Author Topic: Anyone get this comment about Venus Williams?  (Read 14475 times)

meow

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Re: Anyone get this comment about Venus Williams?
« Reply #15 on: August 07, 2012, 03:46:42 PM »
Hahaha! Why isn't your 14-year-old out there winning the gold medal? LOVE IT.
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

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

irish

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Re: Anyone get this comment about Venus Williams?
« Reply #16 on: August 07, 2012, 10:09:52 PM »
kathyx, I bet she won't be playing tennis!!! Irish

EllaBlue

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Re: Anyone get this comment about Venus Williams?
« Reply #17 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


Rebecca

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Re: Anyone get this comment about Venus Williams?
« Reply #18 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

xANTHONYx

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Re: Anyone get this comment about Venus Williams?
« Reply #19 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."

Nymph

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Re: Anyone get this comment about Venus Williams?
« Reply #20 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!
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot

meow

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Re: Anyone get this comment about Venus Williams?
« Reply #21 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.
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

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

quietdynamics

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Re: Anyone get this comment about Venus Williams?
« Reply #22 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.


 
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

meow

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Re: Anyone get this comment about Venus Williams?
« Reply #23 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 :( 
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

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

gold55

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Re: Anyone get this comment about Venus Williams?
« Reply #24 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!
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

aussie mum

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Re: Anyone get this comment about Venus Williams?
« Reply #25 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.
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

Suzy

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Re: Anyone get this comment about Venus Williams?
« Reply #26 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).

Billydude

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Re: Anyone get this comment about Venus Williams?
« Reply #27 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.

JaFish

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Re: Anyone get this comment about Venus Williams?
« Reply #28 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. 

gardenlover

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Re: Anyone get this comment about Venus Williams?
« Reply #29 on: September 04, 2012, 06:00:59 AM »
I just reply that Venus is lucky because this disease impacts everyone differently.