What's Your Fear?

011201104 · Post by **011201104** » Mon Feb 15, 2010 9:47 am

I just would give my life and give up everything to take MS from the one I love.

Loobie · Post by **Loobie** » Mon Feb 15, 2010 9:50 am

I've got to agree with Bob on this one. It takes some time to realize that it's not the end of the world. Now I say that not knowing what your initial onset is or the path of your progression. However, in most cases, it is seriously counterproductive to scrap all your future plans for something that may or may not happen; ie, you get debilitated by this. I'm a 3.5 on the EDSS, but I still work full time. I've had it for 8, almost 9 years. It isn't easy mentally initially, but over time you will realize that the one thing that will KEEP you sane is to push forward. It may not be as easy, but it can still be done.

Good luck with coming to grips. One thing I'm always on the lookout for is all the potential "demons" that come with this. You know depression, anxiety, and stuff like that. One technique I try to do is, at all costs, stay in front of stuff like that by getting educated and looking for the signs of those types of things so they don't get all the way on top of you before you can take action.

This disease sucks, no two ways about it. But one thing you will learn is to DO WHAT YOU CAN TODAY. Tomorrow is actually just as uncertain for everybody as it is for us. Life can change in a flash. Learn to milk out of a day everything that's in front of you. If you are worried about what MIGHT happen, you won't take advantage of what IS happening.

Take care.

011201104 · Post by **011201104** » Mon Feb 15, 2010 9:57 am

Day by day.

LR1234 · Post by **LR1234** » Mon Feb 15, 2010 10:44 am

011 Did you have CCSVI treatment? I have responded to you on the stem cell board too x

011201104 · Post by **011201104** » Mon Feb 15, 2010 11:23 am

No. I am not going to be having it.

LR1234 · Post by **LR1234** » Mon Feb 15, 2010 11:57 am

We are all in the same boat 011, I understand that you are fed up:( If I could wake up tomorrow with no MS that would be the happiest day of my life.
Maybe you are further down the road than me with the disease but I can't give up, I won't give up yet.

Filmmaker · Post by **Filmmaker** » Mon Feb 15, 2010 12:12 pm

Well, I have opted for the antibiotics to deal with MS as it is the only way that some people reported to be cured. So frankly speaking, i will not try anything else, no matter how long it takes. I am 29 and I had the greatest job I could dream of when I got diagnosed in March 2009. Then I just stopped everything. I have basically no mental drive to do anything except understanding this disease and getting cured from it! I know it sounds unrealistic but given that I have no physical disability, I really pray this works. My biggest fear actually is from the medical and pharma community not looking at MS as being a CPN infection. It is the only scientific explanation that could answer all my questions about MS, still, no one seems really interested in learning more, and above all, in treating it... So, put it in one word: my fear is called loneliness in the road of treatment....

Loobie · Post by **Loobie** » Mon Feb 15, 2010 1:09 pm

So you quit working and everything with no disability?

Loobie · Post by **Loobie** » Mon Feb 15, 2010 1:11 pm

011,

Why do you say in a different thread that this website has taken away what you love? I hope you are referring to MS doing that to you. I can't see a website doing that!

011201104 · Post by **011201104** » Mon Feb 15, 2010 5:04 pm

Because the person I love has barricaded himself in CCSVI land. Seriously. So that is why i feel like that. I just dont want him to go over the deep end if this doesnt work out for him. But I am going to support him no matter what. I dont doubt it will work, I just wish he could calm down a little and relax because its either going to work or its not. And it it doesnt we will try something else. My MS is fine. I know its a progressive cumulative disease. I have no problem being in a wheelchair. As long as I still have my brain, I can adjust. I am not interested in this Liberation procedure for myself. Im not ever going to be interested in that. I like my FDA meds. That's just me. Everyone has a different path to addressing their MS. Im looking into Tysabri this week so that will be new for me.

Lyon · Post by **Lyon** » Mon Feb 15, 2010 5:17 pm

011201104 · Post by **011201104** » Mon Feb 15, 2010 5:51 pm

Yes but mine is not affecting me as much like it used to and I have a totally different attitude than he does.

Lyon · Post by **Lyon** » Mon Feb 15, 2010 6:07 pm

L · Post by L » Mon Feb 15, 2010 8:42 pm

011201104 wrote:Yes but mine is not affecting me as much like it used to and I have a totally different attitude than he does.

Seeing a counsellor is pretty much guaranteed to change his attitude to some degree or another.

I feel for you though, it sounds like a pretty bad situation. But things are moving pretty fast with CCSVI ..

011201104 · Post by **011201104** » Mon Feb 15, 2010 8:48 pm

Counseling my be a great option. We are in North Dakota. Any suggestions?