Re: Home again (very long)...

September 29, 2006

In a message dated 9/29/2006 8:03:48 PM Eastern Daylight Time,

samrocci@... writes:

So, first I do not think that treatment should ever become " routine " .

The fact that I am sitting in a cancer center with a port in my chest

connected to a tube that runs directly into a major vein getting a

drug over three hour period is NOT like taking an aspirin for a

headache. It's a big deal and I need to recognize that. Second, thank

you to all of you who gave me the words to share with this woman

today. I could not do this without you guys.

Dear Sam,

Thank you so much for what you wrote. It felt like my brain just collided

into a wall. Like, trying to convince myself that I'm not really that sick

(for the past 8 years) and that its all in my head has been the route my brain

has taken and then ----BAM. You hit me with your share.

It's odd, sometimes when others tell me I " should " be able to do this or

that, I can actually defend myself by saying all the stuff about Stills and

being chronic and on and on. But I know that a part of me still just doesn't

believe that. A part of me believes that it is all in my head. After years of

believing authors Louise (she's into positive affirmations and how we

bring on our illnesses) and M. Peck ( who I met several times before his

death who agreed that all diseases were psychosomatic and that we were to

merely choose which one we would die from) I believe(d) that it is my brain and

thought patterns that cause me to have stills. That if I were mentally

stronger, more disciplined in my thoughts and actions, and more spiritual - I

would

be healthy again. As I write this I see how stupid it sounds, but those are

the thoughts in my brain.

But - I take thousands of dollars worth of meds monthly including daily

Kineret shots, I no longer can work the way I want or as efficiently as I'd

like,

my life centers around working, making money to pay my medical bills,

taking Stills treatments, and working to pay for them. A social life has pretty

much disappeared and for this old disco queen, I would have never believed that

would have ever happened.

And yet, so many others have it much worse than I do. After all, I have a

wonderful husband who loves me unconditionally, I do have a means to pay bills

(thank goodness), I have the Stills Loop so I never need feel alone.

So, why do I think I'm not really that sick?

feel good everyone - Carole in Hollywood FL

September 30, 2006

Sam,

I am so glad to hear you had a good time at the conference. I hope that you

will get stronger and stronger everyday. I am so happy you were having your

infusion when the woman had that awful reaction. I know what that woman went

trough. I had an allergic reation and mycoplasma from remicade. It is nerve

racking when you have an allergic reation and it helps to have caring people

around. I am sure that woman felt better with you there. Thank you for being an

angel to that woman. Keep your chin up... If there is anything I can do to help

just ask.

Danni

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September 30, 2006

I am somewhat new here and read more than I write, but all I can say to this

is " Wow " . You took the very words from my mouth and spoke them as if they

are from my own brain and heart. I have tears in my eyes from the

recognition. Thank you. I hope for you that knowing one person feels like

they truly understand your thoughts and feelings makes your day a bit

lighter.

Cammie

>From: worcspubl@...

>Reply-To: Stillsdisease

>To: Stillsdisease

>Subject: Re: Home again (very long)...

>Date: Sat, 30 Sep 2006 01:26:51 EDT

>

>In a message dated 9/29/2006 8:03:48 PM Eastern Daylight Time,

>samrocci@... writes:

>

>So, first I do not think that treatment should ever become " routine " .

>The fact that I am sitting in a cancer center with a port in my chest

>connected to a tube that runs directly into a major vein getting a

>drug over three hour period is NOT like taking an aspirin for a

>headache. It's a big deal and I need to recognize that. Second, thank

>you to all of you who gave me the words to share with this woman

>today. I could not do this without you guys.

>

>Dear Sam,

>

>Thank you so much for what you wrote. It felt like my brain just collided

>into a wall. Like, trying to convince myself that I'm not really that

>sick

>(for the past 8 years) and that its all in my head has been the route my

>brain

>has taken and then ----BAM. You hit me with your share.

>

>It's odd, sometimes when others tell me I " should " be able to do this or

>that, I can actually defend myself by saying all the stuff about Stills

>and

>being chronic and on and on. But I know that a part of me still just

>doesn't

>believe that. A part of me believes that it is all in my head. After years

>of

>believing authors Louise (she's into positive affirmations and how

>we

>bring on our illnesses) and M. Peck ( who I met several times before

>his

>death who agreed that all diseases were psychosomatic and that we were to

>merely choose which one we would die from) I believe(d) that it is my

>brain and

>thought patterns that cause me to have stills. That if I were mentally

>stronger, more disciplined in my thoughts and actions, and more spiritual -

>I would

>be healthy again. As I write this I see how stupid it sounds, but those

>are

>the thoughts in my brain.

>

>But - I take thousands of dollars worth of meds monthly including daily

>Kineret shots, I no longer can work the way I want or as efficiently as

>I'd like,

> my life centers around working, making money to pay my medical bills,

>taking Stills treatments, and working to pay for them. A social life has

>pretty

>much disappeared and for this old disco queen, I would have never believed

>that

>would have ever happened.

>

>And yet, so many others have it much worse than I do. After all, I have a

>wonderful husband who loves me unconditionally, I do have a means to pay

>bills

>(thank goodness), I have the Stills Loop so I never need feel alone.

>

>So, why do I think I'm not really that sick?

>

>feel good everyone - Carole in Hollywood FL

>

September 30, 2006

Hey, I saw that you live in Branson. I live very

close to Kansas City! Small world. I was just

diagnosed with Still's in 2004. I am brand new to the

group this month. Great to have a connection in

Missouri! Audra

--- Palmer wrote:

>

> Sam,

>

> Thanks for sharing your " very long " stories. I am

> always too sick to go to the conferences in the fall

> and it sounds like such a great experience. You

> sound like you are coming to terms with Stills very

> well. We all have to accept it in our own time and

> our own way. I was a hospice social worker before I

> got sick some 8 years ago. I spent my days telling

> people how to cope with life-ending illness, but I

> really had no clue of what it FELT like to be sick

> every day. Your story about the Remicade infusion

> hit me like a brick. I had nearly the same reaction,

> except mine really became a cardiac issue and I was

> just a 'heart beat away " from a heart attack. I can

> still remember them opening my clenched jaw to put

> the nitro pills under my tongue. So scary. In my

> situation, though, they cleared the room. Didn't

> want others to see this frightening episode. There

> wasn't anyone like you there to comfort me. The

> nurses and my rheumy (who came running in) did a

> great job,

> and I believe they saved my life...but I left there

> scared to death of what lay ahead. What would I do?

> I had failed other BRMs already...what was left?

> Well, it turned out that Kineret was left and I

> still take it every day. You are right, there is

> always another option to try. Anyway, I just wanted

> to tell you that I thought you did a great job

> comforting the other patient.

>

> Take care of yourself and get some rest! I can't

> imagine a trip to Vegas with Stills. You all are so

> strong! Go Dragon Slayers!

>

> Stay Healthy

>

> Branson, MO

> Sam Rocci wrote:

> I just wanted to check in with everyone

> and say a quick hello. We got

> back early afternoon on Wednesday from the

> conference and I jumped

> right back into my life :0) My mom lives 4 hours

> south of us and I

> drove her home half way to save my Dad some time...

> a challenge after

> 4 days in Las Vegas and a plane trip. The laundry is

> piled up, and

> it's a little tough to start cooking again after all

> of the really

> yummy restaurants!

>

> The conference was wonderful this year. It was

> really emotional for

> me while the Dr. was talking. He brought up some

> concepts that were

> very close to my heart and while it was hard to

> listen I came away

> with a different perspective. I highly recommend

> asking for a copy of

> the presentation if you missed it. I talked with my

> therapist after

> coming home about the section where he spoke of

> acceptance and anger

> etc... I told her I did not know why I have such a

> hard time

> accepting that I do in fact have this disease, it's

> not going away

> today. She told me a story of a nurse she once knew

> in a psych. ward,

> this woman had schizophrenia and had become

> homeless, would not take

> her meds etc... My therapist, who was in training,

> asked her mentor

> why this highly educated woman would not accept her

> condition and

> take her meds to function as part of society. He

> told her that by

> continuing in a state of denial, she was able to

> continue on and if

> she fully realized that she had this and would live

> with it the rest

> of her life she might not be able to go on. While

> her condition is

> impossible to compare to what I go through, I think

> I do hold on to

> some denial in order to make it through some days.

> Some times the

> idea that I will hurt forever is too hard to handle.

> I think the

> psychological strain of this disease is sometimes

> more difficult than

> the physical. HOWEVER..... all of you are a fabulous

> group of people

> and I felt so uplifted to meet so many kind new

> friends. Thank you

> thank you thank you!

>

> One more story and then I am off to watch My Little

> Pony with my 3

> year old. Today I had Remicade, thank goodness since

> I feel pretty

> terrible. So I had to see the oncologist first, go

> over my labs

> etc... (I have my infusions done in a cancer center)

> He told me that

> my dose is the highest he has ever given (1000 mg's

> every 4 weeks)...

> yay for me! Then I go into the infusion room and get

> hooked up. On

> Fridays they do all the Remicade patients since we

> take so long to

> get the meds. This is becoming a routine for me, no

> big deal right?

> There was a nice hispanic woman across from me who

> had just started

> her infusion. We talked a little while the nurses

> got my port going.

> This was like her 5th time, she gets it every 6

> weeks. All of a

> sudden she started to itch... then she turned really

> red in the

> face... her hands got covered with hives... it was

> out of nowhere!

> The nurses, who all used to work in the ER were

> awesome. They started

> pumping benedryl into her port iv, then something

> called ativan, then

> another benedryl type drug, then finally something

> called

> epinephrine. Her blood pressure went up really high

> and she was

> shaking. It was scary for her and for the rest of

> us. They kept her

> there until everything returned to normal and then

> told her she

> couldn't have the Remicade today and she needed to

> see her rheumy

> before resuming treatments. She just fell apart...

> the idea that she

> couldn't have Remicade anymore was terrifying to

> her! Like the rest

> of us who are on it, we've blown through Enbrel, and

> Humira and she

> had tried Kineret too. I found myself trying to

> soothe her fears with

> some of the same words you guys have used with me...

> there's always a

> new drug to try, a different combination, new

> therapies in clinical

> trials, etc... We just spent the entire three hours

> talking about how

> hard living with a chronic illness can be. I told

> her she needed to

> start taking care of herself... putting her needs

> first sometimes

> etc... all of the stuff you guys tell me when I am

> down in the dumps.

> So, first I do not think that treatment should ever

> become " routine " .

> The fact that I am sitting in a cancer center with a

> port in my chest

> connected to a tube that runs directly into a major

> vein getting a

> drug over three hour period is NOT like taking an

> aspirin for a

> headache. It's a big deal and I need to recognize

> that. Second, thank

> you to all of you who gave me the words to share

> with this woman

> today. I could not do this without you guys.

>

> Take Care and hugs all around....

> Sam

>

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

> Do you Yahoo!?

> Get on board. You're invited to try the new Yahoo!

> Mail.

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

September 30, 2006

Sam,

I can relate to not really accepting this Dragon breathing down my back. I

wonder some days how to even begin dealing with this new life I've been given!

It certainly doesn't seem fair but then I hear my grandmothers voice saying

" Young lady no one ever said this life would be easy nor fair you take the hand

your dealt, learn from it & how to live with it " . She passed away before I was

diagnosed but I had been sick for a while. She was a strong woman rarely

complained even when dying of cancer. She had a breast removed at 81 from

recurring breast cancer 2 years later it was in her lungs & terminal. There are

so many others worse off than me & I try not to complain but there are days its

hard. Maybe a little denial is what does help us get through it all.

Good for you helping that lady get through a really hard time. It's so nice to

hear when others do things like that. This group has it's share of really

wonderful, caring people something that can be rare in this world.

Take Care,

Chris

Sam Rocci wrote:

I just wanted to check in with everyone and say a quick hello. We got

back early afternoon on Wednesday from the conference and I jumped

right back into my life :0) My mom lives 4 hours south of us and I

drove her home half way to save my Dad some time... a challenge after

4 days in Las Vegas and a plane trip. The laundry is piled up, and

it's a little tough to start cooking again after all of the really

yummy restaurants!

The conference was wonderful this year. It was really emotional for

me while the Dr. was talking. He brought up some concepts that were

very close to my heart and while it was hard to listen I came away

with a different perspective. I highly recommend asking for a copy of

the presentation if you missed it. I talked with my therapist after

coming home about the section where he spoke of acceptance and anger

etc... I told her I did not know why I have such a hard time

accepting that I do in fact have this disease, it's not going away

today. She told me a story of a nurse she once knew in a psych. ward,

this woman had schizophrenia and had become homeless, would not take

her meds etc... My therapist, who was in training, asked her mentor

why this highly educated woman would not accept her condition and

take her meds to function as part of society. He told her that by

continuing in a state of denial, she was able to continue on and if

she fully realized that she had this and would live with it the rest

of her life she might not be able to go on. While her condition is

impossible to compare to what I go through, I think I do hold on to

some denial in order to make it through some days. Some times the

idea that I will hurt forever is too hard to handle. I think the

psychological strain of this disease is sometimes more difficult than

the physical. HOWEVER..... all of you are a fabulous group of people

and I felt so uplifted to meet so many kind new friends. Thank you

thank you thank you!

One more story and then I am off to watch My Little Pony with my 3

year old. Today I had Remicade, thank goodness since I feel pretty

terrible. So I had to see the oncologist first, go over my labs

etc... (I have my infusions done in a cancer center) He told me that

my dose is the highest he has ever given (1000 mg's every 4 weeks)...

yay for me! Then I go into the infusion room and get hooked up. On

Fridays they do all the Remicade patients since we take so long to

get the meds. This is becoming a routine for me, no big deal right?

There was a nice hispanic woman across from me who had just started

her infusion. We talked a little while the nurses got my port going.

This was like her 5th time, she gets it every 6 weeks. All of a

sudden she started to itch... then she turned really red in the

face... her hands got covered with hives... it was out of nowhere!

The nurses, who all used to work in the ER were awesome. They started

pumping benedryl into her port iv, then something called ativan, then

another benedryl type drug, then finally something called

epinephrine. Her blood pressure went up really high and she was

shaking. It was scary for her and for the rest of us. They kept her

there until everything returned to normal and then told her she

couldn't have the Remicade today and she needed to see her rheumy

before resuming treatments. She just fell apart... the idea that she

couldn't have Remicade anymore was terrifying to her! Like the rest

of us who are on it, we've blown through Enbrel, and Humira and she

had tried Kineret too. I found myself trying to soothe her fears with

some of the same words you guys have used with me... there's always a

new drug to try, a different combination, new therapies in clinical

trials, etc... We just spent the entire three hours talking about how

hard living with a chronic illness can be. I told her she needed to

start taking care of herself... putting her needs first sometimes

etc... all of the stuff you guys tell me when I am down in the dumps.