Category: Uncategorized

Yesterday was difficult. Every day seems to be difficult now! I had a realization yesterday at how small my life is now and there is nothing that I can do about it. I don’t think that I liked it very much… #MSsucks!!! 😒😒😒…

When I woke up this morning, my Mom told me that I had curly hair and she snapped a picture:

I have wanted curly hair for my entire life! I have it now at 42, fat lotta good that does me! The woman who cuts my hair asked me last March I think who I got the curly hair from. My hair started to curl then. My Dad had curly hair and my oldest brother and my youngest brother. My second oldest brother has wavy hair, but my brother Jimmy and me just had straight hair.

I looked at my hair and I thought of “Lambert the sheepish Lion” It was a short that we used to watch on the Disney Channel when we were kids. I think I may have to look at Disney+ to see if it’s there.

Aafter I got into my living room, I pulled the comb through my hair and made my hair a puffball just in time to put my hat on. I’m totally not used to having curly hair!

Having had MS for 24 years means that I am used to routine at this point and I am used to brands changing. Every time a brand changes of something that I use on a daily basis, that’s really hard for me to get used to! I have had to get used to so many changes regarding brands of things I use every day!

But this next one, kind of hurts! Let me ‘splain ya:

I remember that Sean and I were getting our teeth cleaned just after my 30th birthday. My cleaning was just about finished and my hygienist was my flossing my teeth. I was so surprised at how much my gums were bleeding! I asked my hygienist about it, and she asked me how old I was. I told her that I had just turned 30 and she nodded with a smile. She told me I would have to floss my teeth twice a day for the rest of my life!

Judy had been my hygienist many years at that point, and she was Sean’s for a while as well. She has since retired. Sean would call her his ‘tooth fairy.’ Somehow I remember leaving the dentist and going to Target to buy floss picks. That sounds familiar!

I have been using them for the last 12 years! I actually buy four packs of 75 in December for the following year, so that I can change them out each time I change my toothbrush head (Jan, Apr, Jul, Oct – same as my water bill) I buy the refill bags to fill them up between bag changes. I got my order in December. Well, it looks like it was a time for a brand change:

it says in the upper left-hand corner that is new clean-tech floss. That’s code-word for plastic and it feels disgusting between my teeth! I wasn’t sure what I was going to do but I did have some otherwise floss picks in the bags of 150 so I’m using that now.

This is what they used to look like:

Now, enter my Mom, Mary Rios to problems solve! While I was sleeping, she went to, not one, not two, but three different stores to buy up all the close out merchandise of the old floss pics that I use:

She showed this bag to me just after I drank my shake, wow! I think I have a year supply of floss picks! She even commissioned the other members of ‘the three little ones’ in my family to see if they can find some as well!

I am not sure what kind of floss picks I will use once all of the ones I have are gone, but my Mom is going to call there to complain on my behalf tomorrow! Maybe they will change it back?

I just realized how actually small my life is now. Tiny really. I do the same thing every day. My Mom asked me when we are leaving the house again and I told her February 19. Really? This realization of this fact is making my head spin…

I experienced a new sensation last night, and I thought of, and heard this song in my head as it was going on, this song reminds me of my brother, Steve. I was five when this song came out:

But this new sensation started in the late evening. I actually told my Mom that it feels like the ending scene of Willow!:

The new sensation feels like when Bavmorda has the wand and lightning strikes it!

It did not feel good at all! It hurt more on my left cheek than my right cheek But it was acute, but it kind of lasted for a while. I breathed, and I prayed, and I think I drifted off probably at 5:56 this morning…

I don’t know how often that is going to happen but I have had this neurologic disorder for 24 years now so…

I woke up Saturday morning thinking about how much care Sean had given me the night before at my appointment. I immediately thought back to his time in NICU. I can still feel his little baby hair I Wasn’ton the right side of my jaw. I also still can remember how his tiny ribs felt under my left hand. He was so small!!! Two months premature makes you that way and he only weighed 4 pounds and 11 ounces.

But it wasn’t until today that I thought about it, we ARE that book. Love you Firever!!!:

This wasn’t my favorite book and I thought it was weird that the man carries the Mom and put her into bed.

I preferred this book:

I carried this book in Sean’s diaper bag, and I’ve read it to him often when we were out! I gift it to my friends when they have baby showers because it is very androgynous child!

I had already gotten out of bed and had my prayers and most of routine finished for the day when it dawned on me that is EXACTLY who Me and Sean are now. I didn’t think it would be when he was 23 and I was 42; I wasn’t ready for this! But that’s how it is now, I suppose.

I pillaged today. And the cheese stands alone:

That is the rest of the vitamins before my Mom puts the new vitamins we got on the 15th on my desk.

It’s technically standing next to the silver drops I take daily and my Pat-a-day that I put in my eyes each morning. One drop per eye when I wake up. My ibuprofen is a little bit further to the left. I take one pill every day for the rest of my life because of my knee injuries and surgeries. I just snapped that picture as I put the other pill bottles on my table where I keep my vitamins that I take daily from my pillbox.

I really can’t believe this is my life now!!! But it is… #MSsucks!!! 😒😒😒…

I said a while ago that I would talk about the fact that I can no longer put my nativity scene on my desk in my living room. And this may explain to you why:

That is what my desk looked like on December 21st. Those are my vitamins.

And these are my vitamins today:

Sorry about the messiness, I don’t think my Mom would appreciate me sharing this picture, but I was able to snap a picture just now. So, I no longer can put my nativity scene up. My desk is used for other things now. My Mom was able to call the owner of Zerbo’s to place my order for Wednesday because that is when I get paid.

I, for real, started frequenting Zerbo’s after I went to Florida and went organic in the summer of 2007. I have been a customer since then and now, as my disease progresses, and my supplements are becoming even more important, my Mom just speaks to the owner who does the ordering.

Looks like we got it like that now, I never thought that I would in my lifetime but I’m glad that we do. I suppose? I say, “We” because my Mom has to do the talking because I cannot.

I had to change out my Ginger Spice chapstick twice. I had just a little bit left in a tube after Thanksgiving and then I used an entire tube all by myself this year so then I changed it out so I have like a half used tube for next year. Ho-Hum, no big deal.

I woke up this afternoon and it felt like I had been hit by a Mac truck. I had to lay in bed awake for two audio rosaries to try to convince myself to get up.

I’m absolutely startled at how difficult this is right now. Nothing is easy anymore.