Feeling Alone

[Guest guest]

I feel isolated for different reasons than you stated. I feel like my family

supports me, in fact I think they are very worried. Where I feel isolated is

with friends, friends I normally do things with. They call occasionally, but

since I cannot do the regular activities , shopping , Eating ( i also recently

had gastric bypass), dancing , normal working out...I rarely see anyone

anymore... I think they just don't know what to do or say too. I am normally the

person arranging the get together, the day with the girls..etc... not so

anymore... I feel very lonely for the woman to woman friendship..and frankly it

is hard to even relate to people who out and about doing everything a person my

age is usually capable of doing. I can no longer do my job, ( used to be around

alot of people).

Faith

N. California

-------------- Original message --------------

Does anyone have the same problem I have with family? By that I

mean, do you feel isolated? Do you feel like no one in your family

beleaves or supports you with your arthritis? I know that I do. I

get harrassed by my family members because I use a cane or because I

have a service dog. They don't beleave I need it, that if I'd just

loose weight I'd be fine. Just need someone who understands what I'm

going through and how you handle it.

Thanks for your time.

[Guest guest]

I feel isolated for different reasons than you stated. I feel like my family

supports me, in fact I think they are very worried. Where I feel isolated is

with friends, friends I normally do things with. They call occasionally, but

since I cannot do the regular activities , shopping , Eating ( i also recently

had gastric bypass), dancing , normal working out...I rarely see anyone

anymore... I think they just don't know what to do or say too. I am normally the

person arranging the get together, the day with the girls..etc... not so

anymore... I feel very lonely for the woman to woman friendship..and frankly it

is hard to even relate to people who out and about doing everything a person my

age is usually capable of doing. I can no longer do my job, ( used to be around

alot of people).

Faith

N. California

-------------- Original message --------------

Does anyone have the same problem I have with family? By that I

mean, do you feel isolated? Do you feel like no one in your family

beleaves or supports you with your arthritis? I know that I do. I

get harrassed by my family members because I use a cane or because I

have a service dog. They don't beleave I need it, that if I'd just

loose weight I'd be fine. Just need someone who understands what I'm

going through and how you handle it.

Thanks for your time.

[Guest guest]

,

I never gave much thought to what my family is thinking for feeling about my

illness. My kids understand most of the time and hubby well he is rather

clueless most of the time. I don;t feel isolated. But then again I don't sit

in the house or isolate myself from others. I go, do and lead a pretty

normal life 95% of the time. The other well I made some modifications. My

family

knows if I say I do not want to go...then leave me alone about it.

As far as believing I have RA, OA and Fibro. Well, I am not sure I even

believe it....No admitting disability or defeat here. So why should my family.

I think a lot of it is attitude. If you display the poor pitiful me

attitude then they grow tired quickly of sick. lame and lazy. (sorry to be so

blunt,

but I am a ex-Army wife) Its part of human nature. We cast out what we

don't understand, accept or is different.

I think if you project an attitude, of yes I have this disease that is

annoyance to me because it tries to slow me down...but I am not defeated yet.

I

have my wheelchair, dog, cane, etc.. and I am moving on. People see you

differently. I would tell my family this is what I need to go on with my life

and

it will be with me at this point for the rest of my life.

As far as weight is concerned. Your family may have a point is you are

overweight to morbid or super morbid obese. For every 10 lbs of weight you

loose

you take 30 lbs of stress off you back, legs, knees, feet and ankles. There

are also benefits such as improvement or resolution of reflux, high BP,

diabetes, IBS, cardiac stress, sleep apnea, and respiratory problems. I am a

surgical weight loss patient. There are others hear on the list. There are

also

many here that have lost a ton of weight without surgery. I know loosing

weight 40lbs allowed me off all meds. I was on Methotrexate, Enbrel, Bextra,

Prednisone, Folic Acid, Leukovorin, calcium/Vit D, mag, ultram, prevacid and a

bunch of there meds. I was so drugged I was not really functional!!!! It

was horrible. I had to stop meds to have my weight loss surgery. I stopped

my meds a month before surgery and I never went back on them!!!! I found I

was so crystal clear with my thoughts, my level of pain and frustration went

down tremedously, I had NO swelling and slept like a baby. No doctor is going

to admit this..cerntainly not my bonehead rheummy...but I was GROSSLY OVER

MEDICATED!!!! Its been almost 7 months now and I am still 100% med free. I

take an occastional tylenol but that is about it. I also had problems with

IBS, GERD, sinus and allergies. All of these problems are GONE. My IBS was

the first to go, next GERD and last was my sinus and allergies

problems...along with the meds to control them.

I have also stopped using my two TENS units, as well as a various splints

for hands and wrists, Mouth night guard for jaw pain, and my use of shoes with

orthodics is less than half the time. Who knows what the future holds I

continue to loose weight. I m not near my goal yet. It would be nice if it

left

and never came back (austoimmune disease).

Toni

In a message dated 1/2/2005 2:21:43 AM Central Standard Time,

writes:

Date: Sun, 02 Jan 2005 03:40:37 -0000

From: " " <labsr2kool@...>

Subject: Feeling alone

Does anyone have the same problem I have with family? By that I

mean, do you feel isolated? Do you feel like no one in your family

beleaves or supports you with your arthritis? I know that I do. I

get harrassed by my family members because I use a cane or because I

have a service dog. They don't beleave I need it, that if I'd just

loose weight I'd be fine. Just need someone who understands what I'm

going through and how you handle it.

Thanks for your time.

[Guest guest]

Welcome, !

The problems you are having with your family's lack of understanding of

your health status are, unfortunately, not uncommon.

Many members of the group have told similar stories.

For those in my life who don't " get it, " I try to stay away from the

subject. I can't say that anyone is directly negatively critical, but,

if someone doesn't understand, for example, that I might need more rest

than I did before, I figure that's his or her problem. It used to

frustrate me, but not anymore.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Feeling alone

>

>

>

> Does anyone have the same problem I have with family? By that I

> mean, do you feel isolated? Do you feel like no one in your family

> beleaves or supports you with your arthritis? I know that I do. I

> get harrassed by my family members because I use a cane or because I

> have a service dog. They don't beleave I need it, that if I'd just

> loose weight I'd be fine. Just need someone who understands what I'm

> going through and how you handle it.

> Thanks for your time.

>

[Guest guest]

Hi ,

I'm Noreen, and I usually lurk here, but I had to answer this, because it hit so

close to home.

I am quite overweight, and my family members had the same opinion when I first

started having problems. " you just need to lose weight. " , " you know if you go to

the doctor he's just going to tell you to lose weight "

I was so frustrated, and felt like it would be a waste of time to go in to see

someone. Until my hands swelled up, and I finally saw someone, then a

rheumatologist. I'm on methotrexate now and feel so much better, I can't

believe it.

I know weighing less would help me feel better too, but when family members try

to tell you that's all that's wrong, they are missing the point. RA is not a

disease of obesity. RA can be worsened by obesity, but thin or fat, the RA is

still there.

My rheumy, thankfully helped me to see that, and that while losing weight would

help me, it isn't what caused my wrists and hands to swell.

As far as family, my husband became more sympathetic after a bout of carpal

tunnel. My elderly mother I simply had to confront and say tell her she was

seriously hurting my feelings. (she was so surprised, like telling me everytime

she saw me that I would feel better if I lost weight, would not be hurting my

feelings.)

Truthfully, I don't think anyone without RA does understand. Not the aching, not

the fatigue, not the overall feelings of " blah " .

So in truth, the very best support I got, was from this group.

I bless the people here every day, because these people understand, and helped

me to understand that having RA is not MY FAULT, despite my obesity.Knowing

that, makes all the difference in the world, whether family members understand

or not.

Noreen

[ ] Feeling alone

Does anyone have the same problem I have with family? By that I

mean, do you feel isolated? Do you feel like no one in your family

beleaves or supports you with your arthritis? I know that I do. I

get harrassed by my family members because I use a cane or because I

have a service dog. They don't beleave I need it, that if I'd just

loose weight I'd be fine. Just need someone who understands what I'm

going through and how you handle it.

Thanks for your time.

[Guest guest]

Well said, Noreen!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Feeling alone

>

> Hi ,

> I'm Noreen, and I usually lurk here, but I had to answer this, because

it hit so close to home.

> I am quite overweight, and my family members had the same opinion when

I first started having problems. " you just need to lose weight. " , " you

know if you go to the doctor he's just going to tell you to lose weight "

> I was so frustrated, and felt like it would be a waste of time to go

in to see someone. Until my hands swelled up, and I finally saw

someone, then a rheumatologist. I'm on methotrexate now and feel so

much better, I can't believe it.

>

> I know weighing less would help me feel better too, but when family

members try to tell you that's all that's wrong, they are missing the

point. RA is not a disease of obesity. RA can be worsened by obesity,

but thin or fat, the RA is still there.

> My rheumy, thankfully helped me to see that, and that while losing

weight would help me, it isn't what caused my wrists and hands to swell.

> As far as family, my husband became more sympathetic after a bout of

carpal tunnel. My elderly mother I simply had to confront and say tell

her she was seriously hurting my feelings. (she was so surprised, like

telling me everytime she saw me that I would feel better if I lost

weight, would not be hurting my feelings.)

> Truthfully, I don't think anyone without RA does understand. Not the

aching, not the fatigue, not the overall feelings of " blah " .

> So in truth, the very best support I got, was from this group.

> I bless the people here every day, because these people understand,

and helped me to understand that having RA is not MY FAULT, despite my

obesity.Knowing that, makes all the difference in the world, whether

family members understand or not.

>

> Noreen

[Guest guest]

Toni,

Funny thing is... whatever this is with me..flared up after losing 60lbs! I

thought weightloss was the answer for the pain I was having in my fe. Instead

they got worse and I came down with whatever this is that is affecting all of my

joints. ( RA? LUPUS?) So weightloss while beneficial is not always the magical

cure. You are fortunate it has worked so well for you.

Faith

--------- Feeling alone

Does anyone have the same problem I have with family? By that I

mean, do you feel isolated? Do you feel like no one in your family

beleaves or supports you with your arthritis? I know that I do. I

get harrassed by my family members because I use a cane or because I

have a service dog. They don't beleave I need it, that if I'd just

loose weight I'd be fine. Just need someone who understands what I'm

going through and how you handle it.

Thanks for your time.

[Guest guest]

Faith,

I don't understand why you are nt participating in any of your old

activities. Hmm...I have RA, OA and Fibro and I had lapband weight loss

surgery. I

still shop, eat out, exercise( slower and not as much). I would go back to

planning some activities when you feel well. Plan them in places where there

is food you can eat or eat at home and have drinks when you are out. I do not

know where you are in your food progression post-op gastric bypass but even

on liquids or soft food you can find food to eat at many popular eateries.

Most places will puree food on request and are more than happy to provide carry

out containers for what is left uneaten. I can give you plenty of tips

from others that are very successful, working fulltime and travel a lot, hence

eating out almost every day.

Do you attend any of your weightloss support groups, autoimmune support

group, PACE(people with arthritis can exercise) or have tried some counseling

sessions for those with chronic illness?

I don't understand when you say its hard to relate. Because I know longer

work and I am more busy now than when I was when I was working!!! I have my

kids high school which I volunteer with, numerous friends that eat out, shop

with, hangout in general, my animals which I care for and a husband and two

children that keep me REAL busy. I would get back into the swing of things.

Branch out make new friends. I know there are only a few people that I still

socialize with from work. Most of those we were good friends for a very long

time and still are even after I left my job. The other friends were basicly

work related people I knew and once I left my job we had nothing in common

anymore.

Do some real soul searching about those friends from work. Are they truly

your friends and what do you have in common to sustain a life long friendship.

You may find that they are not so much your good friends as you think.

I think one is only as limited as they allow themselves to be. Start

thinking and getting creative to maintain as normal a life as possible.

Toni

In a message dated 1/2/2005 6:41:35 PM Central Standard Time,

writes:

Date: Sun, 02 Jan 2005 06:58:34 +0000

From: fmt2002@...

Subject: Re: Feeling alone

I feel isolated for different reasons than you stated. I feel like my family

supports me, in fact I think they are very worried. Where I feel isolated is

with friends, friends I normally do things with. They call occasionally, but

since I cannot do the regular activities , shopping , Eating ( i also

recently had gastric bypass), dancing , normal working out...I rarely see

anyone

anymore... I think they just don't know what to do or say too. I am normally

the person arranging the get together, the day with the girls..etc... not so

anymore... I feel very lonely for the woman to woman friendship..and frankly it

is hard to even relate to people who out and about doing everything a person

my age is usually capable of doing. I can no longer do my job, ( used to be

around alot of people).

Faith

N. California

[Guest guest]

I understand completely! I don't do nearly as much as I used to, I used to be

" the leader of the pack " , so to speak, now I am barely taking up the rear!

LOL!! I still have some friends that are really my close friends. I just have

to be choosey about what I do with them. Things like a day shopping, or

anything where I would have to stand for long periods of time are now out of the

question. The reality is I don't want to be the one holding them back. The

important thing is to try to concentrate on what you can do, because it is soooo

easy to get sucked up by this disease... Hang in there!

Semalee

I feel isolated for different reasons than you stated. I feel like my family

supports me, in fact I think they are very worried. Where I feel isolated is

with friends, friends I normally do things with. They call occasionally, but

since I cannot do the regular activities , shopping , Eating ( i also

recently had gastric bypass), dancing , normal working out...I rarely see

anyone

anymore... I think they just don't know what to do or say too. I am normally

the person arranging the get together, the day with the girls..etc... not so

anymore... I feel very lonely for the woman to woman friendship..and frankly

it

is hard to even relate to people who out and about doing everything a person

my age is usually capable of doing. I can no longer do my job, ( used to be

around alot of people).

Faith

N. California

[Guest guest]

Faith,

I was super skinny when this disease struck me, and it affected my

ankles and knees the most.

Sure being overweight will stress the joints, but it surely doesn't

cause RA. I hope you find out what is going on. I know how

frustrating it is not having a diagnosis.

a

On Sun, 02 Jan 2005 19:11:39 +0000, fmt2002@...

<fmt2002@...> wrote:

>

>

> Toni,

> Funny thing is... whatever this is with me..flared up after losing 60lbs! I

thought weightloss was the answer for the pain I was having in my fe. Instead

they got worse and I came down with whatever this is that is affecting all of my

joints. ( RA? LUPUS?) So weightloss while beneficial is not always the magical

cure. You are fortunate it has worked so well for you.

> Faith

>

> --------- Feeling alone

>

> Does anyone have the same problem I have with family? By that I

> mean, do you feel isolated? Do you feel like no one in your family

> beleaves or supports you with your arthritis? I know that I do. I

> get harrassed by my family members because I use a cane or because I

> have a service dog. They don't beleave I need it, that if I'd just

> loose weight I'd be fine. Just need someone who understands what I'm

> going through and how you handle it.

> Thanks for your time.

>

>

>

[Guest guest]

Toni,

I have been very ill that is why I have not ben participating in my old

activities. Maybe you did not understand that, I feel as though I have had the

severe flu for the last 2-3 weeks. This puts a damper on getting out of the

house let alone being able to stay awake more than 3 hours at a time. This shall

pass once I get on the right meds, get thoroughly diagnosed. Also another thing

that is being looked at this morning by my weightloss surgeon is possible

vitamin B-1 ( thiamin) deficiency which could be very serious... figuring things

out is not easy ..it takes time. I am sure I will be where you are one day. You

are fortunate you feel as well as you do. I do not feel I am " allowing " my self

to be limited at this time, it is my body that is limited..not my mind.

I am very active in weightloss support groups. Just days prior to coming down

with this, I was exercising daily ( water aerobics and swimming laps) Attended

functions all the time prior to getting sick. I have not been working for two

years becuase the doctors took me off due to my severe foot problems. I had a

job where I stood for 8 hours each day. The weightloss surgery was an attempt to

help that situation.

Faith

--------- Re: Feeling alone

I feel isolated for different reasons than you stated. I feel like my family

supports me, in fact I think they are very worried. Where I feel isolated is

with friends, friends I normally do things with. They call occasionally, but

since I cannot do the regular activities , shopping , Eating ( i also

recently had gastric bypass), dancing , normal working out...I rarely see

anyone

anymore... I think they just don't know what to do or say too. I am normally

the person arranging the get together, the day with the girls..etc... not so

anymore... I feel very lonely for the woman to woman friendship..and frankly it

is hard to even relate to people who out and about doing everything a person

my age is usually capable of doing. I can no longer do my job, ( used to be

around alot of people).

Faith

N. California

[Guest guest]

Thanks a... it sure takes alot of patience going throught his process..for

the most part I am an up person with a great sense of humor..it will help me

through as it has in manyother situations. :-)

--------- Feeling alone

>

> Does anyone have the same problem I have with family? By that I

> mean, do you feel isolated? Do you feel like no one in your family

> beleaves or supports you with your arthritis? I know that I do. I

> get harrassed by my family members because I use a cane or because I

> have a service dog. They don't beleave I need it, that if I'd just

> loose weight I'd be fine. Just need someone who understands what I'm

> going through and how you handle it.

> Thanks for your time.

>

>

>

[Guest guest]

Thanks Semalee.. I am sure once I get things under control I will have a better

perspective on things. It will start with me for sure. Only I can make a

difference in the way I am feeling, no one else can do that for me. This is a

great group I am glad I found it.

Faith

-------------- Original message --------------

I understand completely! I don't do nearly as much as I used to, I used to be

" the leader of the pack " , so to speak, now I am barely taking up the rear!

LOL!! I still have some friends that are really my close friends. I just have

to be choosey about what I do with them. Things like a day shopping, or

anything where I would have to stand for long periods of time are now out of the

question. The reality is I don't want to be the one holding them back. The

important thing is to try to concentrate on what you can do, because it is soooo

easy to get sucked up by this disease... Hang in there!

Semalee

I feel isolated for different reasons than you stated. I feel like my family

supports me, in fact I think they are very worried. Where I feel isolated is

with friends, friends I normally do things with. They call occasionally, but

since I cannot do the regular activities , shopping , Eating ( i also

recently had gastric bypass), dancing , normal working out...I rarely see

anyone

anymore... I think they just don't know what to do or say too. I am normally

the person arranging the get together, the day with the girls..etc... not so

anymore... I feel very lonely for the woman to woman friendship..and frankly

it

is hard to even relate to people who out and about doing everything a person

my age is usually capable of doing. I can no longer do my job, ( used to be

around alot of people).

Faith

N. California

[Guest guest]

I have never posted, in fact I just joined this morning for support

with chronic, fms, oa, ra and lupus. After reading Toni's message to

Faith I was concerned. Faith, I want you to know that I understand and

a lot of other folks do as well. I got on anti-depressants and that

has helped me. Also support groups have been a big help. One of my

biggest problems was with folks who would say, " I can, I don't

understand why you cant " , Just to let you know I have had that pet

peeve following me for some time too. Mostly by people who did not

have the same illness. We can't because we are sick, sickness

sometimes causes depression, depression needs treatrment, and support.

Toni, I am glad to hear your life is back in order and that you are

now active and your life is full. Some of us are not that fortunate,

please do not support them in there isolation by affirming how

" abnormal " they are. If you can't try to understand and support, why

are you here?

>

>

> Faith,

> I don't understand why you are nt participating in any of your old

> activities. Hmm...I have RA, OA and Fibro and I had lapband weight

loss surgery. I

> still shop, eat out, exercise( slower and not as much). I would go

back to

> planning some activities when you feel well.

> I don't understand when you say its hard to relate. Because I know

longer

> work and I am more busy now than when I was when I was working!!! I

have my

> kids high school which I volunteer with, numerous friends that eat

out, shop

> with, hangout in general, my animals which I care for and a husband

and two

>

> Do some real soul searching about those friends from work. Are they

truly

> your friends and what do you have in common to sustain a life long

friendship.

> You may find that they are not so much your good friends as you think.

>

> I think one is only as limited as they allow themselves to be. Start

> thinking and getting creative to maintain as normal a life as

possible.

>

> Toni

>

> In a message dated 1/2/2005 6:41:35 PM Central Standard Time,

> writes:

>

> Date: Sun, 02 Jan 2005 06:58:34 +0000

> From: fmt2002@c...

> Subject: Re: Feeling alone

>

>

>

> I feel isolated for different reasons than you stated. I feel like

my family

> supports me, in fact I think they are very worried. Where I feel

isolated is

> with friends, friends I normally do things with. They call

occasionally, but

> since I cannot do the regular activities , shopping , Eating ( i also

> recently had gastric bypass), dancing , normal working out...I

rarely see anyone

> anymore... I think they just don't know what to do or say too. I am

normally

> the person arranging the get together, the day with the

girls..etc... not so

> anymore... I feel very lonely for the woman to woman

friendship..and frankly it

> is hard to even relate to people who out and about doing everything

a person

> my age is usually capable of doing. I can no longer do my job, (

used to be

> around alot of people).

>

> Faith

> N. California

>

>

>

>

>

>

>

[Guest guest]

Thank you lisa for your understanding.

Faith

--------- Re: Feeling alone

>

>

>

> I feel isolated for different reasons than you stated. I feel like

my family

> supports me, in fact I think they are very worried. Where I feel

isolated is

> with friends, friends I normally do things with. They call

occasionally, but

> since I cannot do the regular activities , shopping , Eating ( i also

> recently had gastric bypass), dancing , normal working out...I

rarely see anyone

> anymore... I think they just don't know what to do or say too. I am

normally

> the person arranging the get together, the day with the

girls..etc... not so

> anymore... I feel very lonely for the woman to woman

friendship..and frankly it

> is hard to even relate to people who out and about doing everything

a person

> my age is usually capable of doing. I can no longer do my job, (

used to be

> around alot of people).

>

> Faith

> N. California

>

>

>

>

>

>

>

[Guest guest]

To all who suffer the newness of RA and who suffer alone,

I know it is so hard to keep things going in life when you hurt so badly.

Chronic physical pain can cause you to isolate yourself and become depressed

very easily. When Ra creeped up on me I was so active at church it was like a

real job, i homeschool my 4 kids and was very active in my homeschool support

group in coordinating activities for the kids and conferences. Then RA hit me

hard and fast. Im 31 now this was last year when my life totally changed. I

refused to accept it then I did and it really brought me down emotionally all I

could do was focus on how much my life had changed, how it wasnt fair, why me

and mostly saying I refuse to play this game I was dealt. Since then God has

done a serious attitude change in me and actually I feel much better. I cant

tell anyone what to do or how to change or how to feel better but I can share

what God has done for me. In the last year it has been the hardest in my life.

As a child I was sexually abused , had alcoholic parents, severe

scoliosis at 14 and had back surgery at 14, had 4 pregnacies that kept me bed

ridden for months and had my gall bladder removed 10 months ago, moved to

Missouri 3 months ago because my mother in law is dieing of breast cancer and I

had to leave everything behind in CA to a place I did not want to go, leave all

my support and help and friends, half of our material possions and much more.

But you know what-- ALL OF THIS has brought the worst and the best out of me. My

Lord Jesus has given me hope in many situations I thought I could never endure.

I am being molded into a better friend, a more loving wife, a more giving mother

because of my trials and I pray hourly that God would allow my trials to make me

a better person instead of a miserable person. Which I admit has happened on

many occasions and then my wonderful husband or friends give me a little nudge

and point me back to the hope of Jesus. Its been hard and I expect it to get

harder. I pray for all in this group to have

strength, hope, and most of all JOY this next year.Thank you to everyone for

the love you give, the kind words you write and for changing my life and also

giving me hope to make me a better person. Your all so great. Love, Latisha

I feel isolated for different reasons than you stated. I feel like my family

supports me, in fact I think they are very worried. Where I feel isolated is

with friends, friends I normally do things with. They call occasionally, but

since I cannot do the regular activities , shopping , Eating ( i also

recently had gastric bypass), dancing , normal working out...I rarely see

anyone

anymore... I think they just don't know what to do or say too. I am normally

the person arranging the get together, the day with the girls..etc... not so

anymore... I feel very lonely for the woman to woman friendship..and frankly it

is hard to even relate to people who out and about doing everything a person

my age is usually capable of doing. I can no longer do my job, ( used to be

around alot of people).

Faith

N. California

[Guest guest]

I have always been a believer in adversity builds character..HA HA..well darn it

anyway..adversity enough already HA

I have had a year similar to yours. I had severely low thyroid feb, Pancreatitis

in March Came to the realization in June I would not be able to return to my job

of 20 years, My son left for Iraq in August, 8. ( still is there ) I had a

biopsy on August 11th while waiting on those results ,my mother passed away on

August 14, August 29th I had Gall Bladder surgery, 3 weeks later I had Gastric

Bypass surgery. December 11th multiple joints swelled up with pain all within a

few days..been sick ever since. Finding answers now. Hoping to avoid the

depression you are talking about .. I think I am doing ok so far.. One day at a

time.

Thanks for sharing,\

Faith

-------------- Original message --------------

To all who suffer the newness of RA and who suffer alone,

I know it is so hard to keep things going in life when you hurt so badly.

Chronic physical pain can cause you to isolate yourself and become depressed

very easily. When Ra creeped up on me I was so active at church it was like a

real job, i homeschool my 4 kids and was very active in my homeschool support

group in coordinating activities for the kids and conferences. Then RA hit me

hard and fast. Im 31 now this was last year when my life totally changed. I

refused to accept it then I did and it really brought me down emotionally all I

could do was focus on how much my life had changed, how it wasnt fair, why me

and mostly saying I refuse to play this game I was dealt. Since then God has

done a serious attitude change in me and actually I feel much better. I cant

tell anyone what to do or how to change or how to feel better but I can share

what God has done for me. In the last year it has been the hardest in my life.

As a child I was sexually abused , had alcoholic parents, severe

scoliosis at 14 and had back surgery at 14, had 4 pregnacies that kept me bed

ridden for months and had my gall bladder removed 10 months ago, moved to

Missouri 3 months ago because my mother in law is dieing of breast cancer and I

had to leave everything behind in CA to a place I did not want to go, leave all

my support and help and friends, half of our material possions and much more.

But you know what-- ALL OF THIS has brought the worst and the best out of me. My

Lord Jesus has given me hope in many situations I thought I could never endure.

I am being molded into a better friend, a more loving wife, a more giving mother

because of my trials and I pray hourly that God would allow my trials to make me

a better person instead of a miserable person. Which I admit has happened on

many occasions and then my wonderful husband or friends give me a little nudge

and point me back to the hope of Jesus. Its been hard and I expect it to get

harder. I pray for all in this group to have

strength, hope, and most of all JOY this next year.Thank you to everyone for the

love you give, the kind words you write and for changing my life and also giving

me hope to make me a better person. Your all so great. Love, Latisha

I feel isolated for different reasons than you stated. I feel like my family

supports me, in fact I think they are very worried. Where I feel isolated is

with friends, friends I normally do things with. They call occasionally, but

since I cannot do the regular activities , shopping , Eating ( i also

recently had gastric bypass), dancing , normal working out...I rarely see

anyone

anymore... I think they just don't know what to do or say too. I am normally

the person arranging the get together, the day with the girls..etc... not so

anymore... I feel very lonely for the woman to woman friendship..and frankly it

is hard to even relate to people who out and about doing everything a person

my age is usually capable of doing. I can no longer do my job, ( used to be

around alot of people).

Faith

N. California

[Guest guest]

Welcome, !

Hope you'll find the support you need here.

>From: " lisagirl401 " <lisagirl401@...>

>Reply-

>

>Subject: [ ] Re: Feeling alone

>Date: Mon, 03 Jan 2005 18:24:14 -0000

>

>

>

>

>

>I have never posted, in fact I just joined this morning for support

>with chronic, fms, oa, ra and lupus. After reading Toni's message to

>Faith I was concerned. Faith, I want you to know that I understand and

>a lot of other folks do as well. I got on anti-depressants and that

>has helped me. Also support groups have been a big help. One of my

>biggest problems was with folks who would say, " I can, I don't

>understand why you cant " , Just to let you know I have had that pet

>peeve following me for some time too. Mostly by people who did not

>have the same illness. We can't because we are sick, sickness

>sometimes causes depression, depression needs treatrment, and support.

>Toni, I am glad to hear your life is back in order and that you are

>now active and your life is full. Some of us are not that fortunate,

>please do not support them in there isolation by affirming how

> " abnormal " they are. If you can't try to understand and support, why

>are you here?

>

[Guest guest]

Latisha

I really enjoyed your email you posted on here...Hope

things go well with you and yours..

Jan

--- Latisha Vallone <latishavallone@...> wrote:

>

> To all who suffer the newness of RA and who suffer

> alone,

> I know it is so hard to keep things going in life

> when you hurt so badly. Chronic physical pain can

> cause you to isolate yourself and become depressed

> very easily. When Ra creeped up on me I was so

> active at church it was like a real job, i

> homeschool my 4 kids and was very active in my

> homeschool support group in coordinating activities

> for the kids and conferences. Then RA hit me hard

> and fast. Im 31 now this was last year when my life

> totally changed. I refused to accept it then I did

> and it really brought me down emotionally all I

> could do was focus on how much my life had changed,

> how it wasnt fair, why me and mostly saying I refuse

> to play this game I was dealt. Since then God has

> done a serious attitude change in me and actually I

> feel much better. I cant tell anyone what to do or

> how to change or how to feel better but I can share

> what God has done for me. In the last year it has

> been the hardest in my life. As a child I was

> sexually abused , had alcoholic parents, severe

> scoliosis at 14 and had back surgery at 14, had 4

> pregnacies that kept me bed ridden for months and

> had my gall bladder removed 10 months ago, moved to

> Missouri 3 months ago because my mother in law is

> dieing of breast cancer and I had to leave

> everything behind in CA to a place I did not want to

> go, leave all my support and help and friends, half

> of our material possions and much more. But you know

> what-- ALL OF THIS has brought the worst and the

> best out of me. My Lord Jesus has given me hope in

> many situations I thought I could never endure. I am

> being molded into a better friend, a more loving

> wife, a more giving mother because of my trials and

> I pray hourly that God would allow my trials to make

> me a better person instead of a miserable person.

> Which I admit has happened on many occasions and

> then my wonderful husband or friends give me a

> little nudge and point me back to the hope of Jesus.

> Its been hard and I expect it to get harder. I pray

> for all in this group to have

> strength, hope, and most of all JOY this next

> year.Thank you to everyone for the love you give,

> the kind words you write and for changing my life

> and also giving me hope to make me a better person.

> Your all so great. Love, Latisha

>

>

>

>

> I feel isolated for different reasons than you

> stated. I feel like my family

> supports me, in fact I think they are very worried.

> Where I feel isolated is

> with friends, friends I normally do things with.

> They call occasionally, but

> since I cannot do the regular activities , shopping

> , Eating ( i also

> recently had gastric bypass), dancing , normal

> working out...I rarely see anyone

> anymore... I think they just don't know what to do

> or say too. I am normally

> the person arranging the get together, the day with

> the girls..etc... not so

> anymore... I feel very lonely for the woman to

> woman friendship..and frankly it

> is hard to even relate to people who out and about

> doing everything a person

> my age is usually capable of doing. I can no

> longer do my job, ( used to be

> around alot of people).

>

> Faith

> N. California

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

>

[Guest guest]

, My son has the " O " in OCD and TS ( 7 1/2 yrs ). So far is dealing...

but he is young. I do have a nephew that has tics and OCD.. I would say the ocd

is the bigger problem for him. His parents thought he had quirks... but never

realized him as OCD. He is 18 yrs now... & educated himself about it. He is

starting college this week .... He is very smart about it. & deals with to the

best of his ability . He is thriving. He has difficulty with germs and has some

rituals... but it has'nt stopped him from doing what he wants to do. I think

sometimes ( especially in teen years ) that THEY have to figure out. Maybe

stepping back and letting him recognize that this is intrusive to HIM may not

be a bad thing...although hard to do... but in the long run HE will feel the

effect it has on his life. My sister , her husband (who also has ocd ) and her

other 2 children are very open about OCD... often inject humor into it as well

( he won't let her wash or touch his quilt ... she steals it and tells him " Mom

is stronger than OCD! ) It is not a heavy thing in their household. He is

trying Insositol on his own and recently asked me about a local OCD specialist

as he realizes he may be under more stress with college therefore making OCD

worse. If you step away and it becomes something that he has to recognize as a

problem ... and he asks for help , maybe it would be beneficial? Sharon-----

Original Message -----

From: heather Kashino

Sent: Thursday, September 01, 2005 10:56 PM

Subject: feeling alone

Hi again,

I have posted on and off on this board. My son and I have really not

made any progress. I am pretty lost and confused. I read all your

posts about CBT etc. and I get pretty down. My son is 14 and he is

not doing CBT anymore. I was offering rewards at the beginning (

about the first 5 months ), an idea I got from here and Dr. Chansky's

book, but the rewards got increasingly more expensive and i could n't

afford to keep it up. My son started avoiding the difficult exposures

and coming up with new ones. He had to rate them for difficulty as I

can't make sense of any of it and it got to the point where I felt he

was " playing " me as did his therapist. I stopped the rewards and he

stopped the exposures. We are now just living with ocd. I have been

grieving and trying to come to terms with all of this. I am trying to

just accept that my son has ocd and will always have ocd. I can't fix

him. I can't make him do the exposures. His therapist has stopped

working with him and feels he isn't ready to do the work. I feel like

we have been abandoned, but maybe his ocd needs to get worse before

it gets better /?

I try to avoid enabling his compulsions and not do things for him

that his ocd prevents him from doing. His psych. says I won't make

the ocd worse if I do things like open the door for him, but I feel

that I am allowing the ocd to win and becoming its victim along with

him. Does anyone have a teen or older ocd child that refuses to work

on getting better? Please share with me if you do and tell me how you

cope with this.

Our list archives, bookmarks, files, and chat feature may be accessed at:

/ .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D., (

http://www.lighthouse-press.com ). Our list moderators are Birkhan,

Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail

Pesses, and Kathy . Subscription issues or suggestions may be

addressed to Louis Harkins, list owner, at louisharkins@... ,

louisharkins@... , louisharkins@... .

[Guest guest]

You're not alone, . My son, who's 15 in October, has been 'fired' by his

psychiatrist too. He's atypical aspergers and highly gifted, so that might be

to blame, but he just kept insisting he 'saw through' the CBT tricks and

couldn't see how they'd work. It wasn't like he didn't know the 'habits' were

OCD and needed to be fighted. He just didn't feel like doing the hard work,

primarily because he figured the ocd'd just come back in another form anyway.

The doc told him he was welcome to come back when he felt ready.

At this point, my son's life isn't too disrupted by his ocd. He can hide most of

it and for the most part it's just really hard on the rest of us. I've told the

family that even if he doesn't fight the ocds, we will by not bending to his

'rules'. It leads to a fair bit of conflict. We tried inositol for about six

months last winter and we all thought it was helping, then quit it in the summer

to see if there was a change - and frankly didn't notice any difference. The

summer's been pretty stress-free, though, so maybe his ocds are turned down

right now. We'll see when he returns to school next week. My son also has mild

tics, btw.

Have you tried medication? That's what the doc suggested, thinking it would take

the edge of the ocd and make him ready - but WE weren't ready for that. I don't

think they've got so much control over his life that it's necessary yet. That's

why we thought inositol was worth a try. Do you think he'd at least go for that?

I know it's hard at this age. They're trying so hard to be independent and under

such stress as it is.

kimz

>

> From: " heather Kashino " <heatherjk37@...>

> Date: 2005/09/01 Thu PM 11:56:17 EST

>

> Subject: feeling alone

>

>

[Guest guest]

Dear ,

If you substituted the word " daughter " for " son, " I could have

written your post word for word. My daughter is 15...her OCD

symptoms started at 14. She was (is) a master of manipulation, and

it took me so long to realize I was being played. I, too, racked up

quite a debt in rewards for exposures, or, in her case, just for

eating a bowl of oatmeal (only thing she'd eat for 5 months), until I

finally had to say " no more. " She got worse and worse, until finally

she was unable to function in anything closely appromixating

a " normal " level.

I finally made the decision to send her to the Menninger Clinic in

Houston, even though it meant borrowing money from my parents and

taking out a home equity loan. She has been there for 6 weeks...is

coming home on Saturday. She is much improved, and they have her

eating healthy meals using their plates and silverware (she is

vegan...her OCD focused on avoidance of animal products, in food,

detergents, clothing...you name it...but it was to the exclusion of

EVERYTHING because she could not trust that anything was cruelty free

enough for her), and they got her to sleep in the bed just last

week...something she wouldn't do because she didn't want them to wash

the sheets afterwards with animal products.

But she is very, very angry with us for sending her, and for making

her do all of these things. She was not ready to do them on her own,

and had to be threatened with being fed with a tube at an eating

disorder unit in order to do it. We have made a behavior contract

with her therapist, spelling out all of the things she must do at

home to avoid hospitalization or therapeutic boarding school (really

basic things like eating 3 meals a day according to a nutritionist's

plan, brushing teeth, showering, attending school, etc.). She is so

furious with us, and I am worried about how it will be when she comes

home. Our house has finally returned to " normal, " and I'm not going

to lose that again. I think you're right not to accomodate your

son's OCD...once you start to do that, he will have no incentive at

all to get better. It is a slippery slope that led us straight to

hell...the best thing about having her hospitalized was finally being

able to break that cycle of accomodation of and participation in her

OCD rituals. If you were smart enough not to start, don't. Your son

needs a reason to WANT to get better...he may have to hit rock bottom

first, as did my daughter...and she still doesn't seem to want it.

She has what is called " OCD with poor insight. " Sounds like your son

does, too.

My husband and I are separated...so that's one loss, and the loss of

my daughter as I knew her, of the dreams I had for the way her life

would be...all of that is another loss, and the grief, at times, has

been unbearable. I have hung in there and tried so hard to stay

healthy for my son, who is almost 18. But there have been so many

days where I've wanted to give up, or give in, and tell my husband to

come home, even though it's not really what I want, just for the sake

of having another adult in the house.

This has gotten pretty long, but all of it is to say you may feel

alone, but you're not. I'm right here with you...and I will be for

as long as you need me. You can post here, or email me privately,

and I will always respond. Please take care of yourself...I keep

reminding myself that I can't expect my daughter to make healthy

choices if she doesn't see me making them for myself. So go out with

your friends, pick up a good book, treat yourself to something

frivolous once in a while...and remember, your son is ill, but you're

not. It doesn't take away the grief, but it gives you a good moment

here and there, and we need all of those we can get.

With love and a big, long hug,

Alene

> Hi again,

> I have posted on and off on this board. My son and I have really

not

> made any progress. I am pretty lost and confused. I read all your

> posts about CBT etc. and I get pretty down. My son is 14 and he is

> not doing CBT anymore.

[Guest guest]

, I don't think there is anything worse than feeling alone. I

felt that way too when Bre was at her worse and not wanting to do

exposures because she was so scared. You are not alone . We are all

here for you. I went to therapy for me to help with the helplessness

feelings. It was so hard for me to let go and realize I couldn't heal

Bre. As a mother I felt it was my job to protect her.

Is your son going to school and does he have friends? I was curious

how he is functioning in life. I know Bre " lets her hair down " so to

speak when she is at home. At school she pulls it together.

I try to read uplifting things and to tackle one day at a time. There

is so much I want to tell Bre and alot I do, but how much she listens

at times, I don't know. I keep telling her how much I love her no

matter what and that her ocd battle is hers to fight. I tell her I

want her to grow up and be able to take care of her own life. Nothing

is harder than watching your own child struggle! Hang in there and you

can e-mail me anytime! I love the funny e-mails you send me.

Sandy

[Guest guest]

Hi , I only have a moment but (((hugs))) as I know " normal "

teens can be hard to deal with, attitude, ego, etc.

If the rewards weren't working " properly " then yes, I'd stop them

too.

I used to feel that my (now 16) didn't work against his OCD

like I wanted him to, could see no effort at all sometimes. I don't

recall your son's particular OCD problems, but with I did

finally realize that he *was* fighting OCD pretty much all day, just

more " internally " ; like holding back at school, trying to hold back

at home (compulsions), trying to get through things quicker (some of

his lasted a long time). And yes sometimes he was just too tired to

try at all. But he WAS feeling the anxiety/stress of his OCD all

day. Not knowing your son's situation, I don't know if he might be

similar to with compulsions, avoidance, etc.

If his OCD is dragging you & family into it (opening doors) in ways,

you could try setting some limits. You usually can't push back at

ALL of the OCD problems, pick 1 or a few things and work towards

that. Like maybe at home with opening a door for him. Don't jump up

to do it, tell him you'll be there in a minute, make him wait; maybe

ask him if he wants to try (is this a germ thing??), telling him this

is something HE needs to work on. And acknowledge it will take time

(weeks, maybe months) to get better about it, but it's something he

should be working towards. Or pick another OCD problem/need,

whatever, of his, pick a few and find ways to limit your/family's

involvement (like delaying in helping). Ugh, just some quick

thoughts. used to have to have someone change the TV

channels for him or similar and would holler for help. We

accommodated his OCD for some things (bedtime, homework time...) and

worked on others. Actually we took " baby steps " as we could have

pushed harder I guess.

Well, got to go, but vent here on those tough days, and I'm sure if

you can give some examples of his OCD, you could get some specific

suggestions for some things to do. There were days in a row at times

that we didn't push 's OCD as I know between work, school,

housework, time can be limited each evening. So it took quite a

while with , but we had no therapist. You might have to let

your son get worse before he realizes he NEEDS to get better!

> Hi again,

> I have posted on and off on this board. My son and I have really

not

> made any progress. I am pretty lost and confused. I read all your

> posts about CBT etc. and I get pretty down. My son is 14 and he is

> not doing CBT anymore. I was offering rewards at the beginning (

> about the first 5 months ), an idea I got from here and Dr.

[Guest guest]

I am getting ready for a trip this weekend, so my reply will be

briefer than I would like. I thank you so much Kim for your response,

I sometimes think my son is the only one not working on this. Your

son's situation sounds very familiar. Thank you so so much. Funny, my

son is also 15 in october.

> You're not alone, . My son, who's 15 in October, has

been 'fired' by his psychiatrist too. He's atypical aspergers and

highly gifted, so that might be to blame, but he just kept insisting

he 'saw through' the CBT tricks and couldn't see how they'd work. It

wasn't like he didn't know the 'habits' were OCD and needed to be

fighted. He just didn't feel like doing the hard work, primarily

because he figured the ocd'd just come back in another form anyway.

>

> >

>

>

>