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Tag: difficulties with ms

Crazy Spasm

Crazy Spasm

For anyone that has pain with your multiple sclerosis or pain with any other disorder, I honestly have a lot of sympathy for you. I experienced a spasm that caused so much pain I couldn’t even move. It started as what I call an indigestion bubble. You ever get that gas bubble that travels trough your body and it can be painful. I always have to try to move or stretch for it to go away. Lately it has been…

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Hello

Hello

I’m still here. I have kept the blog. I know it’s been a long time since I have written anything but I have to admit I haven’t had much to say. My life is very quiet now. I choose it to be that way. I find it easier. I still workout in the mornings but I now do it only 5 days a week. I’m still obsessed with Bionic Gym. However, I spend the majority of my day in my…

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A Jamie update

A Jamie update

I have so much to catch you up on, I’m not really sure where to start. I seem to have the UTI’s under control. I’ve made it two months without needing antibiotics. I am talking a prophylactic antibiotic nightly as a precaution. Hopefully I am through the cycle I was living inside. I was also given a round of IVIG therapy to boost my immune system. That is an IV of immunoglobulin. By boosting my immune system we are once…

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Do We Continue MS Disease Therapy Drugs?

Do We Continue MS Disease Therapy Drugs?

I’m faced with a major decision coming up soon. Do I continue taking Rituxan? Not only Rituxan but any disease modifying therapies. I’ve been plagued with infections. I do believe that all of these infections have not only been difficult for me mentally but have played a significant part in the worsening of my symptoms. It’s the age old question, is the MS medication doing anything for me? Are the side effects, lowered immunity, and damage from the intense medication…

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Stopping Disease Modifying Therapy Drug

Stopping Disease Modifying Therapy Drug

I had a conversation this morning with my neurologist. This was my specialist in NYC however I did have the conversation with my other neurologist last month. It is on a topic we have been questioning with every UTI I’ve dealt with since April. Is it worth continuing suppressing my immune system anymore? I have certainly not been stable on Rituxan. Part was due to the pneumonia, can’t blame Rituxan on that decline. However, over the last year, I have…

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Wheelchair Isn’t Only For Transportation

Wheelchair Isn’t Only For Transportation

So I have to say I’ve never been so happy to have my chair. Who knew that I would have missed my chair so much. I am not one who usually spreads love to Kit, my main wheelchair. I probably spend more time cursing at some misfunction or slow maneuver. However, I never realized how much this chair did for me until I didn’t have it for 2+ months. I don’t think I’ll be cursing my chair anytime soon. Sitting…

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I’m writing a blog

I’m writing a blog

I keep meaning to write. I have every intention. Then at the end of the day, I realize I didn’t write again. Normally I actually write my blog the day before but since WordPress had an update, I schedule the blog but it never posts. I finally got annoyed and stopped writing the day before and then stopped writing on the day. So here I am. I would love to say so much has happened since I last wrote, but…

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Happy 25th Anniversary with Multiple Sclerosis

Happy 25th Anniversary with Multiple Sclerosis

It started 25 years ago today. The beginning of my major attack that brought about my diagnosis. I still remember the story all too clearly. Valentine’s Day weekend, 25 years ago, I was moving into the house my ex-husband and I bought. We spent a few months sleeping at my mother’s house while updates were being completed. We were ready to move in and be alone in our new home. It was supposed to be a romantic thing first weekend…

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Phantom Feelings

Phantom Feelings

I always have a feeling that my legs are in a different position. I’m always in bed with my legs straight. I can’t move them on my own. The only way they would be in a different position is if someone put them there. Even then, chances are they wouldn’t stay that way. I mean the position with my knees up. Yet I always have the feeling that my legs are in this position, especially if I am under my…

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Technology and Medical Advancement

Technology and Medical Advancement

Did you ever watch the cartoon The Jetson’s? You know meet George Jetson ?,his boy Elroy, his daughter Judy, Jane his wife ?. They were the futuristic family that drove the cars that flew in the sky. It was their phone that I was thinking about lately. They would get a call and it was always on this monitor. You would see the person that they were talking to. I remember thinking this was such a cool thing. Granted I…

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