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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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Could Diet and Holistic Medication Cure MS?

Could Diet and Holistic Medication Cure MS?

Hello, yes, I’m still here. I’m actually doing ok. Nothing has changed. I’m still dealing with UTIs and GI issues but they’ve been improving. I have season 2 of Alone playing in the background. The episode I am on has 4 people left. One of the participants is a woman with multiple sclerosis. I didn’t start watching because of this woman, just dumb luck. Anyway she is 45. She said 15 years ago she couldn’t walk, was on all this…

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My beautiful Mary

My beautiful Mary

I want to dedicate this blog to a friend that recently passed away. My heart is broken that this girl will no longer be around. Mary is the sister of my ex-boyfriend. Over the twelve years of knowing her, she became a sister to me. Mary was always my dog babysitter anytime I went away. She has been with all my dogs Boomer, Marshmallows, Zoey and Minx. She was just as heartbroken when we lost Boomer, crying on the phone…

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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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Finally Getting My Wheelchair

Finally Getting My Wheelchair

I’m finally going to pick up my wheelchair today. Only took two and a half months. I have already placed a call to my physical therapist. I now will have a lot of work to do trying to rebuild the strength I lost. I don’t have any physical therapy days left for the year so this is now going to be paid out of pocket. It is extremely unfair and extremely unacceptable that it took this long to get my…

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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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Broken Wheelchair

Broken Wheelchair

I have the same routine every morning. I’m up at 7am to be changed by my aides. I always get out of bed so I could feed my dogs. I like to be the one that feeds them so they know I’m still mom. I workout as soon as I am back in my bed. I always workout first thing in the morning. My workouts have been just my Bionic Gym with weighted bars because I can’t do my resistance…

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I’m Still Here

I’m Still Here

I’m here for at least one more year. My domain name multiple experiences is paid for until the end of June, 2024. If it came due this year, I would not have renewed. I don’t know if that is fate. Maybe I’ll find solace again in blogging. I definitely lost my love for writing since my hospital ordeal. More so, from the complete change in the level of my disability. It is hard to write a blog when your life…

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