A Conversation for THIS IS HOW I 'REALLY' FEEL ABOUT MY MUSCLE DISEASE

Pandora you make my heart ache!

Post 1

Katsy a.k.a. Esti

And you have something wrong with your lungs too? You make my heart bleed for you! I know what it's like to have trouble breathing, ie, finding you're struggling. I've got asthma and quite often I find it severly unfair when I can't breathe!

Pandora, is there any cure to ANYTHING you've got? There should be for the muscle disease, and hopefully the lungs! Let me know!

Hugs and kisses, Esti xxxx


Pandora you make my heart ache!

Post 2

Pandora

Oh honey, don't fret so! I've had a wonderful life...really! There's no cure. We, just a few thousand were poisoned by a toxin in an amino acid. That's why you must be sooooo careful about vitamins...nobody checks them! And since you believe in God, you know I'll be going to a wonderous place! smiley - smiley Life is ALL about dying. We must! It's natural!
I'm very sorry to know you have asthma!!! I have a nebulizer. Just like at the hospital. So I'm able to give myself breathing treatments
without a nurse turning on that bright overhead light in the middle of the night smiley - winkeye When I tried to get medical help from our government I was actually told that I had too much education! LOL!!! What that has to do with being ill, I'll never understand! Please don't worry. I felt at first like I should keep my health problems to myself. But as I became close to people here, I felt like I'd be telling lies to leave that part of my life out & if I just were to drop dead my new friends would be surprised. Now, everyone will be ready smiley - bigeyes XOX Pan


Pandora you make my heart ache!

Post 3

Katsy a.k.a. Esti

Vitamins???? You mean the supliments you get??? You've put me off for life!!!!

That's the one good thing, if you die and you've lead a good life it is said the person is glad to be dead, probably because the afterlife is nicer!

I've had to have a nebulizer! When I was ages 6-7 I had to have one at home as that was when my asthma was in it's "prime", but when I "got used to it" and found hospital was the best place for me we scrapped it as it didn't really help.....recently it's been getting worse, I'm not sure why, and I'm not happy about it! I haven't been having any proper attacks but I've been very close to having them! Oh well, I'm not the minority of kids in the UK now, it has been growing alarmingly smiley - sadface

I think keeping all this to yourself is worse, you should publisise it, as there may be other people in your situation who want to know how many other feel the same!

You never know...they may find a cure!


Pandora you make my heart ache!

Post 4

Pandora

Katsy, this didn't JUST happen to me! I've been ill since the Fall of '89! I've been to Washington D.C. at congressional hearings...I've picketed the Japaneese Embassy (as they were the 'main' responsilbe party) I was on the Board of Directors for EMS & for many years I wrote a "Dear Val" article in every news letter the NEMS Borad puts out. And I've been on CNN news several times...all day, evey 15 minutes. We have the 1st bio-chemically engineered disease. It's being studied along with the Gulf War Victims and the people who became ill from the breast implants. Oh, I've also been in a number of newspapers
about the dangers of vitamines...yes, you NEED them, so EAT right! Today I received notice that 5 more EMS'ers have died. We ALL get cancer...one fellow had a cancer named after him as it was never before seen. And honestly, for the very last time...there is no cure, nor will there be. There just arn't enough of us for anyone to bother with a cure. Just put it out of your mind. Now you know not to take pills...since you NEVER know what's in them-no matter what's on the lable!!! You'll be safe from it! Don't Worry -Be Happy smiley - bigeyes


Pandora you make my heart ache!

Post 5

Walter of Colne


Pandora,

Please, please don't ever go back into that box. You are a fair dinkum true blue bottler. Two Feathers, you take good care.

Walter.


Pandora you make my heart ache!

Post 6

Katsy a.k.a. Esti

smiley - sadfacesmiley - sadfacesmiley - sadface

So they couldn't be bothered with ANY compensation? Not even one bit? That's why I hate the government, they don't seem to be bothered about civilians...just them and their money. I hate taking tablets, I'm having to take capsules right now for an infected toe, thankfully they've worked and I think I finish them tomorrow! I have to be careful what I take anyway, I'm allergic to certain food colourings...once my brother bought me some lovely sweets, and I threw an asthma attack! Why? Because I was allergic to the orange and sunset yellow colourings, which I didn't know I was allergic to, so I'm careful anyway! Have you heard of Neurofen (I think that's it), it's a painkiller and apparently I'm severly allergic to them, and I don't want to even try and find out if I am!

Anyway, better run....I've made a choccy cake, better go and get it tout of the oven!


Pandora you make my heart ache!

Post 7

Pandora

Why, thank you kind sir! It is nice to know chivalry has not gone!


Pandora you make my heart ache!

Post 8

Katsy a.k.a. Esti

chivalry? I'm afraid I don't know what that means!


Pandora you make my heart ache!

Post 9

Walter of Colne


Gooday Two Feathers,

It is early morning here in Australia, which probably means it is night-time where you are. Was that 'chivalry is not dead' message for me? I hope so, it was a lovely thing to read, although I fear it is unjustified. Can you find time to tell us some more about your ancestors, their traditional way of life in days gone by? Take care.

Walter


Pandora you make my heart ache!

Post 10

Pandora

Yes, for you. It is about 7:30pm here. The traditional life sounded so romantic as my Gramdmother would sit & tell me endless stories. However, looking back, I would not have wanted the harships they endured! My Great Grandfather was in a war, I believe against Russia.
I don't have a copy of our family tree, or crest yet. He lost part of his head in the war! I've always wondered how he managed to stay alive. Of course they used many healing herbs then. (I still use many today, as my Grandmother taught me many 'secrets'.) But they fashioned some type of animal skin to cover his missing flesh & bone.
Then when my granfather was 14 he joined the army & went to war, I know not with whom. Meanwhile the peasants carried on with their wine making for the Count the name escaped me many years ago, but it sounded something like: Palinie...My Grandmother's (Negymama's) English was as poor as she was wise. But she knew how to keep a young girl's mind off snapping beans or some other chore...the stories go on forever! The one thing that's awlays bothered me is the possibility that my Grandmother may have been molested by the Count, yet in her innocence never been aware. She spoke often of how kind he was. Once she had been sold to him, his wife hated her! She would have that poor young girl toil for hours on end in the kitchen, baking breads in the brick ovens & making huge couldrens of stew for the entire family & staff. Then at night she would not be allowed any coals for a fire in her small room. Often, late into the evening the Count would come & gather her up in his arms & carry her off into his bed, She said he was always so kind to her, as she was so very cold, and he would rub her 'all' over her body until she fell into a deep sleep. Perhaps there was nothing to this, but I think with the mind of a therapist, and while I know many simple things can be seen in a variety ways, this seems like odd behavior, as his wife was mean to other servant girls as well, but my Grandmother never spoke of anyone else receiving his special treatment...that she must never speak of to anyone! When My Garndfather married my Grandmother, she was sent to care for his Father while he came to America to earn enough money to send for My Grandmother. A task she did not enjoy, as he was a mean old man! And treated her badly! Still he was able to get about well enough to hunt with the Count. As the Count became old, he gave the land to the peasants who had served him well. Soon afterwards My Grandmother came to Elis Island in New York to meet up with my Grandfather. Thus the "Cerlan" clan was named. They just gave you a name as close sounding to your own as they could! My maiden name should have been spelled with at least one Z and a few other letters that were missing once they became Americans! I still have the news paper clipping of Negymama taking her citizenship oath! But you probably are interested in further back. My Grandmother would not tell me much of our history, as it involved Gypsy's...something that was shameful to a God fearing woman such as my Grandmother. My Uncle in Fl. is having old papers translated by a paster he knows. This must be done quickly as my Uncle has cancer & will not live much longer. Luckily I am his favorite niece (out of 22), so I am first in line to receive the family information. I'm interested in when we were a royal family & beyond.
The papers speak of a 'great man' famous in all of Europe. I am bursting at the seams to find out more! If you are interested I shall inform you when I find more. Another thing that's always bothered me is, my Grandfather saved many things from his & his Father's days in the army. However, my Grandmother made him (I wish I knew how women 'make' men do anything!) seal all his 'treasures' in the attic! Where the attic stairs had once been, in through their bedroom closet, was suddenly a wall with wall paper over any visible seams! When the house was sold, we asked the people who bought it if we could tear down the wall or go in through the attic window, offering to pay all costs. They refused. Shortly thereafter they entered the attic window. Items that were kept from our view were hauled away to auction. After that day, a family of 8 seemingly had spare money for the first time. One of the young girls let it slip that it was from the sale of the brass & gold war things that were in the attic! Hmmmm, We'll never know. Hope I haven't bored you!
I'd LOVE you her about YOU & where you live!!! I'm thinking of moving,
somewhere I can be well away from people, and left to my writting. I always wanted to go to Australia-it's the snakes that keep me away! I've wanted to dive the reef...as well as take a nice long walk-about.
It's just those bloody snakes! Any information you could pass along would be greatly appreciated!!! smiley - bigeyes By the way, it's been nice to meet you. I enjoyed your Home Page. You hve some topics of interest going...couldn't help but to stick my nose into one smiley - winkeye


Pandora you make my heart ache!

Post 11

Walter of Colne


Pandora,

Thank you. What a nice way to start the day, reading your jottings. Hey, what snakes? I have seen about half a dozen in nearly forty years and without exception they ran (slithered) away as fast as their legs (if they had any) would carry them. And I live in a rural area, not in the city, so I guess we would get to see more of them than most people. In Australia we have far more to fear from bad drivers, and the poisoning of our air, water and soil, than we do from snakes. Although Tasmania is probably the most unspoiled place on Earth, a real little jewel with fresh clean air and waterways and a clear atmosphere virtually unpolluted by industry. Friendly, laid-back people. It is a beautiful place: I wish I could find a way to post some pics, but if you are interested there are web sites that would give you an idea. Our biggest city, Hobart, has a population of around 150,000, and in the whole State there are maybe 450,000, so we are not big in the scheme of things. Whoops, I have to start work - will write to you again soon. Thank you again. Take care,

Walter.


Pandora you make my heart ache!

Post 12

Katsy a.k.a. Esti

When I was younger there were loads of places I wanted to live, mainly being Brazil and Australia! Now it's California or Jerusalem! I'm stuck between them! I'd love to go to American high school, not only because there's no uniform but everyone seems to have much more fun than we do.....we've got a non-uniform day at school tomorrow, so it means it's the day everyone shows their true colours, sort of in an outrageous way! I was hoping to bring a camera with me but I've got no film as the one I bought just so happened to be a duff one! If I manage to get one on the way to school tomorrow I'l get my mates to take a picture of me and you can see what I look like! Pandora, I'm trying to convince Jeni to let me take a picture of us as a band, and she said maybe! I'm going to look pretty outrageous! I've got a few dreadlocks in my hair and have a ton of bracelets up my arms, including wrist bands with spikes on them! *hisses loudly*


Pandora you make my heart ache!

Post 13

Pandora

I LOVE dreadlocks! however, since my hair's down to my butt...I don't think they would work for me! Jeni E'd me today, tomarrow, after some much needed sleep I plan to E her!

And Walter...anything you can tell me about your aera, including how to find more information would be helpful. Before I would make a 'move' I would take a long visit first. I am fasinated by where you live...rarely see snakes? Hmmm...are there many caves? I love to explore & I also like bats! And what of Aboriginies (SP?) are any found in your area. Are women looked dowm upon, as in some areas of the World? I am hoping to relocate within the next year. I will hate to leave my cabin. But, it's only wood smiley - winkeye Very glad to have you awaken to a "friendly face", as it were.


Pandora you make my heart ache!

Post 14

Walter of Colne


Gooday Pandora,

It is fair dinkum about the snakes, but we do have plenty of caves, masses of them in fact. Some of them are glow-worm caves, and others with fantastic arrangements of stalactites and stalagmites; they look just like some kind of fairyland grotto. Aborigines have had shameful treatment at the hands of white settlers in Australia, and nowhere more so than in Tasmania, where virtually all of the indigenous population were wiped out by the end of the nineteenth century. Very belatedly, some degree of recognition is being grudgingly conceded to Aborigines, here and elsewhere in the country, but it is a long, hard and painful process and there is much work and a long way to go before some form of justice is done to atone for the past.

I wouldn't say that women are looked down on here, but that is always a chancy assessment for a bloke to make - maybe I will leave that line of chat to those best qualified to opine.

Now as for bats, we have them a plenty. Ordinary bats (had one in the house not so long ago, he/she must have come down the chimney), and flying foxes and sugar gliders which aren't really bats at all but they glide from tree to tree in a very nifty manner.

And Pandora, and anyone else who may be interested, you may find a visit to www.tas.gov.au could give you lots more info on Tasmania, including a 'virtual tour' (which I haven't taken yet - if you do it let me know what you thought). Take care,

Walter.


Pandora you make my heart ache!

Post 15

Pandora

Oh Walter!!! You really must try www.tas.gov.au
They've just updated it on July 18! Wow! They actually do all they can to get a person interested in visiting! How lovely!!! Now I'll never get it out of my thoughts! A writer friend use to live near you & he was the one who got me thinking about living there. Now that he's here in the US...I'd feel quiet safe going there smiley - winkeye I will visit the site again when I have more time to read more! By the way, would you mind visiting with me on my chat forum? It's called Chat with me, or something original, like that. I 'try' to keep to the subjects titles.
Just a new thing I'm trying...I'm trying to become more orginized. HA!
We'll see how long this lasts! And do you know about the short cut to see the newest posts? at the top of the page, where the tread is...You
just errasse everything back to the ? (leaving the ?) then type in :
latest=1 Then before you know it, you're at the newest post. Can't wait to talk with you again. Take Care......Pandy


Pandora you make my heart ache!

Post 16

Katsy a.k.a. Esti

Dredlocks, boy they went down well! I wore about half a doezen bracelts up each arm, and some boys went passed us at lunch and looked at us in *that way*, so it was good! Wonder if I can impress a certain person with them? smiley - winkeye

I took some photos at school today, and one of the girls doing A level art/photography offered to take a pic of us as a group, so hopefully you'll get to see a pic of us as a band! Won't be for a few weeks though, anyway, there's a few pics of me in there so hopefully you'll finally get to see some recent pics of me!


Pandora you make my heart ache!

Post 17

Pandora

Good! Hey, how do you 'do' dreadlocks anyway?!?


Pandora you make my heart ache!

Post 18

Katsy a.k.a. Esti

take quite a few strands of hair, maybe making them about 1/2 a centimeter across, then plait them very tightly, and then gell the ends to make sure they don't undo, repeat this several times, and eventually you get it!


Pandora you make my heart ache!

Post 19

Pandora

Thanks, but I'm not sure what you mean by plait them? Do you mean roll the hair? Or do you mean braid the hair? True dreadlocks aren't braids...but I'll be hanged if I know what to do! I usually just have one thin braid down the side of my face, or one on either side that I fasten together around the back, allowing them to hang down a bit on the sides.


Pandora you make my heart ache!

Post 20

Katsy a.k.a. Esti

Somewhere there is a very embarrasing picture of me with a few braids, I think I was on a high because I had just come back from a very good party, I think I was only 11 at the time, but it is very embarrasing!

When I say plait I mean divide into 3 and plait.....uh how do I explain? I've now got about 24 in total!


Key: Complain about this post