Author Topic: Anyone get this comment about Venus Williams?  (Read 14469 times)

irish

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Re: Anyone get this comment about Venus Williams?
« Reply #45 on: September 11, 2012, 02:17:03 PM »
I have to add that I had the Sjogrens and Myasthenia gravis since about age 20---it came and went and the fatigue was bad many times. Just thought it was me and that I was a wimp.

However, I had times when I could work like a dog. I bailed hay, helped remodel my whole house and all that went with it. There were times I felt like I could die, but I kept on going.

With Serena I can imagine that she is in excellant physical condition. She may be on Plaquenil or some other stronger medication. She may be full of prednisone during this time to keep her body "normal". We don't know for sure. The truth of the matter is everyone of us is different. The years down the road will show how Serena fairs with her illness. Remember that many times we can go weeks between flares.

Serena has to literally wait to make the decision every day as to whether she is able to play or not. I read this some place and I sure believe it. I bet after one of these tennis matches her collapse the next days is really something none of us would want to experience. Depends on what we consider important in our lives. Irish

meow

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Re: Anyone get this comment about Venus Williams?
« Reply #46 on: September 14, 2012, 09:39:27 AM »
I have to add that I had the Sjogrens and Myasthenia gravis since about age 20---it came and went and the fatigue was bad many times. Just thought it was me and that I was a wimp.

However, I had times when I could work like a dog. I bailed hay, helped remodel my whole house and all that went with it. There were times I felt like I could die, but I kept on going.

With Serena I can imagine that she is in excellant physical condition. She may be on Plaquenil or some other stronger medication. She may be full of prednisone during this time to keep her body "normal". We don't know for sure. The truth of the matter is everyone of us is different. The years down the road will show how Serena fairs with her illness. Remember that many times we can go weeks between flares.

Serena has to literally wait to make the decision every day as to whether she is able to play or not. I read this some place and I sure believe it. I bet after one of these tennis matches her collapse the next days is really something none of us would want to experience. Depends on what we consider important in our lives. Irish

Where is the LIKE button????? :)
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 #47 on: September 14, 2012, 10:18:52 AM »
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.

I'm glad you said this. I never thought of myself as "athletic," because I am such a klutz, but I was. And that is my pattern, too. I went from running 3 miles three times a week plus playing 4 hours of doubles racquetball at night to running (ok, jogging) 5 miles a day and playing doubles tennis to walking to .... not a whole lot now.

Sigh.
Sharon

meow

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Re: Anyone get this comment about Venus Williams?
« Reply #48 on: September 17, 2012, 09:57:48 AM »
I used to walk 2 miles on the school track every day but Sunday. When we moved, I was not near a track anymore, but I mapped out a trail through the neighborhood. The track was soft--made of recycled tires--and sidewalks are hard. Even a mile would cause my hips to ache like crazy by the end of the day. So I pretty much quit doing any cardio, and stuck to yoga/pilates. I went from 4 times a week to 2, because my new work schedule is chaotic...then, since May, almost nothing. Stretches at night when I could remember to do it.

So I dug out my in-home walking DVD yesterday and did a mile. It almost killed me. Not pain, because there is almost zero impact, but I have zero endurance. It really shocked me.  So I have to get back into it. I'm going to do a mile 4 times this week and go from there.
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

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

Tivia

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Re: Anyone get this comment about Venus Williams?
« Reply #49 on: September 17, 2012, 11:22:14 AM »
I used to run, bike, hike go caving and camping all the time..I am lucky some days I can pull myself up out of bed now. What kills me is it came on so fast, I guess if it had been some slowly progressing thing over the years I would have adjusted. But boom out of nowhere I cant do all the things I did just 6 months ago. I think Venus is inspiring but I also think she is pushing it to be competitive. And I think if she dont realize the long term impact its going to cost her dearly.

We all used to be able to do things, I was a dancer up till 25, very strenuous careers have a tendency to make you seek out other careers earlier than say an office job. Even in healthy people you can only be a top performer for so long.  I think she is starting to realize this I seen her sportswear line she has designed, and I think this is a good alternative career move for her. I wish her the best of luck in it, and I do like the designs  :)

About the whole , but you dont look sick thing. Nothing makes me madder than a wet hornet than to hear that. I even hear it from what family I do have. Oh just get out there and push yourself , stop trying to use an illness as an excuse  :o I said it before unless you are half dead and look it, or stopped breathing some people will never believe you are really sick. Not sick like someone thats laying up in a hospital bed hooked up to a machine. They are the people that have to have the visual proof to believe in the severity of your illness...otherwise you just have a case of yuppie flu..as my aunt puts it :(

slccom

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Re: Anyone get this comment about Venus Williams?
« Reply #50 on: September 17, 2012, 12:51:42 PM »
Tivia, that sounds like an aunt I would eliminate from my life. You don't need that!
Hugs, Sharon

JaFish

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Re: Anyone get this comment about Venus Williams?
« Reply #51 on: September 17, 2012, 01:53:20 PM »
. . . .
About the whole , but you dont look sick thing. Nothing makes me madder than a wet hornet than to hear that. I even hear it from what family I do have. Oh just get out there and push yourself , stop trying to use an illness as an excuse  :o I said it before unless you are half dead and look it, or stopped breathing some people will never believe you are really sick. Not sick like someone thats laying up in a hospital bed hooked up to a machine. They are the people that have to have the visual proof to believe in the severity of your illness...otherwise you just have a case of yuppie flu..as my aunt puts it :(

Oh, I understand this! I recently resorted to keeping a walking cane handy (so I'm not continually grabbing the shoulder of my 13 year old kid when I lose my balance!) and I'm enduring many speculative comments about "faking" it or "trying to get attention." Few people understand.

lr214

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Re: Anyone get this comment about Venus Williams?
« Reply #52 on: November 07, 2012, 06:57:03 PM »
Well, that stinks. I'm so sorry you had to suffer with those ignorant comments. I was diagnosed right before she announced she had it and I remember thinking, oh great, if she improves people will assume the rest of us are slackers or whiners.  She has a right to deal with it privately I suppose, but I like to think that if I had her resources, I'd try to bring awareness to the public as to just how devastating SJS is for so many. I'm not aware of anything she's done that way. We need a M.J. Fox.

It's not just the public that needs a clue either, my own rheumy (ex-rheumy) refused to look at my FMLA form and said that the only time I should have to miss work because of my Sjogren's is maybe 3 partial days a year to go to my appointments with him. I still get angry when I think of that visit. It's a good day lately when I can even drag myself to work at all. What a jerk.

Venus could do so much to help. Maybe she's still in denial? Maybe she doesn't want to be a celebrity with a cause?

slccom

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Re: Anyone get this comment about Venus Williams?
« Reply #53 on: November 08, 2012, 11:42:32 PM »
That is the "supercrip" phenomenon. Oh, you are blind? How about this story about the blind guy that climbed Mt. Everest? Oh, you are a leg amputee? Did you hear about this guy who walked up 103 floors with his prosthesis? Oh, you are deaf? AND blind? Let me give you this book about Helen Keller.

Sigh.
Sharon

Ark mom

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Re: Anyone get this comment about Venus Williams?
« Reply #54 on: November 09, 2012, 12:12:32 AM »
Speaking as a tennis player myself, I used to play very competitively, many hours a week, out in the sun without any problems, even though I have had undiagnosed Sjogrens for probably 20+ years.  During a tournament I could easily play two singles matches and a doubles match in one day. 

Several years later, my condition has worsened significantly, and I can no longer play in the sun, nor singles at all because overheating makes me ill.  Even a nighttime doubles match sends me into a mini-flare.  So, I definitely think that being in the early stages of the disease is allowing her to play at such a high level. 

While explaining to a teammate of mine why I couldn't accompany them to the state tennis championships this weekend, she asked me if that is what Venus has.  I said yes, and immediately qualified my reply with an elaboration of why Venus is out playing while I can't!!!!  She didn't even ask, but I could feel the accusation coming!  LOL.  Sigh.
41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

A66eyroad

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Re: Anyone get this comment about Venus Williams?
« Reply #55 on: November 09, 2012, 05:47:38 AM »
Oh good grief, Ark Mom!

When people throw Venus Williams up to me I like to answer, "I couldn't play like Venus BEFORE I was diagnosed with Sjogrens. Why would you think I could play like her now?"
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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.

meow

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Re: Anyone get this comment about Venus Williams?
« Reply #56 on: November 13, 2012, 08:54:24 AM »
All of the above is why, when I get the confused looks, I say "It's an immune disorder, like Lupus, only milder." I'm not saying it IS Lupus, but at least THAT is something everyone has heard of. And even though they might know very little about it, they know it is serious.
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

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

selavy59

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Re: Anyone get this comment about Venus Williams?
« Reply #57 on: November 14, 2012, 12:48:43 PM »
Venus has several advantages over many of us. She is young, she is still in excellent condition, she is at the beginning of Sjogren's and her wealth means she does not have the stress of working and paying the mortgage. She could easily keep playing tennis for the next ten years, although her singles career is now over.
I too was in excellent condition when I had the first symptoms of Sjogren's. I was one of the best in single sculls (rowing) and although my single sculling career was over I was still abe to compete in Fours and Eights for another 10 years. Now there is no way I can compete. Venus too will finally succumb, in the meantime however she is unfortunately going to make us all look like moaners.  :'(

meow

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Re: Anyone get this comment about Venus Williams?
« Reply #58 on: November 27, 2012, 11:20:11 AM »
SJOGRENS SLACKERS UNITE!  :P
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

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

Saundra

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Re: Anyone get this comment about Venus Williams?
« Reply #59 on: November 27, 2012, 05:02:33 PM »
I was extremely athletic when I was young (uneducated about OI) I played with broken fingers all the time.  I was and still am very competitive which TOTALLY SUCKS sometimes, other times I think its what keeps me pushing through.  I feel both ways about her as the picture of Sjogrens.  I'm still trying to understand it myself, much less explain to everyone else why I look fine but......insert list here....   I think over all she will raise awareness for us all.

XOXO
« Last Edit: December 03, 2012, 12:21:28 PM by LdyMntneer »