Re: Re: Depression in Chronic Illnesses!

[Guest guest]

Hi Ladies, You are reading things into my paragraphs that I did not say. I

always say that it is a normal part of anyone who is chronically ill to be

depressed. And it is okay to feel those emotions. But to have them linger there

too long can be even more detrimental to your health. People who are

chronically depressed can develop suicidal ideations or just turn to the wall

and never come back. I never said to stop medications, therapy or any other

means of dealing with a medical, mental, emotion, psychological, or physical

problem. I was only adding another avenue to a way out of depression. There are

lots of ways to lift the atmosphere and what I propose are different sources on

how to do that. The mind is powerful and so is the will. And the choices are

many. I just voiced one more choice. If you want to be helped, combine all of

the choices you have and try them. If they don't work, try others, seek help,

A sad person does not want to feel sad, they just do.

It's true that involving yourself and filling your life working with others and

being busy can take your mind off of self and ease the sadness. That's what I

was saying. I feel for those that are in that state and was only trying to help

by proposing another avenue to take. I never blamed the sick person. That is a

thought that never occurred to me. I'm sorry you thought that blame was being

put on yourselves. That would be like me blaming myself for getting Scleroderma

or any other disease. Allowing ourselves to not follow every opportunity to get

healthy and remain in an unhealthy state is the sad thing. This group is all

about helping each other. I wasn't just talking off the top of my head.

Dr. Mercola's column, this week, addresses this subject and he says you can

get over sadness and be happy by following these same suggestions.

Lance Armstrong's determination to get back on his bike to win his medals is

what got him off his deathbed with terminal cancer.

When I worked in the hospital for 40+ years, the doctors and other nurses used

to play comedic movies to make the patients laugh.

And the movie a few years back with Robin 's, playing a doctor who

became a clown in the children's ward is another example.

There are many people in and out of the medical field who don't take illness

lying down and get up do something about it.

Two years ago, I was told I was terminal and that all they could do was keep

me comfortable.

Today, I am in remission, am a volunteer for the S/D foundation, on the

comittee for the annual Scleroderma walk. I spent last winter touring in the

Caribbean. I went snorkeling, mountain climbing, cave exploring. I took a sea

plane to the Virgin Islands for the first time.

I did a lot of things I had never done when I was younger. I condsider it all

as part of my therapy.

When I returned, some of my doctors dismissed me saying they could find

nothing wrong with me. One doctor said it was my determination. Another said it

was my medication.

The look in my husband's eyes, said, " I love you! " My mother said, you're

sick because you do not pray! " Whom do you think I listened to, the positive

or the negative? Yes, I stopped talking to my mother, she is sad and tried to

bring me down. I refuse to listen to anybody who will bring me down and it is my

duty as a human being to pass on my experiences if I feel they will help others

in the same posittion My husband is optimistic and he brought me up. My

doctors are ambivalent. They stayed neutral but continued to help me and they

have now started to believe in the antibiotic protocol and positive thinking.

We can make a big difference in our own lives as well as in others. Our actions

are far-reaching, more than we know. Send them out there to do good works.

I'm sorry if some of you got offended at the suggestions I put out there. Did

I do this maliciously? Did I mean harm? Did I want to drag anybody down?

Heaven's no! Remember, I am one of you, just as sick and with the same

feelings. I am also a retired nurse and was once part of the problem with a

closed mind. Once I opened my mind to all

suggestions, I became whole. I wish that for all of you.

There are lots of references out there that says we can help depression.

Making a joyful atmosphere around you is just one of them.

What I said is, you can choose to try it or not. It is up to you. You do

have a choice? That statement alone is positive-----especiallly if you feel you

have been painted into a corner with no way out. Re read what I said with an

open mind and just think about it. It's just another choice!~~~~~~~Peace in

your minds, Joy in your souls, Love in your hearts and improved health to all

including myself. Hoping that this is the year that someone will find a cure!

~~~~~~~~To all with love, Dolores & Mike

Beckman <beckman5@...> wrote:

I agree with Rhonda that it is OK to feel sad. Sadness, even

depression, be physiological, a part of our illnesses or an aspect of

depressive illness. It's what we do about it that matters. We need

to make choices, but we cannot simply choose to smile and be happy.

We can choose to get busy and either find the medical solution to our

unhappiness or, if possible, get involved in things that give us a

sense of affirmation. I remember the class I taught last term:

someone said only those who choose to be full of self-pity are

depressed, and three intelligent, vibrant young women told of how

they couldn't get over their depressive illness--which had blighted

their young lives--until they had good psychiatric care: therapy AND

antidepressants, and now they had been productive and happy for

years. I was inspired by their courage in talking to candidly.

On Jan 19, 2008, at 11:39 AM, rhondagoebel wrote:

> To me, this sounds like blaming the person with the illness, shaming

> them for 'choosing' the 'bad' feeling. We get too much of that from

> others who don't truly understand, or who are uncomfortable allowing

> others space and rights to be who they truly are, to feel how they

> truly feel.

>

> It's ok to be sad. To feel sad, happy, mad, etc. is to be fully

> human. True supporters accept your feelings, all your feelings.

> They listen and try to understand.

>

> Your intentions are obviously pure. I just want people to know this

> is a space where they are truly accepted as they are.

>

> Hi lynne

> > >

> > > As you know my Dr. prscribed Medrol 2 mg 4 days a week

> > > to lower my inflammation. my ESR is high 120.

> > > I thought it is not a bad idea because i read high

> > > inflammtion doesn't allow minocin to penetrate cells.

> > > anyway last nightI took my first medrol and I got up

> > > with less pain and less stiffness. My hands are no

> > > puffy right now. wow I didn't know a low dose of

> > > steroid can make a big difference. I don't like to

> > > take steroid because of side effects. my Dr. also

> > > doesn't like it. I am going to take it only 3 days a

> > > week. I hope it helps me to put on some weight.

> > > what do you think?

> > > By the way you do lots of work. I couldn't do such

> > > amonth of work even when I was healthy. like you I

> > > always followed a healthy diet, did excersize. no

> > > smoking and drinking but I was not a happy person.

> > > I didn't realize the most important thing is my

> > > health.

> > >

> > > enjoy the weekend

> > >

> > > soheila

> > >

> > > __________________________________________________________

> > > Looking for last minute shopping deals?

> > > Find them fast with Search.

> > http://tools.search./newsearch/category.php?

> > category=shopping

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Looking for last minute shopping deals? Find them fast with

> > Search.

> > >

> > >

[Guest guest]

Hello Rhonda, This is really good. You are angry at insensitive people and

letting loose.

When you are angy and talking about it, it is healthy. The world does not

know how we feel with these diseases, Only we who have been through it can

empathize. Yes, I learned about empathy in nursing school. I knew what the

word meant, but what I didn't know was what it felt like until I got sick. I,

too have had my ups and downs. My own mother blamed me for my scleroderma.

When I told her I ached from R/A, she said that she can always tell when it's

going to rain because she gets a pain too. Then she blamed it on me because I'm

the one that found her the apartment she wanted, but now says she wants to move

again. In the last ten years, I have moved her at least ten times. She always

ends up in a fight with someone. You see, my mom is a chronically depressed

person and it's because of her that I learned to do the opposite. After much

therapy, I was told to just let go of my mother as she was detrimental to my

health. It was then that I realized that I may be

detrimental to other peoples health, so I took the other road. And that's when

I made my choice. It has worked. Who am I to argue with success. I'm glad you

are angry with insenstitive people. That means that you expected them to be

sensitive. Why? Why should they be sensitive?

That person who said you should roll over and die, stirred up something in

your soul. You've got the fight. Good! I'm glad! Your emotions are on the

table. Let's play! Ok! you are depressed. Do you know when you are depressed to

the point where it is harming your immune system? That's a yes or a no answer.

Do you want to stay there? Also a yes or no answer. Do you feel powerful

enough to want to break the cycle? Another yes or no answer. If yes, have you

learned to harness that power? If no, do you want to get that empowerment? I'm

telling you you can. You're angry and half way there. How much do you value

life? That's an objective question? Some, little, none, much! Where do you

want to go with this? Would you like to punch that guy in the eye? Do you feel

he is ignorant? Has he lost his feelings toward people? Is he unsympathetic?

Or just a moron? Would you rather be in his shoes? Probably not! Either feel

sorry for him or ignore him as he isn't

worthy of your emotion. You can get rid of anger and hate that way. Thoughts

are tunnels that we can crawl our way out of. If you got the impression that I

have a permanent smile on my face like that unhappy clown Pallachi, it is not

true. I worked hard at knocking down depression because I view those states as

poles I must knock down because they were detrimental to the healing of my

immune system. Yes, I take a valium now and then to calm me down and take away

the pain. But those times are getting fewer and farther apart. Then when I got

rid of the things in my life that got me down, I started thinking about the

things that would lift me up. I painted a few pictures. I wrote some poems

which got published and I received awards for them. I went hiking. snoreling and

many things I dreamt of all my life, but never attempted. I bloomed. I became

a volunteer which took me places I'v never been. I am on the committee for the

walkathon. Have a video of the

accomplishments, not only I, but all the other S/D people I work with have

doen. I'm a writer. I am writing a book. I want to provoke controversy. I

want people to disagree with me and tell me why. I want them to fight back, I

want to induce awareness. You made my day! I want you for a friend. I

understand you. Get angry and hit me with your best shot. You're great and you

will be fine.~~~~ Dolores

rhondagoebel <rhondagoebel@...> wrote:

The lesson I've learned the hard way is when people don't listen,

don't believe, don't support me with this illness, our relationship

is jeopardized. Scleroderma is not just testing me, it's testing my

family & friends, and only a handful are passing the test.

I recently was telling a long-term friend how expensive Minocin and

my supplements are. He replied that I should take the generic,

there's no difference. He quickly refuted me with 'science' when I

tried to explain, ending it with a shameful " Well, it's your

choice " . Later in the conversation I was telling him how I've felt

so lost since I became sick. He said I should just 'laugh it off',

and that I'm starting to sound like his grandmother. I felt totally

unheard, and said I had to get off the phone to work on finding

cheaper ways to get meds. He replied that if he were me, he would

just give up & die because that's his life philosophy, to let nature

take its course.

I never would have guessed how insensitive people can be until my

dx. A true friend with good communication skills would have asked

me more questions, let me talk it out and let me know that he really

hears me. Would have offered on-point support, helped me brainstorm

solutions, just been on my side. If he was uncomfortable with

my 'negative' feelings, they would have passed naturally had he

taken a helpful role, instead of throwing out his surface level

advice.

Since my dx I've lost so many relationships over insensitivities.

Our entire culture seems to be needing lessons in empathy and

communication & especially listening skills.

Since everyone in these forums is in the same boat, that's the one

thing I feel we can count on one another for, shared understanding.

These forums keep me functioning emotionally. These forums are an

essential component to my physical and emotional health.

I don't post often, but I read every post, and every post makes me

more knowledgable, and stronger. I feel somehow bonded with you all

in this magical electronic world. What the heck did people like us

do before this electronic medium?

Hi lynne

> > > >

> > > > As you know my Dr. prscribed Medrol 2 mg 4 days a week

> > > > to lower my inflammation. my ESR is high 120.

> > > > I thought it is not a bad idea because i read high

> > > > inflammtion doesn't allow minocin to penetrate cells.

> > > > anyway last nightI took my first medrol and I got up

> > > > with less pain and less stiffness. My hands are no

> > > > puffy right now. wow I didn't know a low dose of

> > > > steroid can make a big difference. I don't like to

> > > > take steroid because of side effects. my Dr. also

> > > > doesn't like it. I am going to take it only 3 days a

> > > > week. I hope it helps me to put on some weight.

> > > > what do you think?

> > > > By the way you do lots of work. I couldn't do such

> > > > amonth of work even when I was healthy. like you I

> > > > always followed a healthy diet, did excersize. no

> > > > smoking and drinking but I was not a happy person.

> > > > I didn't realize the most important thing is my

> > > > health.

> > > >

> > > > enjoy the weekend

> > > >

> > > > soheila

> > > >

> > > > __________________________________________________________

> > > > Looking for last minute shopping deals?

> > > > Find them fast with Search.

> > > http://tools.search./newsearch/category.php?

> > > category=shopping

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

> > > Search.

> > > >

> > > >

[Guest guest]

Rhonda,

You are so right. I have lost so many " friends " and family doesn't get it

either. I too think the part that hurts more than anything is nobody, nobody has

taken the time to ask me or as you say brainstorm with me. I go to the doctors

always alone and no matter how bad I feel have soildered on without asking

anyone for anything. On top of that they know I don't like to complain so again

nobody asks. Had I been the squeaky whining wheel all my life I would be getting

boatloads of sympathy. And really sympathy isn't even what I want, I want people

to listen and to respect the severity of the disease that I have instead of just

acting like I should put a little Ben Gay on it like they do on their arthritic

knee. I find that I have just retreated from almost everyone. I must worry about

my health and I find most of these people are not helping that situation.

Sue

rheumatic Re: Depression in Chronic Illnesses!

The lesson I've learned the hard way is when people don't listen,

don't believe, don't support me with this illness, our relationship

is jeopardized. Scleroderma is not just testing me, it's testing my

family & friends, and only a handful are passing the test.

I recently was telling a long-term friend how expensive Minocin and

my supplements are. He replied that I should take the generic,

there's no difference. He quickly refuted me with 'science' when I

tried to explain, ending it with a shameful " Well, it's your

choice " . Later in the conversation I was telling him how I've felt

so lost since I became sick. He said I should just 'laugh it off',

and that I'm starting to sound like his grandmother. I felt totally

unheard, and said I had to get off the phone to work on finding

cheaper ways to get meds. He replied that if he were me, he would

just give up & die because that's his life philosophy, to let nature

take its course.

I never would have guessed how insensitive people can be until my

dx. A true friend with good communication skills would have asked

me more questions, let me talk it out and let me know that he really

hears me. Would have offered on-point support, helped me brainstorm

solutions, just been on my side. If he was uncomfortable with

my 'negative' feelings, they would have passed naturally had he

taken a helpful role, instead of throwing out his surface level

advice.

Since my dx I've lost so many relationships over insensitivities.

Our entire culture seems to be needing lessons in empathy and

communication & especially listening skills.

Since everyone in these forums is in the same boat, that's the one

thing I feel we can count on one another for, shared understanding.

These forums keep me functioning emotionally. These forums are an

essential component to my physical and emotional health.

I don't post often, but I read every post, and every post makes me

more knowledgable, and stronger. I feel somehow bonded with you all

in this magical electronic world. What the heck did people like us

do before this electronic medium?

Hi lynne

> > > >

> > > > As you know my Dr. prscribed Medrol 2 mg 4 days a week

> > > > to lower my inflammation. my ESR is high 120.

> > > > I thought it is not a bad idea because i read high

> > > > inflammtion doesn't allow minocin to penetrate cells.

> > > > anyway last nightI took my first medrol and I got up

> > > > with less pain and less stiffness. My hands are no

> > > > puffy right now. wow I didn't know a low dose of

> > > > steroid can make a big difference. I don't like to

> > > > take steroid because of side effects. my Dr. also

> > > > doesn't like it. I am going to take it only 3 days a

> > > > week. I hope it helps me to put on some weight.

> > > > what do you think?

> > > > By the way you do lots of work. I couldn't do such

> > > > amonth of work even when I was healthy. like you I

> > > > always followed a healthy diet, did excersize. no

> > > > smoking and drinking but I was not a happy person.

> > > > I didn't realize the most important thing is my

> > > > health.

> > > >

> > > > enjoy the weekend

> > > >

> > > > soheila

> > > >

> > > > __________________________________________________________

> > > > Looking for last minute shopping deals?

> > > > Find them fast with Search.

> > > http://tools.search./newsearch/category.php?

> > > category=shopping

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

> > > Search.

> > > >

> > > >

[Guest guest]

Hello ladies, I'm reading and I hear you and I'm exposing this. It's true.

They think we are hypochondriacs. We suffer in silence. I've been doodlng with

that idea as a title for the book. I painted a gayly painted lady with a sad

eyes and no mouth to be put on the cover of the book. I took it to the

printer's. They shrunk it for the cover and they liked it. I'm bringing out

everything I hear and read. I deal with the same things you deal with everyday.

It's time to get it out there and on the table. Let's talk about it. Let's not

remain silent any longer. Any others out there have an opinion, c'mon say

something. We all want others to know how it feels to be chronically ill and

alone with our thoughts. This is what support is about. Let's hear some more

from more of you. ~~~~~Dolores & Mike

Sue Emrick <semrick@...> wrote: Rhonda,

You are so right. I have lost so many " friends " and family doesn't get it

either. I too think the part that hurts more than anything is nobody, nobody has

taken the time to ask me or as you say brainstorm with me. I go to the doctors

always alone and no matter how bad I feel have soildered on without asking

anyone for anything. On top of that they know I don't like to complain so again

nobody asks. Had I been the squeaky whining wheel all my life I would be getting

boatloads of sympathy. And really sympathy isn't even what I want, I want people

to listen and to respect the severity of the disease that I have instead of just

acting like I should put a little Ben Gay on it like they do on their arthritic

knee. I find that I have just retreated from almost everyone. I must worry about

my health and I find most of these people are not helping that situation.

Sue

rheumatic Re: Depression in Chronic Illnesses!

The lesson I've learned the hard way is when people don't listen,

don't believe, don't support me with this illness, our relationship

is jeopardized. Scleroderma is not just testing me, it's testing my

family & friends, and only a handful are passing the test.

I recently was telling a long-term friend how expensive Minocin and

my supplements are. He replied that I should take the generic,

there's no difference. He quickly refuted me with 'science' when I

tried to explain, ending it with a shameful " Well, it's your

choice " . Later in the conversation I was telling him how I've felt

so lost since I became sick. He said I should just 'laugh it off',

and that I'm starting to sound like his grandmother. I felt totally

unheard, and said I had to get off the phone to work on finding

cheaper ways to get meds. He replied that if he were me, he would

just give up & die because that's his life philosophy, to let nature

take its course.

I never would have guessed how insensitive people can be until my

dx. A true friend with good communication skills would have asked

me more questions, let me talk it out and let me know that he really

hears me. Would have offered on-point support, helped me brainstorm

solutions, just been on my side. If he was uncomfortable with

my 'negative' feelings, they would have passed naturally had he

taken a helpful role, instead of throwing out his surface level

advice.

Since my dx I've lost so many relationships over insensitivities.

Our entire culture seems to be needing lessons in empathy and

communication & especially listening skills.

Since everyone in these forums is in the same boat, that's the one

thing I feel we can count on one another for, shared understanding.

These forums keep me functioning emotionally. These forums are an

essential component to my physical and emotional health.

I don't post often, but I read every post, and every post makes me

more knowledgable, and stronger. I feel somehow bonded with you all

in this magical electronic world. What the heck did people like us

do before this electronic medium?

Hi lynne

> > > >

> > > > As you know my Dr. prscribed Medrol 2 mg 4 days a week

> > > > to lower my inflammation. my ESR is high 120.

> > > > I thought it is not a bad idea because i read high

> > > > inflammtion doesn't allow minocin to penetrate cells.

> > > > anyway last nightI took my first medrol and I got up

> > > > with less pain and less stiffness. My hands are no

> > > > puffy right now. wow I didn't know a low dose of

> > > > steroid can make a big difference. I don't like to

> > > > take steroid because of side effects. my Dr. also

> > > > doesn't like it. I am going to take it only 3 days a

> > > > week. I hope it helps me to put on some weight.

> > > > what do you think?

> > > > By the way you do lots of work. I couldn't do such

> > > > amonth of work even when I was healthy. like you I

> > > > always followed a healthy diet, did excersize. no

> > > > smoking and drinking but I was not a happy person.

> > > > I didn't realize the most important thing is my

> > > > health.

> > > >

> > > > enjoy the weekend

> > > >

> > > > soheila

> > > >

> > > > __________________________________________________________

> > > > Looking for last minute shopping deals?

> > > > Find them fast with Search.

> > > http://tools.search./newsearch/category.php?

> > > category=shopping

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

> > > Search.

> > > >

> > > >

[Guest guest]

Sue -

It's hard to be alone at a time when we need support the most. Do you have

anyone you would feel comfortable asking to be there more for you more? There

have been times I have played the role of the ignorant person, but I would have

responded if a friend or family member took me aside to explain & asked for

help, at least I hope I would have.

I can really relate to retreating away from relationships. When my

'friendships' get to a point where I don't feel comfortable discussing my health

when it's heavy on my mind because I've grown accustomed to inappropriate or

inadequate responses, or when the insensitivities become so glaringly obvious

that they can no longer be ignored, I realize the significance of the friendship

I am loosing, but also realize I have no choice.

The antidote is building more supportive friendships, but making friends when

you're sick has its own set of challenges. For compatibility, I try to build

friendships with other vegans, or at least vegetarians. But now I have the

extra element of finding people who have special empathy, effective

communication skills, and commitment for someone who is sick. This is difficult

to screen for, especially in the beginning of a friendship when talking about a

sickness too much doesn't feel appropriate.

I've thought about going to a local scleroderma foundation support group

meeting to make friends who understand where I'm coming from. We could be a

mutual support for one another. But we have the extra element of AP. This

seems like such a divisive issue that could be conflictuous and take lots of

time & energy for non-AP believers to appreciate (I assume that everyone with

scleroderma has learned of AP online doing research, and has chosen either the

scleroderma foundation path or the AP path). I envision loggerheads, and I

don't have the time & motivation to prepare for possible battle (I'm still too

busy battling mainstream doctors!) so I just stick to these online AP forums.

Lacks the in-person human component, which is huge, but still meets an important

part of my needs.

If you ever want to discuss your health, or brainstorm together, I'm not the

most knowledgable, but please add me to your list of email buddies.

Sue Emrick <semrick@...> wrote:

Rhonda,

You are so right. I have lost so many " friends " and family doesn't get it

either. I too think the part that hurts more than anything is nobody, nobody has

taken the time to ask me or as you say brainstorm with me. I go to the doctors

always alone and no matter how bad I feel have soildered on without asking

anyone for anything. On top of that they know I don't like to complain so again

nobody asks. Had I been the squeaky whining wheel all my life I would be getting

boatloads of sympathy. And really sympathy isn't even what I want, I want people

to listen and to respect the severity of the disease that I have instead of just

acting like I should put a little Ben Gay on it like they do on their arthritic

knee. I find that I have just retreated from almost everyone. I must worry about

my health and I find most of these people are not helping that situation.

Sue

rheumatic Re: Depression in Chronic Illnesses!

The lesson I've learned the hard way is when people don't listen,

don't believe, don't support me with this illness, our relationship

is jeopardized. Scleroderma is not just testing me, it's testing my

family & friends, and only a handful are passing the test.

I recently was telling a long-term friend how expensive Minocin and

my supplements are. He replied that I should take the generic,

there's no difference. He quickly refuted me with 'science' when I

tried to explain, ending it with a shameful " Well, it's your

choice " . Later in the conversation I was telling him how I've felt

so lost since I became sick. He said I should just 'laugh it off',

and that I'm starting to sound like his grandmother. I felt totally

unheard, and said I had to get off the phone to work on finding

cheaper ways to get meds. He replied that if he were me, he would

just give up & die because that's his life philosophy, to let nature

take its course.

I never would have guessed how insensitive people can be until my

dx. A true friend with good communication skills would have asked

me more questions, let me talk it out and let me know that he really

hears me. Would have offered on-point support, helped me brainstorm

solutions, just been on my side. If he was uncomfortable with

my 'negative' feelings, they would have passed naturally had he

taken a helpful role, instead of throwing out his surface level

advice.

Since my dx I've lost so many relationships over insensitivities.

Our entire culture seems to be needing lessons in empathy and

communication & especially listening skills.

Since everyone in these forums is in the same boat, that's the one

thing I feel we can count on one another for, shared understanding.

These forums keep me functioning emotionally. These forums are an

essential component to my physical and emotional health.

I don't post often, but I read every post, and every post makes me

more knowledgable, and stronger. I feel somehow bonded with you all

in this magical electronic world. What the heck did people like us

do before this electronic medium?

Hi lynne

> > > >

> > > > As you know my Dr. prscribed Medrol 2 mg 4 days a week

> > > > to lower my inflammation. my ESR is high 120.

> > > > I thought it is not a bad idea because i read high

> > > > inflammtion doesn't allow minocin to penetrate cells.

> > > > anyway last nightI took my first medrol and I got up

> > > > with less pain and less stiffness. My hands are no

> > > > puffy right now. wow I didn't know a low dose of

> > > > steroid can make a big difference. I don't like to

> > > > take steroid because of side effects. my Dr. also

> > > > doesn't like it. I am going to take it only 3 days a

> > > > week. I hope it helps me to put on some weight.

> > > > what do you think?

> > > > By the way you do lots of work. I couldn't do such

> > > > amonth of work even when I was healthy. like you I

> > > > always followed a healthy diet, did excersize. no

> > > > smoking and drinking but I was not a happy person.

> > > > I didn't realize the most important thing is my

> > > > health.

> > > >

> > > > enjoy the weekend

> > > >

> > > > soheila

> > > >

> > > > __________________________________________________________

> > > > Looking for last minute shopping deals?

> > > > Find them fast with Search.

> > > http://tools.search./newsearch/category.php?

> > > category=shopping

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

> > > Search.

> > > >

> > > >

[Guest guest]

I seem to be blessed with people that really care. One of my friends took me to

the clinic every time I had chemo and sat with me for the time I had the

infusion. Other friends have come and cleaned my home and cooked for me. I have

friends that call me and inquire how I feel, but in the some way, I have done

the same for my friends when they where ill. I have been able to cry on their

shoulders and explained to them how I fell. I Have printed out info on my

illness and given this to them so they know even so, I look okay I still can

feel very bad. I have to rest a lot and my neighbor comes once a week and

vacuums my house, which is a blessing.

Right now they are concerned that this new treatment may not be right, but I

convinced them that lots and lots of people have gone through this treatment and

feel great,

So please think of me on Monday when I see this Doctor in east Texas.

Eva

Rhonda Goebel <rhondagoebel@...> wrote:

Sue -

It's hard to be alone at a time when we need support the most. Do you have

anyone you would feel comfortable asking to be there more for you more? There

have been times I have played the role of the ignorant person, but I would have

responded if a friend or family member took me aside to explain & asked for

help, at least I hope I would have.

I can really relate to retreating away from relationships. When my 'friendships'

get to a point where I don't feel comfortable discussing my health when it's

heavy on my mind because I've grown accustomed to inappropriate or inadequate

responses, or when the insensitivities become so glaringly obvious that they can

no longer be ignored, I realize the significance of the friendship I am loosing,

but also realize I have no choice.

The antidote is building more supportive friendships, but making friends when

you're sick has its own set of challenges. For compatibility, I try to build

friendships with other vegans, or at least vegetarians. But now I have the extra

element of finding people who have special empathy, effective communication

skills, and commitment for someone who is sick. This is difficult to screen for,

especially in the beginning of a friendship when talking about a sickness too

much doesn't feel appropriate.

I've thought about going to a local scleroderma foundation support group meeting

to make friends who understand where I'm coming from. We could be a mutual

support for one another. But we have the extra element of AP. This seems like

such a divisive issue that could be conflictuous and take lots of time & energy

for non-AP believers to appreciate (I assume that everyone with scleroderma has

learned of AP online doing research, and has chosen either the scleroderma

foundation path or the AP path). I envision loggerheads, and I don't have the

time & motivation to prepare for possible battle (I'm still too busy battling

mainstream doctors!) so I just stick to these online AP forums. Lacks the

in-person human component, which is huge, but still meets an important part of

my needs.

If you ever want to discuss your health, or brainstorm together, I'm not the

most knowledgable, but please add me to your list of email buddies.

Sue Emrick <semrick@...> wrote:

Rhonda,

You are so right. I have lost so many " friends " and family doesn't get it

either. I too think the part that hurts more than anything is nobody, nobody has

taken the time to ask me or as you say brainstorm with me. I go to the doctors

always alone and no matter how bad I feel have soildered on without asking

anyone for anything. On top of that they know I don't like to complain so again

nobody asks. Had I been the squeaky whining wheel all my life I would be getting

boatloads of sympathy. And really sympathy isn't even what I want, I want people

to listen and to respect the severity of the disease that I have instead of just

acting like I should put a little Ben Gay on it like they do on their arthritic

knee. I find that I have just retreated from almost everyone. I must worry about

my health and I find most of these people are not helping that situation.

Sue

rheumatic Re: Depression in Chronic Illnesses!

The lesson I've learned the hard way is when people don't listen,

don't believe, don't support me with this illness, our relationship

is jeopardized. Scleroderma is not just testing me, it's testing my

family & friends, and only a handful are passing the test.

I recently was telling a long-term friend how expensive Minocin and

my supplements are. He replied that I should take the generic,

there's no difference. He quickly refuted me with 'science' when I

tried to explain, ending it with a shameful " Well, it's your

choice " . Later in the conversation I was telling him how I've felt

so lost since I became sick. He said I should just 'laugh it off',

and that I'm starting to sound like his grandmother. I felt totally

unheard, and said I had to get off the phone to work on finding

cheaper ways to get meds. He replied that if he were me, he would

just give up & die because that's his life philosophy, to let nature

take its course.

I never would have guessed how insensitive people can be until my

dx. A true friend with good communication skills would have asked

me more questions, let me talk it out and let me know that he really

hears me. Would have offered on-point support, helped me brainstorm

solutions, just been on my side. If he was uncomfortable with

my 'negative' feelings, they would have passed naturally had he

taken a helpful role, instead of throwing out his surface level

advice.

Since my dx I've lost so many relationships over insensitivities.

Our entire culture seems to be needing lessons in empathy and

communication & especially listening skills.

Since everyone in these forums is in the same boat, that's the one

thing I feel we can count on one another for, shared understanding.

These forums keep me functioning emotionally. These forums are an

essential component to my physical and emotional health.

I don't post often, but I read every post, and every post makes me

more knowledgable, and stronger. I feel somehow bonded with you all

in this magical electronic world. What the heck did people like us

do before this electronic medium?

Hi lynne

> > > >

> > > > As you know my Dr. prscribed Medrol 2 mg 4 days a week

> > > > to lower my inflammation. my ESR is high 120.

> > > > I thought it is not a bad idea because i read high

> > > > inflammtion doesn't allow minocin to penetrate cells.

> > > > anyway last nightI took my first medrol and I got up

> > > > with less pain and less stiffness. My hands are no

> > > > puffy right now. wow I didn't know a low dose of

> > > > steroid can make a big difference. I don't like to

> > > > take steroid because of side effects. my Dr. also

> > > > doesn't like it. I am going to take it only 3 days a

> > > > week. I hope it helps me to put on some weight.

> > > > what do you think?

> > > > By the way you do lots of work. I couldn't do such

> > > > amonth of work even when I was healthy. like you I

> > > > always followed a healthy diet, did excersize. no

> > > > smoking and drinking but I was not a happy person.

> > > > I didn't realize the most important thing is my

> > > > health.

> > > >

> > > > enjoy the weekend

> > > >

> > > > soheila

> > > >

> > > > __________________________________________________________

> > > > Looking for last minute shopping deals?

> > > > Find them fast with Search.

> > > http://tools.search./newsearch/category.php?

> > > category=shopping

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

> > > Search.

> > > >

> > > >

[Guest guest]

Hi Eva, Rhonda, Sue, , Soheila, Lynne. There are six or more of us in this

discussion.

I think it is wonderful that we are able to voice our feelings, emotions and

reactions to the subject of depression. This symptom is often overlooked and

one of the most to get hurt feelings about. I have a very close friend who told

me, " Dolores, I don't see you as a disease, I see you as a friend who has a

disease and you know I will do anything for you! "

" But, I don't want you to define yourself as a disease! " You are so much more

than this disease. " You've have come through so much more and you will come

through this too! "

She was right, I am a cancer survivor! My husband had two strokes at the age

of 44 and had his foot amputated from 5 inch blood clot that blocked the blood

flow from his groin to his foot. At the same time, they removed his spleen and

they tore his pancreas during the surgery. Two months later, he developed

pancreatitis and needed to get the infection drained. They put tubes into it and

the poison drained for the next four months. We stayed at the hospital for 10

months. They fed him through a Hickman catheter in his chest. Then we got start

on occupational, and physical therapies. They did not expect him to survive. It

took six more years of hard work to get him functioning again. I was told I was

a basketcase. Don't know how I survived. We lost our home, car, bank account,

and everything we had. We kept the motorhome and moved into it as we had no

income and had to live at a state park. They hired us on as camp hosts. We sold

firewood, picked up after

campers collected cans for food money and notified the rangers of any danger.

We checked for rattlesnakes and dealt with bees. We were hired for 3 months.

They were so pleased with us, they asked us to stay on for 6 months. Meanwhile,

my husband was gaining strength. Today you would not know he was ever sick.

When I got sick, he took care of me. We did not look to friends or family.

They did not understand and somehow I understood that. The feelings were so

deep, we could not express them. My mother in law told me to put my husband in

a nursing home. I was aghast. My mother had the same reaction. My husband and

I are both survivors. My new friends tell people, there is a couple we know

whom God truly gave lemons to and they made lemonade. I know you all thought I

was flip when I said smile, it is contagious and your immune system will heal.

I'm talking from experience and not being flip. I have met the devil and it's

name is Scleroderma. My husband has met

the same devil in a different disguise, and so have you all. Don't allow it to

take away your fiber, your being, your essence, your thunder. And don't expect

people to understand. Unless, they have stood in your shoes, they never will.

To the person who is afraid of finding support in an S/D foundation group.

Don't stay away. I go with periodicals in hand, the newest in A/P, and the

trials that are ongoing. We have had great discussions and many conversions.

Because of the forums, I attend, I get to speak to doctors, researchers. and

scientists. I speak to Pharmaceutical reps. If I didn't go and speak on behalf

of the " The Infectious Theory " and the " Antibiotic Protocol " and show them how

well I'm doing, they would never know. I've met people there who don't have

scleroderma, but have lost loved ones due to the disease. They are in need.

There are people who are there because they are the support person for a sister,

mother, friend. They are in need. Some come there with amputated fingers.

They are in need. We can either be part of the problem or part of the solution.

Again it comes down to choice. Give and you shall receive. When you have

received, then give some more. You'll be amazed

at how good that feels. I can feel the healing every time. Remember that old

story. I cried because I had no shoes, till I met a man who had no feet!

Eva, You've got great friends. Truly a gift because you have given. You have

learned the wonderfulness of give and take. You've learned how to receive,

which is harder than giving. In the end that is where compassion and empathy is

born. Good luck to you. P.S. Send your friends to my house. It could use a

good scrubbing. Thank you for the smile.

Love to all ~~~~~And happy healthy healing in the New Year~~ Will send good

thoughts for you on Monday. Stay in touch!~~~~~~~Dolores

Eva Holloway <holloway-eva@...> wrote:

I seem to be blessed with people that really care. One of my friends

took me to the clinic every time I had chemo and sat with me for the time I had

the infusion. Other friends have come and cleaned my home and cooked for me. I

have friends that call me and inquire how I feel, but in the some way, I have

done the same for my friends when they where ill. I have been able to cry on

their shoulders and explained to them how I fell. I Have printed out info on my

illness and given this to them so they know even so, I look okay I still can

feel very bad. I have to rest a lot and my neighbor comes once a week and

vacuums my house, which is a blessing.

Right now they are concerned that this new treatment may not be right, but I

convinced them that lots and lots of people have gone through this treatment and

feel great,

So please think of me on Monday when I see this Doctor in east Texas.

Eva

Rhonda Goebel <rhondagoebel@...> wrote:

Sue -

It's hard to be alone at a time when we need support the most. Do you have

anyone you would feel comfortable asking to be there more for you more? There

have been times I have played the role of the ignorant person, but I would have

responded if a friend or family member took me aside to explain & asked for

help, at least I hope I would have.

I can really relate to retreating away from relationships. When my 'friendships'

get to a point where I don't feel comfortable discussing my health when it's

heavy on my mind because I've grown accustomed to inappropriate or inadequate

responses, or when the insensitivities become so glaringly obvious that they can

no longer be ignored, I realize the significance of the friendship I am loosing,

but also realize I have no choice.

The antidote is building more supportive friendships, but making friends when

you're sick has its own set of challenges. For compatibility, I try to build

friendships with other vegans, or at least vegetarians. But now I have the extra

element of finding people who have special empathy, effective communication

skills, and commitment for someone who is sick. This is difficult to screen for,

especially in the beginning of a friendship when talking about a sickness too

much doesn't feel appropriate.

I've thought about going to a local scleroderma foundation support group meeting

to make friends who understand where I'm coming from. We could be a mutual

support for one another. But we have the extra element of AP. This seems like

such a divisive issue that could be conflictuous and take lots of time & energy

for non-AP believers to appreciate (I assume that everyone with scleroderma has

learned of AP online doing research, and has chosen either the scleroderma

foundation path or the AP path). I envision loggerheads, and I don't have the

time & motivation to prepare for possible battle (I'm still too busy battling

mainstream doctors!) so I just stick to these online AP forums. Lacks the

in-person human component, which is huge, but still meets an important part of

my needs.

If you ever want to discuss your health, or brainstorm together, I'm not the

most knowledgable, but please add me to your list of email buddies.

Sue Emrick <semrick@...> wrote:

Rhonda,

You are so right. I have lost so many " friends " and family doesn't get it

either. I too think the part that hurts more than anything is nobody, nobody has

taken the time to ask me or as you say brainstorm with me. I go to the doctors

always alone and no matter how bad I feel have soildered on without asking

anyone for anything. On top of that they know I don't like to complain so again

nobody asks. Had I been the squeaky whining wheel all my life I would be getting

boatloads of sympathy. And really sympathy isn't even what I want, I want people

to listen and to respect the severity of the disease that I have instead of just

acting like I should put a little Ben Gay on it like they do on their arthritic

knee. I find that I have just retreated from almost everyone. I must worry about

my health and I find most of these people are not helping that situation.

Sue

rheumatic Re: Depression in Chronic Illnesses!

The lesson I've learned the hard way is when people don't listen,

don't believe, don't support me with this illness, our relationship

is jeopardized. Scleroderma is not just testing me, it's testing my

family & friends, and only a handful are passing the test.

I recently was telling a long-term friend how expensive Minocin and

my supplements are. He replied that I should take the generic,

there's no difference. He quickly refuted me with 'science' when I

tried to explain, ending it with a shameful " Well, it's your

choice " . Later in the conversation I was telling him how I've felt

so lost since I became sick. He said I should just 'laugh it off',

and that I'm starting to sound like his grandmother. I felt totally

unheard, and said I had to get off the phone to work on finding

cheaper ways to get meds. He replied that if he were me, he would

just give up & die because that's his life philosophy, to let nature

take its course.

I never would have guessed how insensitive people can be until my

dx. A true friend with good communication skills would have asked

me more questions, let me talk it out and let me know that he really

hears me. Would have offered on-point support, helped me brainstorm

solutions, just been on my side. If he was uncomfortable with

my 'negative' feelings, they would have passed naturally had he

taken a helpful role, instead of throwing out his surface level

advice.

Since my dx I've lost so many relationships over insensitivities.

Our entire culture seems to be needing lessons in empathy and

communication & especially listening skills.

Since everyone in these forums is in the same boat, that's the one

thing I feel we can count on one another for, shared understanding.

These forums keep me functioning emotionally. These forums are an

essential component to my physical and emotional health.

I don't post often, but I read every post, and every post makes me

more knowledgable, and stronger. I feel somehow bonded with you all

in this magical electronic world. What the heck did people like us

do before this electronic medium?

Hi lynne

> > > >

> > > > As you know my Dr. prscribed Medrol 2 mg 4 days a week

> > > > to lower my inflammation. my ESR is high 120.

> > > > I thought it is not a bad idea because i read high

> > > > inflammtion doesn't allow minocin to penetrate cells.

> > > > anyway last nightI took my first medrol and I got up

> > > > with less pain and less stiffness. My hands are no

> > > > puffy right now. wow I didn't know a low dose of

> > > > steroid can make a big difference. I don't like to

> > > > take steroid because of side effects. my Dr. also

> > > > doesn't like it. I am going to take it only 3 days a

> > > > week. I hope it helps me to put on some weight.

> > > > what do you think?

> > > > By the way you do lots of work. I couldn't do such

> > > > amonth of work even when I was healthy. like you I

> > > > always followed a healthy diet, did excersize. no

> > > > smoking and drinking but I was not a happy person.

> > > > I didn't realize the most important thing is my

> > > > health.

> > > >

> > > > enjoy the weekend

> > > >

> > > > soheila

> > > >

> > > > __________________________________________________________

> > > > Looking for last minute shopping deals?

> > > > Find them fast with Search.

> > > http://tools.search./newsearch/category.php?

> > > category=shopping

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

> > > Search.

> > > >

> > > >

[Guest guest]

Eva, I will think of you. It is wonderful to hear about the support

you get from your friends.

On Jan 19, 2008, at 10:03 PM, Eva Holloway wrote:

> I seem to be blessed with people that really care. One of my

> friends took me to the clinic every time I had chemo and sat with

> me for the time I had the infusion. Other friends have come and

> cleaned my home and cooked for me. I have friends that call me and

> inquire how I feel, but in the some way, I have done the same for

> my friends when they where ill. I have been able to cry on their

> shoulders and explained to them how I fell. I Have printed out info

> on my illness and given this to them so they know even so, I look

> okay I still can feel very bad. I have to rest a lot and my

> neighbor comes once a week and vacuums my house, which is a blessing.

> Right now they are concerned that this new treatment may not be

> right, but I convinced them that lots and lots of people have gone

> through this treatment and feel great,

> So please think of me on Monday when I see this Doctor in east Texas.

>

> Eva

>

> Rhonda Goebel <rhondagoebel@...> wrote:

> Sue -

>

> It's hard to be alone at a time when we need support the most. Do

> you have anyone you would feel comfortable asking to be there more

> for you more? There have been times I have played the role of the

> ignorant person, but I would have responded if a friend or family

> member took me aside to explain & asked for help, at least I hope I

> would have.

>

> I can really relate to retreating away from relationships. When my

> 'friendships' get to a point where I don't feel comfortable

> discussing my health when it's heavy on my mind because I've grown

> accustomed to inappropriate or inadequate responses, or when the

> insensitivities become so glaringly obvious that they can no longer

> be ignored, I realize the significance of the friendship I am

> loosing, but also realize I have no choice.

>

> The antidote is building more supportive friendships, but making

> friends when you're sick has its own set of challenges. For

> compatibility, I try to build friendships with other vegans, or at

> least vegetarians. But now I have the extra element of finding

> people who have special empathy, effective communication skills,

> and commitment for someone who is sick. This is difficult to screen

> for, especially in the beginning of a friendship when talking about

> a sickness too much doesn't feel appropriate.

>

> I've thought about going to a local scleroderma foundation support

> group meeting to make friends who understand where I'm coming from.

> We could be a mutual support for one another. But we have the extra

> element of AP. This seems like such a divisive issue that could be

> conflictuous and take lots of time & energy for non-AP believers to

> appreciate (I assume that everyone with scleroderma has learned of

> AP online doing research, and has chosen either the scleroderma

> foundation path or the AP path). I envision loggerheads, and I

> don't have the time & motivation to prepare for possible battle

> (I'm still too busy battling mainstream doctors!) so I just stick

> to these online AP forums. Lacks the in-person human component,

> which is huge, but still meets an important part of my needs.

>

> If you ever want to discuss your health, or brainstorm together,

> I'm not the most knowledgable, but please add me to your list of

> email buddies.

>

> Sue Emrick <semrick@...> wrote:

> Rhonda,

>

> You are so right. I have lost so many " friends " and family doesn't

> get it either. I too think the part that hurts more than anything

> is nobody, nobody has taken the time to ask me or as you say

> brainstorm with me. I go to the doctors always alone and no matter

> how bad I feel have soildered on without asking anyone for

> anything. On top of that they know I don't like to complain so

> again nobody asks. Had I been the squeaky whining wheel all my life

> I would be getting boatloads of sympathy. And really sympathy isn't

> even what I want, I want people to listen and to respect the

> severity of the disease that I have instead of just acting like I

> should put a little Ben Gay on it like they do on their arthritic

> knee. I find that I have just retreated from almost everyone. I

> must worry about my health and I find most of these people are not

> helping that situation.

>

> Sue

> rheumatic Re: Depression in Chronic Illnesses!

>

> The lesson I've learned the hard way is when people don't listen,

> don't believe, don't support me with this illness, our relationship

> is jeopardized. Scleroderma is not just testing me, it's testing my

> family & friends, and only a handful are passing the test.

>

> I recently was telling a long-term friend how expensive Minocin and

> my supplements are. He replied that I should take the generic,

> there's no difference. He quickly refuted me with 'science' when I

> tried to explain, ending it with a shameful " Well, it's your

> choice " . Later in the conversation I was telling him how I've felt

> so lost since I became sick. He said I should just 'laugh it off',

> and that I'm starting to sound like his grandmother. I felt totally

> unheard, and said I had to get off the phone to work on finding

> cheaper ways to get meds. He replied that if he were me, he would

> just give up & die because that's his life philosophy, to let nature

> take its course.

>

> I never would have guessed how insensitive people can be until my

> dx. A true friend with good communication skills would have asked

> me more questions, let me talk it out and let me know that he really

> hears me. Would have offered on-point support, helped me brainstorm

> solutions, just been on my side. If he was uncomfortable with

> my 'negative' feelings, they would have passed naturally had he

> taken a helpful role, instead of throwing out his surface level

> advice.

>

> Since my dx I've lost so many relationships over insensitivities.

> Our entire culture seems to be needing lessons in empathy and

> communication & especially listening skills.

>

> Since everyone in these forums is in the same boat, that's the one

> thing I feel we can count on one another for, shared understanding.

> These forums keep me functioning emotionally. These forums are an

> essential component to my physical and emotional health.

>

> I don't post often, but I read every post, and every post makes me

> more knowledgable, and stronger. I feel somehow bonded with you all

> in this magical electronic world. What the heck did people like us

> do before this electronic medium?

>

> Hi lynne

> > > > >

> > > > > As you know my Dr. prscribed Medrol 2 mg 4 days a week

> > > > > to lower my inflammation. my ESR is high 120.

> > > > > I thought it is not a bad idea because i read high

> > > > > inflammtion doesn't allow minocin to penetrate cells.

> > > > > anyway last nightI took my first medrol and I got up

> > > > > with less pain and less stiffness. My hands are no

> > > > > puffy right now. wow I didn't know a low dose of

> > > > > steroid can make a big difference. I don't like to

> > > > > take steroid because of side effects. my Dr. also

> > > > > doesn't like it. I am going to take it only 3 days a

> > > > > week. I hope it helps me to put on some weight.

> > > > > what do you think?

> > > > > By the way you do lots of work. I couldn't do such

> > > > > amonth of work even when I was healthy. like you I

> > > > > always followed a healthy diet, did excersize. no

> > > > > smoking and drinking but I was not a happy person.

> > > > > I didn't realize the most important thing is my

> > > > > health.

> > > > >

> > > > > enjoy the weekend

> > > > >

> > > > > soheila

> > > > >

> > > > > __________________________________________________________

> > > > > Looking for last minute shopping deals?

> > > > > Find them fast with Search.

> > > > http://tools.search./newsearch/category.php?

> > > > category=shopping

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ---------------------------------

> > > > > Looking for last minute shopping deals? Find them fast with

> > > > Search.

> > > > >

> > > > >

[Guest guest]

Rhonda,

You have some good ideas. I have gone to a local support group, everyone in

there was twice my age and with OA, we were just at such different stages in our

lives that talking about trying to raise a family with ra and the challenges

that it presents wasn't an option. It is a good idea though, maybe I will give

it another shot as the participants in the group may have changed.

I really have accepted that this is the way it is, when I feel good I will call

old friends and try to get together for lunch or something that is not strenous,

when I don't feel well I just retreat. Maybe that is just the best way for me to

handle this disease. I have never been doted on so I guess this is not a good

time to start. The person that is the nicest and most understanding to me is my

9 year old son, and even now when I think of his kindness I well up with tears

because of the compassion that he has shown and I am so proud of him and, God

willing, the man that he will become.

Thank you all for being here. I cannot tell you how much it means to me to have

these message boards to learn from and be able to express things that are

otherwise kept bottled up....which cannot be good for ones health.

Hugs,

Sue

rheumatic Re: Depression in Chronic Illnesses!

The lesson I've learned the hard way is when people don't listen,

don't believe, don't support me with this illness, our relationship

is jeopardized. Scleroderma is not just testing me, it's testing my

family & friends, and only a handful are passing the test.

I recently was telling a long-term friend how expensive Minocin and

my supplements are. He replied that I should take the generic,

there's no difference. He quickly refuted me with 'science' when I

tried to explain, ending it with a shameful " Well, it's your

choice " . Later in the conversation I was telling him how I've felt

so lost since I became sick. He said I should just 'laugh it off',

and that I'm starting to sound like his grandmother. I felt totally

unheard, and said I had to get off the phone to work on finding

cheaper ways to get meds. He replied that if he were me, he would

just give up & die because that's his life philosophy, to let nature

take its course.

I never would have guessed how insensitive people can be until my

dx. A true friend with good communication skills would have asked

me more questions, let me talk it out and let me know that he really

hears me. Would have offered on-point support, helped me brainstorm

solutions, just been on my side. If he was uncomfortable with

my 'negative' feelings, they would have passed naturally had he

taken a helpful role, instead of throwing out his surface level

advice.

Since my dx I've lost so many relationships over insensitivities.

Our entire culture seems to be needing lessons in empathy and

communication & especially listening skills.

Since everyone in these forums is in the same boat, that's the one

thing I feel we can count on one another for, shared understanding.

These forums keep me functioning emotionally. These forums are an

essential component to my physical and emotional health.

I don't post often, but I read every post, and every post makes me

more knowledgable, and stronger. I feel somehow bonded with you all

in this magical electronic world. What the heck did people like us

do before this electronic medium?

Hi lynne

> > > >

> > > > As you know my Dr. prscribed Medrol 2 mg 4 days a week

> > > > to lower my inflammation. my ESR is high 120.

> > > > I thought it is not a bad idea because i read high

> > > > inflammtion doesn't allow minocin to penetrate cells.

> > > > anyway last nightI took my first medrol and I got up

> > > > with less pain and less stiffness. My hands are no

> > > > puffy right now. wow I didn't know a low dose of

> > > > steroid can make a big difference. I don't like to

> > > > take steroid because of side effects. my Dr. also

> > > > doesn't like it. I am going to take it only 3 days a

> > > > week. I hope it helps me to put on some weight.

> > > > what do you think?

> > > > By the way you do lots of work. I couldn't do such

> > > > amonth of work even when I was healthy. like you I

> > > > always followed a healthy diet, did excersize. no

> > > > smoking and drinking but I was not a happy person.

> > > > I didn't realize the most important thing is my

> > > > health.

> > > >

> > > > enjoy the weekend

> > > >

> > > > soheila

> > > >

> > > > __________________________________________________________

> > > > Looking for last minute shopping deals?

> > > > Find them fast with Search.

> > > http://tools.search./newsearch/category.php?

> > > category=shopping

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

> > > Search.

> > > >

> > > >

[Guest guest]

Sue -

I have a similar strategy - get in touch with people when I'm feeling up &

retreat when feeling down. But the other thing I do is hide my reality. When

talking with friends or family, just focus on their life, and if they ask how

I'm feeling, just say 'ok'. When I do discuss my health with folks (except my

husband), it often feels awkward, and there are moments of tense silence and

conversatoin segways.

But I know for me it's emotionally healthier to have mutually supportive

friendship, especially during difficult times, so I find myself longing,

continuing to try to build friendships. I've considered trying to start a local

AP support group in Seattle, but doubt I have the wearwithall to follow through.

There must be so many extra challenges having chronic illness while parenting.

My son is 19 & so busy with his own life now, I don't want to interfere. Your

son seems so caring. So bittersweet. Many of the 'gifts' from this disease

have been because simple acts of genuine kindness take on such greater meaning.

Please feel free to email me if you need a supportive ear during your times of

retreat.

Peace,

Rhonda

Sue Emrick <semrick@...> wrote:

Rhonda,

You have some good ideas. I have gone to a local support group, everyone in

there was twice my age and with OA, we were just at such different stages in our

lives that talking about trying to raise a family with ra and the challenges

that it presents wasn't an option. It is a good idea though, maybe I will give

it another shot as the participants in the group may have changed.

I really have accepted that this is the way it is, when I feel good I will call

old friends and try to get together for lunch or something that is not strenous,

when I don't feel well I just retreat. Maybe that is just the best way for me to

handle this disease. I have never been doted on so I guess this is not a good

time to start. The person that is the nicest and most understanding to me is my

9 year old son, and even now when I think of his kindness I well up with tears

because of the compassion that he has shown and I am so proud of him and, God

willing, the man that he will become.

Thank you all for being here. I cannot tell you how much it means to me to have

these message boards to learn from and be able to express things that are

otherwise kept bottled up....which cannot be good for ones health.

Hugs,

Sue

rheumatic Re: Depression in Chronic Illnesses!

The lesson I've learned the hard way is when people don't listen,

don't believe, don't support me with this illness, our relationship

is jeopardized. Scleroderma is not just testing me, it's testing my

family & friends, and only a handful are passing the test.

I recently was telling a long-term friend how expensive Minocin and

my supplements are. He replied that I should take the generic,

there's no difference. He quickly refuted me with 'science' when I

tried to explain, ending it with a shameful " Well, it's your

choice " . Later in the conversation I was telling him how I've felt

so lost since I became sick. He said I should just 'laugh it off',

and that I'm starting to sound like his grandmother. I felt totally

unheard, and said I had to get off the phone to work on finding

cheaper ways to get meds. He replied that if he were me, he would

just give up & die because that's his life philosophy, to let nature

take its course.

I never would have guessed how insensitive people can be until my

dx. A true friend with good communication skills would have asked

me more questions, let me talk it out and let me know that he really

hears me. Would have offered on-point support, helped me brainstorm

solutions, just been on my side. If he was uncomfortable with

my 'negative' feelings, they would have passed naturally had he

taken a helpful role, instead of throwing out his surface level

advice.

Since my dx I've lost so many relationships over insensitivities.

Our entire culture seems to be needing lessons in empathy and

communication & especially listening skills.

Since everyone in these forums is in the same boat, that's the one

thing I feel we can count on one another for, shared understanding.

These forums keep me functioning emotionally. These forums are an

essential component to my physical and emotional health.

I don't post often, but I read every post, and every post makes me

more knowledgable, and stronger. I feel somehow bonded with you all

in this magical electronic world. What the heck did people like us

do before this electronic medium?

Hi lynne

> > > >

> > > > As you know my Dr. prscribed Medrol 2 mg 4 days a week

> > > > to lower my inflammation. my ESR is high 120.

> > > > I thought it is not a bad idea because i read high

> > > > inflammtion doesn't allow minocin to penetrate cells.

> > > > anyway last nightI took my first medrol and I got up

> > > > with less pain and less stiffness. My hands are no

> > > > puffy right now. wow I didn't know a low dose of

> > > > steroid can make a big difference. I don't like to

> > > > take steroid because of side effects. my Dr. also

> > > > doesn't like it. I am going to take it only 3 days a

> > > > week. I hope it helps me to put on some weight.

> > > > what do you think?

> > > > By the way you do lots of work. I couldn't do such

> > > > amonth of work even when I was healthy. like you I

> > > > always followed a healthy diet, did excersize. no

> > > > smoking and drinking but I was not a happy person.

> > > > I didn't realize the most important thing is my

> > > > health.

> > > >

> > > > enjoy the weekend

> > > >

> > > > soheila

> > > >

> > > > __________________________________________________________

> > > > Looking for last minute shopping deals?

> > > > Find them fast with Search.

> > > http://tools.search./newsearch/category.php?

> > > category=shopping

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

> > > Search.

> > > >

> > > >