Is it worth it? (Miserable vent).

[Goldfinch]

In order to have Tysabri, I would have to give up work and devote my life to it. Bits of me can see the point, other bits can't.

Is there any use to it, if what you're doing is basically subsisting, not living, not doing anything useful, just back and forth for medication?

I do understand, children, family, the Lord hath set his hand etc against self-slaughter, but is the point? I 'm not going to recover, or heal, or get better. Just might drag it out.

Devote your life to it? It's an infusion.One needle stick in the arm for two hours a month. I don't get this statement.

Who told you you're just going back and forth for medication? My infusions were once a month for two hours a pop. That's not a huge chunk of your time. I know Australia is big, but isn't your doc's office in the same territory even?

What's your DX again? I forget. I have a pal who is secondary progressive that takes Ty and he credits it for slowing his progression. He competes in the MS150 bike races here, his name is Craig Washka, googe him. He is irrepressably positive. I know he gets discouraged. we all do. But he is determined to use every opportunity available to him, and he thinks the Ty is helping.

I'm relapsing-remitting, and I KNOW Tysabri prevented relapses based on the aggressiveness of it befor eI went on Ty. I had been on Avonex, and the Avonex stopped working. When I went on Tysabri I had to wash out from Avonex for two months and take a steroid infusion first. The steroids, I believe, did not relieve the symptoms, as they wer estill going strong when I went on Ty. After I'd been on Tysabri for nine months, I realized that the symptoms had subsided to the point that I had sensation back in my hands again. They had been numb for a year, and they are back to nromal even now. I had to go off Ty because I am JC+ in the range that it is contraindicated. But I believe the Ty gained my body enough breathing space that the symptoms I had resigned myself to accepting as permanent, had healed. had healed to the point that I had sensation in my hands again.

Nothing ventured, nothing gained.

[justacowgirl]

Job
I always have enjoyed your posts and your upbeat attitude. I know from your posts that this last flare has taken a toll on you.

No one can tell you how to handle this and what it means for your life. What is easy for some is not for others.

But, based on what I have read from you; you have a deep resource of strength and humor to draw upon. This is only a life changer if you stop fighting.

Whatever you decide you can survive it. If it means you quit your job you can survive it. If you decide to keep working you will figure out how to do it all.

I know it is a trite saying but true that He closes one door and opens another. And Job ended up with riches on earth after his trials were through.

You are not MS. You are Job.

J

[bree2013]

Thinkimjob: I haven't logged on in a while and just read your post.

Yes, it's true you have to do what you feel is best for you - BUT, with the nasty flare you've been dealing with, you may not be thinking clearly; too tired and exhausted to feel like fighting.

Please try to take your doctor's advice. Perhaps you could give yourself a specific timeframe to try Ty. And would your doctor consider infusions every 5 or 6 weeks to start so it wouldn't impact your life every 4 weeks?

I have enjoyed and gotten so much from your posts - as have many others.

I hope you're able to make the right decision for you and you find a med that works.

Good luck,
Bree

[Thinkimjob]

Why, thank you, Bree. You're not wrong about not thinking clearly at the moment. Went to work yesterday (two days to get a newspaper out, due to company-mandated holidays).

The editor has taken another month's leave ('cos he's really, really tired, and he doesn't like the heat, and he's having a lovely time at the beach); Fluffy Rabbit is also having another week or two off, 'cos you know but she works really, really hard but, you know, but.

(I had a massive three days off at the height of this flare, and they whinged. Started Aubagio, didn't take leave. Yes I am a martyr.)

Which left me, a very much gobsmacked me, to write, lay out, spell check and send the newspaper. On my own!

Twenty pages long. Like writing, editing and publishing a book in two days.

I did spend much of the time singing, "Take this job and shove it".

Meanwhile the secretary brought her three children, all aged under five, to work. Let's just say they're not the best-behaved or quietest children in the world. Or even in any given room.

I very nearly cracked, especially when I rang the boss who's one step up the ladder, to find she, too, was still on holiday at the beach.

And it's been 40 degrees C all week.

[Cat Mom]

"Fluffy Rabbit" lol... haven't heard you mention her in a while. One just gets a visual of her from this nickname! Sorry I'm no help to you, just wanted to let you know you made me laugh at 7 a.m.

Jen

[Thinkimjob]

At least the Fluffster isn't parking in my disabled car park, Cat Mom.
Only, I fear, because she's not here.

[Tawanda]

At least the Fluffster isn't parking in my disabled car park, Cat Mom.
Only, I fear, because she's not here.

What happened? Dead? Fired? OMG...update on the Fluffster, please!

BTW, we have been clobbered by the reverse weather problem here in the States. The "Polar Vortex" shift, causing single digit temperatures (Fahrenheit!)!

What were we talking about? Oh yes, Tysabri. How goes it??

[Thinkimjob]

Nah, Tawanda, the Fluffster just got engaged to her boyfriend, on the back of an elephant in Nepal and will be back come Monday. Engaged to be married, thought I'd better clarify.

It was, as you can probably guess "just like totally amazing like but".