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September, 2008
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Living With Multiple Sclerosis.
When I was 21, I thought I had the world by the tail. I was married(to who I thought would be the man of my dreams), had a job I loved, and I was healthy. One year later, my oldest daughter was born. Could life be better?? Then, when my daughter was 1 & a half years old, April 1st, 1993, I was diagnosed with Multiple Sclerosis. Ha! Some April Fool's day joke, huh? But it wasn't. I thought my life was over...I asked the same questions that a lot of people ask when they are dealt a cruel, life blow...Why me? And, there were no answers. Multiple Sclerosis, is a disease of the central nervous system, which causes the myelin around the nerves to basically disappear. It is kind of like taking electrical wires, stripping the plastic, protective sheath from them, and then crossing those wires. That would then cause a short!! And, that is exactly what happens, when someone with M.S. has a flair up. Their nerves short out. For the first few years, it progressed slowly, it was 1st stage, relapsing-remitting M.S. There would be the days when I could not walk, or when I would go out to take the baby for a walk in her stroller, and the neighbours must have thought I was drunk!! I would have good days and bad. Coping with these changes, the progression, not knowing from one day to the next, it was difficult. Would I be able to walk tomorrow.. Would I be able to talk next week.. No answers, just a wait and see game. I adapted to the shaking hands, which are called tremors, I did not give up when my body told me it could not walk another foot, I would NOT let it win! Every day I was able to walk, talk, see, I Had WON! Four years later, my youngest daughter was born. After she was born, I had some vision problems, double vision to be exact. I had an astigmatism, which was caused by the M.S. I was able to cope with this, by wearing glasses. A couple of years later, I got myself a cane, so that I could continue to walk distances. My family was always there for me when I needed them, and that was a big help, plus, as inspiration, to keep fighting this awful disease!! In 2000, we bought our first home, my girls finally had their own rooms, and, I had to deal with stairs!! Let me tell you, stairs are not my friends...lol I learned very quickly, if I had to go down the stairs, the best way was going to be on my fanny! Going up, that was okay, but down...no balance = scary! I went to work, again, in 2003, and I was enjoying it, when, 1 year later, the M.S. that I thought I had control of, came on with a vengeance! I had stopped wearing the glasses, everything seemed to be in remission. I was wrong. I was working, and I could hardly walk, dragging my legs, and by the time I got home, I was unable to walk. I was having tremors real bad, in my hands, and legs. I had to see my neurologist! I went to see her, she did some more testing, and there were a lot of lesions(scars), on my nerves, where the myelin had been. When the myelin is stripped from the nerves, sometimes it will come back, and other times, it is replaced with scar tissue, which will cause the shorting out to some times last longer, if not permanently. She told me, I would have to quit working, and go on disability. I was only 36 years old! I could never work again!! She said the M.S. had progressed, I was now secondary progressive. Unfortunately, now, when I would get those flare ups, I had no clue if I was progressing even further. We tried treatments, none of which worked for me. Now, 4 years later, I am on my own with my girls, as my husband decided he could no longer `cope`with a wife who was not 100%. I have since met a very nice man, who treats me like a queen, who is there whenever I have a bad day, and always has something to say or do to make my days a little brighter. Living with Multiple Sclerosis, it has been a chore, to say the least. But, always believing that tomorrow will be better, that todays flare up will pass, having 2 children who understand their mother`s challenge, makes everything bearable. Staying positive, always smiling, staying calm, all have a positive effect on my life. Finding things I am able to still do, and not feeling sorry for myself over what I no longer can do, also helps. Taking every day in stride, going with the flow, all this helps as well. The best treatments and therapies, sometimes are found within...I know mine have been.
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Contributor's Note
Thank you for letting me share this with you, the readers, my friends. Sometimes just talking helps a lot too...lol - Lisa
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Multiple Sclerosis Society of Canada
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Added by seeseye on April 2, 1:30 AM.
PLEASE VISIT THE CONTRIBUTOR'S WEBSITE
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I read this intel carefully and with great interest. I think the worst thing about this debilitating disease is how society treats you differently - it seems other people will subconsciously consider as somewhat less of a human if you aren't 100 percent healthy. For the life of me I do not understand how you - and others with MS I have read about - manage to maintain such a strong outlook and outwardly sunny disposition. You say "not feeling sorry" for yourself helps, but... that's so easy to say, so hard to do! I turn into a nasty, ill-tempered curmudgeon when I get a cold.
CONTRIBUTOR'S REPLY
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I know, a lot of people do turn into, something like that, as well...lol But, I always try to look for the brighter side, and there are worse things, I believe. You will have noticed my Breast Cancer intel, and I do volunteer with that. It makes me feel so good to be able to help, be a part of something good! As well, I have volunteered with the M.S. Super Cities walks, as well. Staying busy, not dwelling on the problems, that is what keeps me going. Thanks - Lisa
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The way you have coped with this disease is very courageous. My nephew has MS and he has had a very tough time accepting the fact that it is not going to go away.
CONTRIBUTOR'S REPLY
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Hi Julie. I am sorry for your nephew. It is hard to cope with, this I do know. How old is he, and when was he diagnosed? Every case is different, progression is different for everyone, and everyone's method of coping is different too. He needs to look at things in a positive way, be thankful, and happy for the days when he can do things, and be happy for the things he still can do. No, unfortunately, this disease will not go away, but it can go into remission, and that remission could last a long time, before the next exacerbation. There are drugs, treatments and therapies, that he could possibly look into, if he has not already. Please let me know how he comes along with this, and please tell him, he is not alone. - Lisa
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