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Old 05-08-2008, 07:41 AM #11
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I have a friend who isn't interested in learning about MS and I think that is unfortunate. She thinks a cure is just around the corner, that Beta will work wonders, they will come up with an oral med (I could give a rip, I'd just like one that works better) and that she may not even have MS after all.

My biggest issue with denial is that I worry it will stop people from preparing for the what-ifs. For example the financial aspects, housing accomodations and finally the prospect of long term care, that might need to be made in the future. It would seem to me that considering these issues while you feel good and can make adjustments easily would be prudent. Course I'm the one that immediately after diagnosis went back to college for a degree that would offer me job flexibility for when/if the time should come.
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Old 05-08-2008, 12:07 PM #12
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Ya' know, B2, it sounds less like denial than refusal to me. That's not all bad in my book. My attitude is that the MS is going to do whatever it's going to do— but so am I.

I'm SP non-remitting now and that's just how it is. To spend too much time thinking or talking about it would surely send me into a downward spiral. It's not denial in my book, it's just kind of, "What ever. I have things to do." I don't immerse myself in MS research too much because, frankly, it bores me. There are so many better things to consume my time! Like stalking!
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Old 05-08-2008, 12:17 PM #13
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I am not sure if my mode is denial, acceptance but not giving in, going on with life, learning but living... they all seem to cross-over on one another.

There are times you can't deny this disease... like when you have a new symptom and you have to learn to deal with it, or when you are in the middle of a flare. Other times, when you are just in the midst of life, what is wrong with forgetting about this disease? I mean, is that really denial? Do people with HIV think about it everyday, or do they just deal with it when they have to.

I am thinking about dealing with it when I have to. Otherwise, there are so many questions that can get your feathers up that you may neve rhave to worry about...

Planning, yes, planning is good. Having provisions set up is good. Kinda like when you plan a cookout, you have to have provisions for bad weather. Well, make the provisions, but plan on the cookout...

I see that as life, not denial... but, what do I know. I am not sure what I know, feel, or think right now.

I agree with aftermynap... what ever... just live....
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Old 05-08-2008, 12:27 PM #14
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But can you ever go a whole day without thinking about MS? I can't, I don't dwell on it as much as years ago and I'm also of the "life must go on" mindset but it is in my thoughts every single day.
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Old 05-08-2008, 01:02 PM #15
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Originally Posted by Jules A View Post
But can you ever go a whole day without thinking about MS? I can't, I don't dwell on it as much as years ago and I'm also of the "life must go on" mindset but it is in my thoughts every single day.
I guess that is a very personal issue. It depends on how you deal with and dwell on things. I can't go, right now, a day without thinking about MS, but I am in research mode and it is very new to me... in a way. When my dad died, I thought there would never come a day that I didn't think of him being gone. Well, there are plenty of days that I don't think of the fact that he is not here with me.

I had gastric bypass. I thought, because of the lifestyle changes it has on my life, that I would never go a day without that being in my mind... that I had surgery to re-route my insides to lose weight. There are plenty of days that I don't think about that.

I try and live in the here and now. I admit everyone can do that differently, and am not trying to put down anyone with their way of dealing with life. Right now, in the moment... MS doesn't need to be the highlight of my life, so I push it back. Eventually, it will drop off my radar until it needs to be there. But, that is how *I* am.

*THIS* is a reason I am big on not being labeled... and why it took me 8 years to allow myself to get this label. Once you have it, if it is on the forethought of your brain, then it is going to affect you in some manner.

My daughter came to me with 3 labels that was placed on her before she was 9. She had the labels of ADHD, bi-polar disorder, and mental retardation. She was on 3 heavy duty medications. I took her off of every one... and have not had ONE issue with her that could not be handled with proper discipline and higher expectations. I did not continue to label this child, because before she came to us, she lived up to her labels, because they were expected and used to dismiss her behaviors. Now, she has no label to fall back on. She is an A-B student (she is in main-stream classes, although not in the grade children her age are in), whose behaviors have pretty much gone away. The only behavior left is she is very talkative (can't imagine who she gets that from ).

I don't want to live with a label. I can live with a disease, and deal with it when I have to, but living with the label means thinking about it every day, and living up to everything is says (oh my, am I tired, is it from my MS - no, it is because I have worked 80 hours this week, my leg hurts, is it my MS - no, it is cause I ran 3 miles instead of 1 yesterday...ext)

Do I make sense?

I do want to make one thing clear. I am not trying to put down ANYone with this post... we all deal with things our way, and to each his own... this is just my way
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Old 05-08-2008, 01:06 PM #16
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Originally Posted by Jules A View Post
But can you ever go a whole day without thinking about MS? I can't, I don't dwell on it as much as years ago and I'm also of the "life must go on" mindset but it is in my thoughts every single day.
Nope. I have to think about it every day, but it's just part of the day to me. I have to think about putting my glasses on to drive, wiping my backside in the bathroom, and opening my mail too. It's just one more part of my life.
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Old 05-08-2008, 02:50 PM #17
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Jules - I don't have a choice but to think about it every day. I may not think about symptoms or how I got this or anything like that but I do think about it when I have to take my meds or do my shot. It has become everyday routine kind of like brushing my teeth.

However, I think of it in a more positive way than negative. When I take my shot, I kick back on my bed and meditate and think of how this med is preventing MS from getting uglier. That too has become routine for me.

Denial can be both a friend and a foe. I think Tom was right by using the word "ignore." I ignore it most of the time and just keep going.
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Old 05-09-2008, 07:07 AM #18
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Originally Posted by Jules A View Post
Hi Tom,
I should know this but I'm guessing that since you aren't seeing a neuro you declined to do the DMDs?
No DMD's. We came to our own conclusions back in the early 90's during the trials.

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Old 05-10-2008, 02:05 PM #19
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LOL...BTU, I am one of "those people" (PPMS, or some version of it)..I've always felt bad for the RRMSr's who go thru such devestating relapses. I guess this disease just sucks in all its forms. Nothing wrong with a little denial, just don't let it keep you from taking care of yourself!
Me too, but I thought I wasn't in denial, guess I was. Need a wheelchair now, called insurance, a wheelchair person came and measured me to have custom chair made, will take awhile! Had Canadian crutches, walker ready before need but as DH says, he's been telling me for a year, get a wheelchair. Luckily I could afford a break-down less expensive travel power chair and can use it in house until I get the other. Like to think I'm ready for anything, but I wasn't. But like going to AA, I can say "Hi, I'm Kicker and I'm PP." But I needed a wheelchair sooner, not later.
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Old 05-10-2008, 10:47 PM #20
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I'd like to think I'm ready for anything, too, Kicker..But that was true even before the MS dx..On my last MRI a couple weeks ago, they found new lesions, and my neuro suggested the possibility of trying Tysabri. I haven't really decided what I'm going to do yet. The physical sx are bothersome, but it's the way it affects my thinking that bothers me the most. If Ty can help with that, I might go for it.
I drove my daughter to the store today, and as I was waiting in the car for her I was watching all the people go by and thinking every single one of them has something in their lives they see as devastating, or frightening, or depressing, or painfull...It's all relative. Realizing this was kind of comforting, in a way. We really are all in this together..
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