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  • One Year Update

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    Old 05-04-2012, 06:06 AM   #1
    KingBaxter
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    One Year Update

    Hi all! I hope everyone is well. I haven't been on here in a little bit...

    Well today is my my one year anniversary of MS. It was about this exact time of day, one year ago, that i landed at JFK airport and had the feeling of having something in my eye (turned out to be ON). Over the next couple of days, it worsened, and i went to a dr, was put in the hospital, put on IVSM, had a ton of tests done, and sent home with a dx of possible MS.

    My vision is very, very close to 100%, but distance vision is just not as sharp as in my other eye. All colors now look exactly the same in both eyes, so i'm glad about that. I've read that after a year, it will likely not improve any further I've always has perfect vision so its just so upsetting to me, but i guess in the grand scheme of things, it's definitely not the worst thing.

    As some of you know, i started on rebif within about a month of of dx. I have been on the 44mcg dosage since December (since the first neuro i saw that the 22mcg was sufficient). Nothing new to report on this, and i have never missed a shot! I continue to hate it soooooo terribly. I am someone who used to cry when getting blood drawn and i HATE needles. I also HATE that i am injecting this foreign substance into my body. I just keep telling myself that this isn't the worst thing. Sometimes i get a headache on shot days, but nothing that 2 advil won't cure. The majority of the time that i get the headache is when I don't have enough fluids throughout the day. This happens when I'm at work and just so busy I don't even have time to have a drink.

    My last neuro appt was first week of April. Nothing to report, but my next MRI is in June, followed by neuro appt first week of July, so i'm really nervous to see what that will show. I'm very pleased with my new dr, who is an MS specialist. I feel so much more comfortable with him than i did at the regular neuro that i was sent to first. Although, i do have to be thankful that he knew what to do to treat my ON, so he did start me on the right path.

    The worst part of this last year is that i feel like i can't be happy anymore. There are things that i feel good or glad about, but i feel like everytime i think something will make me happy, i just remember all this stuff. My husband bought me the most beautiful birthday gift this year, and after a couple of days, he told me he expected me to behappier about it, but i just had to explain to him that i just can't feel happiness anymore. So to me, that's the worst part of this last year. I used to be a really happy, positive person, but i feel like i can't be myself anymore. I know this is because of my attitude towards this whole thing. I know people say that the best way to deal with it is to just accept it and have a positive attitude, and i know that it's true that that really is the best way to deal with it. But i can't make myself feel something that i don't believe. I don't feel like i can ever have a positive attitude about it.

    Other than all that, it has been a very unventful year. I have not had any other signs or symptoms in the last year (THANKFULLY). Hopefully my two year update will be the same!

    Take care!!

     
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    Old 05-04-2012, 06:16 AM   #2
    MSJayhawk
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    Re: One Year Update

    You have many things for which you can be happy. Let us start with the fact that you still have eyes to see. Vision is a blessing and to be able to see all of creation is surely a happy event. Your husband supports you. Many MSers are not lucky enough to have spousal support. You are still vertical! :

    Perhaps if you look at your new life and do not grief the loss of your old life you can be happier. Embrace the new normal which you are experiencing. When you count your blessings each day, you will find that you have plenty of extra blessings that you can pass along and share.

    This is your first year with MS, OCtober 4 will be my 30th since my diagnosis. I know that your life will get better albeit with a few speed bumps along the way. I have no regrets for the course changes MS has made in my life. If you allow MS to dictate how you will live, then you slowly lose control. Indulge in some generous self-pampering and celebrate the many blessings which you have.
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    Eternally blessed and eternally optimistic!<><

     
    Old 05-04-2012, 10:18 AM   #3
    KingBaxter
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    Re: One Year Update

    Thank you, Jayhawk. You always have words of wisdom! I believe that you are 100% correct about everyting that you say. I have seen very important people in my life experience things in the last year that put what im going through in perspective, but its always short lived. I just go right back to thinking negatively. I want to feel positive, happy, etc., but i just can't get there. I had hoped i would have a better outlook at this point, but i don't.

    I feel like i've already lost control. I have thought for a while that has something to do with why this is so hard for me to accept. My husband says i'm very OCD and bossy...i would never tell him this, but he's right! lol

    Well thank you again for your kind words. I wish i could have just a little tiny bit of your good attitude!!

     
    Old 05-04-2012, 10:28 AM   #4
    MSJayhawk
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    Re: One Year Update

    If you feel you have lost control, might I suggest some counseling? Chronic disease hits many people harder than others. There is no shame in asking and you can develop life long coping mechanisms.

    Volunteering to help others who share the same chronic illness can also open up our thinking. You can learn many lessons from just a few hours of interaction.

    I found early on that my prayer life became important. I do not nor can I get through this if I carry the burden myself. I feel that my relationship with God plays an important place in my life. I know that there are churches and synagogues who have chronic illness support groups as well as specific support groups. These boards can also help. Come here when you feel you are not coping. I think you will always be welcomed here.
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    Old 05-04-2012, 01:27 PM   #5
    MSNik
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    Re: One Year Update

    King Baxter,
    It may not be you. It may very well be the Rebif. One of the side effects is depression and although after 5 years on it, I can honestly say I was never depressed, I was absolutely NOT myself. People noticed it. Not only was I never happy, but I was also very fragile and very quick to get angry. I was a bundle of nerves; none of which I was aware of, and none of which I could ever get under control.

    3 months after I stopped rebif, I felt like myself again. And, people commented frequently on the fact that I seemed so much better....a year later, I feel better than I have in 5 years.

    So, consider that it may not be you, it may be the drug.....

    But, Im glad to hear overall you are doing well with no new relapses or nothing to report. I too, did well on Rebif, but not well enough....in the end, it almost killed me . The antibodies I developed were eating away at me. Please do talk to your doctor about the tests which should be run after 3 years on Rebif, most doctors will tell you this is so rare that unless you exhibit signs of problems, they dont need to run this test. Insist on it. It is not something you can un-do...
    Nikki
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