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Just another "Good Job" (Reply to this comment)
by rsh101
I just wanted to say that this is the best written epinion I've read on any disease or health issue. And also thank you for sharing with the community so that people will be informed.
Rachel
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Sep 27 '01
2:59 am PDT
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Thanks (Reply to this comment)
by DnJisJRE
My favorite (OK, and only :-) )aunt died from Lupus in 1986, when she was 34. It was my first experience with losing someone close. My parents didn't handle the situation very well (it was OK to cry?!?!?!), so rather than get emotional, I got logical and tried to get educated. I looked everywhere for information on the disease, especially since back then they were not sure if it was genetic but it seemed to "go along family lines".
About all I found was that it was the "wolf disease", as you stated, that Elizabeth Taylor had it, and an awful lot of generalities ("some" people may have this, "some" people may have that). That is, of course, when I could find something about it. In fact, 3 years later when my mother (a hypochondriac) thought I might have it, the first 2 doctors I went to said they didn't know enough about the disease to make an "accurate" diagnosis! Nice to see times are changing and it is becoming more well-known.
Oh, and, as much as I truly loved my aunt, she did not treat her body very well at all. She smoked 2-3 packs of cigarettes a day till the day she died, ate "whatever", drank at least 12 diet RC's a day, and exercise consisted of walking while shopping at the mall. Being very much a child of the '70's ("sex, drugs, peace, and rock 'n roll), the pain and open wounds that drove people away, especially the guys, made her very depressed. All this helped to shorten her life. I have no doubt if she was as positive as you and treated her body better, she would be alive today enjoying her life. As well as the lives her daughter and granddaughter.
~Joey
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Aug 25 '01
7:05 am PDT
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Casey, your positive attitude must be an inspiration to everyone with a chronic illness. (Reply to this comment)
by frazzledspice
When I think about your rip-roaring rock n roll reviews, I know that lupus is something which certainly hasn't slowed you down.
Have you ever read any of Dr. Bernie Siegel's books? ("Love, Medicine and Miracles", for example?) You certainly have the positive attitude he advocates.
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Jun 24 '01
11:36 pm PDT
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Very Interesting! (Reply to this comment)
by verywellthen
That was very informative and very interesting! Good opinion!
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Jun 18 '01
10:23 pm PDT
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Luckily it wasn't too late (Reply to this comment)
by 4rhodes
for my sister. Unfortunately, she has suffered organ damage, but is alive, which is wonderful. Your article was great, thank you. I'd love to put and addendum on about the trip my sister has had with pregnazone, but that is another article entirely.
Take care!
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Jun 01 '01
3:14 pm PDT
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Bravo! (Reply to this comment)
by Don_Krider
I admire your courage in dealing with Lupus and thank you for presenting such a well-written, informative article. I have a much better understanding of Lupus now.
Don :)
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May 27 '01
9:00 pm PDT
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Great job! (Reply to this comment)
by gracef
Maybe the information that you have provided here will help some other person whose doctor dropped the ball.
It's terrible that you have to deal with this! I think your positive attitude will help lots.
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May 27 '01
4:36 am PDT
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Casey, tell me it isn't true? (Reply to this comment)
by viper1963
It saddens me to know you have this disease. I have three cousins and two very close friends who suffer from this disease. Many of them take prednisone (I hope I spelled that correctly) and they have ballooned tremendously.
I pray our scientists can find a cure. Great review!
Steve
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May 26 '01
7:41 pm PDT
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What a wealth of information you presented (Reply to this comment)
by bonniesayers
I just looked again over your list of symptoms and #3 and 8 I can relate to. During my last visit a week or so ago my Dermatologist sent me for a blood test, I have yet to call and ask for results and make a second follow up appt.
I need to avoid the sun and cannot find glasses that will not cause a rash due to the sweat, and sitting in the car driving with the sun beating down on me is disasterous.
I have asthma too and at one point thought I had lupus. Two months ago I had test for diabetes, cholesterol and thyroid after turning 41. After seeing so many commercials about diabetes I had to make sure I was in the clear.
Sometimes I remind myself of that Doris Day movie where her hubby was a hyphochondriac, was it Rock Hudson?
I am sure this detailed informative essay will help someone in their attempt to diagnose or better understand someone who has Lupus.
I never knew it meant SLE and not sure what #12 in your list means.
Thanks for sharing your history. My Mom and Great Grandmother were nurses and I keep telling my Mom all my symptoms and she says "panic attack". She hates when I get prednisone from my Dermatologist. My sister took that for something and had bad results from it. Now my sister needs a liver biposy, not sure what that entails.
Bonnie
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May 24 '01
3:26 pm PDT
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Thanks (Reply to this comment)
by Suzer
Casey, thanks so much for this review. My best friend Trudy had SLE and unfortunately didn't take care of it. She was diagnosed at 19, and did nothing other than take Valium to relieve stress. I think she took Prednisone at one point but didn't care for the bloatedness that resulted. She almost died of kidney failure at one point, and as it was essentially neglected, I lost her at 32 years old from an aneurism. Please Casey, or anyone else who may have been diagnosed with SLE, see your physician regularly and follow his/her instructions to the "t".
Trudy would probably still be here if she had seen her doctor as prescribed and followed the directions of the doctor. Trudy, I still love and miss you.
This disease is manageable now, thanks goodness, and I appreciate your providing information I still did not have after all of these years.
Suzi
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May 24 '01
9:38 am PDT
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Kudos to you for this informative real-world.... (Reply to this comment)
by NFP
...examination of lupus. I'm very sure it will be of immense assistance to a lot of people.
As one who has had to live with a partner afflicted with a similarly debilitating and difficult disease to diagnose and treat, I can fully relate to your tale and observations.
Thanks for opening yourself up like this, Casey. It will do a lot of good.
cheers,
nick
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May 24 '01
9:17 am PDT
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Thanks for the . . . (Reply to this comment)
by gungian
. . . informed and interesting posting.
Many will benefit from your sharing.
Write On!
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May 23 '01
9:04 am PDT
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A very well-written and informative article for the lay-person. (Reply to this comment)
by fiona32
I appreciated the way you explained each detail of your own story, from discovery, to daily living with lupus. Most importantly of all, to me - was your final paragraph.
Lupus is certainly a very serious auto-immune disorder, and being a nurse, you've learned more about your own illness than the average patient, and shared it so well.
However, letting people know how ABSOLUTELY VITAL IT IS, that we do not roll over on the couch, grab that remote control, and give up a meaningful and giving lifestyle is critical. Depression, self-pity, self-absorbtion, especially during flares, can become so self-sabotaging. Thanks for the very well-put reminder - I always put "healthy" when I have to put down forms asking for information on me, because I definitely do not FEEL like the walking wounded. Thank God for every day of joy, fun and laughter we have! Great review!
Marty
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May 23 '01
1:31 am PDT
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Great job! (Reply to this comment)
by hikini
I have a sister-in-law with SLE that has been in remission for 17 years. I also have an aunt with lupus hepatitis that unfortunately looks like it may win the battle. Your review here answered some of my questions and I was glad to read it from someone who is affected personally. Thanks for taking the time to write this very in-depth 'article'.
Hikini
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May 22 '01
11:58 pm PDT
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Excellent (Reply to this comment)
by dequebec
I am impressed with your ability to incorporate scientific/medical information into an epinion for the layperson. You educate while maintaining respect for your readers. Very well done.
Jennifer
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May 22 '01
10:12 pm PDT
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