Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Did anybody read the book written by Karen Duffy ( "Duff" vj from vh1 in the 90's) It was such a good book for us sarkies. She came down with it in her early 30's. It helped me alot in the beginning. I think the name is "How not to be a smart ass patient" or something like that.
No, I stand corrected it is "Model Patient." It is really funny, plus it addresses her journey through sarcoidosis. The poor girl has neurological sarcoid. But she look great. Take care guys. Tish
Yes hers was the first book I read. she also has a cookbook called Slob in The Kitchen or something. She wrote it also while recovering I believe. It has some good recipies in it and funny remarks. She does look good. I saw her on that cable show recently and commented. I wish I had her zest for life and sense of humor. Mine seems to have vanished.
Bunkie
I'll have to check that one out. Reading her first book was kinda like reading, "What to espect while you are expecting" when you are pregnant. My zest has gone down the toilet as well. I am still counting on being a part of that 70 percent that goes into remission after a year and a half. I am not even at a year. I am going crazy sitting in the damn house all day, everyday!!! I dont even eat because I am afraid to blow up with the predisone. I used to enjoy a drink evey now and then, but god forbid with all of the drugs I am prescribed. No fun for us sarks!! God Bless, TIsh
Yes when i was first diagnosed i read her book. It really helped me a lot also. She has been through so much and to keep her sense of humor and continue to volunteer at the nursing home it just goes to show what our mind can do if we will it to. God bless
I also got a kick out of her book and right after the book came out in the mid '90's, I went to a conference on Sarcoid down in Memphis, I knew she was going to be there and looked forward to possibly meeting her. As it turned out, we were about the same age (late 20's) and the youngest people at the conference. She was going to be a speaker. At one of the breaks before she went on, she saw me, and saught me out. She asked me all kinds of questions, being the same age. She offered to give me the name of her ob/gyno (but said she took no insurance!) and her shrink, I was moved, and then out of the corner of her mouth, she said "Hey, don't get caught up in this support group crap, everyone just whines to each other, and it is depressing They want me to be the spokesperson for Sarcoid, but I said I wasn't well enough, but really, I just don't want to be the poster-child for a disease!", She then excused herself to go up on stage. She told her story of how she got sick, with the "same jokes, and then had the audasity to ENCOURAGE the audience to find support groups in their area, and if there isn't one, think about starting one, because it is so helpful to support each other!" I couldn't believe my ears!! I was like what a fraud!! Now it makes me question everything she wrote about! She went on Oprah once, and I think she said the word Sarcoidosis once when she told her "funny story", ... yawn...But she was more interested in cracking jokes about being at the Oscars with George Clooney, and how good Cover Girl or Revlon was to her, than talking about the abc's of Sarcoid. I lost all respect when I saw Dr. Jekyl, Mr. Hyde in Memphis.
Teeteeme,
Wow. I can't get my mouth to close from the shock. It is obvious after reading your post that she is just another entertainer, nothing more. Too bad her acting career did not take off more. I guess that explains why she is only talking about Sarcoid at the convention once a year.
My doctor told me to stay away from support groups also. She said they would keep me living in the disease. I have to say that had it not been for this group and a couple others when I first got ill I would not have mentally survived. Knowledge is power. When I heard rare disease and death I was done. One of the first topics I found in the support group was about people that had lived a long time with the disease. It had an immediate calming affect on me. Do I still have anxiety about it? Yes but this group has helped me so many times when I was upset. Being alone most of the time and not having any other sick friends my computer is like my link to friends.
I hope she does well in her fight with her Sarcoid but she is no longer my hero.
Bunkie
I think your story makes her even more funny. She is first of all an excellent stand up comedian and secondley a sarcoidosis patient. But she wrote a good book. If your sarcoidosis is severe i advise a support group.
David
Good point David. I dont blame her. Who wants to be the star "labeled" with a disease.
Karen Duffy's book was the first I read after I was diagnosed. My pulmologist recommended it - The book was good - I haven't had neuorological involvement which is what the book was mostly about.
I have read the 3 books by Gilbert Barr which I found to be more in line with my symptoms.
I would actually read most books written about sarcoid - since there are so few. Then again - reading this site is like reading a book - with all us writing about our symptoms and what does and doesn't work for us.
Ann
I'm not yet sure what I think after reading Teeteeme's experience, but I'll still admit to quoting "Model Patient" frequently - particularly Duff saying that her muscle tone resembled the consistency of raw shellfish. (Or something like that.) Funny because it's so familiar...
What are your symptoms? I have mine mostly confined to the spleen area. It can go anywhere anytime. The nature of the beast. take care! Tish
That really stinks. I still like her. Everybody just has different ways of handeling this. Her's is to crack jokes and try not to take it as serious as it is. Neuro sarc is scary. Sarc is scary. It is hard to handle mentally. I dont know about you guys, but I have gone a little nutty since my diagnosis. (the predisone didnt help}. My doctor tried to prescribe me respidole which is for schitzo's. That was one med. I refused. Take care guys. Tish
Don't get me wrong, I think she is very funny. She has a crack whip sense of humor. But I hate a hypocrite. I realized that she just wanted to sell more books. If she didn't want to be the "poster child" for sarcoid, that is okay.This is still a free country, at least for the moment. That is why Bernie Mac kept such a low profile, who is going to insure an actor with a disease like ours? it was shocking, in the matter of minutes I saw the real person, and then, snap! The actress, trying to make a buck, all at our expense, I felt like she was a traitor, ...or something. Sorry if I burst everyones bubble.
Teeteeme,
I am glad you shared. I agree she is a hoot and what you said is not going to turn me against her but I now have a more complete picture. I have followed her career the past few years and pictures on the internet. She was on a cable show recently I commented on. She looks like most of us with Sarcoid do. Not bad on the outside and probably fighting like crazy on the inside.
I used to get so mad at Bernie Mac for not being the poster child for this disease but I do get it. When it comes to working and money and the public eye there are not many Michael J Foxs out there.
Bunkie
She is wrong about staying off the support groups. There is NO where you can get the common language to fight any particular disease better than a support group. Case in point. The eye problems one can have are very dangerous and you must be aware of the symptoms at the first hint of trouble so you can get treated before permanent damage occurs. I was a support group member for another problem and the doctors who came on their and advised contributed great info in my "healing" of my condition!
It's all good. We all have our good and bad days.
Tish
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
Add to the discussion