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I have been subscribing to a fellow MS Warrior’s emails for a while now. One that I received not too long ago gave us a list of 10 things that we can do to make our lives easier. It was a pretty interesting list and I forwarded the email to my Mom. I don’t think she has read it yet but I will put a few of them here that proves that there is a method to my madness! It is out of order but things that I think about and do because it’s easier for me:

I thrive on routines and I think I am a little bit OCD about it but it works for me and decision making sometimes can be difficult when my brain doesn’t feel like working very well.

When I read this one, it made sense to me why I need to drink both my breakfast and lunch now. I’ve understood that digesting foods makes you tired and I have been drinking my lunch at work for years before I stopped working. Now it makes sense. Sean has told me that there are better protein shakes out there but I prefer Adkins, Dark Chocolate Royale, because I’ve been, “No carbing” it for so long that I actually think it’s good!

This last one is the most important one for people to understand but it is VERY difficult for them TO understand:

I think I sound heartless when I tell my Mom, “I don’t care“ about something that is frivolous to me because she doesn’t understand that every ounce of my energy is being spent I’m trying to deal with the pain in my body so I don’t have ANY room to think about things that really don’t matter to me. For me, I have figured out that if I dismiss it and say something like, “I don’t care“ It refocuses me and allows me to not put any mental energy toward it and work at the things I am trying to do.

It refocuses me and allows me to not put any mental energy toward it and work at the things I am trying to do as best as I can.

I really like receiving emails like this and makes me feel less crazy because there is reason why I do what I do so there REALLY IS method to my madness!

So, my eyes hurt today. I needed to put three drops in each eye because they felt really dry! This is only a little bit concerning and by, “A little bit,” I mean, “A LOT!”

For the past 20 years, I have thought about the day I was diagnosed and the doctor (whom I had never seen before or after) telling me that I had MS by nonchalantly telling me and my Mom that, “Look, you have MS, you are going to go blind, and then you are going to die” before spinning around on her heel and leaving the room.”

Now, it is becoming apparent to me that my vision is changing and quite drastically. I’ve always had pretty thick glasses but my contacts have stayed the same prescription for about three years. My most recent prescription is a full number greater and in addition to wearing my contacts, when I am watching TV, or looking at my phone, I have to wear glasses. The glasses are simple nerd non-prescription glasses I bought on Amazon but my Neural ophthalmologist fashioned them to have a prism on my right eye so it looks a little better to just have glasses on then wearing an eyepatch like a pirate.

My brother, Dave, calls me “Six eyes” because I have my contacts and glasses and my normal eyes. I was FaceTimed with Sean a while back and I saw myself in my phone and I told him that I looked looked like Squints from The Sandlot. He laughed and agreed and when I told Dave what I told Sean about me looking like Squints, He laughed hysterically and hearing him laugh made me laugh even more so we both laughed for like five minutes at least:

When setting up my iPhone that I recently got, I had to put the settings to almost the largest text size. This is how big my texts are now:

But even with the settings at almost the largest in my phone, it’s difficult to read Facebook even with both my glasses and contacts in. So I wait until nighttime to edit my posts when I don’t have my contacts in at all. I DO wonder if I am going blind though…

It’s been six days since I got my teeth cleaned. Sean‘s hygienist clean my teeth because my normal hygienist was cleaning my Mom‘s teeth at the same time. I go with my Mom now to get my teeth cleaned so it’s like I am in little girl again.

I brought to Lisa’s attention the fact that I had injured my gums on the left side of my mouth. She was not surprised by this and told me that she has seen trauma like this before and to brush my teeth and just use three fingers to hold the toothbrush. It feels a little bit weird but I started doing that. And now, six days after she told me this, I don’t spinel blonde but I brush my teeth anymore! Brushing my teeth is becoming easier now as well.

More random things that I never thought about that would happen to me because I have MS and can no longer control my hands easily.

This song has been in my head since last night when I could not find a comfortable spot in my chair. I thought about this song more today because of my body spasms that accompany the weather change. I think I will write about it further another time but this song is still playing in my head because I absolutely LOVE Bono!!!:

So, yesterday was the seventh time I have been out of my house in a year? My Mom and I went to get our teeth cleaned. I was able to remain seated in my motorized chair to get my teeth cleaned and it all was super easy for me because I didn’t have to transfer from my wheelchair to the hygienist’s chair. Sean‘s hygienist cleaned my teeth because my Mom made the appointments for us to get our teeth cleaned at the same time so she was with my normal hygienist so I was with Sean’s.

I talked to Lisa about my teeth brushing. I told her that my hands are having difficulty brushing so I tend to scrape my gums which really hurts! She saw evidence of my gum trauma that happened a couple days ago. She gave me tips on ways to brush so I don’t hurt my gums with my lack of hand control until I can save enough money to get an electric toothbrush.

The only time I have missed getting my teeth cleaned every six months since Sean was three was right when Covid started. I have been going to the same dentist since I was a child and I got my braces through there as well. I liked seeing my orthodontist’s wife when I went there. She does some kind of billing there now. She has been doing that since shortly after my orthodontist passed away. I think I was six when I first started going there so Dr. Fox has been my dentist for the past 33 years.

When he came into the room to check my teeth after Lisa was finished cleaning them, he said that I always have, ”Great teeth!” I loved hearing that and I smiled and told him that, “My dentist told me that when I was a little girl.“. He smiled and turned and said, “ well, you listened!“

Three of the seven times I have been out of my house I’ve been to go to the dentist. I feel extremely comfortable there!

It was extremely warm yesterday and I started to melt in the 80° weather. Today’s weather is NOT much better as I hear the rain on my roof and the thunder. Last night, when I was getting for ready for bed, I had forgotten how terrible the weather change is for me! But, on the bright side, at least I have a great teeth!

So, I wrote about my final, “Birthday Month” present to myself and the fact that I was too exhausted to write about it. Well, when I get that exhausted, I need a day to recover! I did that yesterday and now, I can show you my final, “Birthday Month” present that I gave to myself a couple days ago. I first need to show you the starting point:

So, in just over a year:

Christina has cut my hair and waxed my eyebrows for a very long time and she did just that on March 31! Seems that this kind of stuff can happen once you are fully vaccinated like I am now! She asked me a question and made a suggestion. She told me that since we have the length, we should try something different. If I don’t like it, I can go back to my haircut that I’ve had for 13 years and 19 days now.:

My Mom tells me that the cut is cute but I think I do better with the SHORT, short hair that I had previously (with the 2020 hiatus in haircuts). It is comfortable and does not bother me but I think shorter is better given my physical limitations now.

This song played at the salon when I first cut my hair and I won’t ever forget that:

And this is the song that played on March 31 when I lost about 20 pounds of hair off of my head and mostly my face!:

I think I had to be about 10 when one of my brothers was asked if he was, ”A ‘Rios’?” He was walking out of a bank and the woman asked whose son he was and she named a few of my uncles. My brother told her that he was Ray’s son. I remember when he told my Parents about this because the woman told him that, “He walked like a ‘Rios.’”

The closest thing that I got to that question was when I was in high school and I took my Parents’car to the tire shop. I was in my school uniform and I had my softball sweatshirt on. It had my number and my last name on the back. One of the owners who was going to work on the car, called out to me as I turned around to walk away. “Are you a ‘Rios’? I turned back around and smiled. I nodded and I told him that I was Ray’s daughter. He told me that I was a lot better looking than my Dad and to tell him that he told me that! He was friends with my Dad and I laughed as I went to sit in the waiting room. I was only asked that because my last name was on my the back of my sweatshirt but I liked hearing that.

Well, today, there was a plumbing issue in my house. Retirement or not, my Mom texted my brother, Jimmy, to fix it. He walked into my house and we gave each other, “Air hugs’ and he took a look in my bathroom. He went out to his van to get the auger and he had already taken his jacket off. So I looked up that saw the back of him walk toward my bathroom. I told him that I have not seen, “The Rios Walk” in a long time! All of my brothers walk that way and that comes from my Dad. He laughed as I told him that, “Mom doesn’t walk like that!” You know, the ONLY person I have seen for a year!

He fixed the problem so I would be able to use the bathroom and as he left, he had his jacket in his hand and seeing him walk out of my house with a shirt like my Dad and his longer Covid hair on the back of his neck made me think of my Dad with extreme fondness.

I completely messed up my nighttime routine to watch a concert from 1983 when I was just over one year old! It was, however, COMPLETELY worth it!!! It was the second virtual tour video by U2. They all were so young!!!

I don’t know how long this concert will be available and it’s entirety but here it is!

I was frustrated yesterday because I figured out tht I am having difficulty posting pictures on my blog because I am still using my iPhone 7S. I think the latest update is non-compatible with the old technology of my iPhone 7S. I’ve had a blog for 7 1/2 years and have not had a problem. I guess this just proves that I need a newer phone but I’ll deal with that later.

That frustration is not the only reason I was having a bad day yesterday. So much so, I almost want to call it my 10th COVID-19 tears but the reason I was crying was not because of the pandemic. The pandemic has made it clear to me how unable I am now and that frustrates and saddens me very much!

These tears were more than the just the few I’ve shed before regarding my inability but I was straight up crying with a lot of tears streaming down my face.

I looked at my Mom and asked, “Why?! Why is this so difficult? Why does it hurt so much?! She didn’t have an answer for me but told me that she didn’t know, put her hand on my shoulder, and handed me tissue.

I’ve sat with this feeling all day today and wrestled with the fact of writing it in my blog because I want it to stay upbeat but luckily for me, these days are few and far between and ones that I can tolerate and get through. “Birthday Month” or not, these days come and I just needed to acknowledge it.

When I didn’t make a haircut and wax appointment last March, I did not think it would be over an entire year that I did not cut my hair or wax my face and eyebrows! Since I’ve been living without haircuts for just over a year, I’ve decided one thing about long hair. It is INSANELY annoying!!! It’s almost as annoying as not being able to load pictures onto your blog post!!! I’ll post the picture of my hair as it currently stands but for right now, it’s in a fold-over (under) pony.