Author Topic: Anyone get this comment about Venus Williams?  (Read 14564 times)

rwharo

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Re: Anyone get this comment about Venus Williams?
« Reply #30 on: September 04, 2012, 06:18:42 AM »
My doctor even commented to me this week, "Venus Williams has Sjogren's and can still play tennis, so I don't think your fatigue is from Sjogren's"! 

lostone

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Re: Anyone get this comment about Venus Williams?
« Reply #31 on: September 04, 2012, 09:31:22 AM »
I dont know what all she has from Sjogrens, but if its only dry eyes and dry mouth,, I consider her very very lucky, all of us should be so blessed to only have that,

meow

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Re: Anyone get this comment about Venus Williams?
« Reply #32 on: September 04, 2012, 12:10:20 PM »
I am not surprised, really, about the ignorance regarding Sjogren's. This syndrome is often misunderstood among the medical community. I just started with a new medical team (and my 3rd rheumatologist) because my old one did not understand my ups and downs at all. My old primary doc even  accused me of being a 'professional patient.' That's when I knew it was time to move on.
A professional patient???? What an SOB! I would have unloaded on him like a cannon. When you can't help the patient, BLAME THE PATIENT. Is there a class for that in med school? What an a$$H---
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)

bjnc

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Re: Anyone get this comment about Venus Williams?
« Reply #33 on: September 04, 2012, 12:44:25 PM »
Venus looks very tired to me, even when she is winning, such as in the first round of the US Open this year.  I'm sure it's more of a struggle to get out there and play than people realize.  I played high school tennis, and I know, with the diagnoses of Psoriatic Arthritis and Sjogren's Syndrome, that I could not go out there on the tennis court at all these days, without huge amounts of pain and joint damage, not to mention the fatigue that seems it is always around.

Venus is in an early stage of her illness and has a lot of determination and experience to get her out there on the tennis court right now.  Perhaps she will go through a remission; perhaps not.  I still only hope and wish the best for her.
Female 56, diagnosed with Psoriatic Arthritis 1986; also have Undifferentiated Connective Tissue Disease (in my case, a combination of Lupus and Sjogren's), Grave's Disease. Remicade, (a biologic for Ps. Arthritis), Arava, Cymbalta, Evoxac, Trazodone, Synthroid; Miralax

JaFish

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Re: Anyone get this comment about Venus Williams?
« Reply #34 on: September 04, 2012, 02:48:07 PM »
I am not surprised, really, about the ignorance regarding Sjogren's. This syndrome is often misunderstood among the medical community. I just started with a new medical team (and my 3rd rheumatologist) because my old one did not understand my ups and downs at all. My old primary doc even  accused me of being a 'professional patient.' That's when I knew it was time to move on.
A professional patient???? What an SOB! I would have unloaded on him like a cannon. When you can't help the patient, BLAME THE PATIENT. Is there a class for that in med school? What an a$$H---

I could hardly believe what I was hearing, either. When I complained that I was having a hard time getting through the entire work week without feeling incredibly fatigued, he said I "just had the wrong job." My current rheumy, my 3rd, - one I took myself to - said that I was feeling this way because I was not taking enough plaquinil!

My old doc and that entire clinic lost me as a patient. My Mom has gone there and is changing, too.  I believe in not getting mad. I get even!

A66eyroad

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Re: Anyone get this comment about Venus Williams?
« Reply #35 on: September 05, 2012, 07:19:48 AM »
In the same way that I don't want anyone to discount the impact SJS has had on me, I don't want to discount the impact SJS has on Venus.  I mean, really, don't we all hate it when someone tells us we don't look sick?

Venus has endorsements that pay her income. I'm sure her endorsements and her income are based on her ability to play tennis, and to play tennis well.

If my livelihood was contingent on the fact that I go outside in the hot sun and run like a crazy woman, I would certainly do my derndest to look as normal as possible while I was out there.  Here at work I may be nauseated and dizzy, but I smile and work hard and act like a normal employee.  I would feel bad if someone said, "Look at Abbey, she's got SJS and she always comes to work with a smile," to somebody who was newly diagnosed.

Let's remember that NOBOBY who's been diagnosed with SJS is "lucky" !!!  :o

Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.

adaubrey

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Re: Anyone get this comment about Venus Williams?
« Reply #36 on: September 05, 2012, 07:25:22 AM »
well said a66eyroad. I was thinking the same thing.

meow

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Re: Anyone get this comment about Venus Williams?
« Reply #37 on: September 05, 2012, 09:19:07 AM »
JaFish, I would write a carefully worded, professional letter to the doctor AND cc the company that owns the clinic, saying exactly why you left and what the new doctor said. I would document every condescending remark, and let them know you will be telling everyone you know about the unprofessional behavior of the doctor. You should be an authority on that--- after all, you are a professional patient >:-(
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)

slccom

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Re: Anyone get this comment about Venus Williams?
« Reply #38 on: September 05, 2012, 11:57:25 AM »
Venus may well be pushing herself into a permanent deterioration, too. Sometimes "determination" needs to be the "determination" to listen to your body and rest when it tells you to.

Sharon

JaFish

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Re: Anyone get this comment about Venus Williams?
« Reply #39 on: September 05, 2012, 03:06:32 PM »
JaFish, I would write a carefully worded, professional letter to the doctor AND cc the company that owns the clinic, saying exactly why you left and what the new doctor said. I would document every condescending remark, and let them know you will be telling everyone you know about the unprofessional behavior of the doctor. You should be an authority on that--- after all, you are a professional patient >:-(

That is terrific advise! I think I'll do that.

A66eyroad

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Re: Anyone get this comment about Venus Williams?
« Reply #40 on: September 10, 2012, 10:52:31 AM »
I love watching Serena play tennis and saw her yesterday as she won the U.S. Open. That is one amazing woman!

Venus was in the audience watching her sister play. You could tell she wasn't feeling well; she was definitely not her usual energized self. But she showed up to cheer her sister on, and I also thought she looked very sorrowful.

I'm sad for her. At the same time, I worry that she might not be getting the best care. I mean, she was sitting right in the sun, and for like three hours!
Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.

rosie

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Re: Anyone get this comment about Venus Williams?
« Reply #41 on: September 10, 2012, 03:02:27 PM »
I too was very athletic then Sjogrens gradually took over. I never know how I'm going to feel from day to day. If anyone asks about Sjogrens I just tell them to visit this website then maybe they can get a better understanding.

Byn

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Re: Anyone get this comment about Venus Williams?
« Reply #42 on: September 10, 2012, 07:07:40 PM »
Maybe Venus's Sjogrens is in remission.  Maybe Venus doesn't have a flare up of Lupus, RA, Fibromyalgia, or any of the numerous other AI diseases normally associated with Sjogrens. 
As a rule, people have difficulty understanding or accepting something that isn't picture perfect, or doesn't affect THEM.  I wish I could come up with a quick, sharp comeback for the "comparison" remark... but I'm just not that quick - sorry.  Don't let their lack of knowledge hurt you.  That's all it is.... Lack of knowledge.
« Last Edit: September 10, 2012, 07:15:53 PM by Byn »

Karame

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Re: Anyone get this comment about Venus Williams?
« Reply #43 on: September 11, 2012, 05:07:57 AM »
My two cents:  There's a 14-year-old gold medalist, how's YOU'RE daughter doing? There's a guy who won silver who doesn't have legs, how far can you run? There are people WITHOUT Sjogren's who're in the Olympics, too.  Why aren't you???

The Olympics is about superlatives.  Few if any of us can compete on that level.  I couldn't play tennis even before I got Sjogren's. I sure as heck can't do it now!

Great points!
I've forwarded 2 articles about Venus and her having SJS to select family and friends. I too wonder about what meds she is on, this special diet of hers - is someone cooking for her? I imagine I'd be doing somewhat better if I had someone cook for me. She also has a personal coach and that has to be a huge part of it too.

gardenlover

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Re: Anyone get this comment about Venus Williams?
« Reply #44 on: September 11, 2012, 08:49:20 AM »
My hubby and I have often considered what the side-effects of her treatment are going to be down the road.  She could be taking something that will impact her negatively down the road, just to follow her tennis dream.  Every treatment has big tradeoffs.