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Old 05-14-2008, 09:18 AM #1
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Quote:
Originally Posted by AfterMyNap View Post
I'll tell you the truth, though, gray hair is way harder to accept than MS!
So are fine lines and wrinkles, weight gain, more doctors visits, and of course, teenagers. LOL.
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Old 05-14-2008, 10:36 AM #2
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It took me about 2 years to be ok with it and not panic all the time. Getting a counselor is a good step in learning how to deal with it.
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Old 05-14-2008, 11:09 AM #3
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I've been dx'd for 6 years. The first couple years were the hardest emotionally. It doesn't necessarily get 'better'. You will grow to cope better I think is the way to say it.

Life is hard enough dealing with relationships, money, etc. and then to throw a chronic illness on top of it. All those things will be even more complicated by the MS.

I agree with Sally, don't let your DH and his kids slide. You need to politely communicate with them that you need their support. The habits all of you form now in your relationships will stick and be hard to correct down the road.

Talking with others who have the disease will really help. What I say is, "Healthy people can not understand sick people. Not because they don't want to, but because they just can't." This board is great. I'm continually amazed how when I post some freaky symptom I'm having how many responses I get.

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Old 05-14-2008, 12:26 PM #4
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I dare say it does get a bit easier mentally. At least the shock wears off and you will witness life going on.

I doubt only having a shot once a week will really take this off your mind. It has been several years for me and still not a day goes by without MS crossing my mind. Not in the panic way as early on though.

I'm on Copaxone and view the daily shot as my fight against this stinking disease. Hang in there, write to us and definitely consider speaking to a professional as depression can also go hand in hand with MS.
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Old 05-14-2008, 02:58 PM #5
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Thanks everyone for being so supportive and encouraging. It makes it more bearable that is for sure. I am just overwhelmed sometimes by how nice and caring everyone is on Neurotalk. I was almost afraid that no one would respond--silly me!

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Originally Posted by Jules A View Post
I dare say it does get a bit easier mentally. At least the shock wears off and you will witness life going on.

I doubt only having a shot once a week will really take this off your mind. It has been several years for me and still not a day goes by without MS crossing my mind. Not in the panic way as early on though.

...Hang in there, write to us and definitely consider speaking to a professional as depression can also go hand in hand with MS.
I think I may still be in shock mode. I'm glad Jules you (and others) think it wears off over time. I just read on some MS website that people tend to be over the shock after 6-9 months and of course I'm at that 9 month mark. Okay now...time for this to be emotionally manageable! Now where did they get this figure from?!

I have been in therapy for 16 years now. I'm a big believer in talk therapy and anti-depressants if you have to use them. I made GREAT strides and thought for sure I would have all of the skills to deal with this MS monster. But it is throwing me for a loop. I have recently switched to a psychologist where 80% of her clients have MS. She has helped significantly. But she has been out of town for the past 3 weeks. Hmmm...maybe that's why I have been struggling? I see her tomorrow which is good.

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Natalie, I am sorry you are feeling badly! Maybe it is just an emotional day. I am starting copaxone on Monday and hope that it doesn't remind me daily of the MS. I take weekly shots of B12 now, and just say it is to help keep me healthy. I hope that is the attitude I can use for the copaxone.
Good luck with the copaxone!! I'm sure for both of us over time it will become routine like brushing our teeth. That's what everyone says!

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I look at it like this. Life happens. At least with this disease I can plan a bit, regarding this disease.

I was watching a hockey game either yesterday or the day before (I think it was the stars game, so the day before), and they had a young man on there that was 28. He has terminal cancer. A friend of mine lost her 33 year old friend to cancer just last week. My 3 year old niece has leukemia. They found out the day before Christmas. She is on chemo, in the hopsital most of the time, and has no hair left. All this, to me, puts MY disease into perspective.
I will say that my DH thought I might have had a brain tumor from the O.N., headache, and dizziness that first came on. So we were relieved it wasn't that and just plain old MS! It's hard for me to think of the MS as a "life happens" sort of thing, though. Not to go into huge detail but I spent years in therapy sorting through all sorts of terrible "life happens events" from my childhood, including abuse from 2 different people when I was in grade school, an unnuturing mother who didn't plan to have me, a schizophrenic father who never got meds and whom my mother divorced, and then my father ultimately committing suicide when I was in high school. So right before I got diagnosed I was 4 months away from being 40 years old. I was on top of the world emotionally after years of hard therapy work. I even took a break from therapy and did fine! I had just gotten married for the first time in my life and my career was taking off after long years in graduate school. I thought -- jeez, the first 40 years were REALLY REALLY hard but I made it through. Pat yourself on the back and get ready for the next and best phase of your life to come. You deserve it. And then this MS thing gets dropped on me completely out of the blue. I think...what? You mean the next 40 years are going to be another &*$!# life trial that involves courage and strength too? Doesn't the universe owe me some kind of break? Do I have bad karma or something? Incidentally, I always find the cliche "God never gives you more than you can handle" so so so unhelpful. It makes me mad I guess. But I am sure I will keep soldiering on.

Thanks for listening to me vent, yet again.
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Old 05-14-2008, 08:00 PM #6
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Quote:
Originally Posted by Natalie8 View Post
I thought -- jeez, the first 40 years were REALLY REALLY hard but I made it through. Pat yourself on the back and get ready for the next and best phase of your life to come. You deserve it. And then this MS thing gets dropped on me completely out of the blue. I think...what? You mean the next 40 years are going to be another &*$!# life trial that involves courage and strength too? Doesn't the universe owe me some kind of break? Do I have bad karma or something? Incidentally, I always find the cliche "God never gives you more than you can handle" so so so unhelpful. It makes me mad I guess. But I am sure I will keep soldiering on.Thanks for listening to me vent, yet again.
Thank you for sharing this. I understand your feelings. After surviving a pretty crappy childhood also it was a challenge for me not to be too bitter when MS suddenly showed up in my late 30s.

By the time I was diagnosed I had a great marriage, stable finances and was ready to breathe a sigh of relief. For the first time in my life I didn't regret being born. Sometimes I'm pretty discouraged by the hand I have been dealt and while its not too much of a consolation I know there are people who have it worse. I continue to move forward while I can. Hang in there. Jules
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Old 05-14-2008, 08:29 PM #7
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Thank you for sharing this. I understand your feelings. After surviving a pretty crappy childhood also it was a challenge for me not to be too bitter when MS suddenly showed up in my late 30s. By the time I was diagnosed I had a great marriage, stable finances and was ready to breathe a sigh of relief. For the first time in my life I didn't regret being born. Sometimes I'm pretty discouraged by the hand I have been dealt and while its not too much of a consolation I know there are people who have it worse. I continue to move forward while I can. Hang in there. Jules
Thanks for sharing your story too and the positive thoughts. I guess every once in awhile I just want to scream at the world "why me?" But you are right that there are people who have it even worse. I have a loving husband, I'm financially stable, my job makes me very happy. And I'm trying to convince the DH to get a dog (can't have cats any more since I developed allergies). I once read an article about "balance dogs" for people with MS. I thought that was so cool, particularly since they suggested Great Danes which I have always been enamored with. I should be thankful that balance isn't a problem and that I can walk. But somehow getting a dog like that feels like a security blanket!!
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Old 05-15-2008, 08:02 AM #8
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Quote:
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Thanks for sharing your story too and the positive thoughts. I guess every once in awhile I just want to scream at the world "why me?" But you are right that there are people who have it even worse. I have a loving husband, I'm financially stable, my job makes me very happy. And I'm trying to convince the DH to get a dog (can't have cats any more since I developed allergies). I once read an article about "balance dogs" for people with MS. I thought that was so cool, particularly since they suggested Great Danes which I have always been enamored with. I should be thankful that balance isn't a problem and that I can walk. But somehow getting a dog like that feels like a security blanket!!

Oh definitely look into getting a pooch! All pity parties aside, lol, I can not imagine a life without my critters. I promise you there is no way to remain sad when you have a silly puppy bouncing around your feet.

While neither of my dogs would be even slightly helpful with my balance they are the best kind of therapy for the soul. Please keep us posted.
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Old 05-14-2008, 06:52 PM #9
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Natalie8,

It sounds like you are processing everything and trying to reason about what was and what is. I think we all do that. I think it is part of the process we all go through when we have something terrible happening in our lives.

A local support group is good because you will meet folks who have been where you are and survived it.

This space is good because you will get some great advice from people experienced with your medicine.

One day is filled with so many adjustments for you. I hope the "C' works for you.

At least you have a few people with you, who can help with everyday chores when you are not up to it. Learn to ask for help and don't be a hero. Stress makes this disease worse.

Find some ways to be good to yourself. For me that is soaking my feet in a foot solution and giving myself a little pedicure.
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