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Old 05-02-2009, 11:50 PM #1
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Default Life is changing Monday....

My stomach has been fluttering all day.....my eyes keep tearing....I know I will be fine, but I still can't get past the feelings of dreaded anticipation that my life is going to change forever on Monday. I start on my copaxone treatment that morning.

I have not been talking about this, because I am trying to put it out of my mind, but I can't. I've been avoiding the phone for a couple of days now, not wanting to answer questions and I certainly do not have the energy to pretend that am feeling strong because I am not, .....not at all. I feel completely drained.

I feel ripped off AGAIN!! I felt so ripped off for most of my 40 years because of being a victim to my sister's drug addiction. She will be 9 months sober on May 6th and I really felt that everything else was going to be so easy, because I had my sister back. I could not imagine anything could bring those painful "rippped off" feelings back. All I wanted was for her to be sober and back in my life, because those horrible feelings would end..... now I have to deal with this and I AM SO MAD!!!!!!! I don't want to be strong, I don't want this hand I've been dealt. Why couldn't I have had a chance to breath before starting on another crappy journey? I cannot be a victim to this!

Ughh. I am a blubbering and rambling on again...

I think I will make myself a cup of hot tea and try to relax
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DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE




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July 2006- First significant SXs, suspect it started back in mid 1990's
1/21/09 - Positive MS Dx
2/17/09 - 2nd Positive MS Dx
4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for
.

10/8/09-optic neuritis flair, Cog Fog, chronic headaches
5/4/09 - 12/15/09 Copaxone
1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion
3/3/16 - signed the documents to start the Lemtrada journey
4/25/16. Lemtrada begins.
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Old 05-03-2009, 01:45 AM #2
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Default Bless Your Heart...

I'm keeping you in my thoughts. I hope you can find some comfort to help you during all these times when you have so much to deal with. You are not alone.
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Old 05-03-2009, 03:48 AM #3
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the first few times you inject the C is kind of scary. But, after a few days or weeks (depends on who you are I guess) it becomes normal...like brushing your teeth every day.

Are you going to inject manually, or with the autoject? I suggest that you learn to manually inject, easier and not as painful. (that autoject injects really fast!)

I'm a needlephobe. I cant stand getting shots when someone else is the one wielding the needle. Cant even watch, have to turn my head and close my eyes. But, injecting into myself, really freaking easy and it doesnt bother me to watch. (be kind of hard to do it with my eyes closed)

Whatever method you use, a good suggestion I can give you is to let the alcohol from the wipe dry before you inject...the alcohol can make it sting a bit more if it's still wet. I'm sure others will have their own suggestions.
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Old 05-03-2009, 03:51 AM #4
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Take a breath, and let it wash over you.
I feel like I've had a crap deal too. I feel really hard done by. But what can you do?
Start taking control, take the copax in your stride, and do what you can to maintain your health for as long as poss.
You'll cope.
I've never been one for 'one day at a time'. I was a worrier and a planner. Or at least I was until April 9. Now I'm so much calmer.
Our lives have changed. 'Nowt can change that.
Good luck.

One thing I did was name as many diseases and conditions I would rather not have. Most were more common than MS, and much scarier. So maybe this isn't so bad...
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Old 05-03-2009, 04:14 AM #5
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Quote:
Originally Posted by pud's friend View Post
Take a breath, and let it wash over you.
I feel like I've had a crap deal too. I feel really hard done by. But what can you do?
Start taking control, take the copax in your stride, and do what you can to maintain your health for as long as poss.
You'll cope.
I've never been one for 'one day at a time'. I was a worrier and a planner. Or at least I was until April 9. Now I'm so much calmer.
Our lives have changed. 'Nowt can change that.
Good luck.

One thing I did was name as many diseases and conditions I would rather not have. Most were more common than MS, and much scarier. So maybe this isn't so bad...
I agree, there are so many worse diseases than MS. I'd rather have MS if I have to have a weird disease that causes me all sorts of funky problems.

MS sucks, but cancer probably sucks a lot more.
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Old 05-03-2009, 05:06 AM #6
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I had gastro a few months ago which was so bad I passed out on the floor to the bathroom. That was scairy. I vowed I would stop smoking since the possibility of getting cancer and having chemo and the vomiting and nausea were too much for me.
I would SO prefer MS to chemo, cancer, treatments, surgery etc. I can deal with MS.
I haven't stopped smoking though...

Recalling my stint as an RN on Neuro, I was so inspired and moved by people who dealt with Guillian Barre syndrome. Hell, I can cope with this. (at the moment anyway )

and so can you...
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Old 05-03-2009, 07:11 AM #7
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Everyone deals with the hand they're dealt in their own way...in their own time. Yes, there are worse things than MS. And people with those "worse things" find their own way of coping. I try really hard not to compare my situation with others......each is unique in its own way.

Maybe try and look at Copaxone as a good thing....something positive you can do to slow the progression of your MS.

I'm sorry your sisters situation dominated so much of your life. It's time to concentrate on yourself now....and what you can do to make your life better and healthier.
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Old 05-03-2009, 07:56 AM #8
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We could be related! I feel exactly the same way.

My sister is still in the throws of drug addiction, and some pretty bizarre behavior. My mother will allow her to rip her off, steal, cheat, and treat her like garbage. This is NOT the sister I grew up with. I dont know this woman, I dont like this woman, and I have no intentions of allowing this woman back into my life to wreck it over and over again. I had to draw the line, and push her out of my circle. I feel ripped off! I see so many close families, and it breaks my heart all over again. its not fair!

but...I cant control her behavior. I cant make choices for her. she has to make the journey on her own. I was willing to walk with her for many miles, but she makes it too hard to stay with her. I will not allow myself to be abused anymore. I am standing right here when she is ready and able to come home. As much as it rips my heart out, that is the best I can offer. I raised her children for her so they were safe. I hid some of her child hood treasures so they were safe and not hocked. That is the best I can do for her until she can return home again.

I was again "ripped off" with MS. I survived breast cancer, and loads of other things, and I had done my time! I was in the clear! I was supposed to be able to get on with my life, and travel, and visit, and dance in the sun, and enjoy my hard won life. Too me MS meant a dragging leg, the constant need for rest, injections everyday. A life i didnt want nor would I chose for anyone

but...its here. My vision is more stable, the ON healed. I am working hard to not drag a leg, and have a wonderfully supportive husband. I am learning to look at the gift of everyday, and not the torture of having to endure another day. I didnt ask for MS, and I cant return this diagnosis, so I am going to try to do what I can with it. I will take my meds, I will do my exercises, and I will get up everyday, and put one foot in front of the other.

I know EXACTLY how you feel. I do hope you too can see the sunshine through the rain
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Old 05-03-2009, 08:09 AM #9
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No one gets out of this life untouched. But there are spurts of good. Really
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Old 05-03-2009, 09:38 AM #10
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Amy, you are going to be sooooooo disappointed! The shots are no more exciting than brushing your teeth, letting a dog out, doing the laundry, or shaving your legs.

Trust me, it will merely be one more of the mundane, daily pieces of your typical routine.

Look forward to the good stuff and don't sweat the small stuff, life is much too short!

—Copaxone 6 years.
—Beta 4 years
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