Reply
 
Thread Tools Display Modes
Old 05-14-2008, 11:09 AM #11
BaxterTheBunny's Avatar
BaxterTheBunny BaxterTheBunny is offline
Member
 
Join Date: Jan 2008
Location: Atlanta
Posts: 329
15 yr Member
BaxterTheBunny BaxterTheBunny is offline
Member
BaxterTheBunny's Avatar
 
Join Date: Jan 2008
Location: Atlanta
Posts: 329
15 yr Member
Default

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.

Welcome to our group
__________________
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin
BaxterTheBunny is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (05-14-2008)
Old 05-14-2008, 11:28 AM #12
beautytransforming's Avatar
beautytransforming beautytransforming is offline
Member
 
Join Date: Apr 2008
Location: Gulf Coast, Mississippi
Posts: 194
15 yr Member
beautytransforming beautytransforming is offline
Member
beautytransforming's Avatar
 
Join Date: Apr 2008
Location: Gulf Coast, Mississippi
Posts: 194
15 yr Member
Default

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.

We all have to find out way of dealing with the grief and stress of this disease. I work in addiction, and have worked in hospice, and because of that have gotten a pretty positive attitude. I look forward to my life and days, and just don't let things get me down very much. Don't get me wrong, I DO have my bad days also.

I look at it like this. Life happens. At least with this disease I can plan a bit, regarding this disease. I could have an accident tomorrow that would make this disease a moot point. Healthy people can become invalids in a moment.

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.

When I am having a bad day, I let myself have it, cause just because we don't have the worst thing out there, doesn't mean we want to live with this thing we do have... and live with the uncertainty that it brings. BUT, most days I give myself a good dose of perspective, and I find living with this a bit easier.

I am not trying to put you or anyone down, and hope you don't take it that way. I am just trying to put out there what helps me on some days... not all, but most!

I hope you are feeling better soon! Put your head up and say we can take this!! It is doable!

__________________
Diagnosed with MS 4/3/2008
.

Had onset attack in 4/2000
.

Can stop blaming myself for symptoms now.
.


Visit me on
.
.
beautytransforming is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bobcatsrule (05-15-2008), Jules A (05-14-2008), lady_express_44 (05-14-2008), Natalie8 (05-14-2008)
Old 05-14-2008, 12:26 PM #13
Jules A Jules A is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,424
15 yr Member
Jules A Jules A is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,424
15 yr Member
Default

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.
__________________
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
Anonymous
Jules A is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (05-14-2008)
Old 05-14-2008, 02:58 PM #14
Natalie8's Avatar
Natalie8 Natalie8 is offline
Member
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Natalie8 Natalie8 is offline
Member
Natalie8's Avatar
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Default

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!

Quote:
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.

Quote:
Originally Posted by beautytransforming View Post
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!

Quote:
Originally Posted by beautytransforming View Post
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.
__________________
On Tysabri and love it.
.
Natalie8 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Jules A (05-14-2008)
Old 05-14-2008, 06:52 PM #15
starfish starfish is offline
Member
 
Join Date: May 2008
Location: NY
Posts: 166
15 yr Member
starfish starfish is offline
Member
 
Join Date: May 2008
Location: NY
Posts: 166
15 yr Member
Default

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.
starfish is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (05-14-2008)
Old 05-14-2008, 08:00 PM #16
Jules A Jules A is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,424
15 yr Member
Jules A Jules A is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,424
15 yr Member
Default

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
__________________
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
Anonymous
Jules A is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (05-14-2008), Twinkletoes (05-16-2008)
Old 05-14-2008, 08:29 PM #17
Natalie8's Avatar
Natalie8 Natalie8 is offline
Member
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Natalie8 Natalie8 is offline
Member
Natalie8's Avatar
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Default

Quote:
Originally Posted by Jules A View Post
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!!
__________________
On Tysabri and love it.
.
Natalie8 is offline   Reply With QuoteReply With Quote
Old 05-15-2008, 08:02 AM #18
Jules A Jules A is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,424
15 yr Member
Jules A Jules A is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,424
15 yr Member
Default

Quote:
Originally Posted by Natalie8 View Post
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.
__________________
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
Anonymous
Jules A is offline   Reply With QuoteReply With Quote
Old 05-15-2008, 11:00 PM #19
barbo's Avatar
barbo barbo is offline
Senior Member
 
Join Date: Apr 2007
Location: South Bend, IN
Posts: 1,098
15 yr Member
barbo barbo is offline
Senior Member
barbo's Avatar
 
Join Date: Apr 2007
Location: South Bend, IN
Posts: 1,098
15 yr Member
Default

Quote:
Originally Posted by Natalie8 View Post
I just need some reassurance that we eventually get used to this god awful diagnosis. I'm sitting here crying thinking it has been 9 months. Shouldn't things be a little easier by now?

Tonight I gave myself a copaxone shot and it hurt more than anything ever before--this was beyond the bee sting pain. I think I did it too far above my belly button and the pain shot up into my rib cage. Maybe there wasn't enough fat that high up? I could barely breath and it is still throbbing.

The shot is just a daily reminder that I have MS. Every single day. Day after day. It's like I can't escape it. Maybe if I could tolerate interferon I would only be reminded every other day, or 3x a week, or 1x a week. Wouldn't that be nice?

I'm sure the fact that I have a fever right now and feel cruddy isn't helping OR that my husband's two teenage kids came over and argued all night like teenagers will. The marriage, the move-in, and the step-parenting is so new and I only had 3 months to adjust before the diagnosis.

THANKS for listening. I think I just had to vent. But sometimes I'm just not sure I can handle this. It seems like just weeks ago I was posting the same thread. How do you all survive this???
Hi Natalie8 - I am remembering from my daughter that it is best to take it one day at a time always remembering that tomorrow might be better - not to sound like Pollyanna but it's just good for one's mental health. Barbo
barbo is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (05-16-2008)
Old 05-16-2008, 09:03 AM #20
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

Quote:
Originally Posted by Natalie8 View Post
I'm sure the fact that I have a fever right now and feel cruddy isn't helping OR that my husband's two teenage kids came over and argued all night like teenagers will. The marriage, the move-in, and the step-parenting is so new and I only had 3 months to adjust before the diagnosis.

THANKS for listening. I think I just had to vent. But sometimes I'm just not sure I can handle this. It seems like just weeks ago I was posting the same thread. How do you all survive this???

Adjusting to a new marriage, especially when there are teenage kids, can be hard on anyone . . . let alone with MS being in the picture.

I was married, had a difficult teenaged step son and two little ones when the MS took a turn. I adored my husband (still do), but we did not handle most things well together. We had a very active lifestyle, and things changed a lot when I got sick. He was also extremely over-protective of me, and I was struggling hard to keep my independance through that time. The stress of it all was too much for me, and I ended my marriage just so that I could have less to deal with.

I thrived on stress at one time, and prided myself on multi-tasking. When the MS got bad, I just couldn't do that any more, and had to "simplify" my life as much as possible to cope. I wish I could have found a way to do it while still maintaining my marriage, but I couldn't.

Since our break-up, my ex takes the kids 2 nights a week, and has the youngest at least one night every weekend. He feeds and entertains them with movies, plays, swimming, camping, fairs, vacations, etc., and he balances out their live's in a way that he never would have done if we were still together.

He is still my best friend too.

Obviously I don't have the answers , but I would suggest you try to find a way to stay on the fringe of your husband's relationship with his kids. Ask him to take them out sometimes when they come to visit, so you can maintain as much "status quo" in the house as possible, especially when you are not feeling well.

Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
.
lady_express_44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Jules A (05-16-2008), Natalie8 (05-16-2008)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Do the injections get any easier? Natalie8 Multiple Sclerosis 33 04-17-2008 11:59 AM
Making life easier with a Laptop. Adastra Peripheral Neuropathy 49 07-26-2007 02:51 AM
What would make dental visits easier? dr.Todd Reflex Sympathetic Dystrophy (RSD and CRPS) 27 06-29-2007 10:36 PM
Breathing easier.. a little easier anyway Busymommie Children's Health 5 09-30-2006 06:26 AM


All times are GMT -5. The time now is 05:04 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.