My husband and I were talking about the US Open. I asked him who was the better player, Serena or Venus. He said, "Venus was. But until she figures out that syndrome problem, Serena's better" :)
I asked my husband if he saw on the news about Venus Williams.
He said, "Yes, I saw it."
I said, "She has sjogrens disease. The same disease as me."
He said, "I don't like tennis anyway."
Whatever.
This is further proof that men's minds work in mysterious ways. 8) Irish ;D
Wow ladies, just....wow. ::) How sad that the guys still don't "get" it. :(
Patze
:) To be fair to my husband, he's been a paraplegic for over 40 years. He manages beautifully, and people 'just can't believe all the things he does for himself'. He doesn't like attention, and doesn't want me doing things for him. After 25 years, I'm so used to the chair that sometimes I don't see when he really might need help. He puts up with my fatigue and my mental problems. Doesn't understand it, but accepts it. The rest, he just kind of blows off. He kinda thinks I'd be better going off the seizure meds and just have a seizure (grand mal). They don't come that often, after all.
Oh, but you don't look sick! I know that picking on our spouses is convenient be cause we live with them. We have good days and bad days. Days that things get done and days that they don't. If you don't look sick to the world then most people believe that nothing is wrong with you.
My wife colors her hair to make people think that she is younger than she is. I shaved most of my beard to remove the grey. We live in a society of youth. Eventually, Williams will make it to a forum and begin to understand the issues related to the disease. She will learn to manage what she can and cope with the rest. My fear is that she has the money to get a doctor to medicate her to death as she tries to key her super woman self image. Why would one twin have it and the other not, I do not know. We have had pairs of twins on the forum with it. We have had one twin with and one with out. Give her some time to learn about this disease and learn to manage it. She may have to play a round of doctor roulette before she takes it seriously.
If I were her on this forum I would not self identify with all the posts about me. It would be a block to me reading the posts on the forum.
Joe, I appreciate your posts. Thanks for sharing.
I did not think Serena played that well at the US Open. She came in 2nd
She just seemed off her game at the Open.
I wonder if her sister's health is affecting her game.
Hi Joe,
Um, Serene and Venus are not twins. ;) Venus is 31 and Serena is 29. ;D
Sorry I do not follow sports. Then strike twin and put in sisters. I am sorry for my mistaken assumption.
Joe, I don't follow sports either, but my husband sure does :)
well,
with the venus williams situation on the news
I have one story to tell.
Every day practically when my husband speaks to his mother
who lives in another state, she politely ask how am I doing.
I havent become consistently sick since I was no longer able to work 2+ almost 3 yrs ago.
He tells her the whole ugly truth,every time, and never candy coats it.
It has seemed like it's taken FOREVER for her to understand,after much explaining.
I still dont see that she gets the whole picture.
SHE mentioned to my husband she saw the Venus williams/sjogren's story on T.V.
one thing she asked my husband was
"so she dropped out of tennis for a while. for how long do you think until she gets better"
So proud of my husband, his reply was:
"Mom, she's a pro athlete. She bowed out of one of the biggest matches in a tennis players career."
(silent contemplation)
my husband continued:
"with this disease you never know.it can be mild or it can be severe
like "____"<(insert my name here) has it. It might be the end of her career as a tennis player.
look at what happened to "_______" she couldnt work anymore.
you can't believe how she fights it every day, and some days it's a losing battle.
There's no "cure" mom"
so proud of my husband and the clear concise words that came from his heart on my behalf.
I have wondered,still wonder, if certain family on his side really believe how sick this disease
can make you.has made me. Have felt often i'm a suspect for being a faker and an exaggerator.
(sigh) ....but so what.
I have nothing to prove.
My husbands'got my back' God love him.
I thank God every day I have a husband who sticks by me,and tries
to do everything he can to get me thru this. :'( :)
after I got my diagnosis about hiatus hernia, my husband said "oh thats good, so you don't have sjogrens anymore"
I had to explain that now I just have added another illness to the list.
then on the other hand we have another friend with a chronic illness who has planned a big wedding in a foreign country. lots of stress and travelling. She is already bedridden and unable to do anything.
my husband said, "why would she plan this, she knows she has fatigue problems, you handle you energy and stress much better"
It's good to have someone who has your back. Sometimes I think my husband really does, but can't express it any more than he can talk about being a paraplegic. It just is. We deal with the hand we're given. I'm grateful that he's so level headed when I fall apart.
you can bet there are some retty powerfull doctors that like to lay tennis lining up to treat her, trust me,, she will see a lot better treatment then a lot of us here get,, but i;m not complaining,, I;m justsaying,, but like in the past, I have been known to be wrong,, very wrong
Joe- why do you say you wouldn't read the posts if Venus self identified if she came here? Did I read that wrong?
sunnybunny,
This is off the original topic, but wanted to say Thanks for sharing your story about your husband. That was wonderful of him to be so clear to your MIL about the struggles that you face daily.
I'm also blessed with a husband who "has my back" and has clarified with different people my health issues.
Just a couple of weeks ago we were both talking with someone who's only known us since my health deteriorated. He said something about me being retired and my husband still working hard. My dear husband shot back pretty quickly "She worked hard her whole life until she became ill with Sjogren's and worked rings around me while raising our kids. I'm lucky now because she really works hard to make our home nice and my life easier, even though it's tough for her to do." What a sweetie! I am a very blessed lady. ;)
Jozie, I think Joe said he believes Venus wouldn't reveal who she is.
Kudos to all the great spouses.
Thanks dj. You got it correct.
Awww Sunnybunny, give that hubby a hug for having your back!! Lucky you!
Patze
I am so glad for you guys who have families and husbands and friends who understands your disease. My husband tries to, but still is unhappy if his laundry's not done due to me sleeping all day, unable to get out of bed. He would never tell his mom other than that I'm OK, or his friends. He thinks me spending time on this forum makes my symptomes worse, and that I'm imagining the increasing dryness in my mouth and eyes.
I have not met any other person with Sj?grens in Norway, it is not a disease spoken of, not among doctors, not among others. Even my mum, who has a diagnosis of fibromyalgia, struggles with seeing how this possibly can't be my own fault, something I have caused my self, or is faking.
I really, really hope this whole situation with Venus Williams results in some serious awareness around this disease, because I am so tired of defending myself. And I need my falting energy for other things! I was kind of happy the day my bloodtests came back positive for Sj?grens, because I thought maybe I would have proof that I had a "proper" disease, not just faking it out of lasiness...
Turned out that was a long shot...
I hope for better understanding for all of us, and better treatment, both medically and socially. Best of wishes to you all from Oslo.