Re: 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]

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 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]

Traci,

You are so not alone. I sometimes want to wear a T-shirt that explains things! I

truly hate it when I hear, " but you look fine! " (I actually did make one T-shirt

that said " I don't take naps, naps take me! " ) There's just no way to explain to

the public that it hurts to move.

It's taken along time for the people around me to adjust to the 'new' me. (I was

diagnosed 8 years ago) My husband took the longest, but now he can take one look

at me and tell that I need my nap! Once the family and friends adjusted fairly

well, I stopped worrying about what strangers think. When the fatigue gets

bad, I schedule the nap into my day, usually really starts hitting me in the

afternoon, so that way, at least I can kind of work around it. Are you having a

lot of pain lately? Pain always makes me depressed and pain really makes me

tired more than normal.

I thank you for asking this question and can't wait to see what others reply!

Life may not be the party we hoped for,

but while we're here

we might as well dance.

From: lucydes29@...

Date: Wed, 4 Aug 2010 00:04:21 +0000

Subject: [ ] Feeling Alone

Hi there everyone. My name is Traci and I was wondering if anyone else

ever feels like no one understands what we go thru? I have been feeling that

way and It is an awful feeling. I cant manage to fight the fatigue that goes

along with RA. If anyone can help, please let me know

Sincerely

Traci

[Guest guest]

Hi Traci -

We all understand what you are feeling. It is such a horrible thing to feel like

no one understands. I lost a good friend unfortunately because I didn't feel up

to going down town overnight for her birthday - this was shortly after I was

initially diagnosed. She hasn't talked to me since. Very sad! Then there are

people who will start to understand. I usually don't even talk about it to

friends any more! The fatigue is so hard, but all we can do is rest when we can

(easier said than done ) I hope you start to feel better - we all understand

Traci!

Donna

>

> Hi there everyone. My name is Traci and I was wondering if anyone else ever

feels like no one understands what we go thru? I have been feeling that way and

It is an awful feeling. I cant manage to fight the fatigue that goes along with

RA. If anyone can help, please let me know

> Sincerely

> Traci

>