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Tag: daily life 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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My Other Issues

My Other Issues

Today my wheelchair is supposed to be picked up. They will be taking my chair back to the shop to fix. I find it amazing that they can afford to send a courier to pickup the chair but can’t send a technician out to repair the chair. The company is so short staffed that the cost of the courier service outweighs sending a repairman. I have my wheelchair evaluation on July 25th. It is at this appointment I will find…

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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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A little truthful tale

A little truthful tale

Hello again. I’m on a roll now. So it was official, lab confirmed, a UTI. I saw my doctor last week. This could have become a dangerous situation for me. I could have wound up once again in the hospital needing IV antibiotics. I could have even ended up septic if the bacteria got into my bloodstream. It is how elderly can die from a UTI. It is when UTI symptoms aren’t realized and the infection goes undetected. My body…

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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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