces. And lots of wows! Go here, here, here and here to see who wowed me. Came away inspired - now want to know where i can buy nipple tassels and fluffy underwear...



25 days till Germany...

★ limboland ★

Long distance relationships are weird.
I have never been in one before, and i must say that they aren't the greatest way of having a relationship (unsurprisingly).

The German and i are managing to keep in touch pretty much everyday via email & phone, so i don't feel too far way from him.
Of course i miss him - especially as we were living together & now there's big empty German-shaped space in my flat. But i know I'm going to see him soon.

I do, however, feel in limbo. I have mentally made the commitment to move to Germany next year. I have been telling people that i 'plan' to move to Germany. But i haven't graduated to saying i 'will' yet. And that leaves me with a feeling of limbo-ness.
Physically I'm still here. Mentally I'm moving.

So why don't i just say it? Why don't i just shout out 'I'M MOVING TO GERMANY!!!!!'?
Good question...

But i have a few lame reasons why:
1. I don't know when i will move; i want to get my TB treatment over and done with first
2. I'm scared that if i tell everyone, then it won't happen (and end up looking like a fool)
3. It scares me shitless to move to country where a) i have never lived, and b) i don't speak the language
4. It scares me that i am about to make a huge leap of faith, and leave behind a country that has been my home for 17 years (yes, that is right...seventeen)

Hmmm....looking at my lame list, it appears i may be a tad scared about the move...

Well, let me put it here in a big shout:

I AM MOVING TO GERMANY NEXT YEAR.
I AM GOING TO MAKE A HUGE LEAP OF FAITH TO FOLLOW THE GERMAN HALF WAY ROUND THE WORLD.
AND I AM GOING TO MAKE DAMN SURE IT ALL WORKS OUT AND WE LIVE HAPPILY EVER AFTER.

so there.




(PS My TB meds are still working fine, in case you were wondering)

Consumptive Diaries Part 27: Even more cautiously optimistic

Went to the hospital yesterday to see how my liver's doing on the new meds.

And it's getting better! Last month was 40 something. This month 30 something.
And usually, the liver gets worse at first while it adjusts itself to the new meds.
Still, I've only been on the meds for 2 weeks & have another 3 and half months to go, but i remain cautiously optimistic.

In other news...

The weekend didn't turn out as terrible as i had anticipated. spent it largely on my own, but watched lots of interesting TV (i now know more shark trivia than ever - for instance, did you know that jalapenos will not work as a shark deterrent?); started a new knitting project & made some good food for myself.

And started planning my Christmas & New year holiday planning. Am planning to go from 19th December to 11th January. And will spend all (or most of it) in the company of the German. AND we are going to go to three countries...Germany, France & England. Think a nice road trip is coming up...


Only 6 and a half weeks to go...

A F##Ked up Life

It's half way through friday afternoon, and unlike normal people, i am starting to dread the upcoming 3-day weekend.
It feels like this big empty dark space is rapidly coming up to consume me.

No alcohol, no german, no energy: three interlinking, yet not really related factors.

I'm not fricking normal.

Consumptive Diaries Part 26: Orange

Been taking the new meds for a week.
And i am still feeling cautiously optimistic; I'm not feeling too tired (unlike the complete lethargy i had with the last drugs); my appetite is remaining OK; and i don't have any of the other potentially damaging side effects (there are a shit load of them).

I do, however, have orange pee.
Now you wouldn't think this would be particularly disturbing, and to be honest it isn't really.
But i still have random moments of confusion & surprise. I hope I'm not the only one who looks in the toilet after doing my business, but seeing orange pee for the first time is a shock.
About half an hour after taking my meds in the morning, my pee is BRIGHT orange (think fake orange squash a la tango or fanta). Then as the day goes on it fades.
But i keep forgetting about it; and have little stress moments & think to myself, "Crap, I'm not getting enough water..."

So, that is my little dilemma: how do i know if i have had enough water during the day if my pee is always brightly coloured? My solution is just to drink as much water as i can...





(seven and a half more weeks till i see the german...and counting...)

Consumptive Diaries Part 25: Cautious Optimism

Went to the hospital today, and it didn't have a truly awful experience (unlike my last 2 or 3 visits).
I actually feel cautiously optimistic after today's visit.

My liver has pretty much returned to normal. From a nasty score in the 200s last time, it's now in the mid-40s. He said it's still a tad high, but healthy enough to start TB meds again.
He also floated the option of not taking medication & just leaving it be. It's a low possibility that the latent TB will turn into active TB. Also, he told me that, in Britain, it's pretty normal TB to be left untreated. In Japan, however, the norm is to be treated for it. He asked me if i was planning to move back to Britain in the next year or so, because if so, I could skip treatment.
So, told him that i was planning to move to Germany in the next year. He said that he hadn't looked into TB treatment in Germany. But i was reassured by the fact that the doctor is making efforts to help me out & look at different options.

Anyway - as we both didn't know what Germany's attitude is about TB; and i don't want to run the risk of being thrown out of the country for being a dirty leprous TB sufferer, i have opted to try continuing treatment.
As the last drug (Isoniazid) wasn't agreeing with my liver, I'll be taking a different TB antibiotic (Rifampicin) for 4 months. This one also runs the risk of liver damage, but the really exciting thing is that certain bodily fluids (especially pee & tears) can turn bright orange....

Am not going to get to hopeful, because experience has proven that nothing goes the way you expect (especially with TB related stuff...) But i am allowing myself to be cautiously optimistic.

AND...the doctor said it would be OK to have a glass of beer everyday!! Woohoo! Party hearty Helen is back!

He's gone...

Cried at home.
Cried on the way to the airport.
Cried at the airport.
Tried to convince myself that 8 weeks isn't that long; still cried anyway.

Love you, German. And miss you like hell.

Consumptive Diaries Part 24: Screaming Bureaucracy

7:30pm; Friday night; at home

My phone rings & it's the space cadet lady from the Public Health Centre.
Now, i am glad about the financial support they are giving me towards my meds (25% of cost), but i wish they wouldn't feel obliged to make pointless phone calls to me.
This is a rough transcript of call:

Me: Hello?
S: Hello, this is Ms S from Nakahara Public Health Office. Is it OK to talk now?
Me: Yes.
S: We got a call from the hospital that you are off your medication.
Me: Yes, it was affecting my liver.
S: I see. Did you lose your appetite?
Me: Not really. I was just really really tired.
S: So, you lost your appetite?
Me: NO! I was just constantly tired. It was really hard to do everything i had to do, and i had no energy.
S: Oh. Could you take your medication everyday?
Me: Yes.
S: You didn't forget to take it?
Me: NO!
S: I see. When are you going back to the hospital?
Me: 21st October.
S: I see. And what medication will you be taking?
Me: I don't know; I haven't been to the hospital yet.
S: I see. Well, if your medication changes, you'll have to fill out the paperwork again.
Me: Again?!
S: Yes. Now, we're covering your medication, but only that medication. If your medication changes, we'll have to change the documentation.
Me: Oh...
S: The doctor should do all the paperwork & you just have to sign it. AND you don't even have to come to the Public Health Centre!
Me: Wow! How wonderful!
S: Do you have any other concerns?
Me: Yes. I am worried about the treatment. I am also concerned about how much of an effect this is having on my daily life. Also, i worried about the future; when will this end? I thought everything would be finished by the end of January, but now it looks like it'll go on for longer. And what happens if the next drug also hates my liver? What happens then?!
S: ... Oh. Well, talk to your doctor next time you meet him. And I will call again after your next visit. Thank you. Goodbye.
Me: ...

Am so fed up of people asking me how i feel & how are things because:
A) They don't really care about my response or
B) I end up spouting out a whole diatribe of frustration & stress, which makes my feel like a crazy woman.

Basically, i am tired, worried and really really want this all to be over. I am *so* done with TB.

And on a completely different note: 6 sleeps until The German leaves.

And in other news...

Was walking to the office this morning (as you do), taking my usual underground route under Meiji Dori, when i noticed something different.
First there was a bunch of mannequins modelling autumnal fashions.
Then, lining the walls of the underpass, were lots and lots of photos. All portraits of random people - or so i thought.
A nice lady came up to me & gave me a free pamphlet; apparently this is all part of 'Shibuya 100-', which consists of MOVIEXPHOTOXFASHIONXEXHIBITION.
The portraits are by 20 photographers and are of people in & around Shibuya. Was really interesting as each photographer had his/her own theme. One that especially made me smile was the portraits of Metro staff; all in their various uniforms.
If you have a chance, go have a look see. It's free & on until Monday 13th October.
The website is all in Japanese, but the map shows you where things are. It is worth it; and, did i mention it before, FREE!!!

And in more positive news, The German and i are going to Okinawa on Monday.
One of the things that has been keeping me positive in the last week or so is this website here.
See that beach? Well, I'll be on it on Monday afternoon. 31C and sunny. And it looks like there aren't any typhoons on the way. Yippee!!

Consumptive Diaries Part 23: Dazed & Tired

Went to the hospital this morning to see how my body has reacted to the combination of TB meds & liver pills.

And the news is not good.
From around 120 last time, my liver number has jumped to 228.
(The number is the ALP number - for some really exciting medical information about ALP tests, look here)

As a result, i am officially off TB medication. The doctor wants to see if my liver will go back to normal. So, I'll go back in 3 weeks, and then he'll discuss other ways (if any) of treating the TB bacteria.

And how do i feel about this?
Shocked - i really wasn't expecting my liver to get worse; especially as I've been trying to take better care of myself.
Scared - I don't know what's going to happen next; is my liver OK? Will there be another way of treating the TB or do i have to carry it around with me forever?
Disheartened - there doesn't seem to an end in sight for this saga; thought that the end of January would be the end of everything. F**K knows when it is going to end.
Angry - WHY ME?
Tired - I am so tired of all this.
Overwhelmed - All i want to do today is go home, curl up in a ball & pull the blankets over my head and cry.

Today is not a good day.

Consumptive Diaries Part 22: Teetotal Tedium

I stopped drinking 11 days ago; since my scare at the hospital.
It's not been as difficult as i anticipated, but then again, i've been lying low - no bars or nights out.

I would love to say how much better i feel; how i feel more awake; how much more `wholesome' i feel.
But if i am to be completely honest, i don't feel any different. i'm still constantly tired & lacking energy. I still have a wall of extreme tiredness that i crash into at 11pm every night. I still need more sleep than usual - 7 hours isn't enough for me now.

I will (begrudgingly) admit that the lower back pain i had (which may or may not be related to my liver) has mostly gone. And i definitely don't miss being hungover.
But i miss having a nice glass of wine or a cold beer after a long day at work. Having a soda water or a fruit juice just isn't the same.

Ah, well, only four more months to go........

Consumptive Diaries Part 21: Hospital Date Day

The German and me had our hospital date today - think i mentioned before that we both had appointments this morning.

I am not going to go into all the waiting & bureaucratic crap, because I've written endlessly about it; and nothing much changes. It's long, boring & annoying.

Instead, I have some good news and bad news:

The Good News:
K is finally free of TB. He has officially been declared a '0'.
4 months of hell, hospital & home arrest are over! Yippee!!

The Bad News:
My liver isn't very happy.
Last month my liver numbers were around 30. This month, 123.
If the number reaches 200, i will have to stop taking the TB medication and potential have liver damage.
Am not exactly sure what those numbers mean or are, but it scared the crap out of me.
So, i am now on liver medication as well as my TB meds.

Kiddies, TB sure isn't fun.

Naughty Nights & Smiles

Last Friday, K and planned to have a 'date night' out in Tokyo. I chose Odaiba, because K has never been there and there's a shed load of stuff to do - movie, dinner, bar, beach, game centre, shopping...and so on.
While at work on Friday, i decided to make it a special night, and booked a room at the Nikko hotel in Odaiba. Not only that, i decided to get a room with a view (that's Rainbow Bridge):

Then we decided that a champagne breakfast was a good idea:

And it was. Only thing was that we were drunk by lunchtime; which made for an interesting trip to the Toyota mega web.

The German was in car heaven. And wandering round there with him was like taking a little boy round...'Helen, can i have a look at the Toyota again? Please?' We ended up going back to the car above 3 times...
The funniest thing was watching K look at the cars. Obviously (to me anyway) at some point in his life, K's mum had told him that to look at things he didn't need his hands; so every time K went for a close up look at the cars, he put his hands behind his back so he didn't touch the cars.
(see above photo...)
It was cute watching him & made me giggle most of the day...

But, it was a great day. I really recommend staying at a hotel in the town where you live.
K & i felt great after our special night at the Nikko. So much so that we hope to it again before he leaves...

Must Watch TV

Am going to write a completely non-TB related entry today.
Am bored of TB; am bored of how it infests my daily life; just want everything to be over with.
And that's all for TB today...

As you may or may not know, i am a complete TV addict. And not ashamed by it. TV is my healthy form of escapism & i love watching police dramas (e.g. CSI, Without a Trace, Cold Case); trashy teen dramas (e.g. The OC, One Tree Hill); animal dramas (e.g. Monkey Business, NY animal protection squad).
And that's just for starters.

But that's not what i want to recommend.
For a while History Channel have been showing 'The World at War', a documentary about WWII.
Narrated by Laurence Olivier, it was originally broadcast in 1974 and was completely ground breaking for its time. For me, the most impressive thing is the people they interviewed - holocaust survivors, regular soldiers (from all armies); high ranking government officials, high ranking German military personnel and ordinary people in the street. It's sad to think that most of them are not around any more.

It's been really interesting watching it with K and talking about it. Both of us have grown up with it in our families. Both of us have had grandparents directly affected by it.
But our grandparents were on opposite sides. I've never really thought about how the Germans were affected by it and it's been really interesting & sometimes challenging listening to the 'other side'.

This week was an episode on Auschwitz. That was hard. And the footage? Heart-breaking.
I just cannot understand how anyone could have justified what happened or stand up and say that it didn't even happen.
I remember, about 20 years ago, visiting Auschwitz. Remember the silence. Remember people crying. Remember my grandmother crying. Remember her telling me about her uncles & aunts & cousins who were exterminated there.

We cannot forget.

Consumptive Diaries Part 20: The humdrum life

Am not going to write much about TB today. It's all kind of in the background - no hospital visits till 12th September (when The German & I have our first hospital date).
Instead we have the mundanity of taking our medicine everyday.
Our regular daily conversation is this:
'Sweety, have you taken your medicine?'
'Yes. Have you taken yours?'
'Yes, took it this morning.'

For me, it's been kind of weird taking my daily medication when i don't actually feel ill. But i know those buggering bacteria are sitting there inside me, ready to pounce - which is a bit of scary. So, despite the side effects, i take my medicine everyday.

Otherwise, life is fine. Been surprisingly busy at work this month, but been finding it really rewarding. Spent a lot of my time teaching Japanese cabin attendant (CA) trainers how to train Chinese CAs. Meant that we touched upon a lot of things; training & feedback techniques, cross cultural differences in training styles and lots of role-playing. At the end of training, one of the CA trainers came up to me and said, 'Thank you - your advice was really valuable'.
Nearly brought a tear to my eye, it did...

And last weekend was an 'escape to Izu' weekend. Spent Friday & Saturday night with Cynthia & Osamu, who left on Sunday afternoon. And that was their big mistake of the weekend. It absolutely pissed it down & all the trains stopped. C&S got stranded in Izu-kogen (not even half way to Atami) and ended up staying there for the night.
Meantime, K & I and his friends Austin & Ayako, headed to Paradise Cafe & stumbled upon Ash & Tracey, who were enjoying a naughty weekend away. They invited us over to their hotel for dinner & drinks & we ended up staying there chatting to another German/British couple. Cool people. Thanks to Tracey & Ash for letting us gatecrash their weekend.

And then it was Monday.
The German & I headed to Shimoda station with our pre-reserved train tickets, only to find that all trains were still running late. At least an hour behind schedule!
So i suggested to K that we cash in our train tickets & rent a car instead and he liked the idea.
Good thing we did - looks like the trains were more than an hour late. So while all the masses, including C&S, were waiting around train stations, we had our first little road trip date. And it was fun. Went through the mountains, and although we didn't see Mount Fuji, we felt like we were driving through the clouds. Have to do that again.

And finally, for those of you who have been to Izu & stayed at Iriyama-so. Do you know how old Mama-san is?
She'll be 80 next month! Shocked me. Thought she was late 60s...see, Izu is good for you!

Consumptive Diaries Part 19: Weekly Round Up

Just got back from the hospital for my monthly check-up.
Apparently, my liver function is down, but that's normal when you're taking a crap load of antibiotics.
Also found out that the 5% i have to pay covers way less than i first anticipated.
The 5% only covers directly TB related tests & medicine.
Antibiotics = OK
Drugs for side effects of antibiotics = OK
Blood tests to see if drugs aren't causing any serious damage = Not OK

Still, 70% is covered my regular insurance, so i just have to pay 30% for my blood test (around ￥2000) .

K also had his monthly check. His sputum is now 3, his lungs are fine & so is his liver (minor miracle there...) Still can't go back to work though. Also not allowed to take an aeroplane.
Also under official quarantine, with a public health centre lady visiting him every week.
If he were in Germany, he'd be back at work...the wonders of Japanese bureaucracy, eh?

But anyway, enough TB talk for the moment & onto something a bit more exciting.
Actually, i think it's pretty exciting. It may even be my 15 minutes of fame - though probably more like 1 minute. But anyway...

A while back (a year, perhaps?), Mooney asked me to help him with some English lyrics for a song he'd been asked to write for an upcoming movie. So, we met up at Pronto; he explained his song and the image it was supposed to project. And together we put the lyrics together.
This autumn the film will be released. And it isn't a little film either. It's a big Japanese film, with actors i have actually heard of in it!
The movie is called 夢のまにまに (Yume no mani mani) & the cast includes Rie Miyazawa, Masatoshi Nagase, and, Martine's favourite, Tadanobu Asano.
As i haven't seen the film yet, i can't really tell you much about it. But you can read a bit about it here.
But the REALLY cool thing is that Mooney has credited me for the lyrics on the song (Chimney Road). AND my name appears in the end credits! Isn't that cool, my little 1 minute of fame?

Consumptive Diaries Part 18: The week that was

Last week was an eventful week. It was a complete roller coaster of a week; laughter, tears, extremes of everything...

Monday
I was sick. Had a mad weekend & came to the realisation that i'm too old to party for 3 straight days. And my body told me so very forcefully too (in a kind of projectile way)...

Tuesday
I went to hospital to get my TB meds. Thought it would take a while, because hospitals always do. But, FOUR HOURS??? And most of that was waiting in various lines: initial registration > doctor > blood test > x-ray > sputum test > doctor (again) > payment > pharmacy
But i got my meds. And am on the standard treatment for latent TB. But it is 6 months of antibiotics; which have side effects of liver damage, rashes and other delightful things. Have to take 6 pills a day: 3 antibiotic tablets and 3 pills for the side effects...
Back again in two weeks to make sure my liver's not screwed...

Wednesday
The Davises last night out in Japan. Went to see their room in the Landmark Tower. Wow. Cool view. And spent the rest of the evening trying to pretend it was just a normal evening out.
And it was a fun evening & i managed to not cry for the majority. Didn't handle saying goodbye very well though. And cried all the way home on the train.

Thursday
airport, i was working at Spent the day in a spaced out daze due to lack of sleep. Also exchanged mail with Sandi in her last few hours in Japan. It was a really weird day because while the Davises were at NaritaHaneda airport, and could see planes taking off all day; serving as a constant reminder that they were going. Found it very hard to concentrate...

Friday
Fireworks. Went up to K's place & watched the fireworks from there. Was a great view, seeing the fireworks from the top of the hill with the Landmark Tower beside them. was even weirder considering that just 2 days before i had been in the Landmark Tower looking at the view from the other direction. Would post some pictures, but they're still in my camera which is at home somewhere. Will post some later, i promise.

Saturday
Haircut. Was fed up with my annoyingly long hair. Chopped it off - now is just below my ears again. Again, i know this would be more effective with photos. And again, the camera is at home...

Sunday
Sleep & sofa & German. I so needed all three. Had had a tough week & just needed to de-stress and not do anything. We even ordered in pizza & beer because we were too lazy to walk to the conbini...

So that was my week. A little too much for one week, methinks. Or maybe i'm just not good at coping.

Consumptive Diaries Part 17: I HATE BUREAUCRATIC PROCESSES

I went to the Public Health Centre as requested today.
Thought i'd get more answers & know more clearly what'll happen next, but i completely forgot that this is Bureacracyland and nothing can be that simple.

They told me that my test was positive (which they'd already told me on the phone)
And that i wasn't borderline positive - i am completely & utterly positive. Well, if i'm going to have it, i should have it properly, eh?
And then i had another x-ray to make sure that it hadn't suddenly turned active (it hasn't).
Then they told me that i would probably have to take antibiotics for 6 months (knew that already)
They then went onto the "you-have-to-take-you-medication-everyday-even-if-you-feel-fine-and-healthy" lecture, which was swiftly followed by the "just-because-you-do-not-have-active-TB-it-does-not-mean-that-you-won't-get-it" lecture.
Then she asked if i could visualise taking medication everyday for 6 months (yup, been taking the Pill for years)
Then she told me that the Public Health Centre doesn't actually take care of the medication side of things. I have to go to a doctor for that. Have decided to go to the same hospital as K was in because a) they speak some English and b) they're the best in japan.
So, will go there on Monday morning for another dose of random lectures about TB and taking medication.

And that's not all of the bureaucratic crap...

Once i go to the doctor, i have to get some pieces of paper which i take back to the Public Health Centre, so i can qualify for subsidized medicine. So, no, it's not free for me. You have to be really REALLY sick to get it free. If you just want to prevent yourself from getting really sick, you have to pay for the privilege.
To be fair, with the subsidies, i'll only have to pay 5%. Don't how much the drugs are though...

Will, once again, keep you posted.

Am a bit ranty today - am so tired of people giving me lectures about things i either know about or have already been lectured about.

Consumptive Diaries Part 16: The Results Are In...

Know you've all been waiting for my test results...
Well, i got the phone call from th public health centre this morning & my fears have proved to be true; i am positive.
I have to go there on thursday to talk about doctors & medication, so will keep you posted on what happens.

Consumptive Diaries Part 15: Life plods on

Despite everything that's been happening, life is still moving on.
I would like to have thought that things would be on pause, and wait for me for a while.
But no.
So, things are continuing on. I still have to go to work.
I still have to think about the future & where/when I'm going with the German.
I still have to say goodbye to friends.

I don't mean to say that i am unhappy with things how they are - i am not.
I am unbelievably happy that K is back. It's so much better seeing him at home everyday & not having to go to the f-ing hospital-prison. It's great that we can out together; hang out with friends; be silly again.
In that respect, life IS back to normal.

But i can't seem to stop thinking about the TB test results.
Everyday, i come home & look for the envelope with my results.
It still hasn't arrived yet.

I also keep thinking about the future. I'm scared about everything.
And this is the really fucked up thing about everything - on one side i am *so* bloody happy.
And then the other side i am completely scared shitless.
It's a really bizarre combination of emotions - two complete extremes. And they seem to be ruling my life - i feel like i am being slightly manic at times; up & down like a fricking yo yo.
Luckily, K has been a complete and utter star & is handling my rampant mood swings very well & with infinite patience.

Thank you, K. Love you, German♥

And yeah, 2 more weeks of Sandi. Actually it's less than two weeks - but i am trying to ignore the fact. Just want to enjoy as much Sandi-time as i can before she goes.
Love you too, Sandi♥

Consumptive Diaries Part 14: Testing, Testing, One, Two

I guess you're all eagerly awaiting the results of my first TB test.

Well, to save you the worries, i will share the news:
My skin test was positive.

Now, this may not be a reason for concern, as the BCG test makes a positive result.
But so does TB.
So, I had a blood test today to find out for sure. From what I've read, though, the BCG test has efficacy for up to 20 years. I had mine when i was 9. Do the maths....

And the health centre people were preparing me for the worst. Maybe that's their way though - 'prepare for the worst, hope for the best'.
But i am nervous. Know taking antibiotics for 6 months is not the worst thing, but it's going to affect my life in some ways. Basically, i will not be able to to move out of Japan during that time. I am covered by insurance here, i pay taxes here; no other country will want to take on the financial burden of my medication.
Also, will have to restrain my life - no more big nights out.
Also, cannot take the pill - the antibiotics kill the efficacy.

Please PLEASE let me be negative...

Consumptive Diaries Part 13: HE'S OUT!!!!

Yup, you read that right.

THE GERMAN IS OUT OF HOSPITAL!!!!

He's had to wade through lots of bureaucracy & promise faithfully to take his medicine and to not infect the masses - but he is OUT.
He's supposed to be in home quarantine at his place (which i mentioned before is completely impractical) so he'll be coming back to me. TODAY! So, when i get home tonight, he'll be there waiting for me. Words can't explain how happy & excited i am right now.
I feel like a kid before Xmas...wonder what my present will be? ;)

In other news...
Remember a while back that i was pissed off that the public health centre doesn't test for latent TB? (Read here to refresh your memory...)
Well, i got a call from the health centre last Thursday saying that they would like to give me a blood test to check for latent TB.
So i set up an appointment for Thursday this week.
Then they called on Friday, saying they needed to give a tuberculin skin test BEFORE they did the blood test & i needed to do that 2 days before. So i toddled off to the health centre this morning & got stabbed with a needle.

So, keep your fingers crossed everyone. This week or next week i will find out whether or not i have latent TB. If i do have it, i will embark on a 6-month course of antibiotics. If not, I'll have several beers & breathe a big sigh of relief....

Oh, yeah, i got back from Okinawa yesterday. Very much needed the escape, although it was interrupted by nigh on daily calls from the health centre....
Will write more about the trip when i have more time.

Consumptive Diaries Part 12: The German's Coming Home (maybe...)

The German had the first of his next round of sputum tests yesterday.
He got a 6.
7 weeks in hospital, and he's moved from a 10 to a 6.
And he needs a 0 to get out.

But as i said yesterday, the doctor said that K could get out the week after next.
BUT he told K that what he actually meant was that K would be out in 3 weeks if he got 3s this week.
And, as i said, The German got a 6.
So, the doctor told K that it would be at least another month, probably 2, in hospital.

TWO MORE MONTHS??????

But the doctor asked K whether he would like to get out early (ie next week) and go into "home quarantine". Of course K jumped at the opportunity of getting out of the hell hole hospital.
So now the cogs of bureaucracy are rolling once more...
To get out of hospital, the public health centre has to agree to accept K in their midst & also takes on the responsibility of checking up on K.
It seems that the hospital won't really approve release unless the health centre accepts.

The hospital has talked to the health centre, and it seems that K would have to stay at his place, alone and not leave. And someone will have to bring him food & stuff, but not stay there.
Kind of like a plague victim. Maybe i can set up a table outside his door where i can leave things for him. Then i ring the doorbell and run off.

In reality, for a number of reasons it is totally impractical for K to stay at his place:
1. He has no furniture (except a bed)
2. He has no electric appliances (ie fridge, TV, washing machine)
3. His place in not conveniently located and therefore not easy to get to everyday.
4. The main reason he wants to leave hospital is because he's lonely & needs people around him

So, i called the public health centre directly & explained everything (I did it because the nice lady only speaks nihongo). she was very understanding & said she will talk to the hospital again and hopefully he will be out next week & come home to me.

I am, however, not getting excited.
I will get excited when The German is actually physically home with me.

Consumptive Diaries: Part 11 - Will This Ever End?

Firstly, everyone who's emailed or commented here, thank you.
I haven't replied because i've just been too all over the place to put a logical sentence together.
(And i am a lazy cow....)

But thank you. I do appreciate them & i'm sorry for not replying personally.

So, we're into week 7 now. Sputum test week is upon us and the doctor is still saying that The German will be released in 3 weeks - or, as i like to call it as it sounds nearer, the-week-after-next. The doctor has also said that K will be released whatever the results are. However, when asked what exact day K will be let out, the doctor gets a little bit hazy & doesn't commit to any day.
So everyone, keep your fingers crossed, pray, do whatever you can to get the gods/fate on his side for once.

The last week has been really hard. Both The German and i seemed to have hit our stress lows. Luckily, we managed to stagger them a few days, so we didn't have meltdowns at the same time, but it's definitely not been a fun week.

I get to escape to Okinawa the day after tomorrow, but feel a bit guilty about leaving K behind in prison. But Mummy K is here at the moment, so i can leave with the knowledge that The German won't be on his own.

Talking of Mummy K, introduced her to Mummy & Daddy Sin at the weekend.
Everything went well, so well in fact that the 4 of us went out for dinner last night again.
Which made me think...i am pretty sure that Mummy K is the first parent of a boyfriend to meet my parents.
Guess that means K & me are serious (or i was a complete slut in a previous life and never dated anyone long enough to introduce to my parents.....)
I'll leave you to decide which one is nearest the truth...

Consumptive Diaries - Part 10: Just When You Think Things Can't Get Any Worse

As you know, things in Sinland have been on the edge this week.

I've manage to control my uncontrollable tears, but am still having outbursts of (ir)rational rage. Severely had to rein myself in on the train this morning - wanted to start screaming at people to get their stinky sticky sweaty bodies away from mine. And if one more person elbows me in the back on the train, be warned...

But yeah, i thought things couldn't get any worse this week.

Well, never EVER think that. EVER!
The German talked to his boss about the time frame of moving back to Germany.
And the boss told K that he has to be back by the beginning of September.

SEP-FUCKING-TEMBER!!

That's only 2 months away. and with the whole TB thing, means that there's not much time for The German & i to spend together before he leaves.
And not only that, what are we going to do? What am I going to do?
So, we have to make all these life changing decisions in the f-ing hospital.
And it is definitely not conducive to deep discussions about our future.

And today, The German's mum arrives, or as my mum calls her, the mother-in-law. Planning to go out for dinner with her this evening. Am nervous.
But if she's anything like K or his lovely sister, then we'll be OK.

But to be honest, i really just want to run away from it all. I don't want to make any decisions. I don't want to have to decide anything. I want someone else to do it for me.
But i am not 12 anymore. I have to make my own choices. And what will they be? I have no fucking idea.

Consumptive Diaries Part 9: Studies in Stress

Know i've written about this before, but i am stressed.
Actually, i think it should be written in capitals: STRESSED.
And in bold: STRESSED.
And maybe even italics: STRESSED

No, think the italics diminish the severity of it all.
I'm just STRESSED.

K has his third set of sputum tests last week, and the results came back as a 6 and a 9. His first ones were 10 & 10. He needs a 3 to get out. It's taken 5 weeks to get to 6 & 9.
FUCK - this will never end!!
On the positive side though, the doctors said they may, possibly, perhaps let him out in 4 weeks.
Nothing definite though.

Meanwhile, i am completely losing the plot.
I've casually been observing my varying states of stress and what's been happening to me (as you do)
My stress journey has gone through various stages; first was short term memory loss & extreme tiredness.
This morphed into anger & irritation.
Then i graduated onto an upset stomach.
Which then turned into extreme nightmares & physical aches.
And now, to top off the stress cake, i have myself having (ir)rational bursts of rage which subside into uncontrollable tears.

I think i hit a stress wall yesterday at full speed. Feel bruised & broken & scared.

I want The German to come home, but when he gets home we've got to start thinking about what happens next: move to Germany or stay here. And that whole discussion scares the crap out of me.
I'm still trying to fulfill all my work commitments satisfactorily.
My parents are here & i want to try & make time to see them, but also want to be with K.
K's mum is arriving next week, so feel i should make sure she gets oriented to Tokyo OK.
And i'm not even starting to think about Sandi leaving. Can't manage that right now.

I want to take some time out for me, but i just can't seem to fit it in anywhere.

But, next, the Parental Sins are taking me away to Okinawa. I get to stay in a really nice hotel, see beautiful beaches & ocean and escape everything here. Don't think i've ever needed it more.

And i know some of you may wonder, but K does know how i feel. That's one of the good things about us, the doors of communication have remained open. And i know when i get to the hospital tonight, he's going to welcome me, hold me & let me cry.

Consumptive Diaries Part 8: Ennui

We're onto week 5 now. Another round of sputum tests coming up. Hopefully he won't be as toxic...

K is physically doing fine.
He's regaining some of the weight he lost because of the TB (about 4 kg) and the weight he lost because of pissy sized portions in hospital (1 kg). He's still skinny as hell & looks like a stereotypical TB patient (protruding ribs, etc), but as least he is not losing weight anymore.
He's also pretty much stopped coughing.
And the cavity in his lung is getting smaller - in fact nearly gone.
So that's all good.

And it's also the big problem.

Because he's feeling pretty healthy, he's become increasingly frustrated with the situation.
He's stuck on the 13th floor, no access to the outside - or even the 1st floor, gets no fresh air, cannot speak to anyone and has a large amount of energy that he can't get rid of.
This results in him having increasing moments of despair & it's really hard to see.
Makes me feel completely helpless & i have no idea what to do. All i want to do is kidnap & take him home.

In more positive news, K's sister is here for the moment. Means that K gets to see someone other than me; i get some time off hospital visiting and he gets a load of German stuff.
Also, Sandi came round with an X-box. (word to the wise: don't even bother playing racing games against someone who is a professional test driver, it's kind of humiliating...)
Thanks Sandi!

Got my parents arriving at the end of the week. Ironically, they arrive on an Air France flight the same day as K's sister leaves on one - so they're more than likely using the same plane...
Then K's mum arrives next week sometime.
Think they all will probably end up meeting each other. Not quite how i imagined it all panning out, but hey...

And in completely non-TB related news...
Was talking to Toru of PPP at the weekend. And he told me that Psysalia is scheduled to play at Summer Sonic. SUMMER SONIC!!!! That's so cool. One of the biggest music festivals in japan!
Pretty exciting, huh?!

Consumptive Diaries: Part 7 - Extreme Anality

Well, we're into week 4 now. And it looks like there's at least 4 more weeks.
The German had his fortnightly sputum tests last week, and came up with a 7 & 10.
Seeing as the standard discharge score is 0, K looks to be staying there for a while. The doc did, however, tell K that he is a special case (ie foreign & can't speak Japanese & therefore lonely) so they'll let him out when he gets to 3.
But 7 & 10 definitely aren't 3.

Last week was a bad week for The German.
Firstly, he got the test scores back. He was hoping for lower - which would give him hope - the light at the end of the LONG DARK hospital tunnel. So the results did knock away a lot of positivity - for both him & me.
Then he got told off. Why? Well, apparently other inmates have complained that K hums while he brushes his teeth.
Not only that, the evil German also whistles while he's making coffee.
And that's not all, the naughty disrespectful German has the nerve to use deodorant - THAT SMELLS NICE!!!!!
What a selfish bastard, eh?
So the nurse told him off.

Yup, can show NO signs of ANY positivity in case you may piss off the other patients.

So, in order to improve the German's image, his band turned up at the hospital yesterday with a guitar, a bongo drum & K's bass. What to know how long they managed to play before they got told off? 10 minutes.
But it made K smile - the first real one i had seen all week.



:::WARNING - Extreme Rant Below:::

As for me, i am constantly tired. I am so tired that my short memory is completely screwed - i can't remember things i have done the day before. I am also struggling hard with resentment. i HATE this situation. I hate that i am in it. And i hate that nobody can help me. I hate going to the hospital every fucking day. I hate the hospital. And i hate that i have deal with all this crap and still have to do my job. I dream about having a whole day to myself where i don't have to leave home & can just sit on the sofa, drink beer, and watch crap TV.

And now I've got that out, I'll shut up.

Consumptive Diaries Part 6: Top Ten Frustrations/Stresses

I have been writing a lot about my frustration & stress over the last couple of weeks, but haven't really mentioned how The German's been feeling.
So, Friday i asked K to write down his top ten frustrations & i also made my list.

Here is The German's Top Ten (in no particular order):

1. Not enough food
2. No proper sex
3. No smokes
4. No clubbing/bars/etc
5. Walls/being locked up
6. No beer
7. People telling me how unlucky it is to get infected but then treat me like a bio hazard
8. No Internet
9. No privacy (see 2)
10. Helplessness

Here is my Top Ten (again, in no particular order):

1. Bureaucracy
2. Long tiring days
3. Peer pressure & alienation
   
4. Not being able to sleep next to K
5. Hospital smells
6. The hospital's inconvenient location
7. Saying goodbye to K everyday
8. Knowing that standard EU hospitalisation is only a few weeks
9. Not knowing whether i have TB or not
10. Helplessness

After we compared lists, K said, "Oh, guess my list is more selfish than yours".
Um, yes.

Consumptive Diaries 5: *&$#ing Bureaucracy

Will this nightmare of red tape EVER end?
Thought it was over once i got tested, but no, i breathed i sigh of relief WAY too early.

I thought the test would be the end of it, but it isn't really. The tests only checked whether i have ACTIVE TB. They don't check whether i have latent TB or not.
And all that the Nakahara-ku health official said was "Take care if you catch a cold and come back and get tested again in two years" or something along those lines.
So, i could have it. And if i get pneumonia/bronchitis or any other heavy illness, i have the potential of developing TB.
Fair enough, it is only a 30% chance that i have TB in the first place; and of that 30% only 5-10% get active TB, but still....if you were me, wouldn't you like to know?

It seems that the Japanese health care system doesn't really care about preventative measures.
Anything preventative, usually isn't covered by health insurance (e.g. smear test).
As long as i don't infect anyone else, it's OK. But my future health? No, not our responsibility.

And that's not the only crap i have been dealing with.
I mentioned before about the standard process with TB patients:

1. Doctor refers patient to hospital
2. Hospital contacts local public health of patient
3. Public Health official visits patient
4. Public Health official notifies anyone who needs testing

The whole process should take 7-10 days.
The German has been in the prison/hospital for 10 days today.
The health official will visit tomorrow (day 11).

Also, the health official spoke to me today. BEFORE speaking to K. And she has already spoken to people at K's company AND the clinic that referred him to hospital. Is that right? I mean, is it really OK to talk to EVERYONE else before speaking to the patient?
I'm not sure whether it's
A) 'you're sick therefore you lose all your rights/privacy' problem
or
B) 'Oh, shit, we have a foreigner, let's panic and forget the proper protocol' problem

But whichever it is, it is just wrong that everything has taken so long. And very tiring.

And just so you know what it's like, here's the German's home for the next 2 months. His bedroom, living room & dining room. At least he has a window. And that's the view. No wonder it's driving him crazy.