Post Herpetic Neuralgia

Bloggerpush

2006-06-23T13:11:00.000-07:00

So it has been ages since I really took time to update you. All I can say is that at the moment I spend a lot of time trying to get back into normal life and seeing how my body reacts to it. It is a very difficult lesson. Somdays I can almost be normal and do all that my friends do and other days I stay in and rest all day. I have seen far to many western doctors in the last few months and it has taken its toll. I am angry at them and had to hear so much bullshit and I think with that I trying to cut everything out of my life that has to do with the pain. Including this blog. Boggerpush. I will come back and write again. Hopefully soon.

My biggest fear

2006-05-28T18:14:00.000-07:00

I had a really demanding week and my friends this week turned out to be more of a challenge then a source of support. I have my issues with a flatmate of mine and that got more intense this week too. I am still running from doctor to doctor and it is draning me. Here is my biggest fear
That one day I might end up totally alone fearing all relations with others because of the emtional stress and the psysical pain from that. I fear that I won't be able to keep up what you have to do for a good being together. I fear that people turn away from me because I am sick. I am really scared of that.

Short blogging is better than no blogging

2006-05-22T09:02:00.000-07:00

I am special.
That is why I have to take special care of myself.

And then...

2006-05-22T05:07:00.000-07:00

the vaccum cleaner fell on the right side of my head. OH my god!

Mac

2006-05-17T18:00:00.000-07:00

My mac is really and totally broken. We want to bid for one in the next few days and then I will be back online. I hope! I have so much to tell. New doctors, live changed and you are totally not updated. See you soon

I am taking a blogging break

2006-04-27T04:49:00.000-07:00

a lot of work
a lot of new situation I am adapting to
new body feelings
and a broken but beloved mac
are preventing me from blogging
I come back though

Michael Collins

2006-04-16T23:09:00.000-07:00

I watch so many movies and I keep forgetting which ones I saw. Today I watched "Michael Collins" with Liam Nesson and Julian Roberts.
My irish accent is very good today. I liked it. Not so sure about the performance of Alan Rickmann. I like him as Professor Severus Snape. Happend to be that I watched "the goblet of fire" yesterday. He was fantastic as Marvin in "The Hitchhiker's Guide to the Galaxy" and one of my favorite movies "Blow dry".
There were some nice dialogues in "Michael Collins". On IMDB they give it a 6.8 and I think that is about right.
Healthwise: I slept for 4 hours when it stopped raining. I did a bit of stuff in my room and feel better now. A bit clearer.

Avoiding Kidney failiure

2006-04-16T11:34:00.000-07:00

I have been having a weird couple ol days...
The doc told me to watch out for a kidney failiure with the painkillers I am taking. Yippy Yeah. I have been on heavy medication since well full on 1st of Jan (you remember the hospital trip ?) and I have been (ab)using for the last 3 years. I had a massage on wednesday and a session with my homeopath on thursday and then I felt a little stronger. So at the moment I am taking no or maybe 2 tabletts a day. Down from 8. Of course I pay a price. I haven't left the house for 3 days, sweetheart and I are trying to keep up a connection but I can't really talk on the phone. I go from resting to taking my pills to lots of smoking to bathing in salts to applying essential oils to massaging my arm to eating to lying on a sheepskin to warm my arm and I backing up my music. The pain is very "cause and reaction". Cold water - pain, being touched - pain, sending sms - pain, opening a door - pain, getting out of the bath - jesus ( I am being crucified here too!!!) and how about the rain that is dropping down the sky extending my body to a city attacked by dropping silver bullets. I am high from pain and ganja. I am riding a wave of solitude, meditation, imagination, pain and god. I am just a young gal from the midwest.

I was avoiding taking the pills a little

2006-04-13T13:18:00.000-07:00

problems I don't need

2006-04-11T10:30:00.000-07:00

I got given an ipod! Yeah who had preciously been with a pc. He liked my mac in the beginning and put all his music on there (from mac to ipod). And then he was frozen and I didn't do anything about it until now. I tried Senuiti but that would see the ipod. Itunes wanted to reformat cause it is a pc ipod, right? So I tried Olli's pod extractor and that copied all the music from the ipod into itunes. yeah. But when I tried to play it it couldn't cause it just created an alias to the ipod. Buh! So yesterday I sat there and deleated all the aliases to have a nice library. Cause it is not good when you have 18GB of music of which 12 GB are aliases. I come back from work and open itunes and theres is nothing. The library is empty, totally, nothing, nada....
Everything is in my ipod where I can play it but that is it. Mhhhhh

overwhelmed

2006-04-05T13:48:00.000-07:00

doctors, work, sweetheart, shooping, bodywork sessions, washing, blogging, ice age 2, mama, money, costruction outside my window, cold weather, still no cat, voov, sonica, furniture on ebay, taking my medicine,enough painkillers...

monday I went to the doctors again. I had to wait for an hour with the room full of patients. It didn't really look like things were moving at all so when I started feeling unwell I told them and asked how long it would take. They put me in another room and the doc picked me up. That worked. But he was in a hurry. He didn't understand my blood result. He tested me for Herpes Zoster antibodies and it was on the limit. Showing that I had a herpes and that I didn't. He was confused why it had gotten so bad and asked to do the same bloodtest again to see if anything changed. fine. He transferred me to a neurological pain specialist. I made an appointment for the 8th of may. That is the earliest.
Monday evening I had a family constellation session. If you know anything about. I was standing inbetween my mum and my dad with my right side in the fireing line. Interesting. Today I went to get that blood test done. Got up at 7 for that. I don't know yet how I am feeling. The new painkillers are quite good.

sleeping

2006-04-02T06:26:00.000-07:00

Don't know why really, but I am sleeping as if there is there a prince coming to kiss me. Maybe it is the new pain killers I got. They are called Metamizol and they rock man. Thursday I slept 15 hours. Today I slept 14 hours. And inbetween I sleep 10 hours a night. Tomorrow I see the neurologist.

dry homour

2006-03-31T11:35:00.000-08:00

I am making my tea. This time Schüssler salts which are minerals. In my cup are about 30 of these pills. Sweetheart walks past this and goes:" Suicide attempt?"
Man I could have peed myself laughing if I could laugh that hard.

I would like to

2006-03-29T23:28:00.000-08:00

go swimming
go for a walk with a dog
go dancing
painting
make love
go to a party
ride a bicycle
go horse riding
play tennis
make clothes
swimming in the ocean
hug my friend so hard that they feel how much I love them

I feel so empty and tired and sad. I don't know what to do to do, something good for me, something that will nourish me, But inbetween me and all the things I want to do is an arm I can't use and constant chronic pain. Always... I am so tired so tired so tired

Yep I got the blues

2006-03-26T23:38:00.000-08:00

It finally got me.
This never ending winter.
Being to sick for sweetheart.
I am angry with everyone who let down.
3 days of more pain. 3 years of pain, pain, pain, pain
I am too young for this body
I just want to get out
and I can't

that totally sucked guys

2006-03-26T02:09:00.000-08:00

I am not going so good. The cold, I was working on friday night and some other stress was on my mind. So I spent the day in bed but a good friend had his goodbye party and I need to go out of the house when I am lying the whole day. So I took my ipod and went for a little walk to the place. I was going at the speed of light snails.
I saw these 2 beggars from far and it took me at least 3min to walk past them cause I was soooo slow. I had my arm in a sling and .... well anyway they asked if I have change for them.

too cold for lotuses

2006-03-23T02:18:00.000-08:00

Lotus are lovers of heat. They require temperatures above 70oF for many weeks to begin vigorous growth. The prefer full sun but if the water is warm enough will bloom in partial shade. The blooms open in the morning and close by 4 pm.

Please check out my flickr

2006-03-20T11:46:00.000-08:00

I went to great party on saturday. It was in an old water castle with a river around it. I waiting till the sunrise so for all that staying up please check out my flickr. The link is where the links are.

ne not yet

2006-03-17T17:13:00.000-08:00

I totally overdid it the last days. Was so happy that spring came that I didn't see that it actually isn't here yet. Yesterday I was in bed the whole day and now it is a little better. Have my arm in a bandage and taking novalgin again. I was drinking with the filmstudents on Thuesday and I had TWO beers only but now have a fungus my in my system. I feel like I can't do anything. That was yesterday. Today I feel stronger again. It can't be long until it gets warm. It is so good that I learned so much about my body and that now we are getting better in communicating with each other.
I am basically just waiting for SPRING, SUN, WARM NERVES

huestel huestel

2006-03-15T13:12:00.000-08:00

ahm hmgh
I have an announcement to make
silencio prego
drums
whisper
I think spring has arrived!!!!!

What happened?

2006-03-11T10:13:00.000-08:00

too tired to make a link but....

http://news.bbc.co.uk/2/hi/south_asia/4797064.stm

break o'dawn

2006-03-11T09:06:00.000-08:00

It is still snowing here.
Last night it was raining the whole night. I was working my first shift at the nightclub. I have slept 5 hours or so. I enjoyed it. I wouldn't go out every week if the badger in me had his way. Now I have to cause I get money for it! And I can hide my story behind the tiredness of someone who works nights. In a way it is good. I was prepared for the pain to be intense today and there is so much room for it. I can just veg out!!!!!!
What really got me was the sunrise this morning. I haven't seen the sunrise for a long time. But Saturday mornings will have a whole new entertaiment to them.
I can say pray to a new day with the sun.
I go sleep

9 days to springweather???

Extern and Intern

2006-03-08T03:57:00.000-08:00

Extern:
I had 2 really good accupuncture sessions, one monday night one this morning and my pain is very minmal. My dear friend the needle guy is going on holiday for 4 weeks and I am confident that in a week the warmer wether sets in. It is still snowing here at the moment in the beginning of march? But I found that everytime I got a bit better life stepped up a gear. And it was hard again until I felt comfortable in that and the life stepped up again.
Intern
Sweetheart and I are having some adjustment problems. For me it is learning to deal with a persons needs and taking care of my own. It is like the illness was my husband for so long, determining what place I can go to, which people are in my circle of friends and now sweetheart is introducing his friends and the places he wants to go to. A wonderfull diversion in the beginning but now a filtering process has set in and I am going: playing "Magic" with his friends versus having a hot bath. It hurts to feel that sometimes I just want that hot bath. At the same time there still that big strick to take care of my body. 10 different pills a day, drops 3 times daily, chinese tea to be cooked, good food to be prepared, lots of sleep.... and earning money and going to the doctors... poor little me :-)
But I guess that is part of the schizophrenic concept that is a relationship. I want to give as much freedom and love to this person but simply by being around him I restrict.

Note on the side. Portishead used a sample that sounds a lot like the sound sykpe makes when you are talking to a friend. Oh he oh no, oh he wait oh no, now now now for sure no? maybe I just go and check

lately

2006-03-05T01:58:00.000-08:00

Mh what can I do on a Sunday morning lying in bed waiting for my flu to disappear...
Last weekend Cologne celebrated carnival. You cannot escape it. We had a little get together at work Thursday 10 days ago and I went there even though it was my day off. I dressed up as Oliver Twist and wasn't sure if I should drink or not. I held out for an hour and then had a glass of prosecco and half a glass of koelsch (best beer in the world). The streets got fuller and fuller of celebrating people with various alcohol levels. My friend asked if I wanted to come to their house which is outside of cologne to hang out there. So we went. I own this beautiful security jacket, fluo yellow with reflective stripes and a badge of the coolest trance festival in the world where I get to work once a year. In situations like carnival I wear it on the streets. Even if people are totally drunk they see me and don't bump into me. I love that jacket. People are so much more careful with you. The afternoon was great. Hanging out at my friends' place but the day was so cold. We hand the heating on and were drinking ginger tea but I was frozen to the bone. All of a sudden the doorbell rings and my exboyfriend and another friend arrive. We say hi and my friend gives me hug and when he let go of me it was like little 1cm balls of iron that have been lying in fire for 3 hours got shot on my side with a fucking huge riffle. I don't respond well to pressure. I looked at my other friend and she knew he had hugged me to hard. From then on it was hard cause my ex was around and that is a challenging moment for my nervous system anyway even if I am not also having to apply 50 % of my total metal, psychical and intellectual energy on dealing with intense pain. I wanted home! For a stupid reason we had to have the car windows open and I wasn't getting warm. Back home I took half a valium because I felt completely helpless. How could I calm down those "agitated" nerves. My solution again was drugs and man I need another way! I need emergency accupuntcure. Maybe they have a hotline I can call!!
The thing was also that my sweetheart was working in the bar that night and about 10 of my childhood friends would be there. I wanted to show my face at least. So I took my medicine, drank the Chinese herbs, took a hot shower and went out again. I got to the bar which is 3 min from my house. It has these huge windows along the street and was looking inside and there were people squashed inside like sardines in a tin. Sweetheart was working right my the window and I knocked and knocked until a friend inside saw me and screamed he should look my way. He got out and said hi and he showed me his costume (a monkey) and I showed him mine (Oliver Twist but really wanting to be Ann Darrow that moment). He had to go back inside and it was clear I couldn't come. That was such a sad moment standing there seeing all these people inside singing drunkenly to a song I can't hear and I have to turn around and go. And on valium everything is so slowly and melancolic.

By Saturday I needed a party. Everybody hand been partying for 3 days already and wanted to play too. There was a trance party outside of Cologne and we drove there. Sweetheart, his cousin and my flatmate. The party was great psychedelic trance we like. There were people still in carnival's costumes dancing to 150 bpm. Everybody was smiling and dancing and making friends. I arrived when Dj Elf from Turbo Trance records began his set and he played from 2 until 6 maybe ( we left 5.30). He was very good. He kept everybody on the dancefloor and had such a good sense of the crowed. The girls were beautiful and couldn't stop dancing. It was wonderful. For me even more so. Sunday I slept but then went to my mom's to clean her windows. Why did I do that? Well my mama has shingles at the moment. I haven't told yet, have I. Maybe cause I don't want to think about that. She got it 1st of Feb. And that is all I'm gone say to that for now. But I feel like I should try and help her and she wanted to give me some money for it as well. She played my favorite chillout album Namaskar from Indica Records and made me burgers while I was cleaning the windows in the sunset. My body was tired from a wonderful party and the birds were singing like spring in on the way.
Monday to Wednesday were good but I noticed that I was getting a flu. So at accupuntuncture he treated me for that also. I went to clean my moms floor cause she has shingles on thursday and got caught in a snow storm. The flu was still progressing although i (typing with one hand only from now on) was taking vitamin c, echinachia and ginger honey lemon tea. friday my nose was blocked and i was coughing and i would have been ok if i didn't have to work and do a trial in a night club where i wanne work. i only had to be there and check it out but it wasn't the place for my flu to be in. anyway by now the flu is much better but the pains are worse again. i have that when something has more priority like the flu or work the pain takes a step back only to come back right when the challenge is finished. So now I am so tired. The pain is different again. Not so sharp burning pains but my hand is twitching the whole time from the nerves. It feels very hectic inside, itching here, little burns there then maybe a shooting pain in the ear and a dull one in my jaw. the big ones in my arm are fairly calm. They say in 2 weeks the spring will start here and above 10 degrees my nerves are warm enough so i can get some rest.

Music of the week: Psy Craft- Bad girl, Alegria- Wicked Chicks, oryx - the crow, Earsugar - womanizer, Jack johnson - banana pancakes, greenday - boulevard of broken dreams ( still ?!) and for ages now to soul meets body by death cab for cutie

Update

2006-02-22T07:55:00.000-08:00

I did manage to get around the painattack. Monday morning I had appointment to get my blood tested to see how much antibodies I have against the herpes zoster virus. I have very difficult veins and it is hard to take my blood. I have also started taking my chinese herbs and had accupuncture that evening. The chinese are saying I have a bad case of cold dampness. It seems that while I was living on the houseboat the dampness there totally jumped on my body and now my ability to store heat is lost. The herbs I got are to help my body regulate his heat and cold household. For that they taste like shit. I have to drink it 3 times a day and oh my good. I have a new theory: the chinese they just make you a tea that is roughly 50 times worse that your illness. They give it to you until the illness says: ah fuck it I can't go against that. And then you are healed.

tripple salto around that painattack

2006-02-19T06:04:00.000-08:00

Reinecke

2006-02-18T03:22:00.000-08:00

The weather system moving over Germany at the moment is called Reinecke and it is not making me a happy bunny. Yesterday morning I had trouble walking again from the cold. I went to appupuncture and then it was better for an hour. I lay down for an hour and I felt like shit with lots of pain. I went to work and they said it was cool I could stay home. Went back slept for 2 hours and then watched a movie and it is so painful. I get my chinese herbs today and will monitor the progress.

Drugs, Drugs and more drugs

2006-02-15T10:05:00.000-08:00

I am having a smoking break. It has been two days now and it has been easy. I am so glad Maijuhana is non addictive you have no idea. I was so excited to not be smoking until..... well the pain stays the same. So now I am taking lots of Novalgin (about 50 drops more than when not smoking) and the fog that I would hope lift a bit is still there. In a slightly more chemical way but is JUST AS FUCKING foggy as smoking. Choose your drug my dear. So I am considering smoking again but that is so difficult at the moment, I have to force it in me. I leave it up to the universe I think. Make a few calls see what happens. Shame lots of people know my story and are always willing to help.

Doctor Doctor help me

2006-02-14T20:21:00.000-08:00

Today I have an appointment with the teacher of my accupuncturist. I have made that about a month ago and since then I have been waiting for it.

I don't want Doctor appointments to be the climax of my month anymore

My beautiful floor

2006-02-11T11:30:00.000-08:00

I got this amazing cork floor. For € 100! But I have to clean it a little first. It was once in a yoga school and there is a little glue on it which I have to scrape off. I have spent the last 2 days doing that and yesterday I had to pick up something at the filmschool and that was BEFORE the novalgin set in. There saw me and they looked so shocked. "I know, I am not doing so good. You can see the difference." They wanted me to take the day off but if I am sitting at the desk and I do nothing that is better than scraping the boards. And that what I would do cause it had to be done. Plus I wanted to save my sick days for when I am really... bad. And they all shoock their heads and said nothing and gave me hugs! Until the afternoon I had enough painkillers in me to do my work. I just sat there at the desk and answered the call, did the mail, organised a few things, total minimum. Today and tomorrow we are putting it down. Until this bloody floor is in I have canceled the lover, done enough shopping and cooking so I don't have to go out, put the phone on silence and wait. We see how I doing tomorrow. I am scared and so I should be.

Treat yourself

2006-02-08T19:30:00.000-08:00

If you are coming out of a long illness
and you need to make up for lost time
treat yourself to a younger lover.
Thank you Ambient Storm for keeping me in the game
even if I just read about it.
Now I can play again.

insert: big smile :/ end insert

There must be a reason

2006-02-08T06:45:00.000-08:00

A certain feeling is establishing myself more and more in my soul. Having been through so much for a start I feel very comfortable in my life. Why,... well the constant pain is getting better and better and I see how much of my time and energy it took away. So at the moment no problem is big enough to get me bothered. It can all be done and if not then not. Basta
Something else after all this I am still here. I could have died so many times or gone crazy in my head or done something to greatly isolate myself from society. But all of that didn't happen. And everytime it didn't happen it made a little stronger. I am still here interacting with people and life and there must be a reason.

Hercules coming out of a battle , blood still dripping from his wounds, this fight has nearly killed him. But he holds his head up high for he knows some things only he can do. The gods seemed amused as if they don't have television up there. They know he is always there for them. If a battle has to be won they can rely on him because no battle will ever be as big as the first one where his body and mind had to be overcome.

Just for a day I would like to be a little pround that I am still here, maybe I can hold my nose a little higher, just for one day.

Having a job

2006-02-06T11:02:00.000-08:00

The filmschool just called and asked if I could come early because everybody at the reception is sick. I have this huge smile on my face. It is so nice to feel like you are needed for something. You guys probably don't notice it anymore. But that I (me the cripple who just takes and can't give so much) can help them out a little today. Today I have a purpose tomorrow I look for a new one.

Gabapentin

2006-02-01T08:13:00.000-08:00

A lot happened the lasr 2 weeks. I was trying to look for the time to write it ALL down but that was a scary thought. So you get it in little hours d'ouvres.
I am taking Gabapentin now. I started with 300mg and every third day I take 100mg more. At the moment I am taking 700mg. The first day I swallowd them I got so tired and dizzy and nauscious but that is a lot better now. I spoke to my accupunturist about it and we were both like "Let's try it". Then I had a kinesolgy session (which I would like to tell later you about as well) and that is a way of asking the body on a very deep level what he wants. We checked all the things I am taking and Novalgin was a "multiple surpressor" and Gabapentin wasn't. My body had a "good" reaction. So far it isn't taking so much of my pain but the doc told me that some people take up to 2100mg a day. It still makes me tired after I took it. I was hanging out with these kids the other day and at 1 am I had to sleep I was lying on the sofa and I just couldn't stay awake, It is definitly much better that Amitripptoline. Much better... I still have a brain!

Clues to cause of long-term pain

2006-01-29T18:36:00.000-08:00

The BBC article

Hang on in there

2006-01-27T08:08:00.000-08:00

I will be back soon. Not that I think there are many people missing my blog. Or???? hey fishing for readers here! I am moving houses tomorrow and then I have 24 h internet access again.

I Believe in miracles

2006-01-19T08:59:00.000-08:00

so I had an accupuncture session yesterday which was incredibly good. I had the first hours without pain in over 17 months. I went to sleep feeling very good. In the morning I woke and I don't know what came first but I felt a little pain not much but my soul it was like a big black grey fog had taken over me. So lonely and dull it was most confusing. And I couldn't just shake it of, no it lingered. I decide to go to the laundrette and watch laudry roll around ( I did have to wash!) So I am standing on the street having the blues and this granny comes up to me and says. "Young woman you are very beautiful, I simply have to tell you. " Wow thank I replied and was touched. I decided to go for a walk and by that point I had figured it out. What made me so sad.( I think this is one side of it maybe there is something else too but...) Those hours without pain I realised what I had been missing for so long. All of a sudden this window open and the fresh air that burst in nearly made me suffocate. Not willing to stay in the depression I went to the indian part of town. I have always felt the safest around indians and in London it wasn't so hard to get my weekly india fix somewhere. Here in Cologne it is maybe 10 shops. I found a good excuse to take to every shopowner and bought a few bindhis. The smell, the music, I was nine the first time I went to India and it is still tatooed deeply into me. So I walking on the street and the next granny comes up to me and says. " I have to tell you! You have such extraodinarly beautiful face." All right grannys of Cologne you lifted me out that fog! And then I had so much confusing feelings in me I didn#t know what to do but walk. And so I walked from Clodwigplatz to Gleuelerstr and if I was so busy I would make you a map but it took an hour and I was walking fast. Tomorrow I have another accupuncture session and on monday I see the neurologist.

today at work

2006-01-09T20:01:00.000-08:00

I am redoing the bandage around my arm

Him: "Oh Tenniselbow?"
Me: "No the nerves."
H: "Infected nerves?"
M: "Nerve damage."
H: "chronicly overworked?"
M: "from shingles."
H: "that is the herpes virus?"
M: "That's right. Well done!"
H: "As an old hypochonriate..."

We are bonding

still I can't move

2006-01-09T11:31:00.000-08:00

really I spend the weekend moving from one bed to another. saturday night I watched this show where they show funny home videos. I was laughing so hard that I was in such much pain but I couldn't stop laughing. I was rolling around holding my belly and trying not to have so much pain. Yes it is a difficult balancing act. But if it is this funny I willing to learn and learn. Then 4 weddings and a funeral and on cue I started to cry when Matthew gives the speech at the funeral. You know which one I mean

"Stop all the clocks, cut off the telephone. Prevent the dog from barking with a juicy bone. Silence the pianos and with muffled drum, Bring out the coffin... let the mourners come. Let aeroplanes circle, moaning overhead, Scribbling on the sky the message: He is Dead. Put crepe bows 'round the necks of public doves, Let traffic policemen wear black, cotton gloves. He was my North, my South, my East, my West. My working week and my Sunday rest. My noon, my midnight, my talk, my song, I thought love would last forever: I was wrong. The stars are not wanted now, put out every one. Pack up the moon and dismantle the sun. Pour out the ocean and sweep up the wood, For nothing now can ever come to any good."

And it isn't if this weekend wasn't packed with events. Sharon is not doing good, birdflu is in Turkey and Asia drowning in 3 meters of snow.
I am waiting for my insurance card to come through and then I am calling the doc. Hopefully I get it today and I am at the doc tomorrow or wednesday.

the last few days

2006-01-06T08:58:00.000-08:00

have been really hard on me. I worry too much since I went to hospital. That was a real knocker. Been working and it has been so hard just doing the basics. I got Novalgin at the hospital and have been taking that. Tomorrow I move to my moms place and there is no internet. Postings might become a little less for this time but I keep you updated.

not so good

2006-01-02T09:41:00.000-08:00

I did go to the hospital
I am still not doing so good
can't move much
tomorrow is my first day of work

worse

2005-12-31T07:53:00.000-08:00

is bad right now
i think i go painclinic if i can find somebody to bring me there
or opium

fucking nrw year

calmer

2005-12-29T12:05:00.000-08:00

The nerves got a bit quieter today. Two fucking days it took me to get over this drilling story. I managed to dance a little even moving my arm. Let's see how it is by tonight. I have to go into town drop off my contract, by stamps, go food shopping and get back home.
Anybody for a lift

Drilling above me

2005-12-28T09:21:00.000-08:00

So I had the nerves all under strict (! hihi as if this would ever be possible) control. I went to visit my mom who lives in town and slept there also. In the night I woke up a few times feeling cold but I was to sleepy to do something about it. So in the morning I was far to cold for my nerves to stay relaxed. Then it started snowing and snow clouds are very heavy clouds and I can feel the pressure on my little ones. When I was 12 I got stuck in snow caused traffic chaos that was a nightmare of 6 hours. So I always get a little twitchy anyway when it starts snowing strongly and I have to get somewhere. I had just showered when in the flat above us they started drilling and hammering out tiles. That was so intense. We tried to get out asap but even so pretty nerve torturing. I did my shopping I had to do, took the train home and walked back because the bus was miles away. I just wanted to get home. The pain wasn't so bad at that point but when I got home and it got afternoon they became more & more agitated. I just rested the rest of the day. Took a bath, listened to so nice music, watched some TV and went to bed early.
This morning my arm is heavy. It doesn't want to move so much. The clawing during the painattacks is getting more and more evident to me. I notice I am not holding a fork the way I used to, or the phone; the fingers seem to move closer and closer together and I have to open my hand with the other to do things. Not good. To me this screams of long term damage if it continues. That was a lot of typing. Need to figure out podcast!

I feel I owe you

2005-12-25T13:09:00.000-08:00

a longer posting. Much has changed in the last 3 weeks. I accepted a job. It is only 14 hours a week and I would work 4 afternoons a week. I felt it was a good step to be part of society again to have something to do plus it gives me health insurance. Best of all it is a job I love doing and it is still in my industry, film. So I am going to try and get on incapacity benefit here. Then I can slowly look for a place to stay. Step by step. In the beginning I couldn't make sense of this and how I could possibly get there but I have so much support from my friends and my new employer that I couldn't not try. So I went to London and got the first batch of my things or better what I could still rescue. I tell you I got myself into some very weird situations in the course of this illness. Trying to get some more stability will for sure be good for me.
The health. It is better. Even London where I thought it would be absolute hell was do-able. Sure Oxford circus is not the place to be for me but I am working with my nerves more and they are appreciating it. I'd say it is milder pain still everything I do gives me pain. I am also trying to stand a bit more in life and do at least a little something everyday. Go into town or see some friends. So I am pushing myself a little more also. You know even if the pain doesn't go away I would like to at least try and be as normal as possible. Been eating good food and enjoying it also. No more diary, no more white flour, no sugar, no additives. Just fish, boiled veggis, rice. I thought I would feel more like I am loosing out on something but I am keeping a balance. If I want to munch I have licorice or a little organic halva. This mornings breakfast was scrabbled eggs and slightly friend banana and it was very good. Mhhhhhhh It is wonderful to feel the effects slowly creeping in.

I spend xmas alone and I had a wonderful time. I had the choice of xmas with my grandmother, uncle and mom and a friends party with 20 people. Both opptions made my nerves go "iecks" so I stayed by myself and it was very relaxing. Of course I can't really go christmas shopping, I can't eat this fatty christmas food and the stress of having so many people in christmas excitment with all the hopes and expectation is just to much. Statistically most suicides happen around this time. It is the shittiest to feel alone during that time. Every time I drifted into a little red and white melancoly I called a friend or someone called me. So I stayed well clear of any depression. I have been very good anyway, the last few weeks to tiptoe around the depression. But when you have no family and you have nothing material it is hard to watch this display of tradition, excitment, consumption, genetic bonding and to often fake feelings. Will I get a present this year. I have been such a good girl, santa!

Merry Christmas

2005-12-24T19:00:00.000-08:00

A wonderful christmas to you all
I hope you are enjoying the day to the fullest
seeing the baby jesus has his day today
love lm

Ambient Storm

2005-12-16T12:10:00.000-08:00

I don't have a sex life as you might have noticed. Last time I had a date I got this really bad pain shooting up my nerves and it so painful. And it was our first date and man it made me feel very vulnerable. So I am rather staying out of this game. I would make a terrible girlfriend. I can't go anywhere and my behaviour at times seems... egoistic. Being touched can be incrediably painful. Flirting is a good past time to at least feel a little like a woman. The other one I discovered the other day.
Ambient Storm http://ambientstorm.blogspot.com/
Her sexlife seems so fullfilled that she is overflowingly sharing it. I can understand the level of intensity that she must feel.

Indeed

2005-12-14T02:14:00.000-08:00

the bare will to live is a very interesting and complex feeling
much more so than I ever thought
I have been working again. The weekend I was barely able to do anything
by monday morning I had recovered so much that I could take another 2 days
today I worked another 3 hours and now I feel like 2 weeks in the caribean would be benefitial
but I am not letting it get to me and I keep going
more mentally
the other day a train drove passed me
very quick and very polluting
I realised that unconsiously I was blocking the train's impact on me
Fortifying my aura on that side

I can do that now? Unconsiously protecting myself like that. Wow I must be getting better.

I would write you some

2005-12-10T11:33:00.000-08:00

stuff but my hand is too painful

lyrics

2005-12-06T09:52:00.000-08:00

I wrote these lyrics about 12 months ago when I was living on the boat and in so much pain that I wanted to jump of that peticular boat but didn't because to much pain to move.

It's called "gathering of the tribe"

I want to...
I need to...
I have to...
I trust that I will
One day
long lost tribe where are you

The base....
The drums
the voices....
are getting louder, faster
day by day
tribe let's gather together

Signs are screaming at me
so loud, so loud
Lost souls weeping without knowing
so loud so loud
It has come, it has come

can you see...
can you hear....
can you feel....
fate kicking in,
maybe it's me
Tribe, maybe it's me

So lost....
so scared....
so alone...
Darkness blinding me,
please hold the fire for me
tribe, let's walk the path

Signs are screaming at me
so loud, so loud
Lost souls weeping without knowing
so loud so loud
It has come, it has come

Can't help it...
Can't stop it...
Can't ignore...
Keep hearing it
voices of long lost wisdom
please tell me you hear them too

To love...
To sense...
To feel...
my imagination has no limits
purple skies over golden land
joy living with us

Signs are screaming at me
so loud, so loud
Lost souls weeping without knowing
so loud so loud
It has come, it has come

Signs are screaming at me
so loud, so loud
Lost souls weeping without knowing
so loud so loud
It has come, it has come

Is it true for pain too?

2005-12-05T17:02:00.000-08:00

Mind can accept any boundary anywhere. But the reality is that, by its very nature, existence cannot have any boundary, because what will be beyond the boundary? - again another sky.

That's why I am saying skies upon skies are available for your flight. Don't be content easily. Those who remain content easily remain small: small are their joys, small are their ecstasies, small are their silences, small is their being. But there is no need! This smallness is your own imposition upon your freedom, upon your unlimited possibilities, upon your unlimited potential.

Osho Live Zen Chapter 2

rain and pain

2005-12-05T01:20:00.000-08:00

I don't know what it was today, the rain or the massage or the little bit of chocolate I had yesterday. Maybe I felt pushed into this new job and flat. But my nerves don't like something and don't feel good. You must know by now what that means. If I had something at least that would kill me, But oh no pain doesn't do that. Pain just drives you crazy. If at least I had a visible disability but people don't know when I am in pain. Maybe if you know me well. The way I hold my right side, the irreagular breathing, the inability to listen to your stories and so often the glance, as if I am not here, dreaming. I can't sleep tonight. The pain keeps me awake and not sleeping causes me pain. Seriously I don't know what to do anymore. I had maybe 10 days of no pain in the last 16 ! months. I can't anymore. I don't where to take it from anymore. I have been trying to go to South Africa because I believe the climate would be good there. I have tried to get the money together to go there but I don't have any support. I mean I don't have a family that could get me a ticket, the family I have is so distant they aren't interested in keeping that gen pool. I live with friends that are kind enough to put me up but I am not stupid. I see how much trouble it gives them. Really I could do with a nurse who takes care of me for a few hours a day and here I am trying to make myself useful and be as little of a nuisance as I can be. I don't have health insurance or money left and I think if I don't make it soon I won;t have friends anymore. And now there is this oppotunity to take this job and the room. Everybody around me is excited and thinks it would be really good to do it. I would have to find another job and that means a minimum of 30 hours working for me. Plus food shopping, cooking, laudry, cleaning and hopefully not more than that. I wish the idea of this new life would give me the energy to start it, to give me strenght. But I can't seem to explain to my friends how bad it is. In the beginning yeah but after some time everybody gets to the point where they want to bring me back and I honestly don't think I can do it. I just about mange to work a week a months and that week is everytime almost to much for me. If anything happens out of plan I am in shit. I can't affors to get a cold, a cough, get caught in the rain, not have the right food, a coffee by accident and the shit hits the fan.
Suicide seems less of a hurdle. What scares me is the idea of these painkillers forever. Imagine lieing in a bed, never having the energy to morve out of it. Occasionally your mind would want something when the fog of the opiate lifts, any kind of stimulation but you can't read a book anymore because you willl have to read the sentence 3 times to NOT understand it. You will start the page and not remember it at the end. You don't have the energy to do something with your hands, No in fact all you do is lie there and see the sun make shadows on the wall. Maybe you wantch the dustparticle dance is the sunlight. You see the people around you grow older. What stories would I have to tell to them...
"Know what I got to do today"
My spirit seems to have shrunk to its skeletton. I ca' t stand it anymire.
I will try and sleep now and then tomorrow I check in again.

offers

2005-12-03T00:41:00.000-08:00

wow I got a job offer, an offer for a free massage and I got offered a room yesterday. Mercury is moving forward, apparently. My nerveous system felt funny. The stress of the interview, the excitment of the people around me and my own excitment made my nerves tighten up but somehow the pain shook hands with joy and hope. A pain like I guess for you when you laugh too much and your belly really really hurts. I couldn't sleep and have to stop myself of thinking about to much. This pain told me for so long to stay in the moment because only like this it was doable. And now? Even the good stuff stimulates my nerveous system to a degree that is uncomfortable. Like a pedelum hanging still down, no movement to the left or the right. But I a quietly very grateful. Thank you

I am drinking a lot of ganja tea at the moment rather than smoking it. I have 2 teas one at about 10 am and then around 6pm again. This works really well. I am flying like a kite but it really does make the pain be more "over there". With that I smoke about 2 joints as well. In the mornings when I wake up and until the tea kicks in and then throughout the day if I am doing something a little more "challenging". Only thing I feel so little pain once I am on my daily dose that I think I am healthy again. An hour without pain and I think I am Rocko. The western medicine says it will be with me my life.

rocko says it won't

Very strange

2005-11-30T15:01:00.000-08:00

The trip was very hard in the end. The last 2 days were just a little to much. However because I saw many friends again and new places my mind is stimulated and wants more. I have so much energy and so much pain also.

I'm back

2005-11-29T09:14:00.000-08:00

but super finished and in terrible pain. Will write when recovered

fix and foxy

2005-11-24T21:23:00.000-08:00

I am going to Munich tomorrow. I need to get out of the house and a friend invited me to a party. On the way back I will pass by my cousins. I want to see also how I am doing in the cold, it is minus 10 at night. Then I will know if I have to leave and go to the sun or if I can stay here. I am coming back Thuesday evening or Wednesday morning and I will be leaving my little mac here. Too much to carry.

After much packing I need to rest. The pain is very intense.
C u soooooooooooon.

here we go again

2005-11-24T12:29:00.000-08:00

the currency that runs through my affected area is getting stronger and stronger. I would say 160. If I had more stress stroed in my body I would have shooting pains now. But the sessions and the knowledge I have now is helping to keep that down. This morning anyway. I will check in back tonight

Why me ?

2005-11-23T18:11:00.000-08:00

I had another wonderful cranio sacral session on Sunday. It gave me energy and felt like it realigned all the chakras and meridians in my body. I was laughing and singing and joking around but the pain has be getting stronger and stronger again. The frost has started and when I go out and feel the biting wind, the nerves on my cheek go apeshit. Taking a shower is becoming more and more of a torture again. I have to sleep with a hotwater bottle every night and burned myself on monday. I keep the bandage on 12 hours a day and throwing camomile tea and poppy seeds down my throught. All the memory of the pain I had last year is coming back and I am terrified although it isn't that bad yet! But I remember what it felt like.

Lieing on an iron bed waiting for the torturer with the glowing iron to come back again and again.

health update

2005-11-20T20:39:00.000-08:00

currency in the affected nerves: 90 if to 220 V is the max
shooting pains: 4 if 10 is the max
I had another Cranio Sacral Session last night. Such a wonderful deep relaxation and a lot of healing. I am feeling good these days. I can do more things, have a bit more energy and that helps me to smoke less. What has been the best. Brushing my teeth for exsample used to hurt like fuck( my right hand and the nerves in the jaw) so that I did it mainly with the left hand, now I can do it a little again with the right and it isn't so agonising.

It's like when it has been raining for months and then you see a tiny little blue spot in the sky. The joy is overwhelming.

Firstly

2005-11-17T00:02:00.000-08:00

let me congratulate the pakistany cricket team to their win over england.
and South Africa for their win over India. I hope they get the record!

Secondly
I am trying something new. When people ask how I am I answer differently for body and soul. My body at the moment is ok, I have seen much worse. The pain at the moment is mainly in my hand, I mean the constant pain. I still have the shooting pains in all affected parts but now I can have maybe 3 min without one. That is real progress you have no idea. My soul feels great at the moment. I am really happy excited about the future. excited that maybe in a few months I could be healthy again. I am really enjoying life at the moment.

Thirdly
www. unicat.net
Wow I am dribbling. I want one.

Working

2005-11-07T23:06:00.000-08:00

hey I'll be working this week and have very little time. I'll be back soon....

Kubla Khan by Samuel Taylor Coleridge

2005-11-05T12:19:00.000-08:00

Around 1796, Coleridge started using opium as a pain reliever. His and Dorothy Wordsworth's notebooks record that he suffered from a variety of medical complaints, including toothache and facial neuralgia.

A friend told it to me once I had taken Codein. I remember lying on his lap and giving in to the sweet rhythems of opium. I want to learn it by heart so I can tell it to myself when in pain.

In Xanadu did Kubla Khan
A stately pleasure-dome decree:
Where Alph, the sacred river, ran
Through caverns measureless to man
Down to a sunless sea.
So twice five miles of fertile ground
With walls and towers were girdled round:
And there were gardens bright with sinuous rills,
Where blossomed many an incense-bearing tree;
And here were forests ancient as the hills,
Enfolding sunny spots of greenery.

But oh! that deep romantic chasm which slanted
Down the green hill athwart a cedarn cover!
A savage place! as holy and enchanted
As e'er beneath a waning moon was haunted
By woman wailing for her demon-lover!
And from this chasm, with ceaseless turmoil seething,
As if this earth in fast thick pants were breathing,
A mighty fountain momently was forced:
Amid whose swift half-intermitted burst
Huge fragments vaulted like rebounding hail,
Or chaffy grain beneath the thresher's flail:
And 'mid these dancing rocks at once and ever
It flung up momently the sacred river.
Five miles meandering with a mazy motion
Through wood and dale the sacred river ran,
Then reached the caverns measureless to man,
And sank in tumult to a lifeless ocean:
And 'mid this tumult Kubla heard from far
Ancestral voices prophesying war!
The shadow of the dome of pleasure
Floated midway on the waves;
Where was heard the mingled measure
From the fountain and the caves.
It was a miracle of rare device,
A sunny pleasure-dome with caves of ice!
A damsel with a dulcimer
In a vision once I saw:
It was an Abyssinian maid,
And on her dulcimer she played,
Singing of Mount Abora.
Could I revive within me
Her symphony and song,
To such a deep delight 'twould win me,
That with music loud and long,
I would build that dome in air,
That sunny dome! those caves of ice!

And all who heard should see them there,
And all should cry, Beware! Beware!
His flashing eyes, his floating hair!
Weave a circle round him thrice,
And close your eyes with holy dread,
For he on honey-dew hath fed,
And drunk the milk of Paradise.

Now I get it

2005-11-04T13:55:00.000-08:00

Healthy doesn't equal happy
happy doesn't equal healthy
I can be happy even if I am in this intense pain. It is ok people will not think you are healthy again. People will not assume that you have stopped wanting to be healthy. They will understand how important those hours of happiness are for you.

Dolormin

2005-10-29T13:00:00.000-07:00

I hate this. It messes with your brain like a zebra on E. I just want to cry and feel so alone in it. I don't want to talk, I don't want to socialise, I don't want to eat but it doesn't give me the sleepyness that Valium gives me. I can't get the vibration of it. I don't understand it. And if I don't understand it how can I relax into it.

mayan birthday

2005-10-28T09:40:00.000-07:00

My sign in the mayan calendar is White ecletric mirror and today is my birthday. I am getting a cranio sacral session today and then I am meeting with the medicine student I talked about. It looks like I am moving again and I want to get as much info out of him before I go. Then I have run out of dope again. At the moment I am so sick of having to smoke all the time so I decided to wait until I can get some instead of trying desperatly to get some now. That did result though in me taking 5 dolormin extras yesterday. That is 2000mg of Ibuprofin. Recommended daily dosis is 1200mg. Only then did it slightly help. I can't imagine that this is good for the body. Maybe it is ok for a few days but long term. It messes with my brain also. I couldn't a clear thought together. Put things down and couldn't remember where. Was trying to organize this day today and needed somebody to lend me his brain. I went to see a doctor 2 months ago and she said the problem with PHN is that the painkillers don't grip anymore. This is why they give valium and morphium. She also said that they don't know if this pain in PHN is coming from the damaged nerves in the affected area or if the pain has eaten itself so much into the memory of the brain that it just keeps going on and on. A or B but the pain is there.
I also give myself a smoke break every now and then to see how it has been progressing. Well it has a bit maybe 10% has gotten better in the last 2 months.

Could it be the perfect breakfast

2005-10-26T11:20:00.000-07:00

porridge cooked with ricemilk
add a teaspoon of Tahini and a teaspoon honey
....
Halvaporridge

Halva my salvation on the comfort food side. Sesame paste that is good for my nerves and honey that is good for my soul. A sweet that has no sugar, nuts, chocolate. Whoever had the idea all those years ago. Right on dude

the knot

2005-10-25T09:05:00.000-07:00

Things feel a little complicated at the moment. So I have started doing the following visulasation. I imagine either I am the rope or there is this rope in front of me. I feel how tight the knot is, how that is for the rope and then I let it slowly open itself. I feel the expansion of the material, how it streches and how good it feels for the rope to be untied. I am doing that over and over and no knot can stay knoty that way!

new findings and new roads

2005-10-23T10:35:00.000-07:00

A friend of mine gave me the number of an old school mate. I gave him a call and we had a long chat on the phone. He studies medicine, has learned accupunture, natural medicine and chinese medicine. Alright! He gave me 4 different names of doctors he thought could help me. One is a pain specialist. This semester they have neurology and he wants to speak to his professor. He also said that he would give me access to the medical libaries so I can read up the latest research. Na does that sound good or what.
It comes however at a time when a move is needed. I need a home that I can stabelize in. It is getting far to cold here. The real autum hasn't started yet and they are predicting it will come next week. It is about 12C at night here which is very mild. The kreeping cold is increasing the pressure on my nerves slowly but surely and it is only october.

So this is my wish
A place I can call home for a few years. Has to be hot stable climate.

I can't think of more I need. Just that would be great.

new technology

2005-10-21T09:22:00.000-07:00

Yes I am skyper, I am googler, I'm a flickr too
I play my ipod in the sun
Oh I am a gmail, I am a blogger, I got VCL
I play my ipod in the sun

ah no more rain

2005-10-21T02:10:00.000-07:00

I was going to have a smoke break. This morning it started raining though and I have bad pain and today is Blue Solar Monkey day and I want to pulse in order to play!
As soon as I am out of the worst I will write down all I have learned about shingles and phn. A little first aid kit on herpes zoster, guertelrose, il fuoco di san antonio. I have been reading some interessting stuff but the more I read the more it is clear how little the western medicine knows about it. I had a flatmate whose parents were both doctors and she tried to be a good girl and did a few semesters of medicine. When I had my second outbreak she was fascinated. Apparently they study it for the understanding of the nervous system. On ultrascan you can see all the little nerves being inflammed and irritated and you can see ALL of them.

Rain

2005-10-19T12:16:00.000-07:00

It started raining today. I woke up and heard it. At the moment my nerves are slightly irritated as if they hate this constant dropping sound. I will see how it develops

new intensions

2005-10-19T05:40:00.000-07:00

I am streching daily again. Mostly my legs and the left side of my body. A little dancing also. Many excersises I can't do because of the vibrations like running or cycling, some I can't do because they involve the right hand like ball games or carrum, swimming is to cold. I would love to do Tai Chi when I have money but streching and dancing is also good. I am eating less again. I was eating far to many times without being hungry. It is much easier to deal with the pain when I am hungry. It feels like it is easier on the body. The dancing is wonderful because I can make the movements flowing into each other. it has stopped raining now and that feels much better. The sky is clear and blue again. it got colder with the last full moon and that I feel.

The experience of working

2005-10-18T07:55:00.000-07:00

I worked for 44 hours. Two days together, one day off, one day work, weekend and then 2 and a half days. This was working most of the times with a friend in her office. I got all the luxeries I could have hoped for. A well equiped kitchen, easy hours, freedom, a good organic supermarket nearby, a fantastic vegertarian restaurant. After the first 2 days I had to have a break because of the strain I was developping in my arm. From the typing the phoning, the doors etc. See when I get a light muscle cramping it causes pain again. I couldn't calm it down; having problem eating also from the new stress of working. Sleeping got more difficult and I was like wow I gotta take a day off. I wore the bandage the whole time in the begining with a long glove over it. To keep it warm. In the end I took the glove off and people saw the bandages and asked what I have. If they ask I tell, if they don't I don't. The standard answer at the moment is: " I have nerve damages from shingles I had 3 years ago. " Usually I stop here cause if I tell them what that feels like, I get that mh funny look of pityful, disbelieving helplessness. www.zipitonthisoccasion.com
I had fun working again. To have a reason in the morning to get up and then you do your run to work and maybe there is a good song on the radio or you see that funny guy on the bike again. There was the question of bagel or soup at lunch time or which shops are near that I can go in. I had to call people to verify their addresses and that was fun too. I was making friends, flirting, getting funny stories. I found one woman who lives in the falt I lived with my mom in 12 years ago. I had work collegues who annoyed me and problems I could solve. All of it was very intense because of the heightend alertness that this pain gives me, I felt like a child again learning all these things. All is new and unkown and that takes a lot of my energy.
The pain was there of course. I also didn't smoke or drink teas while I worked. I felt I could't do it if I had. In the beginning it was the constant abuse of my right arm, in the end it was the fingers. Typing became little needle shooting up the first joint of my fingers. this constant ever changing pain... i can't understand it

gathering of the geese

2005-10-16T18:40:00.000-07:00

The big trek south has begun. We were lucky enough to see the geese get together to fly south. First we noticed the sounds. We looked up and there they were. More and more came, maybe 1000 birds. They practised fomation flying while waiting for the others to join them. They seemed confident they could do it with everybody having a quick try at the front position. A few minutes and they were off, straight south west. Much better than south east where the bird flu is. We wished them well.

I did

2005-10-15T12:01:00.000-07:00

I finished work on Wendesday and I was going to go to London yesterday but I didn't. Because of a really stupid story that did bring up a lot of issues. We were going to go to the fleemarket this morning but didn't. Because of two really stupid stories.

I did have an amazing sleep because I drunk ganja tea this morning on the way to the fleemarket. When we got to bed again it just started coming up and I had such a good sleep. No undertone of pain making it difficult. Just pure clear sleep.

new days new dawns

2005-10-10T17:40:00.000-07:00

The pain has intensified in the last 2 days.
Yet somehow I feel stronger.
I can only bear it pumpped to my eyeballs with the magic painkiller and trance. Very lound on the headsets. So that it screams at me to listen to it. Don't feel like it listening to the music. And today I don't care if tomorrow is better or worse. If this ever goes away or not. Just here and right now is the moment I need to block out the pain. Life seems magical at the moment. I stepped into the garden yesterday and saw a wonderfull moon, venus and the sunset. All together

Pain?

2005-10-10T16:07:00.000-07:00

The funniest is that still to this day I get surprised by the pain. I opened a door and this enourmous pain shoots into my head and I am thinking: " uh how weird. Did I twist it.... mh ah no it is the neuraligia that I have for 3 years now!" Doh! Happens again and again. I don't know if this is a good sign or a bad one. Never mind. More trance....

the world around us is changing

2005-10-09T11:35:00.000-07:00

200 000 people are affected by hurricane stan. 18 000 dead in the asia quake from yesterday. Bird flu has now made its way to turkey and I wonder what will happen today.

a brilliant letter to people without chronic pain

2005-10-08T19:03:00.000-07:00

I found this here
http://brain.hastypastry.net/forums/showthread.php?t=94497

LETTER TO PEOPLE WITHOUT CHRONIC PAIN:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand.
These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", concentrating, "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

„ Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!¡¨ If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine.

Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

It brings me to tears cause there is so much truth in it.

still in pain

2005-10-08T13:50:00.001-07:00

there are so many things i want to tell yet the pain is strong and i can't type again. lying in bed with a sling around my arm reading the internet.
i don't want to have this anymore.
i want to be normal.
i want to live.
please
please
please
please
please
please
please
please
please
please
please
please
please
please

painkillers

2005-10-08T06:10:00.000-07:00

Now that I have no dope available I have started eating painkillers like they are sweets. I can't go outside cause it is windy and the wind hurts. As I have none I see how it helps me with eating also. No stoned no munchies. I don't feel like eating. I don't feel like living when things are like this, and eating is the most fundamental expression of that. I gotta eat!

Day Off

2005-10-06T14:53:00.000-07:00

I had to take a day off today. The accumilation of stress in the nerves made me think that it would be better to stay at home. I have moved the mouse to my left hand at work and tried everything to make it as easy as possible on my right side. However there is a constant reaction to life that comes automatically from the right. Opening the heavy doors at work, shaking hands, picking up the phone (I uses the loudspeaker a lot so I don't have to have it near my brain so much). writting which I can't do fast with the left yet. I find it hard to eat properly also and lost 2 kg in the last 7 days. I have put myself under a mandatory smoking break. I didn't want to have to deal with trying to cope with working ( I haven't really worked for 2 months now) and being stoned. I can't do that, basta. The first night I still had a joint left and that was good to calm the system down after the days stress. Now I have run out and this is day 2. The pain is intense and my patience is running damm short. I remembered working that it is wonderful to have a job and I dying to have this feeling again. Not to be poor and spend everything on medications. I want to be normal! It would be wonderful to be able to live without this constant constrainment. Yeah very intense pain I have to stop.

Working

2005-10-05T18:44:00.000-07:00

So it has been two days ofworking so far and it is intense and good. I have many things helping me and I think without that it would be really difficult. Two more days I have.

A little life and a little work

2005-10-03T14:10:00.000-07:00

I have been enjoying a live the last two days and willl start to do a little job tomorrow just for a few days. I will keep you updated. In the meantime germany is defintly getting colder and colder... Crisp I'd say.

The concept of helping

2005-09-30T16:41:00.000-07:00

I have been thinking about this a lot since I got sick. I had to start asking for help and in the beginning this was so hard. I found it hard to say I can't do this, at least not on my own. I felt that everytime I had to do this I was loosing another little bit of my independance. I had to add something new to my list of things I can't do on my own. That was one reason I cut my hair. I had beautiful long blond hair but I couldn't look after it anymore. It was just to much having the arm up while I shampoo it, dry it, brush it, it all became one very painful process. And there was nobody around to wash it for me so I cut it off. It got progressively easier for me to ask for things. Accepting it is a whole new ballgame but I don't want to talk about it now. Asking for help is delicate little process. What you might need most probably nobody can guess it. For me it was often just having somebody around who would maybe eat with me, tell me about their live, hold me when I was going crazy from the relentless pain eating me up. I was totaly confused once after coming back from the doctor who had told me there was nothing she could do except morphium again. I went to the the body shop and got this lady to do my make up. Just having that attention was nice even if I looked like pricilla queen of the desert afterwards.

What I never needed was somebody asking how I was, how the pain was, if I needed something. The nerveous fretting people start doing when they are helpless. That was hell because I would lie there in my dark room seeing nothing but the devil gripping one side of my body and this energy was around that made me even more nerveous, more lost, more scared. I could feel how sorry they felt for me, how desperately they wanted to help and they were loosing all their sensitivity. So I would try and put on this show where I was a bit happier and pretend that what they did was good for me. But wasn't that me helping them trying to help me. In the end I didn't want to face it anymore and could have only very very special people around me. I was just terrified of seeing their helpless look and there was one more person who couldn't help. Without any signs of people who could help I was loosing hope a bit too fast.

So what kind of help did I appreciate. Ah nothing easier than that. A good sign is a good listner. If somebody ask about the pratical things of my illness I get a bit more awake. I can only eat special things, I can't do a lot of things, there are reasons why I have to do certain things in a special way and it all is because I am still reigned by this pain. So very specific things help me and it takes time learn that. Often when I tell somebody what I have they have some kind of idea of what treatment they think I should try. Let me say it again: "SHUT THE FUCK UP" I don't want to hear it. It took me 3 years to get to this point and you take one min to tell me about a treatment you heard about once in a TV show. That is not helping that is trying to be smart ass. There was a time when I started crying everytime I heard about a new treatment. Crying of course sets of the pain again so really I got no help.

Helping me is pretty unglamorous. I need help going food shopping, going to the cash mashine, driving me to the doctor. I can"t really go out still so getting the basic things like cosmetic and so on is difficult for me. Just getting touched is nice for me because I can be touched so little anyway. That is what my body needs, my soul often just needed entertainment and stimulation. It gets pretty boring at times. Even having somebody around who knew they can't help me was ok so long as the person was ok with it. Sometimes it is ok to not know and to be a bit lost together. At times I get pretty intense. Anyway I am a woman with a lot of ideas, with a lot of fire and the frustration had to come out some way or another. I can take a pain attack now if it is no longer than 3 days. After that it gets hard cause I cannot sleep properly, can eat, can't do anything and as my body weakens I find it harder and harder to cope with it. And let me tell you again that only somebody who has had shingles knows what this pain is like. At worst it is like your side is lying in burning fire, broken glass and has a 240V electrcity current running through it, all at the same times. Oh yes baby! If you had it you know what I am talking about. So I would freak out unable to handle the situation and I must confess I would shout at my friends, kick them out and feeling even worst after this. But no time to calm down or reflect because of this pain. So a good helper has to be able to take that knowing that it has nothing to do with him. And maybe even find it in him to come back the next day for more of it.

Which brings me to the next subject. Why do we help. I have been asking myself this a lot because I love helping. I jump on anything that looks like anything could be done for it. I have to give my self a lot of credit here. There is a lot of suicide in my family so I am not to surprised I want to manically improve the situation for someone. Deep down inside of course I wanted something back. Gratefulllness sometimes but often it was the power that you get. If you can help somebody in need you are powerful you can change things. I wanted to feel like I can make it better and of course I made the same mistake everybody does with me. Putting on my blindfold when seeing somebody in need and just wanting to "help" in anyway. Not listening to their needs. I have realised that struggle is good. And help sometimes is in the way of that. Somehow it is needed and through it we learn. I can't really help much at the moment which is good cause I don't know what the right way here is.
But I will let you know if I find out something. And if you discover a truth on that subject please do let me know.

Long Day

2005-09-28T22:47:00.000-07:00

I had a busy day. And now I feel just how much more has to move before I am healthy again. It might be getting better but the pain is full on again. Just one hour without pain, just one...

Call boys/girls for chronically ill people

2005-09-28T10:24:00.000-07:00

They would of course have a long briefing by your doctor. Best if they have some medical expertise. Best if it would get paid by your healthcare system.

health update

2005-09-27T13:17:00.000-07:00

I have started taking Azinat N. Very little at the moment 3 drops 3 times a day. I can take up to ten but then I think I would shoot out of my pants. Yesterday I had a little to much and it was like I speedy gonzales. http://www.soluna.de/html_d/frameset_start.html It feels good like I have a bit more zest to do things. Only problem is that I can't move that off. I can't go running or something like that cause that causes pain. I am also drinking Carocoffee with as much Cayenne as I can take. And that really helps with the pain. The pain has changed again. Now it feels more like a reaction to what I am doing. Still strong especially in the evenings but it has lifted a bit.

Quote of the day

2005-09-25T23:20:00.000-07:00

This woman is talking about her friend.
"Her name was Luise Macintosh. You know Macintosh ahm like Microsoft."

Jesus Christ

look what I just found

2005-09-25T12:07:00.000-07:00

http://www.stariq.com/Main/Articles/P0001798.htm
it helps with releaving pain in shingles and PHN

yesterday

2005-09-25T10:11:00.000-07:00

I decided yesterday morning that I didn't want to stay in the house all day. The family had to do something in the city and I decided to come and get out. My mistake, I lifted to much and that was a big strain on my arm. We were gone for mabe 6 hours. Yeah I was finished afterwards and I still tired now after the nights sleep but it was good to test out what I can do again. It could have been a lot worse. I found a tarot site yesterday and took some cards and my challenge in this life it said was to stay healthy, to look after my body and make sure we are a good team together. I have a tendency to only see the goal I want to get to to steam ahead full power. Often I do that and completly ignore my body, pushing myself on all levels. The PHN has been a very good lesson in learning to go with the rhythem of my body. To listen and to take the right action. I used to have a lot of energy. When I was 16 I had 3 different job one of which was my own little business, I was doing school and worked on having good notes. I was cycling everywhere and even had a social life. That last year I had problems just feeding myself, the shopping, the cooking it was already to much for me. I could see my friends or go anywhere. Just a complete still stand and I all I could do lying there in a dark room for days was to feel, reflect and meditate.

2005-09-24T10:39:00.000-07:00

Somehow today seems to be a strange day. My nerves are very active already and it is early. It has started raining and the birds are flying around like the all forgot to put the oven off and just remembered. My doctor called yesterday to see how I am doing. I forgot to tell him that I have really bad back pain since I went to see him. I will call him next week tell him that and make a new appointment. He said it was intense for him after I had left and he developed a bad headache. The sesson defintly set something in motion which at the moment is just a blur of past emotions and ideas.

Sensitivity

2005-09-23T18:27:00.000-07:00

I found it hard to accept how sensitive I am these days. Very sensitive to food first of all. Give me coffee and see what I mean. But then it is movements, sounds, lights, textures, electrosmog and so one. And then it extends to people and situations too. My nerves start hurting when I get into a scary situatuion or if I walk past somebody very uncentered. Been getting good at reading thoughts also. Just the spontaneous ones. Like when I sit down on something that could break and somebody looks over and thinks that. And I am pretty good at sharade. The secret weapon in the team.
It must be because my body got so afraid of the pain lets say when I get hungry. I guess I discovered a few times that waiting to long till I eat causes pain. Next time I sense it earlier and eat and that has a less painful effect. The body learns to give the signal earlier or I just listen better to it. Confusing.

The day after

2005-09-21T18:21:00.000-07:00

I spend the morning calling my friends and family to tell them how it was at the doctors. I think I have told it like 10 times. So I will not, not now at least. I have good day today. Had a bit more energy and wanted to steam ahead but I do try and do it all a little slower than I would like to. This september is turning out to be one of the sunniest I have seen in my short life. And boy am I grateful for it. That has made the pain very bearable today. I would give it a 20. I had 2 good news also and that has made me a happy bunny indeed. I did try and order the stuff he pescribed me ,an iron alchemy thing but they have changed the formula and it doesn't have the iron in it anymore, same name though. Strange called the doc and am waiting what he says.
In the meantime it is also the day before Rita. I hope it all goes well. Lots of support to the people.

Flutters of....

2005-09-20T09:10:00.000-07:00

The day I see the doctor. I am a little wreck already. Trying to think what I have to take (all my medication for sure), what I have to tell him (ahm my whole story of 3 years in 90 min, go girl go you can do it) and things I musten forget to ask (the kid I live with got worms can I do a worm treatment to?).
The best about this blog is that I can moan about it just exactly how shit it is to have this. I miss my life, I miss icecream and playing basketball (and I don't even like it that much). I want to be able to be touched again and sit in a bus without being terrified of movement. I want to know how I am when I not high on some painkiller. I want to work and dance and live I FUCKING life. I don't want to pester the people around me so much so I choose the general public instead. lol
Of course the pain is out of control already. Just the stress of packing things and thinking about it. The emotional stuff too, the hopes, worries... so much is going on in my mind. Every movement is shooting pains again and it is only 10am here.

Bored

2005-09-19T14:22:00.000-07:00

I am so bored today. Even cleaning doesn't help and it always helps. I don't like watching TV to much so that is not an option. I can think of things to do but it is just so uhhhhhhhh. Listening the ipod I have been since this morning. I am on song 202 of 1090 and the battery needs recharging. Big pain in my forehead

My fist reader

2005-09-19T10:24:00.000-07:00

Thank You Bob!

August Pain attack Part 2

2005-09-19T09:09:00.000-07:00

Saturday 6th of August 2005
I have slept around 7 hours which is good. I can hardly sleep more. I want to talk about last night. S and Y came back late and asked at some point how I had been. I told him about the coffee I had and he showed me the caffein free coffee now. I am enjoying one now. It is actually quite nice, I like it. I don't think I can have to much, we will see... S asked about my nerves, how it feels and what happened when it started and had a few ideas of what treatments I can try. He suggested chinese medicine and this is something I would love to try. I have heard the words "damp heat" describing what I have and that sounds about right. Thank god the chinese have experience with that stuff. As soon as I have a base I could start looking for a good chinese healer and start trying it out. What makes this situation stressful for me is that when people discover what I have most suggest some kind of treatment. I have heard of many, many many and many. I would love to try them all. After some time I felt so incompetent-ant. Especially cause I haven't had the base or money to try out various treatments. I didn't want to say that I didn't have the money so I kept thinking they must believe I don't want to get better. It is easier now. Someone suggests a treatment and I add it to my mental list. I also tell them now that I will need time to experiment with it. That if I bombard myself with to much I won't know what helped and why and how I can adjust it. I think people see what a living hell this can be and really would like to get me out of it. At times it gets a little fierce.

This morning my arm is a little stiff from the pain yesterday. It isn't painful at all at this time of the day. I believe because the nervous system is rested from the sleep. Or my head finds it easier to supress the pain. I don't know but it is better in the mornings. At the moment it feels like this, my arm a medium currency running through the nerves there, very little pains that feel more like an itch. A slightly stronger itch is behind my ear and a mild pain in my jaw. Oh but now a plane flew over the house and now the little inside of my ear in on fire baby. At the moment sound is bloody interesting for me for I feel it as pain. This plane was circling over the house, less intense pain when it is further away and more when it is closer. Can you imagine how that feels. For me the plane is right here next to me in this room. It means I am very aware of a lot of things around me because they cause pain. The cars, busses, planes, helicopters.... In the beginning that really freaked me out big time. The London double deckers gave me the creeps, actually they still do. I was trying to sound braver than I am here. But when they drive past my right side it actually feels like the are driving right through my right side. No kidding. But here comes something interesting. I love trance, psychedelic trance with lots of beats per minute. The base carries a lot of the pain for me. Somehow when the pain comes in regular intervals it is easier to relax into it.

12.30pm now and I have showered, eaten and tied up a little. Some shooting pain I can feel now if I had to time it I would say one every 10 to 20 sec. The whole region also the face, arm, rips and of course my ear. On the scale of to 10 it is about a 4,

12.30pm now and I have showered, eaten and tied up a little. Some shooting pain I can feel now if I had to time it I would say one every 10 to 20 sec. The whole region also the face, arm, rips and of course my ear. On the scale of to 10 it is about a 4,
One hour later and I helped my little friend JJ tidy up her room. I have lifted a few to many thing and this I can feel now as a general achiness in the whole region with the shooting pains about a 5.5 now. That reminds me I have to take my medication. So that is next on the list. I will have one more tea also and today if it is possible smoke less. Ah the issue of smoking. Most peoples reaction is that they think the smoking makes it worse for me. So here are my top 10 reasons for smoking.
Number One: THC is a painkiller that still grips.
Number two: As a relaxant it helps me with the muscle cramps that I get from the constant stress on the nerves.
Number Three: It sedates. No movement brings relieve. So when I am stoned up to my eyeballs it is easier to lie down for 4 hours and not feel bored.
Number Four: It is better to be a full time stoner than to be in constant never ending excruciating pain.
Number Five: If it wasn't dope it would have to be something else. Various painkillers that all have the similar effects. I prefer dope there. Less side effects or at least I can deal with the ones.
Number Six: I can socialize. The pills make me quiete and so out of it I don't want to participate in anything..
Number Seven: I can dosage it nicely. An example this happened recently in London. I was on the bus sitting in the back. The driver had to break all of a sudden and I fell into a pole with my right arm first. That can trigger a pain attack that will last at least 5 to 10 hours depending. So the tactic then is joint and bed, numbing the pain, relaxing the cramping muscle and rest till the memory of the incident is over. It takes a long time for painkillers to work. The joint is easier, have a toke and a few min later it is brings relaxation.
Number Eight: I can deal with the side effects of smoking. I don't want to deal with the side effects of these chemical bombs. I know enough people who have smoked dope for many years in enormous quantities and they are ok body wise not great but living. I haven't heard of people taking codein for ten years every day. Sure there is stuff you have to compensate for but overall I feel safer in the hands of illegal dealers than in those of legal pharmaceutical companies.

I believe it helps. I am pretty sick of smoking by now. But check out the side effects of the next pain killer I am supposed to try. I just took my medication and had a look at .... TRAMADOLOR uno 150mg brought to you by HEXAL. The side effects and those are the one they call common that means this happens in more than one treatment out of 10. These include drowsiness, head aches, nausea, vomiting, the shits and of course if you take it for a long time it is addictive and what I am very afraid of is that once I stop taking it the pain comes back unchanged or even stronger. I had this with a product call Amitripptoline. I forgot it for 3 days and the pain that came afterwards was completely new. Most of the pain I get are familiar to me so it was very scary when the new pain started. A slight tingle that started in my fine facial cheek nerves. It then traveled along the nerves back and forth gathering in intensity till it became a very strong burning pain that raced back and forth. I stopped Amitripptoline a few weeks ago and that pain has not come back. Good!!!

Saturday afternoon
We went for a shopping trip. Just the weekly food shopping. Ok I can't push a trolly. That I learned. And that I should wear a sling when I go out. People bump into you. You might not notice that but because each collision causes such intense pain I remember. That or the phenomenon where when you have a wound people are unconsciously drawn to it. There was a toddler in the supermarket and she was freaking out. The typical 3 year old tantrum. My friend was struggling with the frequency of her screams and I was too. I did 90 min of shopping and than the pain levels where getting a little out of control. We came back and I felt disappointed that I can't go shopping so easily. It has been a problem for me for a long time. I am not sure but the combination of the air inside these places, the visual stimulation, the music and don't forget I am high on something for sure when I go in there so it is even weirder. In addition to that carrying the shopping is physically very exhausting. But on the up side when I came back I managed to calm down the pain within 2 hours. I had tea, put my arm in a sling and just did nothing for 2 hours and than I could walk around a little go to the toilet, make more tea and so on.That is good. That was real progress.

Note on the side: have you ever considered how difficult it is to take care of your menstruational needs with one arm?

2005-09-18T19:10:00.000-07:00

Still Sunday and I am tiiiireeeed. Had a full on family day with cooking and stories, photography and tooooo much food. The pain is more now also of course. I would say fifty and bilding up fast. I was sitting in the sun this afternoon which feels so intensly good. Need more sun. It heals the nerves and gives a very good tan. Sexy sick chick

Sunday musings

2005-09-17T15:16:00.000-07:00

So the sun is shining today and that makes everything better. I get cold very quickly and when I get cold the pain becomes either more intense or I can't bear it easier. But today the sun is shining and my pain is very managable. Maybe a 30% on the pain scale. I am cooking which is always a good work to do for me. I can take my time and usually it is easy movements. On Thuesday I have an appointment with a new doctor. This is all together my 6th doctor. I am not counting the therapists. I am trying to get to emotinal about it. Not too much hope not too much excitement. But I am hoping he can help. Give maybe some more insights or ideas.