Author: Jen Rios

The wound care nurse came over for her last visit today. She discharged us because my sores are on the mend. It has been four days since my MRI and bouncing back is taking a lot longer then I anticipated! I didn’t even put my contacts in today either! As I sat in my chair taking my vitamins, all I could do was groan. Is this my new normal?!

I called my best friend today because she totally gets me and I haven’t talked to her in a little bit. I explained to her that I am ‘edgy’ and I am not sure why. I then told her about my vision and we talked about that. I told her that I was okay with losing my ability to walk and some other abilities as well. I seem to be getting along.

But in this 21st year, my speech is becoming more difficult to understand and to force the words out of my mouth, I can’t chew food, and my vision is going. She was completely understanding and she is the person I needed to talk to today!

She emphasized and explained that your speech and your vision are to very important things! And that’s it. That’s why I am ‘edgy.’ My Speech Pathologist, (who I am meeting with virtually next week) told me when I met her that she will be evaluating me and it will just come across as conversation.

I told Ami that she was really helping me because I was completely comfortable with her and that’s 20 years of friendship there! I could feel my mouth muscles loosening up so it wasn’t so difficult to speak and I thanked ther for that! I cried a little bit and I think that helped. In our conversation, we talked about my vision and I thought about a good description. I see only in SD and I have been seeing an HD since I first got my glasses 33 years ago when I was seven:

When we got off the phone because we ( my Mom and me) had to get our haircut, I explained this to my Mom and she didn’t understand HD v SD and then I showed her a couple pictures:

I get the gist of what I am looking at and that is probably why I watch movies multiple times to pick up on what I may have missed out on. The comparison pictures I showed to my mom made her sad. It’s been making me sad for the past month and so, I have been ‘edgy.’

I have written before that the government is good at providing wound care supplies, I give them an A+ but after speaking with health and human services yesterday, I fear that grade is going to be drastically lowered!

With all of the hours we spent on the phone, and it’s a ‘we’ because speaking is difficult for me in the a.m. and when I first wake up. We had to call earlier than I am able to freely speak. After she explained that I am not poor enough, she told me all the hoops I need to jump through to get my appointments and everything covered. It was a mess! I AM disabled!?! Hoop jumping is not my thing but in this regard, I think that it has to be.

My Mom got the van today for my haircut today and MRI tomorrow and she was calling places to have them send me my medical bills. She called the wound care clinic for the visiting nurses and we were told that Medicare pays for wound care home visits 100%!

I was completely shocked at hearing this but I don’t need to submit invoices for the wound care I am receiving because I am not being billed. That is really great! At least one thing! So I think that I will have to get the government a ‘C’ overall and that is completely due to the wound care apparatus of the health system! My feet are still killing me by the way and Sonya is coming on Monday.

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!

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!