RE: Where is the party?

[Guest guest]

Group members,

I have been reading your mail to each other for days now, and I feel like I

have missed something. What book? And all the acronyms don't mean anything

to me, with the exception of DM which is what I have. I could write a book

about my experience with this devastating disease. You see, I am going to

shout to all, that I am fighting two battles! I also had silicone breast

implants. Now, I know how the blacks felt during the 60's. Every time I see

a doctor I am stigmatized because of my past. The last doctor I had in New

York saved my life. Between 1992 and 1997, I went through more doctors than

most people do in their lives. Because many women faked illnesses it made

all women with implants look " fake " . In spite of the fact that my body was

covered in a rash and the skin bx indicated possible DM, I was never

diagnosed with DM until 1997. Never before him did anyone run a simple CPK

on me. I was just mocked at and I lost many friends because they thought I

was faking my illness. I was in a wheelchair for 4 years. When I met my

doctor in New York he saw me and immediately ran a CPK on me, and surprise of

surprises it was in the upper 1000's. You can't make your blood diseased by

DM just by wishing it, or by trying to get sympathy. And my doctor would not

have put me in the hospital to have a permanent " life port " implanted so I

could get gammaglobulin infusions for a year. He also personally called the

Red Cross to get me gamma when the pharmaceutical companies refused to supply

it to me because I didn't have AID'S or Cancer. I wouldn't wish this on

anyone.

I just moved to Tennessee and before I could stick my foot in the door of a

doctor's office I was asked If I had ever had silicone implants. If they had

asked me if I had AID'S the ACLU would have been camping up that doctor's

rear end.

Can anyone out there relate to THIS? It is just my guess that I won't get a

reply back from anyone. If there are any women out there that can relate to

me feel free to write. Jim, how about a story from me to put in this " book "

you are writing. After all the etiology of DM is unknown.

I have tried to get into this group and I just don't feel like I am there. I

hope I don't offend anyone out there but I just needed to vent some anger.

After days and days of not getting a simple " hello " from anyone I am not

feeling " SUPPORT " . Isn't that what this group is all about?

Hope everyone has a wonderful day. Mine has been terrible...I have come down

with the second URI in a month. I cried all day Saturday, not because I feel

sorry for myself, but because I am so tired of hurting and being treated like

a second class citizen because I had implants. I have nothing to prove, I

just want to be treated like a normal patient with DM.

Pam

[Guest guest]

Good Meowning Pam !!!!!

Please rest assured that support is here !!!! I am new to this group but

sure have learned a lot in my week here. The people are wonderful and

willing to help and share their stories at any cost !!! I have PM and am

also just learning to deal with it as I was only diagnosed three weeks ago.

I hope you are feeling better today and each day after finds you better and

better. And dont worry about " Venting " here - thats why we are here !!!!

Take care,

" We Don't Own The Earth...

We Borrow It From Our Children "

>^..^<

[Guest guest]

Dear Pam:

I'm sorry the way you feel left out; it was no purposeful intention, I assure

you.

I would be honored if you'd send your DM story. From the stories that have

come in, virtually every DMer expresses similar thoughts and reactions about

their medical professionals and the medications.

Email it or Download it to:

JRKilpatrickMYO@...

Thanks - and hoping you'll have a better day.

Jim

[Guest guest]

Hi Pam,

We are here for you! I am sure sorry if we overlooked you. When did you

sign on? Please forgive the brain fog :-)

Through the support group at rheuamtic.org (it's for people who use, or are

considering using the antibiotic protocol developed by Dr. McPherson

Brown for RA and related diseases, including the various forms of

myositis)....anyway, through this group, I 'met' a lady named from

Montana who had silicone implants and now has scleraderma...another

'auto-immune' disease. I just bet that she would be willing to correspond

with you on that subject. She seems like a very compassionate and caring

lady. I could drop her a line and 'introduce' the two of you, if you are

interested. Let me know, OK?

.......take care, and hugs, too,

Connie

[Guest guest]

Hi Pam, I just read your post and I must say you have been put through

the mill. I can't understand why on earth a doctor would ask such a

stupid thing like " Do you have breast implants " .... Correct me if I'm

wrong, but didn't they prove that the breast implants are not the cause

of these autoimmune diseases? I know I read that somewhere but it was

also on the news. So, why on earth would this doctor do this to you.

Whether you have breast implants or not, you still deserve the same

treatment and care as all the rest. If I were you I would contact the

MDA and get a doctor in your location to help you out. They can refer

you to one.

Was this doctor a Rheumatologist?

Your post sounds like you've had such a very bad time of it and venting

is fine on this list. It will make you feel better.

I know with myself, when I'm not feeling good I just sleep and I won't

post for days at a time. Teddi, who lives in OK, knows when I'm sick by

way of not seeing anything posted by me.

You haven't offended me nor anyone else Pam... this is a tough road to

hoe and nobody knows it any better than all of us. Even a doctor

doesn't know how we feel. It can be so frustrating. I wish I was close

by you in location because a big hug would be in order right about now.

Now, please tell me how it's going with this doctor.... do you want to

change? If so just let me know and I'll help you hunt down a decent

doctor who won't do that to you. Also, please let us know what you

don't understand and we'll explain it to you. Thats what we're here

for, to learn and make new friends. So please, just ask...

Reply when you can Pam, and I hope to day is a much better day for you.

Ooops almost forgot to ask, do you have the URL for the MDA? If not,

I'll get it for you.

Hugs,

Vicki

[Guest guest]

Wow Pam, you have been through a lot! That is a shame that people didn't believe you and the doctor's weren't smart enough to take a CK check. It sounds as though you had some really arrogant doctors. My doctor was willing a couple of years ago to start the IVIg on me, but I refused. So I don't understand why there was such a problem for your doctors to get that for you...except that they are just jerks.

I wish you luck finding a new doctor in Tennessee.

I just joined a couple of days ago and this is the first post I've seen from you...sorry that you don't feel that the group is supportive. I had a few respond to my introductory message and I was surprised with it being a weekend...usually weekends are really slow on the lists.

The initials used that I know the meaning of: DM, Dermatomyositis; PM, Polymyositis; IBM, Inclusion Body Myositis; RA, Rheumatoid Arthritis; CK or CPK, Creatine Kinase; ANA, Antinuclear Antibody; IVIg, Intravenous Immunoglobulins. I don't know what URI means, you used that in your message and that is a new one to me.

Take care and I hope you feel better.

*karen*

[Guest guest]

Hi Pam

Welcome to the group...Vicki is right.....you

really get support from a group like this where

it's pretty much a " been there - done that " !

Makes it nice when you can say what you

feel and know that someone will understand.

One of the more frustrating things about our

diseases is that they are the " hidden " diseases

.....we look good therefore we feel good....NOT

Unfortunately it's not only friends & family but

often doctors (OK Vicki.....I won't go there)

Teddi

[Guest guest]

Hi Miss Teddi .... and how are you and the furballs tonight?

[Guest guest]

Teddi, you said it!

There is a statement that Mailhes with the Lupus Foundation said "People may look great from the outside, but that’s not always the case.".

I get so tired of being told "You look great." when I felt like I was falling apart inside...people feel they are being kind saying this to us, but the exact opposite is sometimes true...it is unkind.

*karen*

Re: RE: Where is the party?

Hi PamWelcome to the group...Vicki is right.....youreally get support from a group like this whereit's pretty much a "been there - done that"!Makes it nice when you can say what youfeel and know that someone will understand.One of the more frustrating things about ourdiseases is that they are the "hidden" diseases....we look good therefore we feel good....NOTUnfortunately it's not only friends & family butoften doctors (OK Vicki.....I won't go there)Teddi

[Guest guest]

Evening Vicki

One furball on sofa....one on end table with

everything almost shoved on floor....one on

top of bookcase and the old boy is probably

sacked out in the middle of my bed...his

usual haunt,,,,,,he must have a slide rule

to get in the precise middle every time..lol

I'm feeling pretty good and have quite a bit

of energy.....sooooo am (short pause while

I grab books before they hit the floor) getting

as much done as I can before the crash

Went to a concert tonight and will paraphrase

Pogo (for those of you old enough to remember).... " I is covered with

culture "

Excellent concert.....Pipe organ, 9 piece

string ensemble, 20 voice chorus and

soloists.

Teddi