Silkie - original post 09/26/2004

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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Silkie - original post 09/26/2004

Postby patoco » Sat Jun 10, 2006 12:56 pm

I was a beautiful baby (modest) so i have been told. Content happy,
talked the hind legs off a donkey (no change there) Normal childhood, except i so wanted to be a boy and play soccer. I was a tree climbing soccer playing ripped dress tomboy. Boy did that change sudenley within a week i changed, my body changed to a huge, bloated, stranger. Mum was fast straight to the doctor.(no nonsense mum) He told her to put me on a diet. When she said but she eats like a little sparrow. That was the first time i was called a liar. I was sneeking toffees and crisps the doctor said i must be .

I was given slimming pills (the same pill he gave a woman neighbour)i was watched at school followed like i was going to steal something so i wouldnt eat (i never had money for toffees) this made me feel less than human everyone thought i was a liar.I was still putting on weight getting bigger.I went back to the doctors, Iwas shouted at again i was a liar.the fact that i had no money worried my mum she asked was i stealing. Then she looked at me and said to the Doctor if Dorothy says she isnt eating sweets and crisps she isnt, We left the Doctors never went back.

My nan, she was wonderful she called it puppy fat . The doctor did come one evening oh around 11pm and took the pills from my mum. This is what my mum thought might have caused my legs.

My personality everything altered. I was called names i just hit em Well the size of me i packed a hell of a punch. I would fight anyone that looked at me in a way i ddint like. No i wasnt bullied i suppose id be called the bully but that wouldnt be true i was verbally abused every day i honestly cant remember a day from that time till now when someone hasnt made a comment.I learned to make fun of myself, it doesnt hurt so much when you get the comment in before others do

The hardest thing was i wanted to be a dancer like Ginger Rogers, how can you be a dancer with legs that resemble tree trunks. at 11 years old i was devistated, i think that was something i will always be bitter about thati wasnt able to dance professioanlly. My nan took me in hand she saw the fighting was my way of hiding the pain and tears. My nan was the one that made me feel Good again

She made me aware "its not the packaging thats important but the present inside. Be a decent human being and the genuine people people will see you and not the the legs.

I refused to do PE unless i wore a hockey skirt, I hated swimming because i hated my legs. Yet i was still classed as a greedy lazy girl.
By 15 the weight had gone but to get a pair of jeans on i had to go 4 sizes bigger than i was to get them over my legs knee length boots were all the rage i couldn get them over my foot . But this girl had grown in confidence and nothing stopped me

i went to an old cobbler and he made my boots, knee and thigh length and i wore a the mini . And i had the best time. I danced not on stage but in the clubs i had my fair share of boyfriends, to be honest i was never in.

I married Then i had my son told to stop eating to much weight the problem had become a little worse, ten my scond sone , again the problem was larger, my daughter and wow . but i could live with it. and for years it stayed the same i was treated with water tablets when the swelling got worse infact at one point i got i was diagnosed with beneign intercranial hypertension. this is too much spinal fluir which over flows and put presure on the optic nerves causing blindness. I was so lucky they took fliud out with lumber punctures, put me on steroids, and water tablets. it was a contolled ilness no cure just the meds. but for some reason (i thank my God every day)i didnt go blind and after 2 years it had dissapeared. I came of the steroids very slowly and off the water tablets only using themat times of swelling.

I know now how bad the water tablets are but didnt know i had this back then.

!2 month last feruary i lost my Dad he was in hospital most of the time from chrsitmas week to feb 19th iu was going twice a day running a house worried, my legs got bigger and bigger i hadnt time i had to be there for dad, i got water tablets saw the doctor LOOSE WEIGHT back to the hospital. They got bigger and bigger (possibley the shock and stress over Dad)till they hung over my ankles touching the floor my foot looked like someone had pushes a tennis ball under my skin and they were every shade of purple gross i felt i had been talken over by alienstouch then and they ouzed water..

i had blood test and thyroid tests both ok the doctor said well you just have to live with it (this was 12 months last march)

My daughter has a cat (i think its possessed its ferral) it scratched my leg neer my ankle, i was past feeling anything, my daughter said Mum what that on your foot.

It was water, not blood and it dripped for 24 hours. Back to the doctors finally The doctor said have you heard of lymphoma you have non hodkins lymphoma and i will make appointment for st annes hospice.
Hospice thats where cancer patients go that are not going to get better(ignorance and a little infomation is a frightening thing) i was out of my head with worry a couple of hours later my guardian angel phoned Denise my practioner. She spoke on the phone to me expalined all . One the saturday i went to see her and to organise a treatment plan seeing my legs she said i had stage 3 primary lympheodema had i got time to stay and she started my treatment straght away. I know im lucky in that im getting such wonderful treatment.

More than that the biggest thing for me was AT LAST SOMEONE BELIEVED ME

she She taught me how to do MLD bandage , but more than that Denise gave me my Confidence my self esteem and my spirit back .How? SHE UNDERSTOOD ALL THE HURT AND THE WALL YOU BUILD SO NO ONE SEES THE PAIN THERE COMMENTS CAUSE.

Getting a practioner isnt just about treatment its about actually being believed and understood. Its about all the years that you thought you were paranoid, and that you were just made that shape .being wiped out in a second . I cried not for what i was being told what was wrong with me but with the Total relief that someon at last believed me and understood
Im a different person now, i get tired frustrated, pain even tearful but i never ever get despondent.

I said to Our friend Pat today never again will i be embarassed at my shape my size my legs

No more will i feel im not fit to be seen

Hugsssssssssssssssss and lovesssssssssssssssssssssss SILK XXXXXXXXXXXXX
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