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Sjogrens Topics => Living With Sjogren's => Topic started by: angels04 on August 06, 2012, 07:18:02 PM

Title: Anyone get this comment about Venus Williams?
Post by: angels04 on August 06, 2012, 07:18:02 PM
HI Everyone
I was talking about the olympics this weekend and mentioned to two people about Venus having sjogrens..the comment I got from both of them was...she's out there playing tournaments and the olympics..why cant you do more?
I was so aggravated..its just like the " you look reallly good' or 'you dont look sick' comments. I wanted to choke them!  :'(
I was hoping she would bring awareness to this disease..instead Im seeing us compared to her :-\
what do you all think?
Title: Re: Anyone get this comment about Venus Williams?
Post by: slccom on August 06, 2012, 07:29:35 PM
That is why I am not so wild about having her in particular as our celebrity. There are a lot of people who think like that, I'm afraid.

If we fail to measure up to the super-crips, then there is something wrong with us.

I'm sorry your acquaintances or former friends, whichever they are, are such um, jerks. Ignorant, no doubt, but jerks nonetheless. I think we'll see a lot more of this.

Sharon
Title: Re: Anyone get this comment about Venus Williams?
Post by: eyeamdry on August 06, 2012, 07:51:31 PM
Well, it did knock her out for a bit and she had to take time off to get "well."  Also if SJS can do that to a young woman, who is a big and robust lady/athlete, what can it do to someone twice her age and 5' instead of 6'?  Also people who have had hard time jobs throughout their life, raised numerous kids and so forth.  I am not saying a bad thing about her, just that she's a large, muscular, in shape woman and most of us aren't.  Lucy
Title: Re: Anyone get this comment about Venus Williams?
Post by: irish on August 06, 2012, 09:40:08 PM
I would just tell them that she is probably full of cortisone so that she can play and once the stress catches up to her she will pay for all this activity.

Tell your "friends" that if you felt good you would be out there playing tennis. Also, ask them if they are out there playing tennis. Just had to be a little catty about it. The people that holler the loudess are the ones that do the leastest. lol Irish
Title: Re: Anyone get this comment about Venus Williams?
Post by: Meld256 on August 07, 2012, 02:36:21 AM
Angels,

I'm sorry you received those comments.  Another case of people being ignorant about our illness. I might think it's a good opportunity to point out how varied our symptoms are from one person to another.

I think we really don't know how Venus is doing, and suppose we must remember that there are some people who can live and manage fairly well with all this.  The rest of us are here discussing how to manage!

Irish-LOL

Title: Re: Anyone get this comment about Venus Williams?
Post by: SueAnn on August 07, 2012, 03:19:56 AM
I heard a commentator say that she never knows how she is going to feel when she wakes up and if she will be able to play or play well.  This was said during the doubles when they were explianing her not making it during the singles.   

I would make sure you tell the uninformed about this comment.

SueAnn
Title: Re: Anyone get this comment about Venus Williams?
Post by: gurs on August 07, 2012, 04:10:03 AM
when I was alot younger, I was very athletic too and was able to do alot...I really had to push myself and it was a struggle to keep up with everyone else. Now, as I have got older, and the disease out of control, I cant do anything.

Also, we have no clue of what medications/supplments she is on. She maybe doing great with her change in diet too.
She is a professional athlete as well. I hope she does this well 20 years from now, as it seems this disease progresses with age for most of us.

We cant win with what people say either. I got the "You dont look sick" for soooooo long..and now that I look extremely ill, I get
you dont look well...ughhhhh.. No one has a clue (even the medical community) on how debilitating this disease really is. My mom knows alot of people with extreme lupus (kidney issues, etc) and they are living a full life? yet, I cant move out of bed, autonomic nervous system messed up so bad..the neuro issues, everything.....you guys know how it is.

Gursie
Title: Re: Anyone get this comment about Venus Williams?
Post by: iraisin on August 07, 2012, 04:52:51 AM
There is a great disparage from what she "was" to what she is now. Also, her "baseline" was a heck of a lot better than ours. So going down from her baseline could take a bit more time than it did for ours.

And like I posted before, she has a lot more help than we do. She has people to take care of her home, someone to set up her food for her, a manager to take care of her business; bills; taxes; etc. and I'm sure the best doctor money can buy - and like mentioned before - lots of meds to keep her moving. Plus, she never gave birth.

Also, even amogst us, there are vast differences between our symptoms and abilities. So it's hard to say what her symptoms are and how much/often they affect her.

I know how you feel - the "you don't look sick" thing. It does get old...especially on the days that I am sick.

Title: Re: Anyone get this comment about Venus Williams?
Post by: A66eyroad on August 07, 2012, 04:56:16 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!
Title: Re: Anyone get this comment about Venus Williams?
Post by: artistangie on August 07, 2012, 05:13:21 AM
Well said A66eyroad!!
Title: Re: Anyone get this comment about Venus Williams?
Post by: Cheryl on August 07, 2012, 05:45:52 AM
There will always be someone who doubts the extent of your illness.   That doesn't take away from the phenomenal performance of Venus Williams and the example of perseverance and excellence she sets for us.   She amazes me.  She has indeed drawn attention to Sjogren's.  I love it that (despite her limits) she won the gold.

Lol and amen to A66eyroad's post!
Cheryl
Title: Re: Anyone get this comment about Venus Williams?
Post by: A66eyroad on August 07, 2012, 05:47:57 AM
And Amen to Cheryl! You're always the voice of reason, my friend!   :D
Title: Re: Anyone get this comment about Venus Williams?
Post by: mshistory on August 07, 2012, 05:54:53 AM
That's why I don't tell people I have Sjogren's... I don't want to be compared to Venus. I just say autoimmune disease or connective tissue disease - people don't know what that is either  ;D
Title: Re: Anyone get this comment about Venus Williams?
Post by: Nymph on August 07, 2012, 09:27:56 AM
I would say that I went through a very demanding graduate program with Sjogren's (pre-diagnosis but symptomatic); that the stress made it worse; and while I'm glad I did it, I wouldn't do it now! For many people, it seems, the disease is progressive or at least changes regularly. This is the case for Venus, too. We each have decisions to make about what is important to us and then do the best we can. While Venus is a good example of that she is certainly not the only example!
Title: Re: Anyone get this comment about Venus Williams?
Post by: Katybarstool on August 07, 2012, 12:41:57 PM
I agree with all that has been said. For my two cents worth: I suspect I've had Sjogren's since I was a teenager. I raised three children, worked full time, and worked part time for my bachelor hons degree, which I got at 35. My teaching certifcate was completed at 45, still while working full time. But that just about did me in. At 55, I'm down to working four days a week, and coping with the delights of this condition. I'm just grateful to be able to function at the level I do - and if people think I'm a wimp, that's their problem.

I take nothing away from her amazing efforts, but I wonder how Venus will be faring at my age.

Kathyx
Title: Re: Anyone get this comment about Venus Williams?
Post by: meow on August 07, 2012, 03:46:42 PM
Hahaha! Why isn't your 14-year-old out there winning the gold medal? LOVE IT.
Title: Re: Anyone get this comment about Venus Williams?
Post by: irish on August 07, 2012, 10:09:52 PM
kathyx, I bet she won't be playing tennis!!! Irish
Title: Re: Anyone get this comment about Venus Williams?
Post by: EllaBlue on August 10, 2012, 05:50:28 AM
I would like to say that we could hear tomorrow that Venus was flat on her bed and out of playing because we don't know.  She could get a remission of sorts, and as someone said, when you have a lot of money and help you do get the BEST of everything. I doubt getting dental care is hard for her. And like everyone said, I am too happy for others that do have things. Actually one of the gifts my mom gave me was to always, always be happy for others. So for me, especially when I am having a bad day and I hear about someone getting the new car they wanted or that job they tried for, I really am here smiling.  JOY is a great thing for us.

I have been discriminated a lot in my life. I had a neighbor ask me when I transferred to my downstairs apartment, and he saw the handicapped plaquered for my car IF I wanted to "fake a limp?" You know..we don't LOOK sick always. My answer?   "I have dealt with ignorance all of my life...I don't need to fake anything!"  And with that I drove off.  I don't have a car at this time, but when I did and would park in the handicap place.. boy could I get some looks.   Geesh!!!

My best advice is pretty much what everyone says. Tell anyone that sadly makes an inappropriate comment that everyone's course of disease is different OR do what I have done in the past..and that is find a GREAT article on Sjogrens (I did this with Lupus) and just hand them that.  Tell them you are sure if they read it, they will find all of the answers they need. And some of those articles do an amazing job of explaining things.
My best to you..
EllaBlue

Title: Re: Anyone get this comment about Venus Williams?
Post by: Rebecca on August 10, 2012, 08:08:46 AM
I like Ellablue's idea of handing out an article every time someone questions the disease.  That's great and it would eliminate the frustrations of explaining it over & over.

I wish I had the resources Venus Williams has.  I read that she and Serena were going on this special all natural type diet to see if it helped her symptoms and I thought to myself, "I wish I could do that."  Road block #1 for me though is finances.  It is expensive to eat all natural.  Road block #2, food prep - it's exhausting preparing meals AND stressful coming up with new ideas.  I am sure she has someone who helps out with the food shopping and meal planning/preparing.

Another note:  I have learned that I have this little bank of energy that I conserve for special occassions.  I can use that energy reserve to do chores OR go have some fun.  But I will not be able to do both so I really have to weigh out my decision.  On top of that, I realize that by using the energy reserve, I am going to pay for it heavily for a few days or even a week afterwards.  So I have to decide how badly do I want to do something.  I can take a pain pill and some ibuprofen and last through the activity but NOTHING helps the painful exhaustion I feel afterwards.  And I find myself wondering, does Venus have a similar reserve?  She is going hard during the Olympics right now.  What is she going to feel like once the physical and mental stress of it all is gone?  I bet she will feel the full brunt of this disease for a week or so, maybe even a month.  We probably won't hear about that though.

With all of that said, I just want to put out a Congrats on an excellent job to Venus. You go girl!  Keep Rocking It As Long As You Can!

Rebecca
Title: Re: Anyone get this comment about Venus Williams?
Post by: xANTHONYx on August 10, 2012, 08:59:48 AM
I don't get the comment too often, because I almost never tell anyone about me having Sjögren's...
(Wait a minute hold the presses! I just installed a mathematics and engineering add in for MS Word and now whenever I type Sjögren's I get the diaeresis on the o now. See? It happened again! That's completely unexpected.)
Anyway, back to my thoughtful and insightful post. I am in engineering school where it is highly competitive, so I don't want anyone to know as it might make me less desirable as a team member. That is, until something happens and I just can't go anymore. In my situation downplaying the problems I have with Sjögren's gives me more 'credibility' whenever I do have to come clean with everyone and take a break.

What I have got from people all week is something like,

"Hey Anthony, did you know that Williams woman has Sjögren's too?"

"Yeah."

"Wow, she must be really inspirational to you having the same problem you do and all!"

"Not Really."

"Well why not!?!"

"I'm doing just as much as you are in this competitive and mentally challenging career we have chosen. I'm already running at peak capacity and I don't need someone to inspire me to do more. Don't get me wrong, I watched her play live and I was cheering the whole way. If anything, the inspiring part of that was how she stepped up when it counted and truly dominated Sharapova to silence the critics"

"Well it's inspiring to me to see someone like her overcome all the disadvantages she has faced. Can you imagine all the uncertainty she has to face? I read an article on her and it said she can suddenly get tired. It caused her training partner to leave her as he thought she wasn't taking tennis seriously. Gosh, it must be awful to not know when you will be stricken with fatigue and pain and not have people believe you."

"When it's finals week and I have been up for 28 hours straight and I take a nap on the couch, maybe it will "inspire" you to let me sleep for a while..."

"HA! No problem, see you later."
Title: Re: Anyone get this comment about Venus Williams?
Post by: Nymph on August 10, 2012, 09:47:58 AM
Anthony, a truly thoughtful and insightful post.   ;)  Good luck on dominating school with Sjogren's. I think I came down with whatever it is that I have in grad school. Somehow I managed to survive and excel. I did get a couple of extensions on papers my last semester - even better than a nap! I hope you come across equally understanding and reasonable people. And good luck with your teeth. I'm really hoping for something to come through for you!
Title: Re: Anyone get this comment about Venus Williams?
Post by: meow on August 29, 2012, 09:54:08 AM
They had a brief update in the sports section Sunday, re Venus...and they actually described her symptoms as "crippling fatigue and joint pain." FINALLY.
Title: Re: Anyone get this comment about Venus Williams?
Post by: quietdynamics on August 29, 2012, 12:12:31 PM

Tell your "friends" that if you felt good you would be out there playing tennis. Also, ask them if they are out there playing tennis. Just had to be a little catty about it. The people that holler the loudess are the ones that do the leastest. lol Irish

Gee...I only wanted to learn pole dancing  :P

I don't really discuss SJS, my family is small.

And with others if they mention dryness, Sicca, I explain in terms of "broad spectrum" some people have a few symptoms, and others can have systemic ones similar to lupus, and additional autoimmune issues. Unfortunately, I am usually saying this to medical professionals.


 
Title: Re: Anyone get this comment about Venus Williams?
Post by: meow on August 31, 2012, 01:06:54 PM
Unfortunately, I am usually saying this to medical professionals.

That made me LOL. I am sooo lucky that my doctors are up-to-date and that they listen.  Even when I think they don't.
I was really mad at my endocrinologist 2 years ago. I felt LOUSY--achy, fatigued--and I was sure that this was because my thyroid meds were wrong. All of the blood work-- T4,  TSH, T3 uptake --all well within normal range (the updated normals) and I was very frustrated. We tried combos of synthroid and t3, which turned me into a crazy(er) person, but nothing helped.

Finally he did a scan on my thyroid, looking for nodes, looking for some explanation, also probably trying to shut me up. What he saw looked like a dried up honeycomb-holed gland the size of a peanut. AH. Hashimotos for sure, so lets check for other autoimmune stuff... and the rest is history :( 
Title: Re: Anyone get this comment about Venus Williams?
Post by: gold55 on August 31, 2012, 09:29:03 PM
Some of the people I work with think Venus looks awful....that she does look sick.  I believe they are referring to her lack of body weight.  I do think she looks more gaunt (sp?) then she did before her diagnosis but didn't she go Vegan?  Lack of red meat.....many lose weight!
Title: Re: Anyone get this comment about Venus Williams?
Post by: aussie mum on September 01, 2012, 01:28:29 AM
Maybe we should all ask our Drs when they are going to make us feel as well as Venus.
Title: Re: Anyone get this comment about Venus Williams?
Post by: Suzy on September 03, 2012, 10:14:08 PM
I think Venus is really struggling and anyone who follows tennis knows it (like my DH). Playing by herself, she can't seem to make it past the first few rounds of any major tournaments. I walked past the TV last week when DH was watching the US Open, and the poor girl looked like she was about to positively die of exhaustion. I know the look well.;) I'm sure every time she plays she has to empty out all the spoons in her silverware drawer, just like I have to do to get through hosting a party (an activity I enjoy). Sjogren's has had a huge impact on her career, and I hope she will help people see how devastating this disease can be (and be more understanding of my struggles).
Title: Re: Anyone get this comment about Venus Williams?
Post by: Billydude on September 03, 2012, 11:52:44 PM
I like Kathy am almost 55 and I think I've had it since I was a child.   Its all in degrees and there is nothing that is saying that she (Venus) won't be much worse in a few years.
Title: Re: Anyone get this comment about Venus Williams?
Post by: JaFish on September 04, 2012, 04:29:36 AM
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. 
Title: Re: Anyone get this comment about Venus Williams?
Post by: gardenlover on September 04, 2012, 06:00:59 AM
I just reply that Venus is lucky because this disease impacts everyone differently.
Title: Re: Anyone get this comment about Venus Williams?
Post by: rwharo 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"! 
Title: Re: Anyone get this comment about Venus Williams?
Post by: lostone 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,
Title: Re: Anyone get this comment about Venus Williams?
Post by: meow 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---
Title: Re: Anyone get this comment about Venus Williams?
Post by: bjnc 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.
Title: Re: Anyone get this comment about Venus Williams?
Post by: JaFish 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!
Title: Re: Anyone get this comment about Venus Williams?
Post by: A66eyroad 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

Title: Re: Anyone get this comment about Venus Williams?
Post by: adaubrey on September 05, 2012, 07:25:22 AM
well said a66eyroad. I was thinking the same thing.
Title: Re: Anyone get this comment about Venus Williams?
Post by: meow 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 >:-(
Title: Re: Anyone get this comment about Venus Williams?
Post by: slccom 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
Title: Re: Anyone get this comment about Venus Williams?
Post by: JaFish 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.
Title: Re: Anyone get this comment about Venus Williams?
Post by: A66eyroad 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!
Title: Re: Anyone get this comment about Venus Williams?
Post by: rosie 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.
Title: Re: Anyone get this comment about Venus Williams?
Post by: Byn 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.
Title: Re: Anyone get this comment about Venus Williams?
Post by: Karame 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.
Title: Re: Anyone get this comment about Venus Williams?
Post by: gardenlover 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.
Title: Re: Anyone get this comment about Venus Williams?
Post by: irish 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
Title: Re: Anyone get this comment about Venus Williams?
Post by: meow 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????? :)
Title: Re: Anyone get this comment about Venus Williams?
Post by: slccom 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
Title: Re: Anyone get this comment about Venus Williams?
Post by: meow 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.
Title: Re: Anyone get this comment about Venus Williams?
Post by: Tivia 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 :(
Title: Re: Anyone get this comment about Venus Williams?
Post by: slccom 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
Title: Re: Anyone get this comment about Venus Williams?
Post by: JaFish 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.
Title: Re: Anyone get this comment about Venus Williams?
Post by: lr214 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?
Title: Re: Anyone get this comment about Venus Williams?
Post by: slccom 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
Title: Re: Anyone get this comment about Venus Williams?
Post by: Ark mom 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.
Title: Re: Anyone get this comment about Venus Williams?
Post by: A66eyroad 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?"
Title: Re: Anyone get this comment about Venus Williams?
Post by: meow 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.
Title: Re: Anyone get this comment about Venus Williams?
Post by: selavy59 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.  :'(
Title: Re: Anyone get this comment about Venus Williams?
Post by: meow on November 27, 2012, 11:20:11 AM
SJOGRENS SLACKERS UNITE!  :P
Title: Re: Anyone get this comment about Venus Williams?
Post by: Saundra 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