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Mid week review

Mid week review

Well the major snowstorm that is going to pound the northeast is going to leave significantly less on part of Long Island. I’m located in that part. We should only see 3-5 inches by the end. We will get the sleet mixed with rain making for a more snowy mess than a beautiful snowy blanket. Oh well. I still haven’t had my aide so it’s been just me holding my own. I’m doing ok. I of course haven’t been able…

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Happy Monday Morning

Happy Monday Morning

Happy Monday morning. Slightly dreary here with light rain and cloudy skies but that’s ok, I’m not outside. I heard we may be having our first snowstorm this week. I’m not sure what the current predictions are but I do love the snow. Granted I become even more trapped in my home when snow falls because wheelchairs don’t like snow piles or sheets of ice. I don’t even mind because I’m mostly home anyway and everything delivers. I love the…

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Nobody likes change

Nobody likes change

After three years, my aid is moving on. She’s changing her hours to work 12 hour shifts each day during the weekend. This way she can make relatively the same hours in less days and be home with her son. With all the uncertainty of the schools new operating hours, who could blame her.  I witnessed firsthand what it was like when she had a homeschool her son. It was hard for every parent but exceptionally hard for someone…

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Increasing aid hours or not….

Increasing aid hours or not….

I’ve said many times that I start to write my blog with one idea and it goes a completely different way. Sometimes the blog writes itself. This is what happened yesterday Summer heat hibernation and my own multiple sclerosis realization. I certainly wasn’t planning on addressing the idea of more aid hours. I’ve pushed back on this, against my family’s concerns, because I need some alone time. It’s probably why I never have a problem being home. I’m with someone…

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It is never an easy transition

It is never an easy transition

I’m back with an agency and as of 5pm Friday they had no one for me on Monday. We are off to a great start. They told me it’s because of my dogs. They have difficulty placing aids in households with animals. Well I’m not giving up my dogs so if I have to change agencies 100 times, so be it. I’m sure my current aid, whom I love and done all this stuff for, won’t be taking time out…

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I am back with a home health agency

I am back with a home health agency

Today is the first day I woke up not feeling tired. It was such a wonderful feeling. I haven’t had that in so long. I can’t say how the rest of my day will go but for all my bitching lately it was nice to start off my blog with some good news. I still canceled playing mahjong today. Unfortunately I knew that I probably wouldn’t have the stamina to last too long. However I still worked out. I even…

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A tough decision when safety comes first

A tough decision when safety comes first

I had another fall the other day. I wouldn’t say it was a bad one but I did hit my head on the toilet bowl. It didn’t even register as a fall in my Apple Watch. I kind of fell in slow motion and nothing hit hard but my head. I’m left with yet another bruise and another lucky incident. I’m going to run out of those. I think that life on my feet is at an end. Safety first!!!!…

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Thankful to my Aid

Thankful to my Aid

It’s Saturday which means I don’t have my aid. I love my aid, I truly do. I’m so grateful for everything she does but I look forward to my weekends and my alone time. Is that bad? It is nice to get out of bed whenever I want and get dressed whenever I want. Sometimes I even stay in pajamas all day. My week is still busy enough to tire me out. It doesn’t take much. I like to watch…

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A nurse assessment today

A nurse assessment today

Today my insurance company is sending in a nurse to do a six month review. This review dictates my aids hours and you just never know what is going to happen. I was changed to this plan back in July of 2018 when I became Medicare eligible. They continued with the same level I was currently receiving. My aids hours are actually covered through my secondary plan which is a Medicaid HMO plan. I have never had a problem with…

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I’m on vacation my MS is not

I’m on vacation my MS is not

It’s been less than 48 hours that I’ve been on vacation and my multiple sclerosis has not been easy. Half of my clothing I’ve worn so far has been washed due to bladder issues. Not a fun way to start. Really MS, you couldn’t keep that shit together for a few days? I’ve had countless people helping life me feet up small steps or onto golf carts from my family to hotel staff because my legs are far from cooperating….

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