Re: Welcome to my world (warning - its a long write up!)

January 2, 2006

-

I completely understand your world. The week before Thanksgiving, my mother

had me come up to NJ early so I could see a specialist in NYC (I live in SC)-

it was the first sign that she had come to believe that I had PA as bad as her

father had had it. During that week of being up in the Northeast early, my wife

had been contacted by some bill collectors. Basically, the financial issues

that had built up by my not being able to work had finally come to her

attention, despite my years of effort in trying to hide it all. The depression

hit me hard. I contemplated hurting myself that week, but somehow found the

strength to keep going. In the meantime, my in-laws decided to call a family

" intervention " of sorts to discuss my health- mental and physical, and our

finances. Despite this opportunity I was still frozen by the inexplicable

depths of depression. I skated through the conversation as best as I could. We

did our Thanksgiving, returned to SC and went on with life. The

Tuesday after Thanksgiving weekend, I went into the hospital for major

bilateral TMJ surgery... I came out to an explanation that what they found was

worse than the had expected and that they needed to remove the Spectral Process

from either side of my jaw- the muscles had hardened due to the PA. While

recouperating, my wife finally uncovered the full magnatude of our financial

failure and was extremely angry and disappointed with me. I had hit rock

bottom.... I felt the walls caving in and nowhere to turn to- nowhere to run to.

I had applied for disability and had been rejected all the way up to the review

board level in Falls Church, VA. I had no prospects of work. I was in constant

pain. And no one seemed to know what the hell to do for it. So.... Maybe I

could make use of all the pain meds. After realizing that taking my life

wouldn't be anything but more trouble for my family, I told my wife what I had

done.... After two weeks in the mental ward, I was released to my

parents to attempt to put my life back together. Freshly filed in a Chapter 7

bankruptcy and not able to live with my wife and children until I can prove

myself healthy and fruitful again, I am at times so alone in this world. I wish

there was someway people could understand just how painful all this is.

Anyway.... That's my story...

January 2, 2006

Hi ,

I'm sorry. I do understand and did hear you. You didn't mention

which meds you take or ask for advice but I always think of Fran's

good advice to try and find a good pain clinic.

Sure sounds as if you have more than one thing going on. I take an

antidepressant which supposedly helps my pain as well as stabalizing

my mood. I sure would think about it. Also hope you can find a good

doc who would be able to coordinate all your meds. Talking to a

pharmacist can be really helpful too..they know a lot of about side

effects. Am wondering if you are taking narcotics and they are

causing some troubles for you.

I'll say some prayers...and hang in..

best wishes,

marti

>

> Welcome to my world…..

>

> My List Of Symptoms

>

> Sever Pain in lower back.

>

> Pelvic pain.

>

> All over pain joint pain esp. knees, ankles and wrists. If I dose

in

> the chair my joints ache with not being mobile, yet if I walk for

> more than 15-20 mins they ache then as well.

>

> All over pain e.g. muscles & ligaments.

>

> Locking Joints. Especially if I've sat to long or when I've just

> woke up. Hurts like hell.

>

> Popping joints. Worse when the pain is especially bad.

>

> Keep dropping stuff e.g. cups, glasses – anything in my hands.

>

> Bad night sweats. (Wake up soaked)

>

> Feel weak & lethargic, chronic fatigue all the time. So tired.

>

> Tingling, worse below the waist but has started to be all over

body,

> face included. Worse at night. When I awake it feels like I'm

> tingling all over. Also most times it feels like I have been

punched

> in the top of my legs and the top of both arms, only way to

describe

> this is like a `dead arm or leg'.

>

> Sore eyes – light sensitive and feel dry and gritty, they run when

I

> am outside.

>

> Real bad mood swings at the flick of a hat. Bad tempered. No

> patience. Depressed. Angry. Embarrassed. No self esteem. No

> confidence. I'm not the person I used to be. A longing for my old

> life back. So frustrated and sad at not being able to do the things

> I would like and used to do. No patience, I can not wait in a cue

> nor wait for a long conversation. It's real hard getting people to

> understand how my pain is affecting me. I feel isolated and have no

> life. Feel grief and a longing for my old life and the old me.

>

> Confusion.

>

> Short term memory loss – walk into a room and forget what I have

> gone in for. Forget things I have just said or done. Repeat myself

a

> lot.

>

> Flash backs of dreams I have had e.g. I could be thinking of

> something and for no reason I get an image of a dream I could have

> had years before – confusing!

>

> Palpitations.

>

> Rapid heart beat.

>

> Short of breath

> .

> Feeling sick, bloated, lots of trapped wind.

>

> NO sex drive.

>

> My world

>

> My world consists of constant pain. I have three heat pads, I call

> them my friends and I can not see life without them at this moment

> in time. I can not sit for more than 20 mins because of the pain. I

> have to walk around, then I can not walk for more than 20 mins and

> then I have to sit down because of the pain. I have approx 15-20

hot

> baths through out the day and night to ease my pain, heat is the

> only relief I get from it. My day consists of hot baths, swallowing

> pills and heating my heat pads up. I long for a fitful sleep, a

> sleep where I can escape this pain. I very rarely have a `good'

> sleep; I seem to go into no man's land –neither asleep nor awake,

> somewhere in between. I can not comfortably lie down, I get approx

3

> hours sleep max before the pain and tingling/numbness wakes me.

When

> I awake the pain is worse n what ever side I am lying on, for

> example – if I am lying on my back when I awake, my back pain is

> worse and I have a tingling sensation all over which is pretty

> scary. If awake and I am on my side, my hip hurts so bad and I feel

> like I have been punched in the top of my leg and top of my arm,

> sometimes my joints have locked in my ankles and knees and it is so

> painful to get them to move again. I usually take more pain killers

> before I get out of bed, wait for them to `kick in' before getting

> up and moving about. Then I run a hot bath and soak myself for

> approx 10-15 mins to ease the pain and release my stiff joints.

> My pain is personal. There was a time in my life where I would

curse

> or moan about a headache that was as painful as it got for me. Now

I

> wish for just a head ache. My pain is constant, it never lets up,

it

> is all encompassing making me unable to cope with `normal' day to

> day life. The loneliness is also hard to bear, even when people are

> around me I feel they are doing things internally, but are not

> really there for me and I know it must be hard for them to

> understand how bad it is, I know that they in turn get frustrated

> for not being to help or ease this pain and change my life.

> I am wrapped up in pain I live, think and breathe pain. It is hard

> getting others to understand, so much so that I have giving up

> trying. Apart from looking tired I otherwise `look ok' so how can

> people understand how I feel physically or emotionally for that

> matter? I sometimes hope this is all a bad dream, that one day I

> will get up and have my hectic life back, god how I hope…

> The emotional side of all this is just as bad as the physical pain.

> Because I look ok apart from looking tired, I get `the `look' of

> people. I know they don't believe me, many have said so. A Doctor

> for the Department of Work and Pensions has just declared me `fit

> for work'. The report was a joke and yes I am appealing with help

of

> a Solicitor because I really don't have the energy to do it alone.

> Jesus, how his report knocked me, it made me ask `what is the point

> in my life?' That man never listened, he just didn't listen. I DO

> NOT believe in suicide, but I do understand when people say they

> reached a point where Suicide was the only option they were left

> with, god how I understand.

>

> I wish that Doctor had listened to me, instead of just making

> assumptions on how I looked and assuming things about me, if a

> Doctor does not listen then what hope have I got in getting better

> or in ever getting help? How can I re-educate myself to cope when

> people are denying there is anything the matter with me? How can I

> begin a road to recovery? There is a very small part of me that has

> faith that things will change, it is a very small part of me, but

it

> is the only thing that is keeping me alive at this moment in time.

> It frightens me to think that I will be in this place, in this

> condition in twenty years time; I am frightened that my faith in

> getting help or improving will leave me.

> I feel like everything around me is moving on and I am stuck. Being

> in constant pain makes me moody and irritable. I have very little

> patience with anything or anyone. I used to be so laid back and

able

> to cope with just about anything. I brought my two children up on

my

> own since they were very small (they are now almost 18 & 17) and

> worked to support us, and I made a good job of it. So when people

> think I am pulling a fast one, don't they think I would have done

it

> years ago when I would not have been scrutinized! I feel my body is

> my prison and my mind can't escape the torture. I feel on rock

> bottom emotionally and have been diagnosed with (and I quote) `mild

> depression'! That is a joke too; I told that Doctor everything I am

> saying here, even the thoughts of Suicide yet its `mild

depression'.

> I can not see the point in an anti- depression pill because I know

> what is causing me to feel like this, I would be just treating yet

> another symptom NOT the CAUSE, so how many pills do I have to pop!

> This condition, disease, whatever I want to call it does not just

> affect me; there is a whole bigger picture of it. My family and

> friends have all been affected by this too. It has been like a

> ripple in a pond. The relationship with my daughter broke down that

> much that she now lives with her grandparents. I not only feel

> guilty about this, so does my daughter. My parents now have to be

> surrogate parents again for their grand daughter when they should

be

> enjoying there elder years. All those years I managed as a single

> parent and I feel I have fucked up now, so yes, guilt is upon me. I

> would love to be able to help me daughter get ready for a night on

> the town, do her hair and make up, go for a night out with her, do

> all the things I hoped we could do together when she reached

> eighteen, and I miss doing those things even though I have not

> actually done them! But I long for them; I crave those things as

> much as I used to crave chocolate before a period.

> My parents feel helpless. It's not only hard for my children to see

> me crying in pain but it is also hard for my parents. They help me

> by doing shopping and housework, this makes me feel guilty and

> embarrassed and a whole lot of feelings as it should be me helping

> them at there time of life. Only the closest of friends try to

> understand, most have long gone and those that are left mostly

avoid

> me. Who can blame them? The fun loving, energetic person they once

> new is long gone and it's embarrassing for not only me but those ex

> friends when I try to explain what's happening to me but looking

ok!

> My pain has taken over my life, sometimes I try to ignore it,

> thinking that it will go away. I try to push myself then suffer

> those actions a few hours later. The pain wins every time. I have

> tried to analyse my pain, tried to understand `why' me why so much

> pain, what's causing it? I go around in circles with it. I have

even

> wondered if someone has a voodoo doll of me and is twisting it and

> sticking pins in it. Am I mental? Nope, just looking for answers so

> I can find cure! I feel like I have turned in on myself. I have no

> quality of life; I have a very sad existence that no one

> understands. My life consists of taking pills and having hot baths.

> Gone are the days when I was excited for a night out socialising,

my

> body hurts and I really don't have the effort to get ready. I

> wouldn't be able to stand waiting for a drink or a seat and I

> wouldn't be able to sit long enough to enjoy it, I would have

> difficulty following a long conversation and I would still be in

> pain, just in a different environment, so why bother. Gone are the

> days being able to sit long enough to build a web site or surfing

> the internet, it hurts my back real bad to site in computer chair.

> Apart from the pain I can't afford it money wise. Gone are the

days

> of having any sort of hobby or life. I used to sew for hours on

end.

> I loved to do needlework, I used to design my own patterns then sew

> them for friends and family, they were beautiful presents for them

> for birthdays, anniversaries etc. Now I can not sit long enough

> because of pain, it also hurts my hands to hold a needle long

enough

> to do but a few stitches, they start to cramp and stiffen. I used

to

> bake, but because of my hands stiffening, cramping & hurting, that

> is long gone! It was something I used to enjoy, I loved making

bread

> and pastries – so did my family! Gone are the days of hiking in the

> countryside and the cheviots, god how I would love to be able to

> walk to the top of Simonside and feel the wind on my face and in my

> hair, my heart pumping as I look out over the valleys. Even

holding

> a book is a problem for a period of time, holding my consentration

> is just as bad! So the life I knew is gone, it is no more. I live

in

> hope at this moment in time that just a small part of it will

> return, this hope is what is keeping me alive at this moment in

> time. My pain envelopes me, I am smothered by it. It feels like

> there is a fight going on in my body that I have no control over,

> the pain controls me I do not control the pain. Many people wish

for

> more money, a holiday or new car, I wish for my hectic life back,

to

> be pain free or at least be able to have control over it so I can

> get a life and get a job I am sure confidence and self worth will

> follow, and then I can learn to adapt to my changed life. I wish I

> could clean my house the way I used to, only a woman can understand

> this. I wish many things and none are to do with money, just simple

> things that I used to take for granted. It would be great for

people

> to try to understand how bad my life is, to try to imagine what its

> like being in MY world – No Man's land of neither being asleep or

> awake and in constant pain. Doctors are keen to prescribe me new

> pills but are quick to get me out and the next patient in. I begin

> to tell them how I feel then they ask a question about something

> else or dismiss what I have just said. How dare they! This is real,

> and they should take the time. Sometimes it feels like I am

dreaming

> when I see Doctors, but the pain erupts and I know I am awake,

words

> are coming out but nothing is heard.

> I want my busy, hectic life back. I want to go to work, to save up

> and go on holiday. I want a night out dancing. I want the

> independence and self worth back that only work can give me. God

how

> I want my life back. I am so sick of feeling like this, I feel

> inadequate as a mother, daughter, lover and friend.

> I hope this helps you understand how my life is.

> Roseby

>

January 3, 2006

In a message dated 1/3/2006 6:18:12 A.M. Eastern Standard Time,

sportslinq@... writes:

.. I had hit rock bottom.... I felt the walls caving in and nowhere to turn

to- nowhere to run to. I had applied for disability and had been rejected

all the way up to the review board level in Falls Church, VA. I had no

prospects of work. I was in constant pain.

I am so sorry to hear your story...maybe you could call the Psoriatic

Arthritis Foundation and share your story with them. They have some disability

attorneys on call that can help and may have access to some other social

services that might be able to help you. It's a fresh new year and I hope it

will

be a better one:-)

January 3, 2006

Hi Lawrence,

What a sad and difficult time you've been through, so

much pain and frustration. I'll be praying that you'll

be able to find some relief from your challenges.

warm blessings,

jane

--- Lawrence Lichtenfeld <sportslinq@...> wrote:

> -

> I completely understand your world. The week

> before Thanksgiving, my mother had me come up to NJ

> early so I could see a specialist in NYC (I live in

> SC)- it was the first sign that she had come to

> believe that I had PA as bad as her father had had

> it. During that week of being up in the Northeast

> early, my wife had been contacted by some bill

> collectors. Basically, the financial issues that

> had built up by my not being able to work had

> finally come to her attention, despite my years of

> effort in trying to hide it all. The depression hit

> me hard. I contemplated hurting myself that week,

> but somehow found the strength to keep going. In

> the meantime, my in-laws decided to call a family

> " intervention " of sorts to discuss my health- mental

> and physical, and our finances. Despite this

> opportunity I was still frozen by the inexplicable

> depths of depression. I skated through the

> conversation as best as I could. We did our

> Thanksgiving, returned to SC and went on with life.

> The

> Tuesday after Thanksgiving weekend, I went into the

> hospital for major bilateral TMJ surgery... I came

> out to an explanation that what they found was worse

> than the had expected and that they needed to remove

> the Spectral Process from either side of my jaw- the

> muscles had hardened due to the PA. While

> recouperating, my wife finally uncovered the full

> magnatude of our financial failure and was extremely

> angry and disappointed with me. I had hit rock

> bottom.... I felt the walls caving in and nowhere to

> turn to- nowhere to run to. I had applied for

> disability and had been rejected all the way up to

> the review board level in Falls Church, VA. I had

> no prospects of work. I was in constant pain. And

> no one seemed to know what the hell to do for it.

> So.... Maybe I could make use of all the pain meds.

> After realizing that taking my life wouldn't be

> anything but more trouble for my family, I told my

> wife what I had done.... After two weeks in the

> mental ward, I was released to my

> parents to attempt to put my life back together.

> Freshly filed in a Chapter 7 bankruptcy and not able

> to live with my wife and children until I can prove

> myself healthy and fruitful again, I am at times so

> alone in this world. I wish there was someway

> people could understand just how painful all this

> is. Anyway.... That's my story...

>

__________________________________

for Good - Make a difference this year.

http://brand./cybergivingweek2005/

January 3, 2006

--- wend <wend_1966@...> wrote:

> Welcome to my world…..

>

Hi , I'm so sorry that you're living with so much

pain. I can agree with many of your complaints, and

I'm also not happy with how pain " defines " who I am.

Please be encouraged to continue seeking out a rheumy

and other sources to help you get through this

difficult time. Have you ever been referred for pain

management? I know it's hard to be persistent when

you're hurting, but no one will advocate for you as

hard as you yourself will. Please don't give up,

there's got to be some answers and utilately, relief

for your suffering.

warm blessings,

jane

__________________________________

for Good - Make a difference this year.

http://brand./cybergivingweek2005/

January 3, 2006

Lawrence,

Thank you so much for sharing that, I truley mean it from the bottom of my

heart, realy. It is so hard for people to understand. I dont want pity, but

empathy would be good! I understand you and the wider circle that this disease

inflicts. My thoughts are with you, and if you ever want to chat by email please

do. And thank you!

Love & light

Lawrence Lichtenfeld <sportslinq@...> wrote: