#Blessed

I remember back in 2018 when I was approved for Social Security disability. Sean was 17 and he also qualified for Social Security because as a single mother, I was no longer working and he was a minor. I remember the man I talked to on the phone who told me that I was approved told me that I was getting a large monthly check.

When the checks started coming in, it totaled less than half of what I was making at my job and I was a teacher!!! Because Sean was still a minor, his money came in my name. I called my caseworker immediately to get things straightened out and she told me back in 2018 that I made too much money with both of mine and Sean‘s money so I did not qualify for any assistance.

Then he turned 18 and my money was significantly reduced and I called my worker again. I thought for sure that I would qualify for some assistance and I would take any that I could get! She told me that I alone make too much money still! What?!

So, now, fast-forward to 2022 and my disease has progressed and my wheelchair has gotten rickety. My Mom has been calling National Seating and Mobility for months and the supply chain was all messed up and it was taking time to get the parts that I needed! My Mom is taking my chair in on August 24 and I will be at home in my manual chair like I was last time it was getting repaired.

I need a new seat and seat back because after four years and one month, the pad has really compressed and my butt hurts and considering I sit all day long that’s not really good! Also, I am dealing with pressure sores on my feet STILL and I can’t even begin to think about sores on my butt! That would be awful! I have my ‘Butt sticker’ to protect my tail bone that gives me a little bit of comfort but a new seat pad would be the best!

Now, I am on Medicare because I have that been working for so long. Medicaid picks up any charges that Medicare does not cover because they only cover 80% of services. My wheelchair repairs will cost about $4000. Because Medicare only covers 80%, I am responsible for the other 20%! We got on the phone today with the Michigan Department of Health and human services at about ten o’clock this morning and did not finish until three. I was exhausted!

My Mom asked if I qualified for any assistance programs and the worker told her that I make too much money and they only help ‘the poor.’ She also said that with the annual increases, I will never be ‘poor’ enough to get assistance. I can tell you that I am DEFINITELY poor enough because MS is expensive enough to make me so!

I have had all evening to sit here and ruminate with this fact that I will not qualify for any government assistance programs but thinking about it, when all of this went down that I was no longer working, I was filled with a cold fear and I stared at the ceiling of my bedroom well I laid in bed and couldn’t sleep. I said audibly, “God, I just don’t want to be poor!” with tears welling in my eyes.

With that prayer that I said five years ago, it has come true! I definitely DO NOT feel that I am NOT poor but a friend and colleague of mine set up a go fund me account for me so I could make ends meet before Social Security kicked in. The money raised there paid a lot of my bills well I waited to get Social Security disability.

So, even though I did not qualify for any assistance, I was reminded that I am blessed! It definitely takes a lot of work to make my meager check stretch but I can do it mostly and my Mom is there to help when I can’t. We help each other! I’m getting by because it was ordained a long time ago that I would be blessed and I have been and I am most grateful!

My Vision

Dr. Harris told me last month that he was not going to strengthen my prescription so I would not lose my near sighted vision. My new contacts are working out and I will order a month supply on Wednesday when I get paid. I only get on Facebook or Twitter early in the morning like right now because I can’t see when I am not wearing my contacts. This is what my vision looks like now without my contact in:





That may be what the world looks like to me without my contacts in but I still can’t see my phone, engage in commerce, post on my blog, and scroll through Facebook and Twitter. Then, after I have taken my vitamins and drank my breakfast shake, if I am awake enough, I will put my contacts in and not mess with my phone until I take them out for the night.

My phone, which is an iPhone 11, will no longer make or receive phone calls, and sending text messages is sketchy at best! Looks like I have to order a new phone as well!!! Seems that ‘when it rains, it pours’ and I will ‘rob Peter to pay Paul’ this month as best as I can!

Rando Tune #24

I thought of this song last night when I was blow drying my hair. This was a song I used to love to sing along with the radio! I can remember with longing filling my lungs with air and belting out the bridge. That seems like a lifetime ago. My singing ability.

My hair is longer than Robyn’s is but I wonder if that cut is in my future because shorter hair is better (easier) with having MS. If I opted for that haircut, I would have to be singing that song in my head constantly!!!:

A Face

Apparently, there is a face that accompanies my pain. I have noticed in the past week that when my Mom is leaving my bedroom where the laundry is and walk into the kitchen; she passes me and I will glance at her and I see her wince at the faces I make. She will say things like, “I’m sorry, Jenny” Or sometimes she will stop and kiss the side of my head.

Tonight, when I was going to bed, my Mom went to get my mouthguard from the kitchen (who would have thought that I am a teeth grinder?!) and I felt myself making a face. This hurts! 20 years of not feeling my feet and now this response that my feet are having to the trauma of my pressure sores is too much!

We are making phone calls to the Michigan department of health and human services which I am not looking forward to. But it’s a necessary evil in this before I gear up for the ‘two fer’ this month. Haircut and MRI.

I’m Out!

I don’t read anything written about MS online! I haven’t for almost 20 years because it is all depressing!
With the progression of my disease, I’m not sure why I read this entire article but I did and I shared it on both Facebook and Twitter:

After reading this article, it was all ‘old hat’ to me! I was thinking that I could not be surprised anymore. Then I googled something else that has been going on and it wasn’t good and I was fully reminded why I DON’T read MS articles!!!:


I then read the abstract of an article and I’m out! It’s not like I can be ‘out’ at all because it is coming but I just don’t want to read about it!:



My ‘two fer’ this month is a haircut and then an MRI. Then I will be in contact with my neurologist to discuss all of this.

Just…

My Mom changed the dressings on my feet today and Sonya will come on Monday. I woke up in this morning with my feet in pain again. My right foot pressure sore has closed finally but it is extremely tender new skin. It hurts just as much as my right foot was still has a hole in it!

Today marked four months since I saw a doctor regarding my feet. I can’t believe there is still a hole in one of my feet! I am frustrated, I am in So much pain, I am just…

#MyGirlL: Pet Supply Shortage

I saw the end of a news story a couple days ago that talked about the pet supply shortage. This interested me because I had ordered Leia. This story made sense because I am so used to just receiving it the next day but it was taking a long time! I ordered the food on Saturday and we did not receive it until Wednesday.

She is on prescription food and we had to combine our money to get her food this month. The end of the story said that local supply houses are not carrying enough supplies so they need to be brought in from other warehouses.

My Mon was extremely concerned that, ”Leia is going to starve to death!” because she had just finished her food but I reminded my mom that Leia has had a 12 hour fast before and she was just fine!

I am so happy that her food arrived on Wednesday so she did not starve!

A Battle

I heard rain on my roof while I was sleeping but when I woke up, it was not raining. My body definitely feels the barometric pressure shift and I realize that today will be a battle.

I have figured out my strategy by placing my hands on my hips and closing my eyes. It’s while I am in my power stance that I am fighting off the internal invaders and with my eyes closed, I can concentrate better at least that is what I tell myself. I will explain better when I am not actively fighting which is what I am doing right now!!!

Rando Tune #23

This is the latest game I have been playing on my phone. It reminds me of playing Memory with my cousin, Melissa. It actually helps me with my hand-eye coordination so it makes it easier to put my contacts in. I think my only saving grace is having had them for 28 years so a lot of it is muscle memory at this point, I think.

I have to get three of a kind and put it in the boxes at the bottom. I have been playing for a while and I am on level 150 but I can’t tell you how many times I have tried to win the level but it doesn’t matter because that’s not the point of it anyway for me.

The Apple Music playlist I was listening to finished so a different song started playing and just like that, I was a freshman in college and back at Western!!!