Didi's Days

Mon July 06 2009
Message: Hello my old friends at RH website!
Maybe you remember me from years back, when I was a regular member of the site, blessed with Rutger’s friendship, and not to forget blessed with the support of all of you!
The last posts made about, and coming from me, were around the time my dear mother had passed on.
My HIV was progressed to full blown AIDS by then. I was already on a rather spicy dosage of morphine due to bone marrow inflammations as a result of HIV-meningitis and HIV-encephalitis.
In case one would wonder what the heck is HIV-meningitis/encephalitis, well it’s an inflammation in and around the brains. However with a regular person this would be caused by a bacterial infection. In the case of an HIV patient, it’s caused by the combination of a failing immune system and the HIV virus, which means it will not respond to antibiotics. It will only be cured by curing the immune system.. pretty tough to do with someone with AIDS.
Anyway, at that time, back in 2004 my life was slipping away. I remained in the care of my father who had some sort of combination of Alzheimer’s and schizophrenia, both without treatment, and he became violent towards me.
For months I had been laying flat on my back, hooked up on a morphine pump and somehow, slowly, the bone marrow inflammation had calmed down. I had damaged quite some nerves in my back but the silly thing was – or better said, a miracle on itself - the constant spasm in my muscles due to the nerve damage was the contra weight for the muscle weakness I have because of the handicap I am born with, and which lead to a disability that kept me in a wheelchair.
The spasms made my weak muscles just about strong enough to kick my father off me when he attacked me, and I was able to put a tiny bit of weight on my legs as well..
Yes..
I could stand up out of the chair!
But alas, there was no time to enjoy that miracle, I had to flee out of the house, into the safety of a senior building. Ok, I live amongst old people but I am safe.
Starfish saved my big butt in that time, by not only helping me with some furniture, clothing, because I had lost much weight and only had pajamas to wear since I had been so ill for so long I didn’t even have clothing my size. And the worst period was when Starfish even had to send me some money to buy food.. because I had nothing left and no one really helped me out, because arranging a lifeline takes time.. red tape… always red tape.
Well, balancing on the edge of life and death I tried to cope in my new home with my lovely dog Bo .
I tried to get back into an HIV therapy program, but that wasn’t possible. I had stopped taking HIV drugs in 2001 because I was resistant to most of the drugs and allergic to the drugs that still would work, or had such side effects that the quality of life was nowhere to be found. Nerve damage, stomach bleedings, and such a low count of blood platelets: I was about to die of spontaneous internal bleedings. So taking the drugs was no longer an option at that time.
But by the time I asked for a new try, they said I was too far gone. My T-cell count was 0 and my organs were starting to give up on me. The dosage of morphine I took through the pump should have killed a cow, and as far as the good doctor could tell, I would join that metaphorical cow within 3 months - if you know what I mean..
Then one of the doctors found a therapy combination of some drugs that might help. I would be partially (starting) resistant for some but it could at least give me some more time. I wanted to go and get that drug combination, but the doctor said I was so weak that I would die from the effects of a starting treatment and therefore he wouldn’t give it to me.
My AIDS buddy Tom insisted on giving me a chance, - if I had to die anyway, then rather trying to beat death then just waiting for it to come and get me. So, I signed a form and we started.
It was a struggle, laying on ICU, slipping in a cardiac arrest, coma.. the works. But I made it.
I gained strength, my immune systems started to build up and I started to live. I gained a lot of weight again, as I always do when I am on HIV treatment, but according to my dear doctor I’d better be fat then dead… yeah he has a point there hahahahaha!
I had to switch to several different sets of drugs after that, because I am resistant to as good as all HIV drugs. If a minor bit of a previous drug is used to make a new drug (as in ‘based on’) I will become totally resistant in a blink of an eye to that drug. The virus recognizes it and is armed against it.
Last year, since November 2008, my immune system fell down again. T-cell count around the dangerous area of 200 and lower.. AIDS level again.
I was resistant to the most important component of my combination. I became ill again and weaker ...and pretty darn scared.
My walking ability went up and down. Due to spinal cord injury from the bone marrow inflammation, I have partially paralyzed leg muscles, but I can walk. I had physical therapy for year and they taught me to walk short bits. First with a high metal brace around my leg and with the support of orthopedic shoes (also paid for by the RH Starfish Association!!!!! –kisssss-) but then I started to lose weight again due to the side effects of the drug that didn’t work anymore. Food went down the drain within 5 minutes.. so even though I was still a big girl, I had lost loads and loads. So the brace didn’t fit anymore. On the other hand losing the weight was less straining on the muscles so I trained myself in walking with only a crutch.. no brace.
Meanwhile, I became more ill and then they told me there were no new drugs for me. Well, there was a drug but that wasn’t strong enough to take over from the drug I was used to and it wouldn’t help to switch it for a lesser drug.
I was devastated but two months ago, in May, studies had proven that after a little while longer the drug would work just as strong for resistant people as the drug it has to replace in my case.
So.. we gave it a go. And guess what? My T-cell count is rising.. 650 now! (normal count for a healthy person is around 1100 approximately).

My life is ok for the moment. I picked up painting again (used to be an artist) and put my work on a site called Seesle. www.debbie.seesle.nl is my own page which I am proud of, and some of the paintings are used as front for real greeting cards at www.saluer.us .
I paint portraits, but mostly I paint nudes, rather erotic, which sell pretty well. I have commissions all the time of late! Really really great! This for instance is a commissioned portrait of a little boy..

And errrmmm here below is one... big boy

It’s a hobby which gives me the chance to forget everything around me, and I can go to sleep and rest when I get too tired. And every now and then I can sell one, which is great in itself of course.
I drive a powered 3-wheel scooter outdoors to walk my dog (she runs besides me or sits in between my legs) and to do my groceries with.
Often I told Rutger about my adventures on the scootmobile ( that’s how we call those wheelchairs in Dutch).. it’s nice in summer, and when I feel ok. But when I don’t feel ok and need to get back soon to be able to lay down in bed it is a nightmare. And with bad weather it’s a disaster.. soaking wet from rain or snow or hail.. pneumonia after pneumonia, bronchitis, sinusitis, and so on.
There are little cars especially for disabled people. They only go 45km per hour and they are allowed on cycle lanes and you are allowed to park them anywhere near a store or whatever, on the side walk too, so you don’t have to walk far from the car to your destination. So, I applied for such a car at the health and disability office in my city.
I cannot get a car, and if I buy one myself they will adjust it for me but take away my scooter (which I need to walk my dog and to take a stroll around the block with nice weather and such).
Well, I have no money to buy one. So I tried to get a loan. I have HIV.. I don’t work… no loan.
Then, my friends.. last week..
Rutger called me to tell me he wanted to help me out with my dream about that little car.. and he would use the money coming from selling the short films theater tickets for my little car!!!! I was floating on a cloud and no one would get me off it anymore.. no one took me off.. someone sent me a little higher after that, because then some saint in the audience offered a car, ready to be used by me!
Starfish, with the precious help and heartfelt support of Jeroen Thomas, gives me a little car to use, my friends.. no more winter nightmares about cold, fevers, pneumonias.. and I can even drive to some friends I normally cannot meet anymore unless they come to me!
My dear friend Rutger and his wonderful Starfish Association once took my hand and they haven’t let it go ever since.
I wanted all of you who might thought I had disappeared in thin air, to know that Rutger stayed in touch year in year out, came to visit me whenever he could and he followed me.. in my ups and my downs and Starfish never abandoned me. I am grateful and wanted to share with you how happy Rutger and his friends made me.
This is where donations go to, amongst other things, and this is the miracle of situations and goodness coming together.
Big kiss and when I have my little car you bet you’ll see a pic of me and my StarfishVROOOOOOOOOM!

Love, and stay safe,
DD

Mon May 21 2001
Message: Hi Rutger, did the day start with a smile for you? hope so! Maybe a little sunshine too, -here it's coming and going but at least no rain. Well, already Monday.. This was a special weekend. Maybe it passed unnoticed for many people, but AIDSmemorialday was 'celebrated' last Saturday. It's been years since I joined the crowd in Amsterdam where we all remember the ones we lost because of hiv/aids. The performances, the speeches, the song 'THE ROSE" sang after we are finished and the bag pipe player ( after some ups and downs still able to play!) who plays THE ROSE while everyone marches- wheels or hangs on to partners, buddy's or anyone's arms to move, to the Dam, where the bells play the rose again, together with the bagpipe player and then we let go white balloons with cards attached to them, with messages. Personal ones. It makes you shiver to the bone. But, the most beautiful part of this all happens still in the Beurs van Berlage ( where the Memorial takes place), after the speeches and sometimes songs, dances -inspired by hiv, and often performed by 'patients' -Heck.. I don't know what theme they had this year I just realize....-sigh..- That most beautiful part takes place in the dark, where we all sit in silence, and then suddenly people start shouting, or at least they try to, tears often make it hard to speak- the names of those passed on. I used to shout the names too. Started with only one, I didn't know more people. Then I became one of the guys.. yes I know I am a woman, but my friends were all men. I lost almost every one of them, two less close friends are still alive and one lives in the States. Within 4 years I had to shout all those names. 28 names. Two women were added to that group as well.. Some died after a long struggle, horrible therapies, disappointment and finally defeat. HIV had won. Some died by their own had, couldn't cope anymore. After my last and closest friend died I became too ill myself to go without someone to help me, and I didn't and don't have such a person so I use Memorial day- or better, the whole weekend to remember them in my own way, in my own home. I rarely take out the cards, -funeral cards often, little things I have from them or the emails I have saved on disks, because it's too confronting, painful. But this weekend it was time to take them out again. I remember one of them always writing under his emails, "a coffin is always less comfortable then a condom: stay safe!"... Yes..straight forward but so right. My friend Rem came over on Sunday and we sang the rose- in a good version and one we tried to record on webcam, -ha what a laugh.. cam isn't made for that amount of sound and volume, and somehow the image was blurry too, -no focus option on the cam. But, we tried anyway. Some friends were able to see it, with others it kept buffering. Doesn't matter. The ones that know what The rose means were glad to get it, even though a day late ( Sunday instead of Saturday), and others have a funny impression of what the heck I am doing in this room at the weekend hahaha Another day is coming up soon- May 26. One I rather don't remember but still somehow 'celebrate' it..or more.. acknowledging it..maybe. The day I got the results of the hiv test, after several inconclusive tests,-from which the first result came on my birthday, the 11th.. it was a hell of a month, tested April 25th, and 5 wrong test, one screw up at the lab, a new test and then.. Bingo. In the middle of a live broadcasting at the studio -I was a radio host- the phone rang. Oh well.. still 5 days to go, and decided to think of the good things that happened in the second half of my life, the one after I knew I have it, and not to think too much about what was good in the other half of my life, the time before the test. It can be nice to wear pink glasses and use it to look at the past, but sometimes that's only fooling yourself which I don't do ( much) anymore. OH MY..... I've filled your gb way too much dear RRRRR.. but besides my own sh*t, -(latest update) now a bit spastic, hiv has eaten some nerves in my bone marrow/spinal cord which will progress as with for instance Multiples Sclerosis, and not reversible, so now trying to find the right neurological pill to make the spasms less severe ... so nice when you sing and suddenly your head starts to bang forward, or backwards.. tiring though ( even though it's annoying and makes ya tired it does give.. let's say.. funny situations.. but never thought I would get spastic. grrr. Well, hanging around that neck of yours, and again, sorry for filling up the book, but needed to share. -kept this 'memorial in private' real private, so now a few of my wolfie friends know why I was a little more 'locked up' then usual and didn't tell about the above as it was 'happening. had to keep it for myself till I was 'done'. MWAH.. see ya big daddy blue eyes! didi

Sun May 13 2001
Message: hi Rutgertje, I really think I am running out of fuel now ( no not about a car, nor wheelchair.. mean energy) As I said, I chose for fun, and knew my body wouldn't agree with that decision so.. yep this tigger is looking like droopy now tehehe. Just finished composing a new song with my friend Rem, which pleased us both more then you can imagine. Only a hey-fever throat so needed puffs and lime with honey to produce some sound. Of course, at the end suddenly my voice was 100%.. by that time we both looked like zombies ( as I do now.. boooooooo..scary aint I? hehehe) Next time we're gonna try if we can catch some sound on my webcam.. yeh.. "studio Sunday tunes".. the 2 of us live.. heeellllppp, Nahh don't even know if the cam will be able to cope with the volume and high tones, but if it does it gives a nice impression of us, for some friends. had a lovely b.day.. amazing how internet can enrich your ( at least my..) life. Reckon you're almost done there huh? Hope you've swung your butt on the nice Brazilian tunes ( which I LOVE.. Jazzy Brazilian.. draws ya into a rhythm that can flip over your mood 180 degrees!!) This Dutchy here is gonna rest now... probably will lay half dead for a few hours. -now hope those legs won't start again.. pain was so unbearable last night and night before.. Hope doc 2 can give me something soon.. otherwise.. the homeopathic way to knock me out. ok, hangin' around your neck as ever ( who thought I would give up on that by now.. nooo way!) KISSSSS didi

Fri May 11 2001
Message: Hi daddy blue eyes! What a wonderful day it is today. Sunny, warm, finally weather to sit outside and listen to audiobooks without getting sick! Do you know what a wonderful bunch of fans you have? I really need to thank all those I even never spoke to and still thought of me and sent me cybercards! wow.. we're gonna have a party tonight on the net, so need to get some extra sleep, or kip as the British call it- and you know why that makes me giggle.. can you see me sleeping with a kip? nahhh..( however.. I do have a reputation of being kinky, nahh not with a kip!!!!hahaha-sorry English speakers, kip is chicken in Dutch) I had lots of lovely presentes -blink blink- one of them a UFO lamp.. psychedelic and I love it! I am SPOILED! tired as hell, 'cause Cazzie and I have been unwrapping last night, but a girl has to set priorities and I do know I get a little Xtra ill when I 'over do it' a bit but I won't ever let the pleasure slip because of that. Birthdays are more special now, each one becomes a victory, that feeling only started with the last one, and this time it's even more so. And you and the firly girlies make that victory huge and something to remember! Uhh.. Cazziebeastsister.. coffee.. lots of black coffee..-that b.day song has the same effect as R's singing in soldier of orange hahahaha! And Wizzy, happy birthday too honey!!! ..the little furball, tehee BB...YOU GOT HIM..yep dear Rutger, it wás a clue, even though pets do get names that often don't fit with the sexes! -judi, good luck honey! again, everyone, thank you for thinking of me! ok, now I filled up the book enough. Hugs and.. hanging around your neck and maybe a tango for my birthday so if you get dizzy you know why! bye pooh! Didi

Tue May 08 2001
Message: Hello dear man, Sucks with those work permits and all, -can't come to his name right now, but some Dutch actor who was picked out by Steven Spielberg to play in that new movie with Tom Cruise had to leave because his work permit wasn't arranged. Thought of you when he told about that, and boom.. my 'fear' was in place. But so to hear you aren't that easy to get rid of hahaha. Wacky and weird.. yes that suits you.. teehee Think I am in a good mood today.. tonight, when the clock strikes 1 am and may 9 starts in the UK our cazzie and I will celebrate her birthday on the phone ( sorry caz, had to mention it!) Look forward to it. must make sure I have rested some before of course! A man from the nurses agency has left about an hour ago. Such a relief that he has been a buddy, so no need to explain things about hiv/aids, just some extra info about my handicap. Now they have to find me some nurses who can work in a way that suits me best and it will start. Yeah, sometimes things just work fine. Think it was about time too! Listening to Venice ( a band from Callifornia) right now. Such a great harmony in the songs! -gonna record some of my own soon too, but have caught a cold so my own voice is about a quint lower then usual and a bit cracky.. which can be 'sexy' in some songs, but the song that could use that hasn't been recorded for as far as the guitar goes.. you'll see when Rem has recorded his guitar part I sing my normal voice again. ah well, can't have everything. (duhhh not even half..) -Rain, was lovely to see you too in chat. Am trying to make it more often!! Well.. gotta write some now, so will leave your gb papabear! Nosey, kissy tickle and wiggle, hanging around that neck as ever! didi

Thu May 03 2001
Message: Hi Rutger, sigh.. Please help me hanging, I am so exhausted I will fall off! As Cazzie already stated, my upstairs neighbour ( or at least the man he hired) is driving me crazy. Drilling, breaking, polishing ( with such a loud sharp noisy machine) from 8 am till 8 pm. Can't hear myself or others speaking, can't hear radio nor tv, can't think. Mom's heart started to give trouble from the nerves, I had an epileptic seizure. grrrrr Yesterday Remco, my friend/bro was here, thought we could sing a time extra.. yeah.. first only hammering, well we could sing over that sound ( extra time EXTRA loud wild monta skies.. really a leathal weapon when we are not yet 'warm' haha) but.. no, the guy went on. and then.. we had 'inspiration' started composing again.. forget it. we couldn't hear the guitar nor ourselves. If I could have made him drill his.. ****** off.. I would. so, we did record in hopes the mic would pick up some of what we did- at least the guitar was recorded straight into the recorder. Listened back; you hear nice. . . drilling. -actually, when I hear it I have to laugh. remco is angry but I can't help giggling. Am bruised from the seizure now, went back to bed but the bed is vibrating. No, not some nice new toy, no joy no smile, no glacey eyes, just the vibrations from the drilling that makes my mattress turn wild. So, up again, checking the site, checking my girls. Should start new writing but can't concentrate.. uhh.. am writing now, but no need to concentrate to fill up the GB hahahahaa and then.. ULTIMATE GUESTBOOK FILLING: because, it was, there fore, never the less, after all, it has been and will become.. peace. sorry.. persiflage.. couldn't resist.teheheee tomorrow may 4th.. dodenherdenking. (honoring the people who died in WWII) .. they can't do the ceremony as usual.. because of foot and mouth spreading. grrrrr. Mom understands but does hurt. I feel the same. May.. a difficult month for both mom and me. For her the war, for her my own private war. ok I know, filled up enough space. -what ever you do in Brazil, I'm hanging along ( you must feel like a kangaroo...) KISSSSSS didi

Sun April 29 2001
Message: hey dear man, yep night owl here. Still used to my rhythm of having to stay up at night till 2 am for medication. No medication to take now but can't get used to a normal night yet. It'll come. been drooling over your picture gallery again, and love the new ones- have them blown up from my wolfie sisters so I could see them better,.. so jummy.. and cute in a.. how do you call it in English? tuinbroek..LOL but do like you best as you are now.. ok ok and the shot in FB with your hand in your...NECK. just talked with my dearest furry girlie about how much female flesh you 'must' touch for your job. I know, "just a job"..-bet the woman need LOTS of rehersals.. hahahaaa ( or you too?? spill the beans!) ok, bit in a silly mood. woke up after my nap this early evening and saw the main compartinment of my patinets-lift hanging - on the ceiling-.. still not used to it, and also installed a new webcam today. what did I say to mom with my sleepy head? What is that camera doing in the middle of the room... ahum.. duuhhhhh.. bing bong. oh btw, cazzie sis... how I kick if I am haning on my ankles? honey I don't hang on my ankles anymore. training my thighs now..must be careful not to choke him! can kick all over- not your way of course -innocent face. and raindance, you're a doll. hey sweet man, see ya. hanging as ever d-dee

Fri April 20 2001
Message: Hi Sweet blue Bear, I gotta do it.. I gotta yell hurray!! Have you heard? It was on the news, and I am so happy: the pharmaceutical companies had to give in.. South Africa will have access to cheaper hiv -drugs!!! I haven't heard the details but this is already enough to make a few wheelies... It won't save lifes, but sure will make it easier. And not only that, the drugs exist so everyone should have the right to chose.. to take it or not. There is some justice.. sometimes. Well.. sick laptop huh? If your lap is empty now.. I'm glad to fill it up till the puter is back.. No? drat! the neck it is then. Oh by the way, when you get a tired neck at night ( UK time) it's not me, it's cazzie. Made a deal with her, she's got you at night, I got you during the day. Normally one would think a man should have something say about it.. but in this case. You don't. teeehee. fix that puter up dear bear, love ya till end of time -oh and hi tia, miss you too hon! byeeeeeee

Thu March 01 2001
Message: hiya, how are you big guy? if Wendy's right, congrats! already sailing on the big blue sea? playing "Berend botje?" LOL. At my end it's not real great. Besides the medical shit, pain and other side effects, a few people disapointed me again. wonder if that ever stops. Promising things and don't do it. ooh I resent it so much!! always the "oh sorry, I changed my mind".. And I never learn, always bump my head ( worse then a donkey!!!) Now ofcourse, they have lots of things to do, and I don't have anything to do except what I make myself do to pass time ( and that's internet, cruising on your site -which is fun but not all day!- or listening tv/video an dsing every weekend) so, I grab such an idea with both hand, focus on it.. But in their busy lives it's nothing. just a thought and the thought simply changed. too much probs because I can't ever show up there.. pfff wonder what they say if they can't travel anymore when they have the same probs.-although they will always see eachother since they all live in A.dam and I don't. anyway, it means no new newsletter for the positive women, no stories by me in the old newsletter.. No groups on the internet which they made me make but never subscribed to make it work.. grrr ha no contact at all. Maybe stupid of me to try to restore the connections with them again. I know they are so much different then I am, they have normal lives, next to being hiv positive. I don't. Never have fit in that group, but at the same time I don't fit in a group of disabled people either. I do fit in this little Hauerworld though! No better support and company then the girls here. At this very moment the wolfies are scratching there ears and back and are moaning while hopping their tails up and down.. why? we are having a cub! our Pam's daughter is having her kid FINALLY!!!! yep, cyber aunts we are probably by now, or almost. yeehaaa hmm.. I stop now, before my note is an earthquake on it's own. (sorry Gordon) Love ya, miss ya, still hanging around your neck but be aware.. I might get sea-sick if you're rocking on the waves!!! AHOOooWO OOooWOOWOo ooWOOW OOOOooWO ooooooo didi

Wed February 21 2001
Message: Hi daddy blue eyes! -nice little new additon in bytes.. two of you huh? well I'll settle for one!!! ok ok.. a half..1/8?? It's quiet in Hauer land, silent knight..even the gb is slow- no offence wolfsisters and other furry and not furry beings! I hope you're working on what you had planned, and as crony says, that the contract is signed! We need some action report I think.. why the heck am I writing here? ohh simple: feeling like sh*t from the medication, have to stay out of the living room because the floor has just been mopped with polishing stuff ( that sure makes nice artistic looking tire marks if I drive in circles!!) and I have to call the hiv-neurologist to discuss the matter of the drug that has to go but give me a hell of a pain in the mean time. But, glad to say your fans, my friends keep me pleasantly crazy.. ok ok.. I'll leave the gb alone now!! hanging around your neck!! didi AHOWOOoOWOWOWOWoooOWOWWOOWOWOWOWowoooooo

Thu February 01 2001
Message: Hi Rutger, sorry, gotta use your gb to thank your fans for supporting me, and writing me all those lovely emails and cards. I'm not fit enough to answer each letter I get ( and that's a lot!) but I never had so many people caring about my well being. thank you all. I feel a little better. It's not perfect yet, but I don't have to be in bed all the time, and the pain is a lot less severe. most danger is out of the air too. the medication, how risky they might be do their job amazingly well. now only hope I can continue taking them. tomorrow back to the hospital to test my blood to see if my liver can hold on. if I am in the clear now, the doc can still blow the whistle in the next coming 4 weeks, then one of the four meds has to go.. hope not. finding a substitute for it will be hard. I'm not back full mode yet wolfie friends, but prepare yourself for my return.. this raunchy dutchgirl is slowly heading for the den!!! thanks dear Rutger for being there- and here or anywhere on this planet. there should be a medicine with your name on it, 'cause that's what you are! pure medicine ( against rutgeritis...) much love miss G, zoentjes, talk or write to you soon!!! didi - hey daddy blue eyes, I never let go of that neck.. think my arms are glued to it.. - byeeeeeee AHOOWOWOOOoooooo

Thu January 18 2001
Message: Dear rutger thank you so much for your kind words. feels like you have your arms around me to protect me like big daddy blue eyes ( could use some protection now..) everyone else who supports me and cares for me, thank you. It's not easy to go on line and write at thsi moment. I am very ill. HIV-meningitis. first time i had it was about 2 years ago, and it kept coming back, chronic hiv meningitis so to speak, but medication for as far as I can take hiv medication, was supposed to keep it bearable. I start to get resistent to the hiv blocker and so it's back full attack. I try to write normal sentences, I hope I succeed.. I even talk funny. not only because of the sedation and painkillers. tests have to be done ( on your birthday my dear man), I seem to have brain damage from all that time having these inflammations in my head. chance I have had a little bleeding caused by another hiv related illness called ITP, but that is not sure. the tests,including cat scans have to make clear what is going on. I hope there is a medication to at least stop the symptoms that are getting pretty annoing like spastic movements in left body parts. I have to stop . the pain is killing me. thank you again dear man. I love ya. dear friends thankyou for suppport. I hope to bne back soon. didi

Fri August 31 2001
Message: Hi Rutger! as I listen to the rain, which probably will produce a rainbow since it is sunny at the same time I am taking my temperature. ( in my mouth of course LOL) I've had a few bad days, with one day dangerous high fever, and lower ones till last night. it beeps.. hold on; good! 38C, a bit of a temp but not much! During that high fever I caught a cold. Extra anti biotics have to prevent it from turning into a pneumonia, but I think it's only a few very stiff muscles and a face that feels like I'm bruised with a black eye and jaw. Sinus infection and as usual a few very swollen glands in my neck and face. ah well.. I try to do some stuff, have to go back to bed a lot because of sudden fever attacks, or major swooshyness or real dizziness but I'll survive! Trying to do some with those icons I spoke about a few days back.. did make a cursor.. sweetie.. you really don't wanna know what kind of cursor LOL (besides that.. you need a magnifying glass and reading glasses to see it) Side effects -pain and a general feeling of hiv-eritis as I call symptoms known to be caused by hiv itself, are building up, but I cope with it. only a bit out of touch with everyone I'm affraid. - - - Anne, very sorry to hear about your brother. I remember when my mom had cancer, I was only a very small child. It's awful to want to fight against something you can't really fight in any other way then doctors tell you.. Only thing one can do is live, as long as you can, as long as life is still living. hugs to you.-- Jennifer haha you crazy girl! have fun, see you when you are home! thanks for the message!! -- well dear poohbear, still am a tigger without a bounce but I'll find a way to climb up- bend over you tree of a man..- yep I'm hanging. wo o ooo oow.. don't run!!!! love and waves from the parental front LOL Didi AhoowoooWO WOooWOoo WOOoooo WOooooo ooooo

Sun August 26 2001
Message: Hi Rutger! yes you are correct, our first talk was a year ago exact on the date! cheers!( happy anniversary hahahaaha) so many things have happened in that year, bad ones but so many good ones.. and none of the good would have happened without you, your site and the people I met on the site. kiss for it sweet bear. Sounds interesting, that Indian actor, and caz showed me a piccie from Sean's site so now know a bit about whom you are talking! long days for you.. arrghh could tell ya not to work too hard but that's said to deaf man's ears! It's awfully hot here, but a thunder and rain -and the rest of what comes with it- front is coming towards us.. it is getting dark so I hope it really falls down on us too! can't bear that heat. Rem and I tried to sing but if I tried I wanted to drive back to the standing fan and gasp air for 10 min. so we cancelled this weekends session, just talked, yawned ( weekend ritual here.. waking up together, or at least try.. loooads of coffee). fed him some pie.. not my own though. nope, that one has to be baked in two weeks again, when my cazzietwintwit is coming to visit me. ( yeehaa). ok Rut-oh-rut, see ya later, hanging on my ankles again.. arms too hot. -and someone told me to think kittens and jellybeans today..maybe ankle hanging is a result of that LOL hugsies, Didi

Wed August 22 2001
Message: Dear dear Rutger, dear friends, including the 'new' ones and anonymous ones; I am crying, once more but this time it's from something special, a good feeling that's for sure. -Cazzie my sister, you told me in private that the poem was for me and yes.. it's me. thank you love. you caught me words like only you can. and the other poem, from Jackie's card, so touching too- mwah! .. all the cybercards, emails, GB messages, it's amazing. Yes I was alone, alone inside and outside but coming home here, and be lifted up by more hands then I can count make me realize that I may have lost a lot.. I will loose so much more, but Lord what I have gained, incredible. When I came to your site Rutger, I had no one but my parents and my bro. Now it feels like half the world cares, always a place to come home to.. as long as I my body and brain allow it, I will come home. day in, day out. Some- or better said, a lot of people ask me what can they can do to help, (find a cure? hahaha) but dear people, you all have no idea what you do for me. no supportgroup I have been on has ever been so true, close, nor has given this warmth, in laughter and in tears. yesterday I was simply in shock.. had to face what I knew but hadn't heard out loud in that way, and the echo of those words, confrontation with the final result of aids- and a nasty situation for as far as the drugs goes, filled the emptiness when I sat there alone with the ashtray. ... till I hollered in this GB, and your voices filled some of the emptiness and faded out the echo of the words that no person wants to hear. Thank you, everyone, I love you all.. I've babbled enough here, mustn't fill up your space Rutger. Till soon. AHooWOWOO ooWOOWOo oooo OOoooo Didi

Mon August 20 2001
Message: hi Rutmans, hmm I should be laying down now, but mom has a diabetic sugar dip so gotta wait till she is ok again, then I can lay down. and I need it! gosh I've had a bad night, got the spasms ( quite bad) in chat,-which meant no hands to chat with.. went better after an hour, then it came back in the early morning, right after one of our 5 cats had been stuck under the mechanical foot/leg supporter from my mom's chair ( and we both didn't know why the chair was making such a strange noise.. till she made the foot/leg supporter come up again and yup.. the cat came out from under it.. poor thing, caught in a chair.. but Keessie didn't mow, he just ran like hell to escape to the garden, not hurt.. or he was in shock he he he!!! Rem has been here instead of this weekend and we had a very good, intensive talk ( takes lots of energy as well.. pff more then I thought) and just sang a little but not too much since I wasn't feeling too healthy.. duuuh how would that come huh? And now.. I really have to tell you that you've made a mistake with the pictures in the gallery.. how sweet they may be, you accidentally chose the wrong pic -the one from 1969-.. you should know that I, bounceless tigger didn't exist till a year later, and how adorable that mini tiger on your uuhmm.. let's say.. lap, is.. it should have been a pic of extra large Tigger, the big CAT ( me) there.. same postion, or any other for that matter.. as long as you give tigger the same look at that kittycat.. teeheheee beardyman is lovely,-tickle tickle- and 'now bear' is the very very very best -no I do not stutter! But really, it's so nice you also went purple.. (oops.. background I mean).. say it yourself : looks much better then sea-green.. and much more important: it fits my screen colours so perfectly! and of course that is what counts huh! duuuuuh. oh btw, EVA: the word you were looking for is moppie, more used for women though.. but yeh.. he's a sort of moppie.. I'll stick to 'scheet' .. and that means fart but in Dutch that is used as a pet name too! hahahhaa ok.. now nursey and eva are walking with mills and probably Rutger as well if I go on.. woops, there's mom.. got some colour back on her cheeks ( face!) and doesn't shake anymore, means I can SLEEP.. which I need! gotta see the doc tomorrow so wish me luck ol' bear.. I will keep on hanging when I have to go to his 'room'..not THE room alas, so sorry..you'll be pulled along for support! give you a neck massage later if I've pulled too hard love, AHoooOO WOOOWoo OOOoooooOO oOOoo Didi

Mon August 13 2001
Message: Ooooh... ahhh.. uuuuhh.. What a delight to have a magnifying option in my new wireless mouse.. I think I will stay on the guestbook page for as long as I can.. Now I imagine a marble floor under you instead of sand.. double ooooh.. Tehehehee what can I say? (besides ohhh)Nah, without kidding, lovely new piks OOPS..pics on the site dear papabear. After my museum story I have something new to 'feel' huh? If only computers could be in relief..- they do have puters that give smell, thought in Japan.. order flowers and test the smell of the roses you ordered. really! not kidding! but.. till we have relief puters, bare bear would be a good test object.. I know.. undress my teddy and I have one.. duuuh. Must say, even though I love the piccy behind the menu ( after I enlarged it) the colour behind it clashes with my screen colours.. of course those are all pink and purple -what else when you are in a purple palace as good as every day.. LOL but maybe it'll come in fashion one day.. lilac with sea green. My nurse -no not Renee#2, my real nurse heard about what's up with me, she is back from vacation and plan was she would be here tomorrow but she already dropped by to check me for bruises. this time she wrote the report to doc B ( by email). a few more things to say then I wrote him last friday.. which made him ask me if I didn't want to come over and start the new stuff, but my other doc isn't there and I would have to begin with a new doc and I have my belly full of temp. docs.. nope I wait. only more nosebleedings and more spicks of blood through my skin on more places. Only one week I will manage that! watch me! hey sweetie, don't work too hard in that damn heat. Hugsies and love ya, I keep on hanging but I do need a towel between us, way to hot to stick to your skin! LOL -thanks webmasters for all treats! cuwhenIcu AhoOW oOWOoO WOWoO WWO OWOW OOWOWOoooWOO OWOOW OWOoo(GASP..!) wo oo ooo o

Mon August 13 2001
Message: Hi rutger!- yes it is late but I just came out of bed after a long nap.. Rem was here today, not that I did too much but anything is a too much at the moment. But I won't stop singing, no matter what.. I have even sang when I had that pneumonia, even though you had to use a hearing aid to hear me..think I only breathed heavily in rhythm.. but anyway, that was then, now is now.. now I shake in rhythm if I am not careful. This time only one shaky hour.. Rem stopped singing right away, so we went on hugging ( now that is a nice treat, even though hugging a bro is not the same as hugging a... darn.. wonder how those wolfsisters of mine come to think of me when they see a statuette of a naked man? I don't give them any reason to think of me that way do I? DUUUUUHHHHH) So, I am supposed to teach you to massage in Braille huh? ok.. if I can read you you can read me LOL Now that statuette the ladies spoke about made me think of that summer of 1984.. I just had to face that I wouldn't see normally anymore. I wasn't blind but as now, only saw blurs -and couldn't make anything out of them since I wasn't used to it as I am now. In my training period to learn to see by touch and hearing my parents took me to the "tropen museum' in Amsterdam. there was an exhibit of Indonesian and Papua art ( and a rebuild of a few houses like my father has lived in on the army base in Jakarta in his childhood) anyway. mom brought me to some statuettes, you know.. the wellknown male figures.. with huge cocks as a symbol of virtility ( sp) but it was a bit high and not much light in that isle so she told me feel. I was allowed to touch it, -she had asked- and she wanted me to tell what I 'saw', including little ornaments and such. She didn't tell me it was a huge dick I would be going to touch.. I started with the head. Now you must realize I was just 14!!! I came lower, chest, arms, then.. jabba jabba jabba.. Now at the moment I started to feel something 'strange.. which I still didn't think of as a body part, 'cause I thought it was some tool ( yeh... different tool) or a weapon, two older ladies came from behind another table with statuettes. behind an original totem they kept still, and I heard one woman say "Oh my, look that, what a pervert! she is giving that doll a handjob!" but then in the most pure Amsterdam accent you can imagine, clearly from the Jordaan! the moment I heard that I understood what I was feeling and took my hands off, of course blamed mom, who almost was wetting her pants and dad saying I had to give it a kiss too hahahaha -sigh.. now I am even telling ya the imbarresing stories of my youth.. Ah well, as a daddy blue yes you aught to know LOL Dear Wolfiesisters.. thank you for uhhm, thinking of me ( not sure I should be thanking ya though..tehehehe) and dear Man of men, LOVE YA dd

Sat August 11 2001
Message: Hi Daddy blue, what a lot of updates, thanks- also to the webmaster!!- again a step into that black hole called film production.. I would go completely insane with all that insecurity! ( here,.. a hanky for that cold..) At least you have computer access, a little bit of home in cyberspace. And me, well, everytime I have another nosebleeding I swoosh like crazy, but glad at least the clots come out.. better then staying in, knowing it comes from little bleeding behind the eyes -amongst other small veins. but, surely gonna ask for a photo when I see doc B, can't have more eye damage then I already have. I feel lousy, fevers, and generally ill.. in a way I can't wait to start my drugs again, but a bit scared to begin with the new drug that has to be added to the left over's. ah well.. another week. In the mean time I come out of bed for chat- and boy did we have fun! Pam's journey to her new home was celebrated in.. a mud. Yep, we had a mud wrestle contest! I know.. we are crazy, and we are glad to be! you need some imagination in that purple palace of yours but that's no prob for us wolfies. Hey sweets, see ya soon, big kiss and I'm hangin as ever.. boy is it hot.. buy a fan on a cap LOL ( as I said.. lot of imagination hahaha) PS: DENISE, it doesn't happen a lot that I read a story from begin to the end. With yours I did. I am sorry that your dad made your life so miserable, no one should be hurt by a parent, or by anyone for that matter. Standing up to him has been a milestone in your life, and I thank you for sharing it. I am glad I have never been beaten by my father. I may not really connect with him, but he is the most gentle father one could wish for. How ever, child abuse was and is a part of my life since it is a huge part of my mother's life, she is 68 and it still shows in some things she does, or how she does it. You are able to write it down in a way I admire. My own painful years ( not by a parent but by caretakers) never came out on paper. I think I simply don't have the guts to confrot myself with it. hahaha as you see... you touched some people here! hugs didi ( PPS: Rutger.. please.. don't collapse on ANY floor while I am hanging.. I bruise too easily at the moment!! KISSSS)

Mon August 06 2001
Message: Pssssst... Ruuuuuutger... (......) HIYA! ooops..did I scare ya? pffft, as if I could. woke up with a real bad head. then the daily inspection of my body since my thrombocites are way down. I had to decide whether to call doc B or not. It's kind of interesting, blood spicks through the skin.. but, after an hour or 2 I decided not to call in. not yet. It's only one shoulder and a spot on my arm and it is not growing, and not touchable blood, only showing so I have reported it by email ( very handy to have email contact with the doc/nurses!), will check it 3 times a day, and will call them if it spreads but for now this is just as minor as the little nose bleedings. I simply gotta hold on till the 21st.. Of course emergency is another case but for now.. The computer, the wolfies and you keep me busy and insane so that's ok. Have sang a bit yesterday, it's too exhausting at the moment though. I was shaking after the 3rd song.- now that's ok with a dramatic song.. give it more credibility..duhh but with an uptempo song..no. Rem, my bro was over- concerned. if he could he would wrap me in cotton wool and keep me in bed. Now a man who wants to keep me in bed is fine.. but not my friend/bro Rem!!! hahahaha ( too young.. 25!). He came in at 1pm, to wake up at my place (gay pride/canal parade meant a day and a night partying for him..) and started to inspect my head. I had no idea what he wanted.. guess what? he had read here about my grey hairs!!! almost jumped around like repelsteeltje (trans in Eng.. no idea, it's a fairytale character) and called me an old broad! NAH! teehehehe. Well.. I gotta go. Dad wants to pump me up. -uuuhmm I mean my tyres!!! All four of them almost are a few days away from being flat.. so I need some air ( Deb, can I hire you? haha sorry!) well dear Rutababe, see ya later, I'm hanging, -with my head against a shoulder I reckon.. headaches need broad shoulder to rest on!..or chests.. or tummy's..or as in my case.. just my pillow in 30 min. love didi

Wed August 01 2001
Message: Hi Rut-o-bear, what a lovely byte to bite in! And big pics so with some effort I could even see some! So, in those 6 months the package learned to speak huh? teeehehee funny writing on it! Hope you still like the tape. ( can assure ya, wasn't easy to mix down!) Well, after seeing doc B yesterday I'm pretty tired. Glad he's back though. Not that much has changed but at least some humanity and effort to find out if any treatment would help in emergency, and that's more then what the other bonehead did. But, swooshy I will be for a while.. Neurologist doesn't have time till the end of the month. will see if doc B can speed that up though. have to call him tomorrow anyway. Well nothing else to tell really, -besides that I am still feeling old now doc B noticed I have loads of grey hairs in my pitblack fur.. grrr.. but besides that, just waving- oh and also waving to Spooky, girl long time no see! you've got some catching up to do LOL Now, between packing, just sit down man, I may be used hanging around your neck, but I want to lay my head down too so SIT. You might catch a hug or two but just bite your teeth.. you'll survive LOL love you to bits, bytes and pieces, Didi

Fri July 27 2001
Message: Hi rutgerohohoh, are you melting away too? I am! darn, if not from fever I melt away from the weather LOL Yesterday a high fever that didn't drop till 7pm. before that I had been sleeping but talked nonsense too, hallucinated from fever. Fam. doc said just give some paracetamol, not much you can do with fever. If it stays on without a break for a few days you have to call the hospital. well, paracetamol.. I think I can pee paracetamol by now so that really didn't help. Finally mom decided to give me some quinine.. not the safest stuff but at least it helped together with the ice packings. Managed to celebrate Crony's birthday in pp too-we had to leave your wonderful palace though.. it's not working real great lately.. freezes like crazy and then runs over the screen, people fall out which doesn't happen in our own little room. not related to how many people there are though, can happen with 2 in the room, 6 in the room etc. (we know it happens with around 9 but this is ..ok ok you're no computer wizard -but mr C is !!!LOL) anyway, woke up with only a light fever so I try to do something. swooshing still going on, but soon very soon I might hear what is causing this 'episode'. poor doc B.. comes back and finds this shit going on! oh uhh.. you noticed I worked myself in a bit of a.. position here with Renee#2 and -who was it.. Sarah?- the woman who writes the L.U. L.. lets see if I can explain it with some decency LOL.. Girls, LUL is a the most rude word for that specific male body part, also used a LOT for calling names.. so I REALLY wonder what it in shorthand! ( only thing I can think of is love U lots..) arrghh me and my Dutch lessons.. And sweet bear, whaddaya think of caz's visualisation? knowing you you start swimming and I tell ya.. I can't! I'd be screaming my lungs out. uhhm next stop forest? LOVE YA -need another break (yep.. still writing with breaks..sigh) I'm hanging.. kiss didi

Mon July 23 2001
Message: Hi lord of the book, I sure like the tone and the laughter in the GB last few days. Hear hear for the wolfies!- and our alpha male. Yep, this bouncless tigger is sitting behind the pc again ( logical.. can't sit ON it..) Sunday, in my singing session I took ill, very high fever -41C, went up and down but never lower then 39C so my mom of mom's put me in bed. Remco, my friend/substitute bro and guitarist just sat with me, played me my favourite song and the lullaby he wrote for me ( yes mushy but lovely) and I fell a sleep. Last night, late chat, but had slept for a long time so figured I had to be able ( was the b. day-party of our Sue! never miss a party with cyber booze!) But when I logged off I was quite sick, fever never went.. yep a hot girls here -no no don't you say it girls.. DOWN..tehhee. those inflammations, infections etc since the drugs have been taken away really start to get more aggressive. scary. My head. I'm afraid for my head. grr. the spasms are worse too, so the virus in my spinal cord must be worse. glad the site, my mail, and making a pressie for our crony deb gives some distraction. Wish it was weekend already, ( ha that on Monday.. LOL) no matter how I feel, singing is freedom for me. I know that we have had new pics no too long ago, but can't help looking out for new ones- best ones are recent ones! hint hint ( no teefnurseyRenee, I won't mention bear middle pics! ) Well.. gotta log off again. expensive way of connecting with my favourite world, -pff nothing else I spoil myself with so what the heck?!- and read my twintwit's new piece on our Mac2.. then a nap.. sure thing. hey.. bow over my dear bear. Need that neck. I'll transform in a little didi ( shrink shrink triple shrink) just to be able to have a good neck-seat.. until I've got my bounce back.. bye, Didi, ( bounceless tigger)

Thu July 12 2001
Message: Hi daddy blue eyes, ..focussing on my happycandle to get some sanity in my chaotic mind today ( sanity.. yuk..).. this is what I ended up with. // sometimes, I feel like a computer, hooked up on the internet; never knowing when I lose connection, never knowing what virus will wonder around to get me down, or how I can protect others from getting infected with the one already there... Only I cannot reboot myself, or delete the source of infection or replace less functional parts, either hardware of software on this type of computer I am. Wouldn't it be nice if I could just upgrade myself, try different software, so I could see if my friends are compatible with the didi2001... Then again, I don't need it; my friends proved to be compatible with any type of didi.. they work with the didi1970 and make it feel as if it will beat all future versions and upgrades.. Ok, it does crash every now and then, it's not as fast as we'd like it to be, but they keep this puter running, and sometimes they're substitutes for the parts, software and upgrades I miss. And one external harddrive is travelling over the planet.. Love didi

Wed July 04 2001
Message: haideho Rutger, hm, at least there is some wind here now, but eastwind so sneeze away miss hayfever..I sure hope the rain that they forecast for the end of the week will actually come down. Glad to say my lungs are doing much better, only need some time to recover. -maybe my neighbours are happy the way it is.. can only sing one song and then I already lose volume and after a second song I can't sing anymore, and hyperventilate LOL Just had a strange thing on my aol-IM.. I was haled by a stranger, which is funny on it's own, since I am not in the public list- but servers do screw up from time to time so it can happen. He obviously took me for someone else and said "hey sugar it's Richard. Honey you have such a gorgeous body.." I didn't know the guy but sure thought "go on.. don't stop.." teheehehehe poor guy if he only had seen me sitting in my PJ's hair to all direction except the right one and lots of body but not inch is gorgeous LOLOLOLOL of course I hit the block button! Think I'm gonna sit in the garden every now and then with a nice book on my head. -scare the neighbours away with my looks, -no energy for the bathroom yet. My nurse would come today but I asked her to come over tomorrow so let's say I have a bad hair day, but I'm ok with it. hmm a bad hair day by choice.. oh before I forget, Sarah Murray and Suzanne, I know, you rather have an answer from the man himself ( I've already heard several people suggest a bite with him saying it.. -dream on-) but yes, the G in Rutger's name is the throat clearing sound. ok, happy 4th American wolfies and friends, I'm gonna catch some air outside ( oh R- and Dutch wolfies-, I heard something funny on the Belgium news. was an item about nudists, the first nudist beach there, and the man who read the news called them "blote zonnekloppers" tehehehee (translated: naked sun knockers, but sounds real funny in Dutch which is almost the same as Belgium). ok ok I'll leave I'll leave. I'm hanging around your neck dear bear, -with this heat probably a half bare bear LOL Sloppy kisses! didi

Mon June 04 2001
Message: Hi Rutger, diaries, diaries.. -an my name isn't even Bridget Jones!- as if I have nothing better to do then keeping up my schedule/diary (hanging around a certain fellow's neck for instance would be a nicer way to spend the day.. -what fellow, what neck..where.. who..how..-yes ok.. babbling didi here, who must have a T obsession by now.. T-cells, can only hold T at the moment, T-mail, and giggle with a T, look: Teehehehehe, and if crying would start with a T, I would add it to the list but then it would by trying.. which I also do.. a LOT..(both crying and trying, althought don't have to try to cry -which I also do a LOT from laughter by the way!) ok..this a strange line.. I am strange.. sometimes you are too Mr, so we make a good pair hahahaa). . Written down some fun dates in the diary: -visits from special friends, and some dates for hospital stuff.. and then having to scratch those last ones again 'cause they are cancelled.. -better write them down with pencil next time.. easier to erase. that schedule of yours is 100 times more chaotic and complex I know.. but still. Have email contact with the hospital too, -at least, ergo therapist and the aids consulent let me do it by email, less of a strain then going up there every time for little things. can be very handy- for any close but far away contact email is a wonderful thing, friend or business or in between, it's handy I must say.. unless you don't know if the other party got the message.. ah, drat, but that's the inconvenience of cyberlife I suppose. -double drat- make it triple!- well.. sorry for this weird message in the middle of the night. hugs and trying to hang around that neck of yours.. but..what's this.. did you put crème on your neck??.I feel like I'm ...slipping... helllp..OUCH...!!Now you see.. fallen flat on my face!!!!!!! didi

Sat June 02 2001
Message: Hi Rutger, everyone, Needed to light, not only a candle in my room, but also here in the book. what for you might ask? Nksosi Johnson, the little boy who spoke so bravely about the acceptance of people with aids in SouthAfrica, and who gave aids a 'face' over there.. the boy who made me cry, made me proud.. has died. Today.. or actually, yesterday since it is late now and I am just out of bed to have a short goss with my cazsis.. -friday june 1. a sad day.. he made it longe then doctors expected but still.. Nkosi.. a little great man.. goodbye.. didi

Sat October 20 2001
Message: everyone, thanks for your sweet words and support, and those who have had prednisone, your words are of much use to me. I know the doctors can tell me a lot but the more info Ihave from people who took it the more I will be able to or prepare myself or decide not to if they say the changes of working is not huge. I have had a very light dosage longer time ago when my immune system was stronger and had some side effect but one of my docs said I am quite weak now.. and I really have to idea how it is to have a high dosage by IV.. so any info- by email please is welcome! MWAH Oh and TORI, no I don't need a transplant hon, they will have to see if my bloodplatelets are made too slow or in a damaged way there, and secundary they will look if there is a leukemia- but the high count of white bloodcells can be something else too. so main reason is to see if prednisone would help me get some bloodplatelets back- lets say.. stretch time before I bleed to death. tough stuff going on but hey.. as long as I can smile, it's 'ok'! love you all! MWAH dd

Fri October 19 2001
Message: Hi Rutman- IF you read the gb that is.. I didn't for days.. Often the tone here isn't very inviting huh LOL Some of my sweet friends ( HI JEN!) wondered where the heck I am, and started a search- through caz or YOOHOOO's where are you? in my mail box.. well, As most of the ones close to me will know, I am not doing too well, and I have things on my mind that I have to arrange, get ready to be able to live without that bit of worry, so didn't really have a head or time to correspond. I can only be up a few hours in the morning, and then wake up in the evening to sit a bit and then chat till I ( sometimes) literally drop down. so, if I have to do something, I gotta do it in the times I am well enough.. kinda like choosing between doing this or that.. chat with my dear holly in the morning or take a shower ( hahaha yes.. even stay half stinky for a friend.. good she is at the other side of the planet hehehhee- and my parents sit with menthol under their noses..heheheh neh of course I wash up LOL only no shower, too straining to do both..duuh pathetic huh!) Last Tuesday I had an appointment with my doc, but that darn taxi wasn't able to bring me.. of course they keep saying they couldn't help it, but it's the 3rd time now. Complaints at the health insurance comp. don't seem to help grrr -gonna ask my doc if they can arrange different transport, they are not fit to drive me when I am ill anyway. Of course I didn't let my appointment slip, just called- not the usual way but told my doc it doesn't matter if he gets paid for seeing me those 20 min or talk to me on the phone.. well he did. Wasn't much good what came out ( and that lead to this period of sort of absence in the book and mail) and heavy decisions have been made. at least, sometimes you think you have to make a decision all by yourself, you think that is worst, because you have to do it all alone, and then you get to hear you don't even have to back your reasons up because the doc thinks the same.. the decision is almost made for you by nature.. and then you realise you rather had it the other way.. then at least you had a choice. In two weeks I will know if we really will go on with a bone marrow biopsy- ouch..- and the idea was using prednisone ( already an elephant then I would be a mountain and not the one Pammy wants to climb...) but, just spoke with my hiv neurologist who is against it- not the biopsy, he wants to know the results too but the prednisone.. probably too weak to handle the side effects.. arrrghh don't know yet what will be decided. partially by me, partially by nature again- result of the biopsy. ah well, enough about this, at least some know now what is goin on, even though it may sound a bit like a riddle to some. time for more crazy stuff, laughter, ..I wish gb was a bit more a happy place like before.. chewing on and on about things happend is only wasting energy.. time. I've learned that by now. And answering those chew ups even so ( uuhmm would mean I am wasting energy now as well LOLOLOL) I hope I will be able to drink a cup of coffee in the coffee corner in our community center again next week, 5 min away..at least not at home, but close enough to walk -if there is someone to push the chair that is.. hehehee cub do you read me? probably not LOL nothing special but all we have here..my nurse told them I might be there a bit more, her number left there in case I am there with someone other then herself.. yes I have a wonderful nursey, no sissy but heck..am I? NOPE. Hey, smile everyone, and for who can't, here.. a cyber hug: HUG. hey Rutbear, you're gonna need a buggy to carry me if I have to go on prednisone LOL till then, stretch that fatherly neck and lift me up.. I know, it's tough for a bear.. C'est la vie,- C'est la sida .. MWAH love Dee

Sat October 13 2001
Message: Magnolia's, size of twice my hand, pale pink with here and there a touch of a more intense shade of pink.. those magnolia's, with a soothing fresh scent grow in a park with a low, old fashioned curled iron fence around it. I don't know where it was, nor how large the park was- it could have been someone's garden.. I didn't see more then the huge flowers, and the rain of magnolia leafs every now and then. You Rutger, had brought me there, didn't say a word just wanted to show me something, and the moment I saw the flowers and touched them, I looked up, over my shoulder..just to see you step over the fence, away from me. Within a few seconds I wasn't me, the adult Dee, but little Daisy, ( as I was called at that age) I think 6 years old, including the little piggy tails on each side of my head, white dress. The adult me looked at her, second place now, the child I am looking for, for a long time was dominating. As I, Daisy was in total awe of those magnificent flowers, I saw you watching me, gentle as always, fatherly as often..you had delivered me it seemed. Just watching, observing and smiling. It felt like letting go, and where I was I was safe, and obviously happy. Time not place were relevant where I was.. but behind that fence where you were life must have went on.. I held the flowers from one twine-like branch up- still hardly up for you, as little as I was at that age, and standing on my toes I wanted to show you my new treasure.. you smiled once more..I know you put your cap on and turned around, but that was Dee knowing, Daisy didn't.. Daisy knew you would always see, always know, without her realising she knew.. she was brought where Dee couldn't bring her..Letting go is finding something precious too and realising that I woke up. still smelling the magnolia's. A wonderful place to go to, a wonderful place to visit from time to time when things get tough. A wonderful friend to bring me there.. so that was my dream.. Love, Didi

Sat October 13 2001
Message: Mawning Rut, I Know, it is late, way too late but pain keep one awake.-both arthritis and damn neuropathy, and added to that the spasms and muscle cramps! GRRR New pills to ease the spasms and maybe get me some decent sleep don't work ( yet!) have to find the right dosage combined with my anti epileptics, which all works a bit in the same field so result is a bit reduced. Well, no signs of anything good nor bad from it so since I have to find my own dosage, only been given the top limit, since it will work different with my current drug combination I will increase the night dosage. maybe it will work.. maybe I will sleep ( ha if I really have slept a night you will hear it here with horns and bugles, flags and trumpets LOL) Oh btw, best way to reach friends is often this GB, and some have difficulties getting through in my mail, hotmail especially but even my normal planet address is behaving odd, so, a new addie: didi_thirdaddie@lycos.com just in case!. I was just waving cub les off to bed, said would go too.. duuh. sigh... no grumble though, nope won't grumble. do that once in a while and that is more then enough. have to do things.. so many things but so few hours in the day I am well enough to do something. gotta have it from mornings but those are so easily taken by other things.. nurse coming to shower, refilling medicine cabinet, do some financial business for parents, take care of the financial stuff between my nurses agency and myself, pff.. gone, in a sigh, in a blink of an eye it is gone, and then too tired to do things that need concentration. yeh.. light stuff, bit email, bit tv.. or a bit nothing. so, tomorrow morning is scheduled for what I and only I wanted to do, no things I have to! blah! no nurse, no medicines no financial stuff. have one day extra, rem won't be here Sunday so.. extra day to do what I want.. no correction, try to do what I want. better stop making a list of what I want to do I realize, because I always am behind, way behind..pfff Now my twintwit C thinks "YOU SHOULD GO TO BED"..yes Cazzie.. will do.. in which room? really fancy a stay in the bear's head- I mean hanging around the neck is great, leaning ON the head is great but now bunking IN it.. wow.. ok ok too literallyLOL but the hotel.. daft boss you have.. if you can stay at the bear's you STAY at the bear's! yep.. those 3 rooms will be shared with joy -uhhm.. dunno about bear he will be exhausted.. counting fingers "been 2 times in room 1, 3 times in 3 ..what did I do in 2.. she knocked me out..where do I hide?" no place to hide bear.. all other rooms are stuffed with the rest the ladies, the male gb visitors might even be at the desk.. LOL ok.. I am babbling and now I stop babbling. going to take that extra pill 'cause this is leading to nothing. MWAH didi

Sun October 07 2001
Message: Hi there Rut the absent one, Sunday again, with typical Sunday weather- meaning, drizzle every now and then but momentarily a sort of sunny. -still longing for thunder and the whole kaboom, love to sit with a mug of tea, or even have some cookies or pie in the oven.. not that I can eat it but it smells so darn good, and always nice to stuff someone else's face! In about 15 min Rem will arrive, lets hope I won't have to give up too soon, we want to do another song today..ah well, as long as the guitar is on one track we can do the voices later, any time I please- lets say in the middle of the night to annoy the neighbours hehehe. Been a bit of a bad girl, didn't look at gb for a few days, and not worth much in correspondence either- just every now and then a load then nothing ( so my other friends, that's the reason I am out of touch a bit) but, thought lets wave now! Ah there's rem, gotta go -darn he is early! hehehe good bro, knows the earlier the better, more chance of energy! see ya later, hugsies and Rutger, don't throw me off your neck if I am making smacking sounds.. can't help it, Jen sent me all the red jellybeans and rainbows.. and while I watch the rainbows ( aren't they gorgeous?!) I chew the jellybeans- kinda illegal.. took them from her son hahaha want one? KISSS love to all, DD PS-RRRR it's obviously feeding time in here... any spare thoughts to share? ok, now you may hit me!

Tue September 25 2001
Message: HI rutbear, miss swooshhead here. am I moping a bit? yep you bet I am. I know I am strong most of the time, but sometimes I would want to scream, -which I do actually.. hahaha poor neighbours upstairs when I suddenly started singing I want to break free so loudly from all aggression I put in it. But on the other hand.. pay back time for all the drilling and hammering this summer ( and they are still not completely done.. she must think she lives in het Loo -no British friends, not the loo, the Loo is the royal palace here) So, off to bed with this pale bumblebee, but first- eva, I think the Nostradamus topic has been on before, I personally don't care whether he was right or not. No use if you recognize it after the dead is done. of course you can protect yourself, I doubt if you have to accept things because they are predicted, but whatever he said is so damn complicated that no one knows for sure what he meant. you can recognize it, as I said, after the fact. and not all came through if I am not mistaking. anyway.. girl, how do you come to those things.. ol'McDonalds.. hehehe yes our animals make different sounds too. your and my cow are the same, only written differently. we say boe, which is boo as for your. Our rooster, kukeleku. our pig says knor, English pigs say oink I think- now this is starting to become a pathetic entry huh bear.. wonder what a rutger bear says .. SHUT UP I reckon LOLOLOL ok, leaving. I think I turn around again, hanging on my ankles.. belly and middle adorers, watch out, here I come; wooopieeee. ( American flag's between my teeth but think I need a white one between those middle-adorers!!) MWAH, hugs and the rest of the mushy vocabulary! Didi AHoWOOWOo WOOWOoo WOoooo

Fri September 21 2001
Message: Hi rutger, my nurse Lettie just left, she's doing more and more to make things easier for me, even managed to find something to ease the pain in my mouth, while docB says there's nothing that helps. that woman is a gem! I had to roar at the pharmacist this morning.. What they've done is really too stupid for words; DocB had given me a presription for my liquid hiv drugs, at least one of two, since I already had a lot of bottles from one of them. So, I needed my pills, and the other liquid stuff. Dad had picked up the bag with drugs, but this morning my nurse and I looked in the fridge to get the two drugs out (filling little bottles so I have my dosage ready right away) I only had loads of one, none of the other! So, I called the pharmacist. What do you think she said? They had looked at the prescription, did see the pills and the -now missing- liquid hiv drugs, but they ASSUMED the doc had made a mistake and so they gave me another load of the one I didn't need now!!! ASSUMED! I told her it is dangerous to ASSUME something when it's about these drugs- any drugs but these type of drugs even more. I only have a dosage for today, so I told her I need those missing bottles right away. Nope, they had to order it, would be monday. I said I can't miss a whole weekend of hiv drugs!! She answered that it was just a little mistake, and she couldn't help that it would be monday. I roared that I don't allow her to fuck with my life, and would fill in an official complaint against them ( ha don't even know where I should do that, but it sounded brave!- and serious) Suddenly the pharmacist herself came on the phone, appologized and said I will have my bottles today, after 4pm. -now they didn't have to order huh?!- I told her I expect to get what is on my prescription, no matter if the doctor prescribes shit, they don't have to think, and if they don't trust it they can call the doctor or me, but never ever ASSUME I have to get something else then the doctor prescribes!! well, another few appologies and she even agreed with what I said. Lettie, my nurse came to me and stuck her thumb in the air LOL at least I used my big mouth for something good this time hehehehe -no hic-. Well, gotta go now.. scan again. slow puter but one day the pics will be in files LOL ( 2006?) -Jackie, HUG.. hope nothing is wrong, that you feel the pain because of something harmless. and the fear for you family.. can't even begin to imagine how you- and a whole lot of other Americans- must feel. again, HUG is all I can do.- ok papa bear, see ya later.. you mind me hugging while I am hanging? in a hugging mood I suppose..love, didi ( ahoowoooo woooo wooooo)

Tue September 18 2001
Message: HI rutbear, -just back from the hospital a few hours ago, recovered from a huge dip from exhaustion from that ride, being up early etc etc, and as good as ready to take a nap/kip. -Paulette, I am repeating words already said, but they are right, you are never alone, and I too thank you for sharing your soul and emotions with us. Yes, you probably will find them back one day as reminders of who you are, or can be at times like this, and they will make you nod, maybe cry. the journals are precious sweetie, for you, for us.. for those who will read back in the GB one day, to see what has been written through time. And that goes for everything that has been written this last week.. Amazing how a guestbook became a sort of community, and a place to sign in to let others know you are ok, not ok, in pain, in joy.. I know, it was never meant to become a place like this, but I am darn happy it did. I hope you keep the GB from this last week somewhere in hardcopy, safe.. it's a reflection of souls, souls that sometimes rarely open up..souls touching eachother, embracing in time of need. Beauty, pure beauty as you are R.. and I don't ( only) mean the outside..it's your inside. amazing and yet it is not, that from all sites on the web, YOUR site became like this. birds of a feather.. do I have to say more? HUGS Didi

Mon September 17 2001
Message: Hi Rutger yes, late I know, but I am in and out of bed all the time, I'm not ok, not by a long shot but at least I know why, and for what reason I kind of called this out on myself; my unforgetable week with my twintwit cazzie. it was her holiday but can't help seeing at as my holiday as well. I mean, I went OUT! ( stupid huh, I am proud of myself! ) so, just taking it easy, rest up, make sure I take my anti biotics and not at the least my hiv drugs-left overs and look back on this delight of a woman near me, touchable ( giggleble and *hicable* -didi words LOL) when I am sick to the stomach from exhaustion and even faint. SHE is worth it. believe me. -Fiona, read your story. Yes Caz is right, it does something for me. I recognize a lot, could have been my bro Rem and me, and at the same time a setting from the past, a love from the past who in my case eventually lead to this unhealthy present of mine. My bro and I have a song for a few of our worst periods, which made us as friends and adopted bro and sis stronger, and we know we will have a last song.. I hope he will find comfort in it as you find in 'life'. woops, late now, hurry my ass into PP before our Italian G is standing at my door..must be awake! LOLOLOL ( and preferably at least my hair sorted out and some clothes on..hehehe * hic*) I really need to show her a very nice candle I have from my twintwit... not one I can will light- have a beauty of a lavender candle to light which is burnign for the USA too- but the one I was talking about is in a certain shape..very male.. any idea what I am talking about? yes, you got it, that's the body part I am talking about hahahahaha ( well at least it melts when it gets stuck OOPSY) Rutger, can you wear some kind of sling for me? with this shaking and fainting and weakness in the arms at the moment I can't hang on my own, so like to hang like babies do.. -I won't drool, and don't have to be changed! MWAH you know what I mean.. just hanging sweet man! LOVE didi

Mon September 10 2001
Message: HI Rutger, ( oh my.. above me the neighbour's dogs are howling.. would that be a coincidence now I am writing in the gb, home of the wolfies? ooh can't hold it.. AHooOWOO WOWO WOoWoo) So, did ya caught a cold already, from the heat suddenly into the rain and early fall from Europe? hope not of course! But it wouldn't surprise me.. glad you're a little closer to home.. guess we mess up your guestbook with our excitement huh? sorry can't help it sugar! I am about to throw myself into the world of dough, cinnemon, apples and much more, not to forget the amaretto, hehehehe * hic*.. Lettie, my nurse was here this morning, checking on me- preventing I do too much, and tomorrow she'll be here to taste that infamous pie of mine, and see that cazzie-beast-twintwit she hears so much about. She'll be here wednesday again to pamper me so I can rest up from tomorrow and get some energy back for thursday.. I know, only a few days with company but for me it's like I am planning a marathon. Mom's worried that I talking myself so high, with laughter and silliness that I overdo it. Sometimes I do that, true.. Can't prevent overdoing it actually, 'cause one day with company is already more then I can handle, but hey.. if I restrain myself because I will be totall loss when caz is back home, I won't ever do something nice and would always be 'just ill'.. nope not me. I am alive, so I live. I understand Ger's worries, even Lettie shakes her head when I am as pale a ghost but what the heck, then I am good competition for Casper ( he's a friendly ghost.. wonder what I would be.. ghost bitch or as the ladies here would say "teef-ghost"..) nah.. we'll see. Rutger, you brought people together by having this site, not knowing who's on or would come to see it, a group connected, friendships have grown within a year and next to a group of close friends I would LOVE to hug to pieces, that cazzie beast who's coming over now is has become my twin-twit. ha, she's a lot in the gb, but even more in my box, and we know eachother through and through..that's a gift, from life and indirect from you dear bear. ANYTHING, to be 'me' with my friends as long as I can be. no matter the consequenses..and of course I will be careful with myself. ok enough waffle this starts to get mushy... Uhhm gotta let go of your neck whilst baking that pie, but after that I will climb up on you back and just lay dead for a while.. so be available please! MWAH hugs and see ya soon, AHoOWOOWOOW WOWOOWO WOWOoo Didi ( PS: Swoosis Judi, always welcome here too, and if I could I would try that mexican soil to wheel through and listen to mexican music and dance the swooshboogie!)

Sun September 09 2001
Message: Afternoon Rutger! Wow, great piccies you've spoiled us with! Thanks for putting a LARGE piccie in the GB, finally one I can enlarge so well with my magnifying mode in my mouse that I can SEE it!!! yeehaa. (one day there will be relief puters, no doubt.. boy would I feel my fingertips raw! And I assure you I am good in feeling.. haha eyes on my fingertips) It's sunday and as an old fashion Dutch Sunday is supposed to be, it's raining. Not men. Tyres from the cars are making that "SHHHHHHHOOFFF " sound and the wind is quite strong. I like it. sit with a cup of tea and such. But, hope it'll be better next week Cazzie my twintwit! AH, my bro is just walking in, didn't expect him but.. here he is! hurray. 2nd time this week. not that I am able to sing a lot now I have those extra side effects from the HIV drugs, but a chat and a laugh is the best medicine I always feel. Hmm let's do it the schwarzenegger way "I'LL BE BACK!". Put some earplugs in dear bear, I probably will sing off key every now and then but what the heck.. since I am still hanging, would you care for a dance? yuk.. makes me think of Eric Clapton's video.. nope. just listen. LOVE and all have a good sunday! ( caz, we are already planning here, even mom is excited. seems you're gonna be pampered the 'Ger way'.. ) BYE! AHooWOWOoo WOoWOWOoo WOWOo and zoentjes and thanks to the webmasters! DIDI ( damn.. had to correct that, always write DUDU first..yeh, I am a dodo.. I know)

Sat September 08 2001
Message: Hi Rutsydutchie, how's life? bouncing back to Europe soon, better buy an umbrella.. it's ~!@#$%!!&* weather! My nurse had planned to go with me to a smal fair ( sp? fayer? pff sort of market) here on the square but it is raining, and not too little either so it's a no go. Maybe for the better, 'cause I am on double dosage of my hiv drug now and it hits me hard. let's hope it's only my body adjusting to the stuff. Tired, mega-swooshing (JUDI help, not only going to the right, also to the front...we need a 3rd swoosher LOL)and my stomach knows a nice little trick.. playing flip over, so I am embracing the toiletpot a little too often.. yuk. Well, you probably found out by now, caz is coming to visit coming week. and yes, I am gonna bake a pie for her. amaretto apple pie. -want a piece? come and get it! worth a try bear! nope, I am not really * hiccing*.. not the way I feel now. can't say I won't put my finger in the amaretto remains when the stuffing is out of the bowl! ( and into the pie...)- LUcky.. you poor cat, those hormones are flowing, not your fault! (snuggle into miss shaz's neck and purr softly, move your whiskers slowly over her jawline, and lay your tail in the back of her neck, I tell ya, she'll fall for it or she aint no woman hahahahaa) Hope the webmaster can clean up again.. even though everyone had the right to speak his or her mind.. then again, it's not up to gb writers to say wheather we are dull, stupid or unwanted only one who can say that is you Rutger.. maybe only one to stop this is also you.. dunno. LOVE and lay your big shovelpaws on my head.. need some bear energy to at least have a good week with caz, my twintwit. I'm hanging ( not doing what I suggested Lucky to do with Shaz, -my rabbit Fucky already does that with me, except the tail of course) and smoochies! Didi -ok one howl.. AHoowoWOOo WOoWOoo WOoooo.. ZZZZZZZZZZZzzzzzz snore... snore..

Thu September 06 2001
Message: Hi rutger, -just back from the hospital, no news, only bloodcheck and telling the nurse ( and 'hand picked stand by doctor' what side effects I have) and they were extremely friendly for a change. even offered me coffee!!! wow! -I'm very tired, we waited one and a half hours for the taxi to get be back home, but can't escape from GB.. hahaha, HAVE to be here. -Tinky dinky ( oh my.. that sounds like a teletubby...)you're not stupid, gullible or what ever.. IF it was a hoaks, we all fell for it. No matter what happens, never forget this was an unofficial nomination in the first place so not likely that it would screw up anything for the bear, and besides.. if his bearpaws would type in the site's address he would see so many wonderful messages about his work that I think it's nothing but good. good things last, the ( maybe) bad thought or silly thought behind it will be drawn to the back, and finally vanish. -Jan, let me help ya out of that jacket.. ( handcuffs are much more kinky!!! ) Good typing with your hands on your back though! LOL And swoosis Judi, tehehee poor rutger with that fly swatter! you and I left-right swooshing, each with one hand holding the racket and yelling "DOWN BOY, DOWN" hahaha oops.. sorry! okok.. I stop. when I am tired I talk nonsense! MWAH rutbear, see ya! don't drop me! DD AHooOWOoo WOWOoo WOWOoo WOoo oooo ( LESS THEN A WEEK TWINTWIT!!!..yeehaa)

Wed September 05 2001
Message: Hi Rutgerbear! pissing in the wind huh? now that would give an artistic look on your pants sweetie.. unless it's from a driving car ( oops. sorry, strange imigary here LOL) Last night I couldn't get on line, no RH site, no wolfsisters.. PANIC. so, sat with mom (who says hi too) and what do I feel on my foot? a huge spider. I know, they are only useful etc etc but when I see a 5 cm spider ( once I bowed over to my foot, -hurray for those extreme loose muscles I have)I really don't think of those creaps as useful. All I think of is HEEELLLP. Now, you must know, we have a new toy here. an electic swat. ( hope that IS what a fly hitter is called in english..) it is sadistic, I know, and first didn't want to use it. I already called it our Texan swat, but with this spider already crawling up my leg (!) I had no problems with it anymore. So, mom picked up the electr. swat and handed it to me from the other side of the table. I reached for it in a hurry but didn't see anything from that distance, so I didn't know she handed the 'racket' side to me ( the part where you hit the bugs with). I grabbed in the strings of the swat and mom accidentally pushed the button.. OUCH OUCH OUCH OUCH! What I said you really don't wanna know hahahaha still have a stiff thumb! I made such a noise that even deaf dad came out of bed to see what was going on. and mom first pissed, then laughing her ass off because of my shaking thumb and -literally- shocked look. ah well, that's my punishment for wanting to fry that spider! -and the spider.. never found it anymore. brrr.. creaps. And right after mom asked "and, less swooshy?" I said no. She said "oh a pity, otherwise I would hold that swat to your butt every morning to wish you a good day" of course, you can guess.. swat jokes all day now. .. beauty of a poem Rutger, now only wish it was in audio LOL .. Judi ( or Hudi LOL) poor you! as if your head hasn't had enough to suffer! an inner ear infection, ouch. well swoosh sister, hang on to the bear and to me, if I swoosh to the left and you swoosh to the right we are stabile hahaha. HUGS. ... Collette, thanks for the updates on the award thingy, but honey,-now don't take this the wrong way- but can't you give the updates in a little shorter version? it'll go on till January.. and don't ya think that will get a bit boring? I already scroll over, just thought better say so. hugs. Well dear bear, think I gotta give your neck to cazzie..poor sneezing twintwit of mine. But I'll keep hanging. no matter what bodypart I have to find. leg will do. I am used to sit LOL but uh.. please don't piss in the wind while I am down there!!! Smoochies, AHoOWowOoWOOW WOOWOWO WOWOOooWOWOWOoo Didi

Tue February 26 2002
Message: HERE I AM, TRY TO WIPE ME OUT: YOU CAN"T SUCKERS, NOT ANYMORE... take the step to tell, as a first step to love yourself, and recognize pain and tears since we all allow to have them. we are unique, so is everyones specific pain. not worse then other's not less then the other's.. I hope to see some smiles amongst the intensity that is quite eating some space here as well. Love, and a silent scream of anger- gagged emotions, as they were when these emotions took form to only echo through my own ears. dd

Tue February 26 2002
Message: Hi Rutger, or actually.. fellow GB writers,- I am proud of everyone who is able to tell about their history, rape, what ever. I never came to trust someone so completely that I told all about my history in that area, but doesn't take away that I've been there (normally my twintwit would say, been there done that got the t-shirt..) but in this case that swings on another thing.. tshirts. I think not knowing how to express the anger is a victims biggest handicap. Is it anger? no, much more. Wouldn't fit on a tshirt. ( you do know bear that you are almost bound to wear slogan tshirts for the rest of your life now you started this? LOL) The Gb feels a bit heated up,-didnt read it all but from what I read it's.. chaotic. Maybe only in my feverish mind, I don't know. Maybe too much too close to my own life, -and that for someone who always tells more then people want to hear.. I know, daft, that's me. I know that a lot of people who read, write or just visit from time to time have had bad experiences, in all fields earlier written about this last week, or in one, or some fields. That's not just life, that's a sort of silent bond between us all. We feel safe here, dare to speak about it, sometimes in very well used words, or just in fragments or less. That is what this GB kind of invites you to.. it says we are safe here, no judgement ( except for the odd ****h*le who tries to give us our need to defend ourselves back.. which won't work, not with me anyway) But, even though for me -for instance- a huge part of my life has been ruined by topic 2- rape, and since quite some time now also by topic 1, aids is trying to break me, there are so many good things in life. friendship, respect, love from and to others, more important ( and very difficult for qutie some rape or assult victims- love for yourself) I hope gb can be filled with.. colours. All colours- from dark to light and back, all shades, that is trust, that is honesty and what is more important then that? Without a safe harbour no hope, this gb is that harbour for me, and for a lot more folk. Open up, take that step to say, HERE I AM

Fri February 22 2002
Message: HI all, hi daddyblue-eyes, -only wanted to wave at ya. Sarah, I'm 'ok', tired, bruising again.. call me a cameleon.. nice change of colours.. only not really comouflaging LOL ( glad this time under my shirt.. except the one on my hand which is still not gone. Been busy with recording .. went on mixing and singing in, but still forget I can't do that the way I used to so mom had to pick me up all shaking.. after some fruitjuice and sitting in the living room I was ok.. even though still a bit trembling. an hour later I HAD to go back.. the idea that a song is almost recorded except this or that part.. no can't accept that. so I went back, -then felt that I had to leave it as it was.. no eneregy. One peek in gb, and then BED. Back starts to play up again, so probably have to spend more time in that beddie bed again. Hugs, everyone have a great weekend! and rutgerohrutgeroh... Weekend's near.. no fingernails left.. smoking an extra pack of ciggies.. hanging around your neck, ( nice of ya to blame some wrong moves for the ol'knees hurting again.. while we know it's my weight around your neck that made them scream for some concideration hahahahaaha) MWAH toodles- and ZZZZZZZZzzzzzzzzzz...

Fri February 15 2002
Message: Hi Rutger.. Oh my.. a surprise? ( if the post works as shitty for you as it does for me and some wolfies it's gonna be just in time for my birthday hahahaahaha- that happened with my friend Craig... sent him two packages for Xmas in November and he got one just before his birthday in January, and the other came back to me..that's not just a duuuuuh that's a major DUUUUUUUUUH!) but anyway I drift off- as usual- I am soooo curious! glad I am not a cat like in the saying.. even though I'm often referred to as the tiger..uhhm thinking and talking myself in knots here LOL That's gonna be polar-bearing ( as Cazzie calls it, - meaning my 'didi-BritDuch' translation for the Dutch word 'ijsberen') to the letter box and back... ** So..you did it again huh.. man we should bet on what you loose every time you travel by airplane.. winnings to the foundation hahahahaahaha Hope you do get your suitcase back though. ** I've had the weirdest, maybe a bit disappointing phone call with my nurse. She broke her shoulder a little while ago and therefore she can't help me. Ok, normal. A bit problematic though because the other nurse I could 'use' ( rotten word!) didn't function and has not only been fired by me, but also by the agency. he ho. But.. my own nurse said she would have to go to the physical therapist this week- it's Friday so the week is over- and she would hop in for a cup of coffee and get a bit up to date with me. Nice I thought. Mom saw her at the supermarket, again the same, she would hop over for coffee after her therapy. This morning I had my contact person at the agency who arranges everything for me- I do the interviews to see if a nurse they find for me fits etc. He had 3 nurses in mind but not sure if they will take over from my nurse, at least for a while till she can work again. ok, nice, hope they find someone- better 3 so I have more chance there is always someone I can call in for help. He asked me if I have contact with my nurse. yeh told him the above. Then called my nurse.... wondered why she didn't come for coffee, was concerned, thought she was in so much pain she couldn't even walk .. guess what? She's in Chzechia -or how ever you spell that. Bit grumpy, said she had too much on her head and pain so couldn't stop for a cup of coffee- never been to that therapist, she is in Chzechia for a week now, and next week Friday she'll be home, after that she will contact me. DUUUUUUH??????????? Someone who said she was my friend more then my nurse, as if I am her kid sister she said. Of course, she shouldn't be on vacation- she is listed as ill, not as on leave like days off or vacation. She probably feared I would tell the agency. I didn't and wouldn't have if she just had told me. if someone says she will drop by I expect her, so would've been nice if she just had cancelled and told me not to call for a week. Damn. Trusting someone with your body, naked, vulnerable, trust her with your very private matters as at the doctor's office, trust her when she has to help you pee or poo.. and trust her when she says she is my friend rather then a nurse only... I may be weird but some trust has been broken. ok, I waffle too much in here but where else can I grumble? She knows I depend on her- she is the best nurse you can have. if you don't listen to the bullshit about friendship that is. She knows I can't really do anything about her behaviour 'cause that would mean I loose a nurse will need more and more... I HATE it when I am pushed in that corner.. depending on others, not by free will, simply because there is no choice. And she sure knows often how to make me feel that that's the case. The more I make her see I am not a helpless little moron, but her boss and even though suffering from memory problems a quite intelligent human being, she pulls the strings more tight and gag me, make me sit and wait. it's a nasty taste of how people suddenly can show their true faces, especially when you have caught them on moments they don't have their act ready- like when I unexpectedly called and she picked up in Chzechia.. instead of 5 min from my own home. pfff I said I had waffled enough but still didn't shut up eh? hahahaha ok, over and out now. kisses, hugs and the rest of that mushy but lovely stuff, -hanging around your neck dear bear.... and trying to get some hints out of ya as a good curious wolfie would do! Didi

Thu February 14 2002
Message: Hello everyone! OOoooh Thanks for the Valentine wishes, ditto to all of you, double ditto to you Rutger! Normally I let Valentines day pass by- a few years back mom gave me a Valentines card ( yes gave, not sent.. would be stupid both living in the same house and still send it) When I was little she also sent me cards, and because I always was so disappointed that no one saw me as him/her valentine she sent me several cards... from my bear, from my pet, from my doll and even all the dinkytoys I had... duuuh. One Valentine card still hangs on my closet door... Sylvester the cat ( you know, from Tweety and Sylvester) with a bunch of roses.. that was in 1994.. after that we skipped valentines day. But now, with so many friends and friendly people Valentines has a meaning again. So, instead of a card ( would be impossible with so many people...) I write here, to tell everyone who cares about me, everyone who became close friends, regular chat partners and 'once in a while waving GB people, that you all are my valentines. A hugs HUG and 3 kisses like a good Dutchy does LOL. **I'm sitting up for an hour or so, have to have a day or more bed rest to be able to sit up and do things. That's gonna be the new routine. The drugs against the spasms work as good as can be expected. The spasms won't ever he really gone, same goes for the terrible pain, but this is such a difference, so good not to have those awful spasm attacks that I can't be more grateful for doc P and the drug itself to be in my corner. but, every 8 to 10 days, sometimes even 5 days or less, I have to have bed rest, otherwise my back is killing me. -so, no long chats or mail.. -my pee and drink break now and mom had put the pc on so I could wave here. You can imagine she is the most important valentine.. and not only on valentines day! ** hehehe BB, the moment I hear wolfie paws scratching on my door I will start to howl ( from sudden wolf-stress and happiness LOLOLOL)** Lucky's tail smashed by a door, and collar taken off? I HATE people who do that to animals. We saved one cat from her sadistic owner.. she died after less then a year- her jaw and skull were broken.. but at least she had some love in her last year. Poor Lucky, mizz Shaz, give him an extra rub under the chin for me please. Ok, maybe I forgot something or someone but can't sit any longer ( thank heavens I can type pretty fast and just burp out what I say without thinking..ok not always wise to do so but it's sure saves time hahaha) LOVE YOU, Didi ...** PS: hanging 'round your neck even though I have to lay in bed.. oh my... no no no not thinking naughty thoughts, -as if anyone would believe me- LOL MWAH !

Fri February 08 2002
Message: YEEEEEEEEEEEEEHAAAAAAAAAAAAAA! get out the flags, get out the trumpets LOL The scan showed a lot of shit- clearly irritated from previous meningitises ( if that is how you spell it...) and yeh, a shrunk brain volume- not that it's the size of a peanut, it's only a marginal bit smaller, but it does indicate that that's busy in my head, but no snow flakes- meaning aids dementia. I am soooo happy. I mean, I can handle a lot but not if my brain is going to jelly. But, since there is a lot of damage up there, doc P kept telling me that this just might be too early, that it still can develop. Yes, I know. but a lot of aids patients face aids dementia on one point, sooner or later. I am just happy that it isn't there right now! only.. now we have to check what the heck the symptoms come from. He says the memory problems are quite severe and he will think about what to do next. might be a neuro psychological test- also used with Alzheimer's but of course not only of use with Alzheimers. Or, there might be something with my medication. Also a possibillity that the spasms I have overload the brain- because the scan only shows how it all looks up there.. not how the info works - or doesn't work. So, still a way to go before we know if my brain, my 'me' can be fixed. I do hope so! Pills for the spams increased in dosage.. the highest dosage now but the side effect is getting a bit nasty, we hope it gets better once I use a little longer, otherwise we have to scratch a whole line of drugs.. and the line of drugs we would have left isn't sunshine and roses either... or actually.. it is.. it gives ya hallucinations..hehehhe as if I am not crazy enough without it LOLOLOL OOOOOOOHHHH I feel like partying..tired as a dog but relieved.. and mom is smiling again- with some reserve..because doc P kept saying we might just be too early to see what is going on.. but we know at least that the memory problem which I have- quite severe- is no aids dementia because with these showing symptoms I should've quite some flakes swimming up there in the brain fluid and that is NOT the case.. Gotta call him wednesday again, will be checked and stand by for sudden trips to the hospital for a while. now I can take my nap, and I try not to think about what it might be, what can happen, or what might show later if doc P is right and we are too early with checking.. I only want to know about right now, and that's 100 times better then doc P feared. let him think, let him worry, let him figure out what to do, let him think about what will most likely happen once everything gets worse. I've got just about the energy to cope with all this shit day by day, and that's what I'm gonna do. Yeeehaa ole oleee olee olaaa ( singing) Byeeeeeeeee Didi

Fri February 08 2002
Message: Hi Rutger.... still no news.. doc had an emergency on his hands so have to call him later- so now I am trying to sit up longer then I actually can..and then it's not sure if he will be able to talk to me the time he asked me to try again ( between 3.30 and 5pm) so, sitting, hanging, ( literally this time to give my back some space) hate it that I can't sit up like a healthy person. grrrr. - Hey Renee, polish your mills, and practive your wolfie howl gal! it's be ok, I bet you all will have LOTS of fun! Mo said I'd get piccies from this gathering of howlers so I can't wait! I am so happy you all get to see eachother.. and sooo sorry for Pammy.. boo hoo hooooo snif snif..distances in the USA are so damn big. Not like here in Holland. Oh, and Hopetry, have fun on your journey, never feel guilty for being able to do something not everyone gets a chance to, if everyone was as homebound as some of us are the world would be a very sad place! Pamper, love hug, kiss - and the rest- that guy of yours, and enjoy earths biggest treassure: the ocean! ..-nervous tiger here.. nervous ger here.. tick tock tick tock.. why does time go so slow when ya are waiting.. tick tock tick tock still not on 4pm.. gotta wait till 4.15.. tick tock tick tock one minute later..arrghhh if I still have nails after I have called doc P it'll be a miracle hahaha, love to all -oh and if you start sneezing bear, it's me. I dropped a bottle of perfume over me and even after a long hard scrub it's still not gone from my skin ( YUK tester perfume and I DO NOT like it.. yuk yuk yuk) even a nose that doesn't smell that well will curl up from it so better put some earplugs in your nose hehe.. oh my.. I can picture that, oh my! ok, stinking and hanging ol'bear! almost neurotic nervous Didi

Mon February 04 2002
Message: Hi papabear, friends; -no, no news yet, just had the MRI, results should be in doc P's hands tomorrow, if not then on wednesday. But anyway, even just going for an MRI was something to ROARRRRRRRR about -almost had to laugh, if something goes wrong it has to be with me..of course.. some rule up there mr big? * didi rolling eyes up to the sky*- started when I got the letter with the date I had to come for the MRI. Ok, faster then I had thought, but, it did say that I had to confirm the appointment. Ok. No prob. It said you could email it, fax it or do it by phone. Tried the phone but there the pre recorded message said, that you better email or fax, 'cause they don't have enough people to answer all calls. I don't have a fax machine, but hey.. I am the Queen of email so, nice and easy. Day later got the email back. as many of you probably know, that is something that happens sometimes. server playing up bla bla. sent another one 2 days later. Didn't get it back but wanted to be on the safe side, 'cause the letter said your appointment will be cancelled if you don't confirm. I called.. again the tape plus the message that it was better to email since there were more then 15 people before me waiting to be answered. Next day still no mail back so thought it was ok. .. .. Friday night, 6 past midnight -saturday morning so to speak, I got my email back... connection not permitted. yeh nice but I had to be there today, monday and in the weekends they aren't there to answer the phone. Panic. Then I downloaded a fax program and hoped to be able to fax a message about it, in hopes they hadn't cancelled my MRI. That was part one from this slapstic.. part two started today. The letter with the little map to guide ya to the MRI was very clear, at least, clear in how to get lost. Poor dad with his sore legs (the man is over 70 y.o.!!) walked with me, pushing the chair and all we could find.. no MRI waiting room. After asking 5 people for directions we found someone who sent us the same way as the map said but with a little more points to hold on to, like a sculpture on the right, then turn to the left, you know.. I wanted to hit someone when we entered the Radiology waiting room- the one we had to be, but no one had said radiology, and it wasn't written on the map either. DAMN, if I had known I wouldn't have let my poor dad walk around for 20 min.. I know that way by heart. within 3 min I could've been there if we had entered through the outpatients clinic! so, I went the desk and hoped they had had my fax. nope. no fax, no email. "Email? why did you want to email us then? did you want to cancel?" was what the lady behind the desk said. Now.. if you would like to see a real stupid but slowly getting dangerous face you should've been there. I boiled.. Threw the letter on the desk and showed her. She pulled her brows and looked around. "we don't have that fax here, that's at the other MRI ward, you are here for C1, the other is F. and email? noooo that's not yet active. People only call if they want to cancle, not to confirm it." then she looked at me, shook her head and asked "didn't you come from back there? why didn't you come throught he outpatients clinic, you've been here enough to know where radiology is, seen you before." Ok.. lost it. Yelled through that room I wasn't the imbecil who printed that map and letter! -she did show it to the head of administration there, and that woman appologized and told me it;s something that they will use, but someone printed it too soon for radiology. other wards have it already. -no, no one ended up with a black eye but grrrr. However, I didn't have to wait, they called me in right away. Almost an hour of awful noise -no music, don't like it with the sound of the MRI already being too much. They did try to put some pillows under my legs and back to prevent spasms, but the neck has to be in that precise position and yeh.. that made me get a spasm during the scan. they were prepared, doc P had sent them all what they needed to know also about it not yet being under control. so, they took me out of the machine, waited till it was over and then put me back in ( felt like a fried chicken in the mircowave, turn it over and put back in on 700 watt for another 15 minutes LOL) Pfff.. my first stop after the MRI was the coffeeshop- with that stomach of mine it would be a no no but I needed it, -that or something much more no no then no no sounds like -yeh I know, I am weird- booze of course. so, after my coffee the taxi bus arrived and now wait for the talk with doc P tomorrow on the phone. -oh btw, some asked me if I'm not claustrophobic in the mri- nope. Not at all. yeh I do have some good things too hehe I like small spaces, if the damn thing wouldn't have been so loud I would've fallen asleep! -PS what was your name.. ??hopetry ( forgot the first part of the nickname) everyone knows by now, so forget that some don't know what I'm talking about. Sorry. I've got aids, I'm 31- in a few months 32 years old. thanks sweeties for thinking of me today.. the scary bit is tomorrow if he has the results. MWAH love ya -shall we neckhangtango Rutger? rose between the teeth not needed, you only have to wear a bow tie! luv'nstuv * Didi *

Sun February 03 2002
Message: Hi daddy blue eyes, Thanks for the loving words MWAH! ( someone asked me the other day what the heck we mean with mwah.. it's the sound of a kiss duuuuuh) Just got a reply from a friend of mine who said I sounded bored and sarcastic in my email to him.-he knows me for 7 years so he knows that's not me.. so I hope I don't dislay the same 'tone' here. I'm just tired. My bro has been here today, we sang a little. not too much. I let Rem do the work if I can't LOL. But,a few days of stomach bleeds does make ya.. dunno, zombie-ish. Glad I had no bleedings today, maybe it has stopped! I hope so! probably starts somewhere else then.. every now and then I feel like a dalmatier dog.. can call myself lucky that I don't have bruises in my face!! duuuuh! Think I need some gooooood sleep.. then I am back to 'me' again. tomorrow the MRI.. cross your paws for me.. this little ( ok.. not so little) deedle is quite chicken for the outcome of that scan. Anyway, great pics bear, like the menu pic! inviting open collar LOL Ok, back on the neck again.. But need some help to keep me up there! ( you need a baby sack, you know, those moms and dads who carry their baby in a sort of back pack on their chest? ok you would need a HUGE variation of it.. -and it wouldn't cover just the chest I'm affraid.. 1.84cm and then not to speak of the weight, but hey.. I like the idea HAHAHHAAA poor man, only the idea would give ya nightmares! MWAH ok, end of loonytunes, start with Clooney tunes? hmm I really have no idea what I am saying anymore.. ZZZZZZZZZZzzzzzzzzz.. z..zzzz. nap time. * Didi *

Fri February 01 2002
Message: Thanks Rutger, kiss* And everyone, thank you for your sweet caring words as well. I showed GB to mom, she's touched - and that doesn't happen that quickly with this rock of a woman! Thank you all, *hugs* and after the testresults of the MRI ( is on febr. 4, results probably next day if doc can get his hands on the photo's as quick as he hoped for) I will write again! Love to all, Didi

Thu January 31 2002
Message: Love ya too Eva, Hi Rutger bear and friends.- This morning, writing in my diary about the stomach bleeds I have since a day or two (yuk.. damn platelets) I wrote something about mom and me now this is starting a bit- real bleedings I mean. It scared her.. as if 'it' has begun.. she didn't dare to let me sleep, he kept checking on me. And what scares her even more, that I am not scared. That's only because I know this is just a minor dripping bleeding not a real fountain, not that dangerous, only annoying and yeh.. painful. So I put my thoughts on paper- better said save my thoughts in the computer and this is what came out.It may sound a bit dark, but I am not down or anything, just coping..-pretty well I think- only thing I won't be able to deal so well with is if my brain is busy with changing into cheddar cheese... anyway, here's a piece of my world of thoughts: WAKING UP WITH THE TASTE OF AIDS_ last night she couldn't leave me/ 'see ya', or 'night', didn't do/ last night she couldn't let it be/ I could../ I did.// Last night the bleeding stopped as it had started;/ suddenly, leaving me a taste of steel / poisoned blood on the back of my teeth..// A new morning -another day, and as always, my wishes are her command,/ Anything,/ Everything/ even more then before.. -the world, the universe, if she could.// Again the bleeding started and stopped/ no longer something for the future / a fact, right here, right now../ My soul-mate's heart tries, but her mother-heart can't ignore it../ She can no longer play the role of the pragmatist / and even though she will try till the end,/ I see in her eyes she can't really take it as it comes../ But I can... / I do... / as long as it takes me to die.// //*Didi 30-1-2002*

Thu January 31 2002
Message: Hi Nurse Rutger, get well soon to the mrs from me! at least she has someone to take care of her ( and oooh is she lucky.. uhm, not about being ill but surely with such a hubby.. nothing as nice as being able to lay your head on someone's shoulder when you're ill.. don't I know that- haven't got such a shoulder myself.. -hush green monster! GO green monster! -damn.. monster won't leave hahahaha. -Strange times for me, waiting for tests to be done ( MRI febr. 4th).. tomorrow I hear when I have to see doc P for the results and in case it's not good, what to do. Scary. there is one thing I don't want to hear that day and what ever is wrong, as long as it isn't that I will be relieved -till I get back to earth and start worrying about what IS wrong.. or maybe its all ok.. but doc P said he would be highly amazed if that was the case, so I at least prepare myself for 'something'. Ishould have called him today to hear if I can already increase the dosage of the pills to ease the dystonia in my long back muscle and some other side muscle area's.. till now it doesn't do anything but giving some side effects- not too bad and if it works the side effect are worth it ( unless it's taking away the last bit of sight I have, which could happen, so we monitor it with hawkeyes) but I won't know if it will be a succes on the dystonia till I am on a dosage that should help.. But.. of course, with my memoryproblems it was almost predictable: when I should have called him, I had forgotten time and so when I did call it was too late. ( first thought of setting an alarmclock at the time I had to call but then forgot what the beep was about..) Now I can call him tomorrow morning... pffft. Bleedings because of the low bloodplatelets get a bit worse, which is scaring my mom a bit. the low platelets count now give more signs then only a few nasty constant bleeding bruises, and we knew it would come to that one day, but I guess when it really happens, the danger of it becomes more of a reality for most people. As for my mom. Somehow I am not afraid for the bleedings. Not at this level. I still have grip on my common sense. ( don't say it.. I know.. me and common sense.. it's almost like cursing hahaha) maybe I still have some grip on it because I look at facts, knowledge and be practical.. a half day at a time. I have seen people who were bleeding so dangerously that they died. This is nothing compared to that. -not yet. of course, minor bleedings inside can lead to major bleedings in the end.. but for now that's not the case, even though it's a start of a new phase in this aids shit. Stomach bleedings aren't great.. hurt too, taste disgusting but when it also stopped and the last bit was clotted it said enough to me. just be careful and wait- and that's what I do.. waiting without putting all on hold for it. if fear dominates all you don't look at the few pos. things that are still to find in a day. Funny.. the bleeding problem is one I seem to have grip on- psychologically seen, maybe intellectually as well, but if something else would be wrong, and then I mean in my brain.. don't think I can pull that so easily.. ah well, that's my daily shit on a golden plate once more.. - Sammy: I am SOOOOOO happy that your gran woke up!!!!! big happy HUGS! And Cazzie me heart... don't have to tell you here, but do it anyway, I'm with you, there for you, if I could I would be there to be also of help for mum and dad, sis and bro.. can't do more then send them my love as usual.. Your mum must feel like she lives in a sudden surreal world.. she doesn't feel really ill, but still she is dying. For as far as anyone could really be able to- I think I know how that feels.. differnt but still similar. been there myself in a certain way.. and it hits extra hard when suddenly the body and the illness' physical symptoms start to fit the picture.. reality can be too much if you can't comprehend, or don't dare to. She can call herself lucky with you by her side! You know I am here for you, with you, as always. big hugs, squeezes in all colours you can think of.MWAH. - bye Rutger see ya -duuuuuuuh. Didi

Tue January 22 2002
Message: Hi Rutbear, already birthday tickles in your tummy? LOL hope you have a good one amigo.KISSS in advance, gefeliciteerd! and to Sammy, I am so sorry for you, it's awful when people get ill, especially the ones you love, but coma is so heart and mind breaking. it's waiting.. even de doctors are often helpless, can only make sure the body gets it's fluids and such..I have had very close friends who were in coma, and I have lived with people who had woken up from a coma.. good endings, bad endings. I myself am one of the good endings.. have been in coma twice. One time a very deep one, one time on my way to the deep but woke up in time I guess. Not one case is the same, but there are chances that your grandma can hear you, even though far away without 'receiving the message' as you bring it. but I know it can reach a patient, depending on the depth of the coma. I had a period of being totally gone, and can't remember a thing, but from some periods- spread over the time I was in coma (4 months) I do remember things. Not the same as they where in real I found out when they told me about it when I asked if it was real or something from my own mind, but I know it kept my brain active. Same goes for my mom when she was in a coma, the way she remembers what I did is ..odd to say it mild but fact remains, the contact came through even though the doctors said there was no use in talking to her, singing, touching, moving her arms and legs. clear stimuli, overdone it actually but I think that was the reason some of it came through. for the both of us that kept the brain doing something, no matter what instead of just laying and waiting for it to stop. It's always worth to try, even though there's just as much chance that it doesn't work.. I at least had a feeling that I did something, made me less powerless with the friends I have lost in coma. Hmm long waffle, I know. If you want a talk, just mail me, -I know, you had that offer in previous in messages but still. wish you lots of strenth, and hope. for both your grandparents. Didi

Fri January 18 2002
Message: Hi Rutger, here's your 'thing'- almost a wild one but no, won't dragon breath on my friends this time LOL had some answers today, and in a way that's good, can't get the best treatment because the hiv is interfearing with this new thing, but at least there is something to help me a bit but I am pissed too.. a lot of things, even the hellhole I was in where i was tortured, mentally and physically, raped and much more wouldn't have happened if they just had seen this because guess what? this is not new I have it all my life, but it just wasn't seen and now it is so bad we have to hope i don't stay in the typical 'spastic' position! grrr. but, now I spit it out.. -count to 10 didi- at least answers. ok, 30 years later but my doc at least does his work well, also for me as a person because he knows I still fight with the memory of doctors know knowing and therefore not believing in what I had- and so my handicap grew out till a huge disabillity. BUT, ok enough. another day tomorrow.. again waiting for calls from the pharmacist this time for special pain killing treatment. Oh and Sad one, as said, we all have something to fight with, or loss of hope, Lord do I know it myself. if you need to talk, see above, my email is there and when I have the energy I will write. as a lot of others already offered as well. never without love in this Hauer world. never forget a lot of hearts are open for you, even when you shut your own heart for yourself.. that is what this place is all about. love Didi

Mon January 14 2002
Message: Hi dear friends, a quick message before I fall off the line again ( darn technology!) it's sweet how some of the GB friends get worried when I am so silent. Don't worry too much, I'm just ill ( again), just beat the shingles ( HURRAY) and worrying about probably a new and scary phase in life with AIDS, but no use in telling about it when test results aren't in yet- one of the most important tests, and MRI isn't even done and might take 4 to 8 weeks before it will be done anyway -grrr waiting and worrying all that time. When I know more I probably tell some about it, depending on the end result of course. So, I am here, coughing, fevering, worrying, bitching out of fear... poor cazzie ..mwah sis. I do know now that when it comes to the really scary moments you only have a few real friends, always less then you thought you had but thank God for the ones that are there! well, see you all soon I hope and uuhm... from what I've been reading it's a mess here LOL there are some newbies here and they don't know that this guestbook is more a community then a GB.. they'll learn don't get fucked up about it, just write enough to outnumber them and/or show then how we work I'd say, but who am I? hey smoochies, Didi

Tue January 01 2002
Message: HAPPY NEW YEAR EVERYONE!!!!!!!!! Dear friends, I was pleasantly surprised that so many people responded to the invitation and joined us in our 'marathon chat'.. and boy a marathon it was.. through the -European- day till deep in the night!!! I am so sorry I wasn't able to catch the first American new year, but I did manage two time zones and half way up to the usa! and I had a wonderful, crazy, lovely time! new faces, old faces, familar faces, faces finally in chat again, and so on, but all friendly faces, thank you for the fun, the sharing of such a special day, and..thank you -maybe you didn't even know- for pulling me through pain by helping me in my attempt to give myself enough distraction to smile at midnight! KISSSS.. Susan hehehe yes that table can have a lot but it isn't made for what happened on it last night.. ah well, nice wood to use for the fireplace ( yes.. in the purple palace we have everything we want, so now we have a fireplace too- ok for my twintwit cazzie a rug to lay on, amongst other things- too) but we sure were acrobatic up there LOL. now, a lot of people wonder what we are talking about but you have to be there in chat to know what can happen if we start a party. ANYTHING can happen, if you only have imagination! hey sweeties, make it a good one, one to remember with a smile. TO ALL OF US! CHEERS! DD

Sat December 01 2001
Message: HIall, hi R, -yes Deb, others who wrote me, it is- almost was since it's going towards midnight here, Dec.1st.. World Aids Day. Of course every day I stand still and think about it, for myself, for others, I send drugs I don't use or have ordered too much to countries where they can't get them easily and need them so very hard, but still, every year the two official days, -Aids memorial, held here in May and World Aids Day are special. Loaded. Important. Statistics, facts, images, stories all is shown on tv the last week and I'd want to scream.. education is one of the first things and social most hard things in some countries, .. we neeeed a vaccine so at least no more children will die, no more children become aids orphans, no more adults will die. They say they are getting closer to the vaccine but when.. when? One day. A blessed day. Love you all, tight hugs sneezy Didi

Thu November 22 2001
Message: Sweeties, thank you for your sweet support, no matter how 'strong' I appear from time to time, will always need you, more then you think! KISSS to all! ( yes Rutger you too.. pffff) Tiny, thank you for your poem, you hit the essence of what happened last past months, KISSSS for it! wow, have a lot of pain today, so I think I'm gonna lay down with an audio book! should watch past midnight but can't sit up that long.. but it's planned to do this week Wilma!!! (ok, a squeezed in message to a wolfie LOL) Uhhm btw no Eva, didn't howl but hit my paw quite firm -and loud- on the table while spelling N E V E R... hehehe ( really!) well, no Turkey feasts for us in Holland.. ( logical but still.. would have been fun if Holland would celebrate the sharing between your settelers ( sp?) and the native Americans hehehe too much to ask I suppose) Ok, Toodles and see you later! MWAH AHoooWWOoooo WOoooo WOoooooooo Woooooooooo ( choking in a howl icon) DIDI

Thu November 22 2001
Message: Heeeeellllo Rutbear ( gotta sit careful.. I am hatching an egg ..don't ask hehehe) Today first day, or actually second, that I feel ill, am in pain but ooooh I feel so good. Proud of myself. stood up against doc B.. with cheerleader at the hall ( fellow aids patients who heard me at the other end of the ward..yes I was furious! ) Nurse Letty was proud too. This firl aint gonna be a guiney pig, not when I am fully aware not when I am in coma or worse. He knew he was wrong, only never expected me to see it, so now he couldn't do much else then shut up and do what I told him to do, which is, back off, be standby if doc P needs an internist to look at something, and give doc P the papers/forms for the specific blood tests a neurlogist never does normally. Doc P was quite pissed when he heard what doc B had said, but also said I am ok now, I just go on as long as I can, and when needed he will try to ease pain, and treat what is still treatable ( pneumonia's etc that kind of stuff) of course, the family doctor is needed in this but.. he wasn't to be reached by P to talk to, but is back on monday, let's hope P can reach him, if so he will call me back tueday or so. cross everything my fam doc will cooperate for once! But.. I feel so good I stood up for myself. mss dragon breath was needed and finally came out. MWAH R.. AND, Dear American friends... most of you will be in the kitchen, already have turkey stress, exploding pies in the oven.. heheh HAPPY THANKS GIVING!!!!!!!!!!!!!!! Love didi

Sat November 10 2001
Message: Hi everyone, sorry Rutger, gotta step in here before hell breaks loose LOL Cazzie, Deb, Las, thanks for standing up for me, protecting me. Caz and Deb you're very close to me, know all my ins and outs so you also know what I don't want, or don't need. But, I do realize that most people only see a fragment of me here. Most of the time just the surface, not more then I let out, or even less. I totally understand the well meant motivations behind every advice, idea, offer I get and this reaction in GB might seem to be a bit out of the blue, hard to understand for some, -sorry but so be it- because my dear friends know what is going on, how much of those letters I get- more then in gb.. this just came on top of it. Tori, honey you mean well and I love you for it. You can't know the situation, nor me. I show my face here, talk about my medical shit, so it's logical I can't just pick out what I get in response to that, and that is ok. Only something has changed in my situation, which is hard to find a way in, and well meant words can be just that little bit too much sometimes. and only me closest friends see the result of that in private. What Caz says is right.. I have to adjust to a scary but atleast quallity wise more acceptable life then with the drugs my body doesn't accept. Finding a balance between dying and living is not only hard, it is insane. And since I am not insane ( unless I am chatting LOL) it is almost impossible. Aids, HIV is complex, and that on top of a body which was already complex, ill, handicapped to begin with it is not responding to treatments most people would benefit from. Now, this is not like I am the only one on earth who has this problem, a lot more people who were ill before hiv have problems, but heck no one is the same. I have tried everything, and that's at the same time also one of the various reasons for being resistant. Interactions with drugs, not for hiv but for other medical shit I was born with make it very difficult to take a lot of hiv drugs, -doesn't mean I didn't try but the interactions proofed to be dangerous.. at one point there is an end to trying. Hard to accept for many people I 'know'.. but I think it's most important that I can accept it, or at least try to. time to laugh and live as good as my body lets me, and don't waste time anymore! I can assure you all that my doctor ( the good doc not the less sympathetic one) knows all treatments, registered, not yet registered, in the USA or where ever and will inform me if there is anything I could take safely. Ok.. nuff about this, have fun, make it a good weekend and no sword fights over me, please. MWAH didi

Sat November 03 2001
Message: Hi Rutger, hi GB family, Oh my.. I get a feeling I've been too quiet.. some friends are worried because I went hiding a bit. sorry for that.. I did read GB and thank you all for caring, and the cards I received were sooo sweet- and R, thanks for covering for me when I wasn't able to write.. indeed I needed to get some air, which I got a day later with Les ( the Cub).. no matter what kind a rag doll I become, we must repeat that lessie, we only need some speed to be able to enjoy it, yes sweets I am in a hurry but then again, who isn't? I am relatively ok, that is, emotionally. things suck, and will suck worse, but at least a change in doctor land for me. The, now in GB and friends circle known 'doc B' will be replaced by doc P ( oh oh that is confusing those shortcuts for names...) P becomes my first doctor and if doc B decides he isn't needed anymore, P becomes my only doctor. but.. at least one who listens to ME and gives me straight forward answers, and he cares. I thought he was spineless, must admit, - I always liked him a lot, and almost begged if he could talk to doc B, but nothing ever came from it. now I understand he did try but doc B didn't listen, and doc B was only secondary, not my main treater.Not he is he can take over.. and he does. He is even going to talk with my fam. doctor, who always has been working against me. But, Doc P knows ways to get him into action and I trust him. it's gonna be bumpy road, a short road, butI am just gonna try to get everything out of life as it is now, as long as it there.. just have to do it in faster pace with the little energy I have ( now that is kind of contradictionary but heck.. that's the challenge) But I think you can understand it's not easy to just go on and babble and fool around right away after these sudden changes and in some way revelations. Digest, adjust, prepare and at the same time letting go, and LIVE.. a tough one but I can do it. just need a little room ( preferrably THE ROOM LOLOLOLOL) to be me, in all colours, without too much explanations. I mustn't think of who I would have been, in what kind of emotional shape if I had still been as lonely and isolated as before I found this site. Back up from friends, a pinch in the arm if I stay too long in my own world and need to communicate again ( thanks beeps).. if I hadn't found you all I would only have my treasure bro Rem, but all his love wouldn't have been enough to keep me going, laughing, feeling human. Oh my.. I get sobby. Hey sweets, laugh, lets make a whooooole lot of parties in chat, and bear with me if I can't keep up with email as I used to.. I am trying, believe me!!! LOVE YOU ( thanks for borrowing your GB Rutger!! hehehee) byeee! D

Fri September 12 2003 - 01:44:21
Name: Memo From Didi
Email:
Where are you from?:
How Did You Find Us?: NetSearch
Message: i tried to write u letter but it got deleted when i fainted. i try my best tomorrw. i think of you today. Jen, i have you as close in my heart as 2ys ago on this day. the fear of that day 4ever shared. and everyone i looked for and with that day, - mike p, remember i was in panic knowing u had to fly but i didnt know if it was again over an arab country? wont ever forget the relief when u wrote me in gb that u were fine. love and cryimg blood for you and all we lost, - incl my pers. losses, i miss you Ian, david, randy and steve. i hope to re-write about how i am and why i cried blood today. dont forget me, i won't ever forget you. bless you all. need to sleep. didi.

Wed December 25 2002
A Christmas message from DiDi

Where are you from?: Holland, near Didi's place
How Did You Find Us?: NetSearch
Message: Christmas eve, 2002, Holland,,,//... Hello dear guestbook friends! It has been a long time since we've seen eachother. As most of you know I cannot go online without help anymore, so I read what people show me, and I write through a special phone on which I have sort of internet access. Alas, RH site is not one of the sites I can go.. - same counts for his chatbox- but with help of my friend here I am, with Xmas.//..It has been a year of many set backs. getting more ill and every-time just barely getting over it but never coming back to the level of 'health' I was before each illness. That is hard, I take morphine 4 times a day now, which leaves me not much time to be 'me'. The morphine puts my brain on stand by for hours after taking it, so I won't feel too much pain. It all sounds pretty bad, but this year also brought so much good..//..Friends keep lifting me up, time after time. Friends I thought I had lost came back, and are, as they always have been the lights of my days.. the need to communicate, to tell them how I am doing because I know they are worried makes me fight till my last breath to use that thumb of mine and write an email on the phone. even from the ambulance only a day ago.// And still, after all this time the support and love from you, my guestbook family makes the beauty of this year complete. I know it was a disappointment for a lot of you that the surprise I should get through Grazia still isn't here. But, the idea, the gesture and fact you do this for me is worth as much as getting it. Once it is here I will try to thank you all here in the GB, that is easier for me then writing so much separate mails. I still think of the times we had so much fun, here in GB, and in chat. For 2 years long this guestbook was home. The Xmas and New year's party ... it's a memory I will treasure for ever. // Not being alone is the most important when you are this ill. It is a very very lonely fight.. but knowing people care from all over the world, and that it matters if you let your head down or not, thát makes life as I live it now, worth living. My closest friends sometimes don't realise it, but they are the hands that carry me. Without them I would have given up. The same goes for my mother.. she didn't dare to have fun without me anymore. she was a captive in her own home, just like me. But, because I have two wonderful real-time Dutch friends, and next to them one who is partially real-time, and the rest he's 24/7 loving heart by phone and internet -wink wink Rutger my treasure- and six contiuously in contact, from morning to midnight American and English friends, my mom dares to live again. Yes, I do have fun too. my world is very limited of course, 4 walls and a bed, yet it is as broad as the lives of literally ten people at the same time.//... Thank you for again a great year together, be it less in the guestbook, it's never less in my heart. In mind I hold all of your hands and hug you!...//... I wish you all a wonderful Christmas, with family, friends and loved ones, and, from me and my family, a joyous, healthy and loving new year! Cheers to you all! love, didi

Fri May 10 2002
Comments: Hi dear friends, a step over from the RH site to this starfishsite.. not a big step for me though.I hope the children will benefit from it, the adults learn something, and those who come and read, make the stepover as said above will GIVE something. being in the same shoes as the kids with aids, in another way, another place but same nasty virus in my system ( together with morphine now...)I know how hard life with aids is, and imagining a child in my current position on that far away island I can't do anything but cry. Love to all, love to the children, love to those who love with me.
Didi

Thu May 30 2002
Message: Hi Rut, hi folks. Been a very long time, I know. It won't happen often, showing my face here, but I do try. Thanks for all the nice waves to me GB friends, Thanks Shaz.. I think you meant a Didi cat.. but I am not sure. I hardly read GB and don't really know what kind of animal it is, but I guess a cat. I'm awake between pills, morphine. It is hard to find time between nurses, pills and a lot, a whole lot of awful pain. the few times I write emails I have help. Most of the time that is, sometimes I have to do it alone which costs a lot of energy, too much. so, I write a line when I can, store it and when it is finished I send it. Too late often but I can't help that. Same with this. Most of the time the people I have to help me manage to write a letter, two tops but writing in here as well is a bit much to ask. So, I have saved lines till I had a letter and now I copy it in here and place it. Writing is more difficult because of a stroke I had not too long ago. left hand, leg, part of my face are numb. Only my mouth -speech- will improve a bit with exercise (Lord where do I get the energy to exercise...) but I won't regain the feeling in my arm and leg. Well, I was in a wheelchair already, but the left was my best leg, I could move it, not stand on it so I had some use of it with turning in bed, staying steady on the loo ( LOLOLOL yes those things become difficult when you're disabled as some of you know by experience) Now the left is almost as bad as the right leg so everything costs more energy which I don't have, and also more energy from my caretakers. I hate it that my mom, Ger, who also is disabled, severe heart patient has to help me a lot. she can't but she does it anyway. We have nurses but not 24/7.. A few days ago my friend Remco asked me how I feel, not physically but emotionally, psychologically. 'I don't.' was the answer. 'No time to feel between struggling through the day'. Not totally true though. the nights, when the morphine is not yet getting me to sleep, or when I am catching breath after nasty bleedings and more of that stuff, my mind goes everywhere. And all thoughts bounce back from the walls in my room. A strange sensation of lonelyness which can't be solved, can't be taken away because no matter how many people are around you, the fight is a fight you have to fight alone. and lose alone. the few times a week I do get on line, with help or alone I try to stay in touch with some, read some of the GB if it's copied to me. a world, a reality I try to keep seeing as mine, even though my own reality is changing and becoming something hard to adjust to for those around me. Waves from you make me keep on trying to realise your reality, cyber or real IS mine too, no matter how far away. No matter how my walls bounce my thoughts back. there IS an escape for a few seconds and the need to write this long boring blah blah line by line spread over a week, lines with help, lines without help. because I know there ARE still people somewhere who keep seeing me as I was. When I start forgetting how I used to be, you remember and sometimes even remind me of it. LOVE to all, big hugs. kisses Rutgerbear.. one armed hanging is hard, so just take that rocking chair from Beans of Egypt and rock me to sleep.. Didi ( DD or Dee or Deb or Daisy or.. Duuuh I drift off obviously LOL) ME.

Tue April 16 2002
Message: Hi R, folks, ---Heike, Roy Batty is the android played by Rutger, in BLADE RUNNER. -- waving now I can for a min. Morphine not going as it should, second one on my arm now, meaning 2 patches, one always put on one and a half day after the other, each on for 3 days so it's a bit more then the original dosage but doc thinks not enough. dillemma, being totally knock out and less pain or at least a bit clear in the head and too much pain. And a lot pain it is. Gotta wait till my body is used to it to see how drowsy I really will be. that means waiting till I am a junk if I put it in my own words, words the doc never will use. stupid, 'cause the fact stays the same. Pain, such pain I scream in the middle of the night, nurses having nightshifts.. Who is this thing laying in my room.. it looks like me. that's all. Nurses coordinator asking what makes me want to go on so strongly that I refuse to go to bed as much as doc wants me to.. I didn't know, so said music. 'you realise there's only a very very slim chance you will be able to record the songs you want to?' Yes dammit. Yes. But I'll that that slim chance and try. at least try. But is it the real reason to go on? no. What then? don't know. A body stops when it's time. Pain goes on till it's time. Dignity gets lost till it's time and I have not a damn thing to say about it. Lets hope the right way of taking it, and the right dosage -of morphine- will be found soon so I can listen to my by morphine influenced mind that tells me I can do some more while in reality my body wonders where the heck that illusion comes from. Who cares? As long as it functions it functions. Wearing out my bod from under pink morph-glasses.. Is this me? Some who know me a bit will shake there heads, You R will definitely shake your head.. I asked mom to remember who I was, a year ago.. why she asked. . Before I don't remember myself. It's time to..log off. Morphine starts to throw my eyelids down. See you, when I can. Love. DD

Fri April 12 2002
Message: hi R, folks, planned to be in bed, but sitting in my chair anyway. -the other way around happened more then I want to as well today, errrr as good as every day over the last month, and longer. The day started with a fam decision; our oldest cat, a half pedegree of 18,5 years old who is ill for a long time now, appeared not to be able to see, next to hardly being able to walk and having seizures. Time to say goodbye. I wanted to bring her away weeks ago, I know how it is to have seizures that many.. Mom does too but Pien was more her cat then any one else's and, with mom's heartcondition I didn't want to force her into anything she couldn't handle. But, when I noticed yesterday that Pien bumped into the same spots I do I wondered if her sight was gone now as well and since I already had the feeling she should no longer be suffering - Lord knows I wouldn't want to go on like that!- Time to be the bossy daughter.. and mom understood she had to let go. poor dad had to go to the vet alone, mom nor I can come with him in our wheelchairs. It was ok, I sat with mom, made sure I had her medication with me. it was needed, but no wonder..pien was part of our lives since she was saved from being drowned as a kitten, hardly able to be away from her mother ( a full pedegree -peach longhair- who had been knocked up by an alley cat LOL) So, farewell Pien, -go to the USA, meet Lucky.. -justice-cees- hahahahaha no wonder you recognize the skippy.. TEEHEEEE I'm Dutch too, so I guess we were the only ones knowing this silly toy as a skippy ball! well, finding another position to sit in now and hope I can lay that darn back down soon. friday, or monday we have to start morphine, can't hold it off anylonger..the bit of 'health'( non-health better word) I have left is getting less and less because of too much pain. Energy level down so I have no defence against other kinds of stress, like it started ( and never stopped) just before I told here about the nurse aid I call the 'duracel bunny'.. both doctors- gp and specialist say I can't get back to how I felt and was before that, let's say a month ago is even too much to ask, but with this pain it will be hell, so no other option; morphine. that and finally some stuff for my black outs, to inject. My nurse made a joke about it: 'finally something I can actually DO! shall we practise?' DUUUUUUUHHHHHH no thank you, practised more then enough LOL I can do it myself I said.. but smartass she is 'oh yeh? you really think you black out only partially? you're a patient, behave like on. say yes nursey.. -NO nursey... ( darn she is right.. it wás a stupid remark from my side but heck.. I am ill..no? no good excuse? shhhhhh!!!!) hey R, folks, sleeeep well or gooooood morning. night. - eh think it's not safe to hang while being on morph so I need a construction around your neck R..you do want me to hang safely while being a starting morph junk heh? or ya can use y'r hands.. AHHoooOWOWOOoo WOoWooooo -sorry couldn't resist. DD

Tue April 09 2002
Message: hiya! Hehe sorry Rutger but I've got several questions in my mail box to ask me what the heck a skippy ball is hehehe, and I think it's handier to answer it here ( too much mail and one letter copied didn't work 'cause questions are not the same) ok, a skippy ball is a large airfilled thick plastic ball with a plastic handle on it. Kids ( errr when I was a kid teenager and adults sat on it too duuuh) sit on it, feet reach the ground and hold tight on that handle, push themselves up with their feet and then bounce/hop along on the ball... if you're good at it that is LOL if you're not, you hop with the ball behind you... or ya fall on your snout. I couldn't sit and hop on it as a child, -impossible with only one leg working so I had it on a cord and pretended it was a dog and smashed it around ( good defense material when kids or my somewhat sadistic sister teased or hurt me too!) so I pretend to hop ( indeed as a kangaroo!) around on a skippy ball in this GB fantasy LOLOLOLOL I wonder if the name came from skippy the kangaroo.. think it did! bye! DD

Mon April 08 2002
Message: hiya, just a wave, I'm still here, not as frequent as I used to be but that's unavoidable I'm afraid.Don't read the GB that much of late, but I do hope the spirit and the 'feel' of how it was, let's say a year ago will come back soon! - Rutterbutt, nice to see Sarah's entry as entry of the week. hadn't read it.. duuuh logical after telling I don't read GB that much..pfff you may hit me hehe, Sarah I hope you run your ass off and keep those st*rfish in your eyes. I know, the people on the Islands have different problems besides fighting this darn disease, but no matter where or how, I feel for and with all hiv positive people all around the world. It's a bit stupid maybe, but the words 'fellow patients' doesn't work for me, never did. Here at home and with my 'lost' friends from different countries, different continents, we called and call eachother colleagues.. not that everyone likes that.. but we did after all we fought and fight together ( and are crazy together.. hehe.) Anyway that's just some silly babble, all I want to say is, GOOD LUCK! Rutger, I can't hang at the moment.. shall I try a skippy ball? bounceee bounce ( do you remember those skippy balls I wonder...ah well if you see me bouncing around; that's me on a skippy!) back to bed. AGAIN. 1.30pm..just realising the time already makes me angry. It's like I'm ill or something ( duuuh..that was supposed to be funny but now I read it it lost it's ..what ever.)Wednesday talk with my family doc ( GP) wonder if he'll steal my skippyball by pumping me full with dope. big chance that's gonna be main subject of the day. so, if anyone sees me bouncing around on my fantasy skippy ball, hide me please! -eehm Rutterbutt that long leather coat..what movie was it.. I should easily be hid under it!-without the skippyball that is.. a plan? OK , DEAL!. MWAH . Didi -in an insane mood.

Thu March 28 2002
Message: 'ello 'ello, didi phone home ( ET on my mind..duuh) It's been a long time since I wrote in GB, hmm let's feel, does my chair and table in this imaginative corner of the room still feel like home? (...) almost. What a variety of subjects of late, most not really followed by me so I won't comment on them either. glad that old names still pop up though. I'm slowly climbing back in the saddle again; medicine poisoning gave us no choice but stopping the drugs that kept my spasms under control. I was so damn ill that I was hardly able to keep my eyes open. So, I/we stopped the drugs, which brought back the spasms worse then I expected, pain almost unbearable but as said.. no choice. Had to wait till my blood levels had dropped. (normally there's the option to really clean the blood but the blood levels of my other drugs have to stay as they are so that option was not possible..Drat!) Now we are slowly building the drugs back up again, and this time I made up my own rules. I explained the doc that I want to wait longer before adding another pill to the dosage, because I think the increasing blood levels could also be used in my advantage; wait a bit longer and let less pills build up in my system and find out how much is needed to create a steady blood level after increasing sets in. I know, difficult matter but in the end the doc agreed. we only don't know if even the lower dosage will increase to unacceptable levels. In the past I have done this with another drug and it worked as I thought. lets hope this one does too, 'cause changing drugs is not exactly what I am waiting for. If it doesn't work I will have to though. for now, I still have spasms, still pain. But a bit less then 2 weeks ago so I am able to go to chat again. (yeeha!) not every night, there are still too many days on which I cannot go on line. that means it's going bad- everyone who knows me knows I am going on line no matter if I have to lay in a double knot for it. But at least I am going better even though slowly. It'll work out, one way or the other. Next to the medicine poisoning my daily life has changed. last 2 weeks there has started something pretty heavy.. my new caretaker ( not a nurse but personal support giving caretaker if I use the translated term for her job..duuuuh) needs a lot of work from my side. She is young.. maybe too young to handle this situation. But for now it looks like I can train her to be exactly what I need. Only.. how do you do that -training and guiding someone with hardly enough energy to keep yourself going? She is sweet, only it's like someone put a duracel battery in her ass.. keeps going and going, just like the bunny with the drum in the commercial. She's here every day now. also on Saturday. it's like I have to build up a relationship in warp speed.. And of course it is just as heavy -or worse, for her. 25 years old and being bombarded to the first and most important caretaker I have. Also when I would be dying. she takes care of me, and I feel that I have to take care of her, for as far as I can. Protect her from needless frustration, make sure she has a talk group to go to at the agency, make sure she takes a vacation -or just 2 weeks someone else to take care off if it becomes too much. I don't like being taken care of, in fact I despise it, my worst nightmare coming true.. and at the same time I am grateful for it. so double that thinking about it is only making it worse. Just accepting it -or trying to- is the only way to keep it 'liveable'. there are more nurses in the current team I have created around me at the agency that arranges my help, but medical things, - or washing me when there is something medical that would be tricky for this young girl to handle is more.. distant. fast. if it can be done in 10 min they will. So for me this girl is partially my (only) AIDS buddie. Once I know her better and she knows me better I think we will be a good team, but accepting that it is needed that she is here almost every day which is the case, is not yet something I really can. One thing today did make me happy.. Mom dared to go to town in her wheelchair, alone. Shopping. something she hasn't done in more then a year. I had this girl here, so I was not alone, as safe as can be so mom had a half day for herself without worrying about me. I felt shitty, would have liked some time alone too, I definitely wouldn't care if I am safe or not.. but seeing how happy and relaxed mom was made all my personal feelings fade away. A smile on Ger's (my mother's) face is worth it. Life's changing. My life that is.. Only my life. The lives around me should not change for me. Not where it is possible to avoid it. The lives around me have to go on when I am not there anymore, that's clear to everyone.. but they shouldn't stop or change while I am still here either..that would be worse then wrong. I have help.. I will use it. the thought that I am helping my parents with it makes me hate it less on the moments I wish nurses and caretakers would disappear in the centre of the earth.. or when the duracel bunny is making overtime again. I am glad though, that in my changing world, the net, chat, friends- old and new still have a place. oh my.. I am chewing up GB space... hehe well...I don't write that often in here anymore..don't worry R no new style gb bombs hehe. Now nap time for me. hugs, -hanging as always! love and mwah's! Didi PS: HAPPY EASTER EVERYONE, HAPPY PURIM ( sp?).

Fri March 15 2002
Message: Hidehi Rutger, GB residents! -Milla, I know how difficult English is for you, let alone translating a joke, but I think you did pretty well! ( where can I find that native man...especially the one with bad eyes hehehe) It's the same old story here, except for having a new nurse. eehm, correction, not a nurse but still qualified to take care of ill people, handicapped people etc. she's a bit younger then I am -god, it happened.. I'm no longer younger then the ones who have to take care of me, that combined with those silver hairs between the black ones ..booo hoo hoo, hehe anyway, she's great. My first nurse won't be back for a while, not till her broken shoulder- 3 fractures in it- has healed, and then still the question if she can do what she used to do. But, if she can, which she thinks she will, those two will make a perfect start of a team. Funny, the new one's partner is a musician I used to have in my radioshows a lot. When she told him I had said I knew him, he had to dig deep to recollect, -the picture someone needing this much help didn't fit the didi I used to be at all. When she told him that I was the chick in the wheelchair at the radiostation he had said "no, that skinny little bitch?" - ehh this was meant in a nice way, at least, back then it was quite handy to be a bitchy.. but it did make me realise how long ago it all is for everyone. they went on with their lives, but mine kind of stopped. My longing for the old days ( and the 'skinny' part as well LOL) makes me remember it clearly, vivid, as if it all stopped yesterday.. for them it is 8 years ago I started,5 years ago I stopped. I try not to start the subject boyfriend with her though..yeh I know, protecting my own memories, since they most likely got idealised through time. but, no more looking back for now. I got someone to help me, and if I want to and can, go with me if I want to get out of the house, even if it's only for a walk. Well, we'll see how it works out with the two of us. At least she has no aidsphobia, I had to insist that she put on some surgery gloves, 'cause I know I am her first HIV patient, and don't risk having a nurse starting to panic in the middle of the night because they suddenly realised they touched someone with HIV all over the body. Nope don't take that risk anymore. but it did tell me she is pleasant to work with. Someone who sees me first, and secondly sees my illness. most times it is the other way around. And who sees me like that, sorry, no matter stranger or relative, -or something in between hehe- they get kicked out of my life..and not too gentle either. ok, my bed is flirting with me, -yes honey I'm with you in a few..hehehe. Take it easy, have fun, -both GB folk and Rutger- and have some feet in the air time! Love, hugsies and that kinda stuff, Didi

Sat March 02 2002
Message: yaaaaaaaawn..-sorry, about to wobble into bed- have had some great company today, and didn't sack in like a pudding, the pudding effect came with delay LOL So.. dear 'ouwe zeikerd' I am sorry, must agree with my twintwit, who sounds like she is picking up a chicken in some sort of weird ritual where you have to molest a feathered thing to get the house clean...writing your blobs of verbal pingpong saves ya from a LOT of stress.. writing it in email is what I do, select, copy, keep the mail open behind the gb window, paste, delete mail once GB has swalllowed. what? no unwanted puter lessons? can't possibly think of a reason why someone wouldn't want lessons from me, the most impatient teacher ever. ( give lessons with a wooden hammer behind my back, just so you know). -wood will and waiting eh? Starfish's baby burps are shitty, loads of effort, little hurray's- but I am sure, that time WILL come. Miracles, right approach, luck.. and time. Strange to need time in two ways.. time for the children- stretched time- and time to be where ya wanna be- speeded up time.. such contradictions and most of the time so impossible to do one without the other. Hm, eyes start to close and not of free will..better let go of the book, hold on to the neck. yeh, that's a nice thought. I am amazed that I don't feel terrible today- had a stomach bleeding last night- blood out of the stomach is a relieve, had the worst stomach ache I had in weeks. It stopped. Don't worry. not yet. Next time you're pissing warn me, then we close our eyes.. like real ladies ( fat chance.. I know) think this little hippo will be dreaming of bruce willis and Lance Henriksen.. -can't seem to get rid of bruce, and Lance.. well.. ehh.. no comment. Voices, clearly. -would be strange if it was the looks.. since I don't see it HAHAHA.. promise to imagine my papabear's neck in the dream somewhere..in a papasafe part of the script,hehe. ( damn, when I am tired I sound like I am on the booze..) enjoy the weekend, Wave from Ger and dad too. de mazzel! Didi

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