Re: perceptions

[Guest guest]

Hi there Elaina,

I shure know what you mean about the pain. I don't get alot of pain in my feet.

But my legs hurt on and off all day. Some times the pain i get is so intence I

throw up right in the spot I'mm standing in or sitting in.

Tt's terible. Unfortanetly my family is not very supportive. My sister has been

but none of the rest of my family. My mother being the top of that list. She can

be really cruel and says terrible things. And I don't understand why as she has

nueropathy from diabietes. She doesn't have CMT or she doesn't think she has it.

She refused to be tested after I found out we found out my mother's dad had it.

And that's where we think it came from.

He never knew, he passed away some time ago. But they took paper tests with his

blood types or what ever they use to test it against my blood. lol I'm not sure

how they do that. But that's where it came from. Other members of my family are

now getting tests done and all.

But I'm the one that has the severe pain and all the deformities like my feet

and claw hands. I have very very thin lower legs it looks weird and funny shaped

shins, I also have very very thin lower arms with claw hands. It's freaky

looking but when people stare at me I just say " what you never seen a cross

between a bird and a human before " and they normally laugh.

Most of the time I try to think positive about it. But some days I am in so much

pain and ever thing gets to me and I want to give up. The pain can be so

unberable some days, know what I mean? Any ways, I'm writting a book here lol

thanks again.

love

Donna.

[Guest guest]

Hi Elaina,

I know what you are talking about and completely understand what you mean.

Reema

[Guest guest]

Elaina,

Yes, it is just like that...only us knows where is the pain ...and

the fatigue... no one feels the way we feel it.

Two months ago a lady came into my flat to talk to me, it was

regarding a new benefit I did applied to. This benefit suppose to

help people with disability and also the people over 60's. A benefit to help us

to live more independent.

When the lady came and looked at me, straight way she said: " Wow,

is that you, Joana " ? She was so surprise that was me the lady who applied for

the benefit. She said, you are so young...lovely flat you have, etc... I told

her..I am 51 years old.

" Well, you certainly do not look like 51 " ...How nice... I said:

" Thank you " .

Surely I told her about my syndrome and all my limitations, showed

her the letter from my doctors, and others benefits I do received,

etc.

Well, again, she could not see very well unfortunately.

Today I did received another letter from the association saying that

my circumstances received a great deal of sympathy but they could

not cater for all the people because of the limited resources, etc.

Never mind, I thought... let them help the ones that are more in

need than me...what can you do?

They do say their criteria in order to select the people...but many

times people do not see the problem we have, they just see perhaps if we are in

a wheel chair, or with the braces on, walking with sticks etc...etc. That is the

way things are.

Joana

[Guest guest]

Exactly Joana,

I just had a similar experience this past Friday when I had to go to an

attorney's office for the first time for my disability claim. Looking at me,

I'm very tall, thin, and (don't mind this) not half bad to look at. Anyway, like

you said, I had no braces on and was able to walk in with a slight limp. I had

all my paperwork, not knowing exactly what to bring, but felt like he was

thinking, " What is she trying to pull off?! " ...I sat down and starting telling

him what he wanted to know and then at the same time the " big tears " started

flowing like a waterfall and I couldn't stop. Then

he seemed to stop, sit up, and pay more attention. I told myself I wasn't going

to cry before I went in there, because I've had that happen at dr.'s offices,

because they don't understand how bad it feels and when you have to explain in

detail and replay the things you'd rather not repeat again in your mind, that's

when I start to cry. What had got me the most, which I kind of knew was going

to happen, is, in order to collect SSDI, I can't work.

I told him if I didn't work, I'd be homeless in 2 months and was caught between

a rock and a hard place. He knew that and said I would have no problems getting

Medicare and disability, BUT what to do? He said maybe I could get a job off

the books. NOW, as I went back to work today, I had bought some new sneakers 2

days ago, I am a bartender and am on my feet constantly (mostly only 4 hrs tops

though)...of course this being the holiday weekend, my shift is alot more to

me..adding 4 more hours.

I got home last night and went to bed. When I woke up, I had kept my socks on

of course, and took a shower, I looked at my left big toe. There was a blister

which had popped on the outer side of my toe and a good 1/2 inch deep of half

the top of my toe was completely OFF..and I didn't feel a thing!! NOW, I had

to wrap and supersonically tie off my toe in order to go to work tonight or else

I'm sure I'd be fired being a holiday. (actually, probably not...I did show it

to one of my co-workers when all what said and done, and all she said was " Bless

your heart " ...What is she going to say.

I could pour a bottle of acid on it now and wouldn't feel a thing. This is also

the first time I'm afraid of an open wound. I hear

horror stories of when people with diabetes, etc. lose their limbs due to open

wounds.

Now I forget what I started to say,sorry this was so long, but the moral to the

story is " We're damned if we do (wait, what did WE do?)

and damned if we don't!! (wait, it's what the system DONT!!)...O.K., now I'm

done and wish me luck with tomorrow. My fireworks will be going off in my

feet!! lol

By the way, GRETCHEN!!!..........what should I do about wrapping it? Right now

I'm letting as much air as I can get to it. It stopped bleeding. Hope I didn't

put anyone to sleep with this story and welcome to the newcomers. Have a good

night to all.

[Guest guest]

joana,

i know what you mean. i have been trying to get help for over a year. in less

then three months i have to be out of my apt. and ive called every number i can

find to get help. with anything. my parents are suporting me now. pay for my

apt.. so on and so on. well they cant do it no more.. and no one will help.. and

i have called almost every place i can think of to call.. and because what.. im

still able to walk.. i dont need the help? or what? i dont get it.. but when i

see people who have such small probs.. who just dont whant to try get help

around this area.. i get sooo mad.

i have been fighting ssi forever too.. i finaly got binder and binder as my

lawers.. there gona see if they can get me some ssi.. cause i cant work.. ive

even told people i called come look at my feet.. my bent up messed up legs.. my

funny looking hands.. tell me i cant have help.. ahg.. its sooo frustrating.. i

know what you mean totaly..

good luck to you hon. hope you can get some help.. bless your heart.

take care

donna.

[Guest guest]

Joana,

It is a shame that people go on looks sometimes. I hate to admit it but I

even have relatives who are on disability that really don't need it. I've known

many people over the years who get disability and one even admitted to me

that if you just go to a doctor and act dumb you can get it. However, the

people

that really need it have to fight and fight to get help. The system sure can

be messed up sometimes.

Elaina.

[Guest guest]

,

I feel so bad for you. I hope you heal quickly. It's so awful the way the

system works sometimes. It just makes me want to go to the " powers that be " in

Washington and tell them how to run the government.

I'm so sorry you have to be on your feet for so long. I hope you have good

sneakers and orthotics. Gosh I wish I had more advice except soaking,

massaging etc.

Best wishes to you!

Elaina.

[Guest guest]

The most frustrating part of trying to get help is seeing people who are capable

of getting a job that get SSI and SSD almost instantly. I can't seem to get

Medicaid they tell me go to work, yet when I go to job force they laugh at me

and say just what do you think you can do?

Why is it the honest people who need the help can't get it? I was very upset to

learn that the migrant farm workers that come up from Mexico get Medicaid for

there children while they are working here every summer. I wonder if I go to

Mexico if they would give me there Medicaid? I had to vent a little I have just

been turned down again

by Medicaid, and again told to get a job to pay my medical bills. I owe more

than our income is for 5 years. GTRRRRR any way have a great fourth!!!

Cathleen

[Guest guest]

Cathleen,

I surely do feel for you and your situation. It's all political but without

saying to much and opening a new can of worms our country needs to worry about

it's own citizens and their needs. I'm not saying we shouldn't be helping

other countries but I am saying that if our country cannot give help to it's own

then how can it give help to others, especially those that come here

illegally? There was a time when our country could afford to take in the

oppressed

and poor from other countries. I think those days are gone for right now. We

are not the super power we used to be. And it is awful when someone can go to a

doctor and act like they don't know who the president is or what year it is or

how to get to a store and get SSI and SSD, and they are faking it all! I am

sorry you were turned down again. Don't give up though. Keep fighting. I

am sorry but the situation of our country right now is a very passionate

subject for me right now. Good luck to you.

Elaina.

[Guest guest]

Thanks for your nice words Joana,

It's very difficult to get help from the government here in the US.

Unfortunately, all to often we see people who cheat the system because they

don't want to work. They just want free handouts. Medicare and Medicaid fraud

is a daily occurance. There are many many people who do need help and many

people who want to get off government help and create a better life for

themselves and their families. But for the ones who truly need the help it is a

battle to get help. And the help you do get is minimal as far as the monetary

amount. So many have had folders filled with doctor reports and testing reports

and even employer reports and it's still not enough. I think for the most part

people want to work. It's not that we like the idea of giving up our jobs, jobs

that we love and enjoy (for some). It's that we can no longer physically do it.

But the system will make you try any other job. Full time, part time work for up

to years just to see if there is anything else you can do. They make you feel

like you are lying about your symptoms. It's like they want to prove you wrong,

try to prove you are faking everything. I remember as a child knowing people on

disability who needed it, deserved it. But over the years I started seeing

people, friends of mine, okay I'll admit it..lazy ones who just didn't want to

work and who thought this world owed them someting. These kids were getting

disability because they would tell doctors they had a hard childhood and it

messed them up in the head. Okay maybe so but it never stopped them from

hanging out all night with friends doing

nothing and collecting a check every month. It never really bothered me until I

watched my mother fight for disability with a severe back injury. They sent her

to work at 4 jobs where she was on her feet all day, bending, kneeling, etc. She

was denied 4 times while these kids sat around playing video games and drinking

and collected a $600 check every month. That's when I knew our way of doing

things is really messed up. I think that's part of the reason I won't

try for disability right now. First I am stubborn and think I am just too young

but another part of me says I don't want it because I can only hope someone

worse off than me will get it in my place. I will try for help when I am at the

point where I can no longer move. Sure I've thought about it because every

morning I feel awful but I can manage a little longer. I'm rambling now...lol.

Thanks for letting me vent a little. I'll be in touch this week.

Elaina.

[Guest guest]

HELLO MY DEAR FRIEND ELAINA,

So nice to hear from you...I hope you are getting better and better

every single day! Yes, Elaina, that is the way! Unfortunatelly we have to fight

so much for our rights here...unbelievable. I am a great fighter in many ways,

always searching for things and trying also to provide help to the ones less

fortunate. It is my nature, but I must confess to you that is not always easy to

fight. Sometimes it is a real battle!

Anyway, I will keep in touch to check your progress with your foot!

Elaina, your foot is great, blessed and it is already cured! All is well!

Hugs from Your little friend,

Joana

[Guest guest]

Dear Donna,

Many thanks for your email. Hope all is well with you! I am so sorry to hear all

this. But yes, it is like that most of all times Donna. Where do you live? Are

you in UK or USA?

Is there any social worker who could help you with your situation?

Anyone... type of organization that could provide you some help and

support or information where to go about it? What about the CMT association in

USA?If you are in USA, surely must be some type of support there somehow.

Here, in our site of the , have you posted anything regarding

help with benefits?

I though that maybe a doctor could give you a letter stating all

those limitations of yours and then you could send it to your local

Health Security. You can not be like that without a help and

support from the government. Each country is different and I have diferent

rules. I have no idea if in USA is like here in UK.

A doctor letter can always helps a lot here in UK, has to be from

your own GP or consultant, if you have one. Please, you must keep the faith and

fight always. DO NOT GIVE UP!!!!! You are not alone, never.

Please, let me know where you are, if you are in UK , I am here

too, and could give you some more ideas. I would help you more , but need to

know where you live. Nice to hear from you Donna. Take care and stay Beautiful!

Joana

[Guest guest]

Dear ,

Please, let me know how you are now? Have you seeing a good doctor about this?

You need a professional help there with your feet! Oh, dear, so much for one

day.I can imagine what you have been through, but I was talking to Donna

regarding this...benefits! Keep the faith and fight , you must get some

help for sure. Are you in USA?

Everyone has the right to be sick, what about sickness benefit? If

you are on sickness benefit, you can not work of course, but the

Social Security has to pay for you to be at home. To rest and get

better. They also have to pay your rent, Housing benefit too.

I do not undertand why you are not receiving any benefit yet.

You need to get better in yourself and also need to think for your

future.

How old are you ? What type of CMT have you got? I think you

need to have a proper benefit, a permanent one and then if you

think you can work beside voluntarily, if that is what you want to,

fine!

But that would be a matter of your choice, and not an obligation!

The right benefit would give you all the support you need, improve

the quality of your life and then you would not have this stress

. If you have the syndrome, you got right to have benefits like all of

us!!!!!!! Please, let me know how you are .

Another thing, crying is part of life ... we all feel sometimes low,

frustrating about so many things, and crying is good for you. No need

to be ashamed of crying, I do cry a lot too...we sometimes can not

take it so much and crying is like a escape, the body saying enough

is enough! Tomorrow you will be laughing, believe it! Anyway, maybe now it is me

who is talking a lot here..hehehe! Take care of yourself and Stay Beautiful

Always!

Joana

[Guest guest]

joana,

thanks for the nice words. i am in the usa. i have tryed getting help from my

county it's hope less with them i have a note from my neuro that states i can no

longer work due to CMT. i sent it to a lawyer who is now working on getting me

SSI. they are very good too. never lost a case ever. so i have that going for

me.. but that's about all. as for this state and its counties.. hope less. i

have taken the same note to them and said please help me. i get state insurance

for me and my kids. but thats about all. it's crazy this county. ill keep

looking for help though. there has got to be some help out there. thanks again.

take care.

donna

[Guest guest]

My Dear Friend Elaina,

Your email really shocked me ...I never though that it was like that

in USA, never...I am so sorry to hear all that sad history, about your

mom...God, this is awful. Now, a long time ago, a friend of mine told me: "

Joana , go to see your doctor and tell him that you can not longer continuing

work like that " carrying this heavy troley ... I though...you must be

crazy...why?

She said, you do have a disability and you work far too much...and

this is to heavy for you...can't you see it? Well, I was a jewellery designer

for many years (13 years) and sell my art work at different places like Art

centre, Theatre, Exhibition Centre, Hospitals, etc...and in that time I used to

carry a lots of weight ..sometimes 20 to 25 kilos...it was a lot for me, I am

very tiny person, believe me!

So, I used to love to make my jewellery and sell it, received so

many complements, etc..but it was true...too hard job for me.

The things was that... In my mind I was not a disabled person, I never accepted

that, I used to say , yes,I have some problems , but never say the word

disabled..never!

One day, I got the courage to ring the disability agency and told

then my history...and they sent me a lots of papers to fill up and I

do remember so well, those papers was by my window seal for more

than 6 months.

One day, I decided to open the enveloppe and see what was inside...

It was a picture of a wheel chair, scooters, braces pictures, and so

many others papers to fill for that benefit. I did cry like a baby,

and though, what is this? I am not disabled, I can work, and I am

not going to fill it up those papers.

Until one day, when my friend came home and started to explain to me

one thing: Please, do it now, you do know , you have this right...you have the

disability ...things are changing at all times with the law and rules for

benefits. They are more and more people asking for help...it would be a day that

you may need it, and then it would be too late to get it...or maybe impossible!

Well, I decided to go for it. Letter from my GP and so many others

things led me to where I am now. I got my benefits, housing

benefits, free buses, taxi trips when I need it (10 trips a

month)...My life is much better now...and if I want to work, I can,

but surely they would cut some of those benefits!!! Surely, now it is much

difficult to get those help and support.

London is getting mad, people from all over the world want to come

here and stay here. Seems that many people got something wrong with

them...I do not want to judge anyone here, but I just do not know

how this govern can cope with so many people asking for help.

Surely that charity should starts at home. Here is the same, they

help everyone,even the one who just arrived from the east Europe and

never paid any tax here...and yet, you see the ones who born here, paying tax

one life time ...the pensioners waiting to be seen by doctors, waiting to have

an operation at the hospital...no bed and no money ...those people are like

beggers, so sad! What else can I say it...

I have to say, I did not born here, but I did contribute for a while

and they always been so helpful to me. I am British too, I know, but

you see... I do feel for the British with my heart. I think it is

not fair all this situation...you have to be honest and just.

Elaina, I do know , you are much younger than me...but please, try

to see over there what you can get for yourself now. Things in time does not get

easier, because the amount of people in this world and the rules change too. You

really must think not just for now..but think for your future Elaina. Remember,

what happen to your mom...That is not right, it is not human at all! So sad to

hear this.

Look after yourself and, We will be in touch again. Stay Beautiful.

Joana

[Guest guest]

Thank you so much for the words of encouragement. I always heard charity begins

at home - too bad our government don't know that.

Cathleen

[Guest guest]

Donna,

I am here hoping the best for you...Have faith and never give up, it

seems that you are now in good hands! Good Luck!

Hugs

Joana

[Guest guest]

aint that the truth.. wish the government knew that.. charity starts at home..

i agree with you..

donna.

Lots of love from donnas crazy nut house. xoxo

Re: perceptions

Thank you so much for the words of encouragement. I always heard charity

begins at home - too bad our government don't know that.

Cathleen

[Guest guest]

joana,

thanks so much for the kind words. some times i do feel like giving up. i dont

know what im gona do some days. im so glad i have friends like you to hold my

hand through it.. thanks again joana. im glad we can talk.

thanks again,

donna.