Month: December 2021

So, I had a rough day yesterday, to say the least, and I thought about this last night as I was falling to sleep. I think that guy has a new baseline. For the first 20 years of this disease, I have steadily operated at a 4. “I am constantly aware of my pain but I can continue most activities.” This description fit me quite well. It always hurts but I can still get stuff done! But yesterday, I was shaken when I could not swallow my pill. I’ve been swallowing pills since I was 12. The fact that this was going to be difficult for me totally tripped me out! “I think about my pain most of the time. I cannot do some of the activities I need to do each day because of the pain.” Seems to be a little more fitting of a category for me these days. Because, today I should have had my hair washed How much I rationalize it by shrugging my shoulders and saying,
“#DirtyHairDontCare.” Hi just put my winter hat on and I’m watching Love Actually. These things to help me not think about the fact that I am too tired to even wash my hair!

So, I think l operate more out of 4.5 or sometimes 4.75. Thinking about it today, it kind of scares me! In the future, I wonder how far I’m going to get in the pain scale and one!

I am forced to just deal with what I can when I can! When I think about it, it’s kind of depressing! This is the way it is and I will HAVE TO handle it! So this is me trying to come to terms with this horribly mean disease!!!

I had difficulty swallowing one of my vitamins this morning. I have been swallowing pills regarding my MS for 20 years so the fact that I had difficulty today, made me extremely nervous! I am 20 days out from being diagnosed with this horribly mean disease for 21 years. I am at a loss today.

On top of my difficulty with swallowing my vitamins this morning, I had a Virtual appointment with my speech pathologist today. Wouldn’t you guess it that I could NOT login?! We actually talked on the phone for 30 minutes instead and I will call the helpdesk tomorrow. So, I was extremely stressed out and not getting into the virtual visit and not being able to swallow my pill then I freaked out!

In speaking with my speech physiologist, she made a plan to bank my voice and she wants me to read some children’s books to have on file for my future grandkids. That made me feel a little better but this disease no joke!

I’ve been dealing with this disease for so long you would think I would get used to it but the pain seems to get out of my reach every day Like it did today. NEWSFLASH; #MSsucks!!!

My four Ginger Spice chapsticks arrived last evening. Sean was over and he opened it up for me. I was so excited and I explained to him why I love them. He politely listened with an amused face and looked at all of the chapsticks I have in the box on the table beside me. He told me that he only uses chapstick when he needs it. I told him that I NEED it CONSTANTLY now. He gave me permission to have as many chapsticks as I have and told me that it is okay because I don’t have any unhealthy vices so I can spend my time focused on things like this. I carefully removed the label that was on it for shipping and prepared to put the ginger spice on this morning. I started a new box specifically for winter. Or, after Thanksgiving and until Christmas day. After Christmas day, it’s cocoa mint!:

As soon as I pulled off the strip to unseal the chapstick, I took a whiff and was immediately a child at my Abuela’s house at Christmas time. I LOVED it! I showed this picture to my Mom and told her that I was going to post it on my blog and she looked at the picture so tenderly and said, “My mom! My beautiful mom!” I asked her how old Abuela was in this picture and my Mom thinks about mid 50s. Probably 55. If that is the case, currently, my Mom is 14 years older than she was when she died. She was 62. So, I know she was more gray when she died but she didn’t look much different. My Mom even commented on the bangles on her wrists and that made me laugh. She told me that, “My mother loved bangle bracelets.” I think it’s crazy that she has been gone for 32 years and I am still learning new things about her!

These Christmas hard candies are the reason why the smell of ginger spice reminds me of my Abuela! I remember when I first wrote about it, a couple years ago, both my brother, Ray, and my cousin, Alex thought those were disgusting! I think that they weren’t disgusting but they weren’t really good. We just ate them because they were the only thing there. It’s the same reason why my two brothers and I would take turns rocking on a small rocking chair when we went to my Dad’s parents house. That was the only form of entertainment aside from listening to Novelas that were ALWAYS on the TV:

They were located in a candy dish on the table just as you walked into the door. A glass candy dish that looks similar to this one but it didn’t have a pointy top:

My Abuela‘s house is no longer there. It was demolished 20 years ago or some thing. But I love thinking about that place and all of the wonderful Christmases I spent there during my childhood every time I put this chapstick on. I can crystal clearly see the layout of the house still! I love that the smell of this chapstick can take me back there! The smell of this chapstick pulls up all the priceless-ness of being at her house!

I wrote that when I originally received and opened my shortbread cookie chapstick, that it smelled like piña colada but I was willing to give it a proper college try! But after applying this chapstick daily, multiple times, and seeing the reflection of my Christmas tree with its lights and star on top, this is going to be a Christmas flavor now! At least, a winter flavor!:

I had to buy this one because the holiday pack no longer has ginger spice in it! I will show you how sneaky target is now:

This was the holiday pack I bought a few years ago that had the ginger spice flavor. I searched my blog and I found this picture and I was a little bit saddened that my tree looks so festive here! Because Leia is only 2 1/2, I am not putting Christmas ornaments on again this year! Sean thinks that is boring but I remember that we did NOT get our Christmas tree until we were in our first apartment and he had just turned four. The previous year, I recall him knocking over my Parents’ tree twice so it’s too much of a risk for me! I love Leia so much that I could NOT hate her but if she breaks my Christmas ornaments, I will be forced to hate her so it’s best not to have them! I was happy to get the holiday Chapstick cancel last month when I got paid but look at Target’s sneakiness!

The holiday pack looks the same but it is NOT! In place of ginger spice, they have salted caramel! I was given four options for my Halloween flavors and I decided that I would alternate days for each flavors and the flavor I like the least is salted caramel but now I have an entire stick that I HAVE to use! But I thought about it for a moment, I recall buying 10 sticks of açai berry chapstick on Amazon when I was working out at Baarwis because THAT is my Barwis chapstick but I think they stopped making that flavor. I got on Amazon a couple of days ago and I saw this alert this afternoon. The flavor was overpriced but how do you put a price on sentimentality? This flavor really reminds me of my Abuela! I think that constitutes pricelessness!!!

My Mom saw a movie on Netflix and wanted me to watch it. I watched it last night while she took a nap.

I texted my cousinT, Shannon, while I was watching it and asked her if she had seen it. She told me that a coworker suggested it and said for nothing more than the costumes at least! I told her that I LOVE the music!

it seems that Netflix seems to have the GREAT Christmas movies!

I recommend this movie to everyone! Just, “Get ready for the magic!”