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-   -   How are you today? (https://www.neurotalk.org/multiple-sclerosis/22891-how-are-you-today.html)

tovaxin_lab_rat 09-05-2007 12:34 PM

Beth

I so agree with AMN! Dump and run! You don't need the stress. It's hard at first, but believe me, it will get easier every day. And you've got a lot of support. And do not be afraid to ask for help.

(listen to me...she who never asks for help....someone smack me!)

AfterMyNap 09-05-2007 03:02 PM

Quote:

Originally Posted by Av8rgirl (Post 144711)
Beth

I so agree with AMN! Dump and run! You don't need the stress. It's hard at first, but believe me, it will get easier every day. And you've got a lot of support. And do not be afraid to ask for help.

(listen to me...she who never asks for help....someone smack me!)


*running into room*

*SMACK!*

*running out of room*

DM 09-05-2007 04:49 PM

Quote:

Originally Posted by Taffy (Post 144498)
The corkscrew is with our pocket knife! How about we go on horse back?

DM will clean up after them.

AHEM!!! The only horse I clean up after is~ a sawhorse!! ha!

Quote:

Originally Posted by AfterMyNap (Post 144503)
Okay, but you can put that giant knife in your pocket!

Yes, DM loves cleaning, she's been doing it all day! We'll just tell her that they're horshee's kisses, she'll buy it.:D

Slow day???? Ha! ha! I forgot to laugh!!

On a more serious note~~ So sorry for all that MESS you are going thru, Beth. I have to agree w/the others. This guy is just too much baggage for you. Free yourself and don't look back. Like Cheryl said... We are here for you.

Riverwild 09-05-2007 04:53 PM

Yikes! :eek:

So today I get up after a lovely sleep, worked all night. I have a message from my neuro's office. I call them back thinking it's about my Provigil scrip, which I am going round in circles with BCBS about...another story.

But noooo, the very nice neuro wants to know if I will do an interview with the local paper about my ride with MS and my treatment ( Tysabri)

He didn't have any more details, just said he would give my # to the editor of the paper and I would talk directly with them about the interview.

If I do this it will mean coming out to everyone I know and then some all at once. I live in a rural area and I would be all OUT. Very few people know outside of a close circle of friends.

In a way I am scared to be out. In another way, I feel as if it would be a great relief to tell everyone all at once. I may be able to help others who are " closet" PwMS. I'll be able to let people know about Tysabri and that it doesn't kill you! I may be able to let others know that it's OK to be out and increase awareness of MS in my community.

I'm going back and forth on this issue in my head and would appreciate any input and views from y'all, pro or con

MSacorn 09-05-2007 06:03 PM

Hi RW
I think it is an awesome opportunity. To spread the promising news about Ty, and to let the world know, so to speak. I think if "everyone" gets the basic info, then there is no deciding to tell or not to tell. If anyone has questions they can ask.

When I moved to Denver, I told most people, mainly because I was around for a bit, then I wasn't and let's face it people talk. They didn't know me before MS, so there was no comparison. Then those that wanted to more info, approached me and we grew closer because of the understanding shared.

In OH, I told noone for a long time. I tried to cover the stumbles, mental and physical. I was so concerned with trying to fit in. Maybe it's old age, but I like being different and am proud of what I can do. It fluxuates depending on sx, but it's just me, good/bad/clumsy/absent minded too.

I sure hope someone comes by with an opposing viewpoint too. Bottom line -only you can decide. Maybe the good old, pros v cons, list is an option. Feel free to run it by us. You know you've got alot of support here. :hug:

tovaxin_lab_rat 09-05-2007 06:35 PM

The same thing happened to me when I testified in DC re: Tysabri. The local news caught the article on the front page of the Wall Street Journal and called me - are you the same person? Yep that would be me. Would you be willing to do a TV interview? Hmmmm...sure.

There I was on the local news. Not once but 3 times! And then when Tysabri was re-released, they re-ran the story.

My family doesn't live here which is good b/c they don't know and I want to keep it that way. I think I would have thought hard and long about it if they did.

Like you, I did it for MS Awareness as well as letting people know that the drug does not kill people. You are the one who has to decide for yourself.

Taffy 09-05-2007 07:02 PM

I say if you are ready to come out of the closet, then do it! Boy River, you do things in a big way when you do things don't ya!:D

FG! Your family doesn't know that you have MS? You haven't told Holly yet?:eek:

tovaxin_lab_rat 09-05-2007 07:44 PM

Quote:

Originally Posted by Taffy (Post 144846)
I say if you are ready to come out of the closet, then do it! Boy River, you do things in a big way when you do things don't ya!:D

FG! Your family doesn't know that you have MS? You haven't told Holly yet?:eek:

Holly knows!

Speaking of Holly -- we had an exciting day with her today. She's had this weird thing going on with one side of her face for about 2 weeks. We thought she had gotten stung by a bee or a spider bite and it would just go away. Well, not so fast. This morning I noticed that in addition to her droopy lip, and her right ear that didn't perk up, her right eye doesn't blink.

So, off to the Vet we go this morning. (not her favorite place to go either!) Poor Holly.

So, after some poking her face with a needle (I already did that and no reaction), and sticking a scope in her ear and seeing nothing, and shining a light in her eye and seeing no flinching...the Vet and I came to the same conclusion -- idiopathic partial facial paralysis aka Bell's Palsy. Yep, dogs get it too.

Most time it resolves itself within 6-8 weeks or so. Problem is it can get worse so we have to watch for sign of imbalance and problems swallowing. And poor Holly needs artificial tears cuz she doesn't blink!

Other than that...she's healthy! Weird.

Boy was she glad to get out of that place today! I bought her some special treats at the doggie store today!

:D

AfterMyNap 09-05-2007 08:08 PM

Boy, RW, that's a tough call. I reallly didn't have a choice in the matter, too many of my friends had been following my testing and progress, so by the time dx came, the bets were paid and it was a done deal.

In your case, my first concern/question is whether there is anyone who would be hurt or upset finding out via the news.

Second, could it impact your employment in any way?

Finally, are you prepared for the phonecalls and stupid questions?

Creating awareness can be accomplished in a myriad of ways that don't involve personal disclosure. Maybe decide if your objective would be more about "getting it off your chest" or more about awareness.

The other option is to ask to be shadowed and to keep your identity concealed. It would open the door to talk about how difficult it is to explain the disease to others, especially colleagues and bosses.

Hey! The best choice would be to fly dm in to work as your double! She is a stuntwoman, afterall, and all you'd have to do is use a line feed to give her your answers. Perfect. There's the solution!

Judy2 09-05-2007 08:56 PM

Well, today was my second steroid IV, so am hoping for better things a few days down the road. Know I have that wonderful "withdrawal" coming, but what's a few more yucky days if it helps in the long run!?! The floaters and flashes are still here, but not as bad. Now I have that "flushed" feeling and steroid headache.

Tomorrow morning the "bloodsucker" comes to get a sample to check my Coumadin level after that heart episode a couple months ago. No wonder my veins are lousy!!!

RW -- that is a tough call, especially if it would affect your employment. Back many moons ago when I was still working, I told my boss since it was a small office with only three of us so we seemed more like friends -- I thought! Was just newly diagnosed, going through a divorce, two rebellious teenagers, trying to support myself and one of those teenagers on a secretary's salary in a small town. At first it was all concern and "how can we help", which soon turned to "you're late again", "everything isn't done in 10 minutes now", etc., etc. Most people aren't aware of the damage already taking place in our brains before it shows up on the outside. If we're not falling down or in a wheelchair right off the bat, they don't believe us when we might need a little extra sleep, more difficulty getting up and dressed etc.

So.....this would be a good chance to educate the masses, but be sure you wouldn't be jeopardizing yourself now and for your future. If the time ever comes when you DO need a cane, wheelchair, etc., then there's no hiding. But hopefully with the Tsyabri that time will never come!! Good luck with whatever decision you make. We're here to listen!


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