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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Visit From my Friend

Visit From my Friend

Living on Long Island I had the dark yellow color skies due to the Canada wildfires. I felt like I was living in an eerie Stephen King novel. As eerie as my sky was, NYC was still way worse. The sky there was so dark you couldn’t see buildings in front of your face. That is freaking INSANE!!! I immediately wrote to my friend who lives in Montreal. Can you see or breathe? She replied “see, yes, breathe, no”. I…

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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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Still have a UTI

Still have a UTI

Hello to all!!! I am still fighting the good fight here. I just got back my second urine culture which showed positive still for an infection. Yet at the bottom in this one little line is >=3 organisms probable collection contamination. Well how is that possible??? I know we got a clean sample from the source. The only thing is that my aide didn’t fully tighten the lid to the sample cup. The urine leaked out a little into the…

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