Re: Im new : Please Need Help & Suggestions

May 16, 2004

, my heart just breaks for you. I know that you and the other adults

around you feel you need to focus on your daughter right now and that is

indisputable. However, every time I ride an airplane, we are reminded to put

the face

mask on ourselves first in order to ensure we will be in a position to help

others and I think this is true for you as well. Stress certainly worsens our

disease and you have had more than enough stress to last a lifetime. If you

are to be a continuing tower of strength to your daughter, I think you need to

make time to focus on your illness. You don't mention if you are taking any

medications for your PA. There are a number of things out there now that

greatly

reduce the pain, stiffness and swelling from PA as well as stem the

progression of the disease. I know that a number of these are available in the

UK so it

is a question of getting a proper diagnosis and prescription for one of these

medications. I hope some members from the UK respond to give you a good

sense for what's out there and how you go about getting it given you have

National

Health. Whatever you do, you MUST make time to work on your disease or your

ability to help your daughter seems to be going downhill fast. Yes, your

daughter is exhibiting awesome courage in her daily battle with her disease but

there is only one person on earth with more courage than a sick child and that

is the parent of a sick child. You and your partner battle far more every

moment of the day than most of us will ever know. We can't help you with that,

but there are things out there to help your PA and you must make the time to

find them.

God bless,

Kathy F.

Hi, my names lisa uk, some of you may remember me some time back. i

joined this group just after my daughter was diognosed with npd type

c. at the time i was last on list. she has a life threatening

condition. when i stopped mail from the p a group it was simply

because she was my number 1 concern. just being diognosed and

regressing rapidly.

However, heres me, mum the career and so much pain with pa. it

almost seems impossible that im going down hill so fast. really

could do with the the basic hellos and then i can start to ask

questions.

a little about myself.

i was doignosed approx 18 months ago. had the old skin complaint

since aged 11 { im now 35]. i suddenly developed a rather strange

looking finger... in the mean time my skin had become angry. though

i only suffer knees elbows etc. back pain and neck had been a

complaint since my younger years always put down to a trapped nerve

or locked neck muscle.

my nails became pitted and dis- coloured though strong and grew

rapidly.

during my time of being diognosed my daughter got diognosed with

npc. a life limiting and rare genetic disorder. so 4 me, my

compliant was mild.

Now here i find myself in so much pain . mainly in my hands and now

on treatment .The hands is a new thing, though looking back funny to

think this is were it all started off with my finger.

i know little about the condition, but am now finding it restricting

me and i cant aford to be that way with my daughters needs.

i could really do with the basic " hello and some insight to what i

should know about my condition. and what i can do to avoid these

attacks. diet and self awareness. is this a disabilty should i be

fighting my corner now . i cant stand not being able to suddenly

undo a jar. my mornings r awful. i feel like i havent slept. my

hands swell and i cant move them for at least an hour and my

daughter needs me, she needs me to be a responsable parent and find

all that helps me , help her . please help i just dont know what to

expext and what to do to help our family. my poor partner has so

much to contend with and i feel like a fake compared to our girlie,

as she battles every day. My family dont seem to realise thati feel

so rough alot of the time and tell me i need to get out more .... im

scared to walk to far incase my back locks up. .... didnt mean to

whoffle on but ive found myself in this awful situation and so need

to do the best by myself so can hand on heart help my daughter .

kind regards lee.

ps any links on diet would b a great help my pa nurse keeps telling

me i should read into it

May 17, 2004

Hi ,

I'm not too sure if I can help in any way but all I can do is tell you a

little about the treatment I get for this and maybe it can at least let you know

that there should be some drug out there that can help you. I'm a Scot so I

would imagine you would go about things roughly the same way.

I don't know if you have already done any of this but anyway....... First

thing would be to go to your GP and ask him to refer you to a Rheumatologist.

I would imagine your nearest hospital would have a Rheum clinic. Up here the

waiting list for that would be 3/4 months. He will have a look at any

affected joints and may or may not get X-rays done. He would probably start you

on

an anti-inflammatory right away. With me it took a few tries before we found

one that worked well enough. Actually, I'm just thinking, your GP should be

able to get you on to the anti-inflams so ask him first. The rheumy will

hopefully try you on one of the second level drugs and arrange to see you again.

From then on, if he is anything like my Rheumy, he will look after you well.

When you say " Fighting my corner " I take it you mean Disability allowance,

etc. From what you say you should definitely be getting something. Apply for

Disability Living Allowance. Its in two parts. One is to help you around the

home. If you have problems making a meal, for example, because you cannot open

jars or use a tin opener, this is where the first part would come in to

play. The second part is mobility. If you cannot walk far without

discomfort/pain

you are paid an allowance for that too. The Dept of Work and Pensions send

out the necessary forms. Don't try and fill them out yourself. Get someone who

is used to filling out these forms to help. The DWP will also look for a

report from your GP and/or Rheumy and that will be followed up by a visit from

a

doctor (Their choice)

Sorry this has gone on a bit. Maybe you already know all of this and it is

probably not too clear anyway. I'm just trying to remember it all off of the

top of my head. If you need me to explain anything better let me know. I know

you will be more concerned for your daughter than yourself but maybe if you

can eventually feel a bit better within yourself, hopefully you will be an

even greater help to her and your partner then you already are.

Take care,

May 18, 2004

Dear , many thanks for taking the trouble to email me . i am already

under a hospital, had the Xray and bone scan etc thats how i was diagnosed.

i now am on meds I've been put on salazopyrin {think thats how its spelt}.

Disability has been mentioned to me but ive not made my mind up to weather i

should go for it Probably because " who am i to complian " when my daughter

struggles a great deal more . my daughters o.t. is the one that said i

should possibly be looking into adult o.t etc for myself, i laughed and told

her not to be daft..

As far as preparing a meal opening jars etc has become a problem looking

after my daughter requires me to lift her and feed her through a gastro

tummy button that can be so fiddly with sore and swallon fingers. its these

things that have suddenly become a problem and made me realise im struggling

i couldnt get her jeans onthe other day that scared me to think it will

restrict me in helping her . anyway thanks again to those of you that

replied i didnt mean to spill my heart to you all i was just so frustrated

really we are all ok my daughters doing grand she has a fantastic school

were she swims horse rides etc every week. look forward to chatting with

some off you take care kind regards lisa

-- Re: [ ] Im new : Please Need Help & Suggestions

Hi ,

I'm not too sure if I can help in any way but all I can do is tell you a

little about the treatment I get for this and maybe it can at least let you

know

that there should be some drug out there that can help you. I'm a Scot so I

would imagine you would go about things roughly the same way.

I don't know if you have already done any of this but anyway....... First

thing would be to go to your GP and ask him to refer you to a

Rheumatologist.

I would imagine your nearest hospital would have a Rheum clinic. Up here

the

waiting list for that would be 3/4 months. He will have a look at any

affected joints and may or may not get X-rays done. He would probably start

you on

an anti-inflammatory right away. With me it took a few tries before we

found

one that worked well enough. Actually, I'm just thinking, your GP should be

able to get you on to the anti-inflams so ask him first. The rheumy will

hopefully try you on one of the second level drugs and arrange to see you

again.

From then on, if he is anything like my Rheumy, he will look after you well

When you say " Fighting my corner " I take it you mean Disability allowance,

etc. From what you say you should definitely be getting something. Apply

for

Disability Living Allowance. Its in two parts. One is to help you around

the

home. If you have problems making a meal, for example, because you cannot

open

jars or use a tin opener, this is where the first part would come in to

play. The second part is mobility. If you cannot walk far without

discomfort/pain

you are paid an allowance for that too. The Dept of Work and Pensions send

out the necessary forms. Don't try and fill them out yourself. Get someone

who

is used to filling out these forms to help. The DWP will also look for a

report from your GP and/or Rheumy and that will be followed up by a visit

from a

doctor (Their choice)

Sorry this has gone on a bit. Maybe you already know all of this and it is

probably not too clear anyway. I'm just trying to remember it all off of

the

top of my head. If you need me to explain anything better let me know. I

know

you will be more concerned for your daughter than yourself but maybe if you

can eventually feel a bit better within yourself, hopefully you will be an

even greater help to her and your partner then you already are.

Take care,

June 18, 2004

Kathy , hi its lisa uk you may remember replying to me?. im having trouble

following messages could you help. ive now adjusted my message settings

but cant find my added messages to the list to see if i have replies .

-- Re: [ ] Im new : Please Need Help & Suggestions

, my heart just breaks for you. I know that you and the other adults

around you feel you need to focus on your daughter right now and that is

indisputable. However, every time I ride an airplane, we are reminded to

put the face

mask on ourselves first in order to ensure we will be in a position to help

others and I think this is true for you as well. Stress certainly worsens

our

disease and you have had more than enough stress to last a lifetime. If you

are to be a continuing tower of strength to your daughter, I think you need

to

make time to focus on your illness. You don't mention if you are taking any

medications for your PA. There are a number of things out there now that

greatly

reduce the pain, stiffness and swelling from PA as well as stem the

progression of the disease. I know that a number of these are available in

the UK so it

is a question of getting a proper diagnosis and prescription for one of

these

medications. I hope some members from the UK respond to give you a good

sense for what's out there and how you go about getting it given you have

National

Health. Whatever you do, you MUST make time to work on your disease or your

ability to help your daughter seems to be going downhill fast. Yes, your

daughter is exhibiting awesome courage in her daily battle with her disease

but

there is only one person on earth with more courage than a sick child and

that

is the parent of a sick child. You and your partner battle far more every

moment of the day than most of us will ever know. We can't help you with

that,