So, today is here. Today is December 28th. I am quiet today, as usual. My debilitating disease is finally legal to drink alcoholic beverages. Too bad that I stopped drinking a decade ago! In speaking with Sean today, I told him that the teeter totter is no longer level and my 21 years is left on the ground because after 21 years, it’s quite heavy to carry! I am left with no other choice but to carry it. I was thinking about today being my 21st anniversary and the fact that a family friend/acquaintance was recently diagnosed. I was struck by hearing this news and I have thought of that of a scared 18-year-old girl being told that she had multiple sclerosis. I will never forget how that day felt 21 years ago! I saw this posted on Facebook a few days ago:
On this day, 21 years ago, my life, unbeknownst to me, was divided into two parts! Before and after this. The before part is starting to get a little hazy and the after is proving to be so tiring and difficult!
I clearly remember when we (Sean and me) got our first wall-mounted TV. It was well past the time they first came out but I had just paid off a credit card and there were still papers in the waiting area at Olive Garden. Bright and the front page was a TV that they had priced and looked at with a friend at Best Buy! It was thousands of dollars but I knew I wanted it so I had them print out the specs and I sat and them for about three or four years. But looking at the sale paper, I saw the exact same TV for $899! I looked at Sean and asked him if he wanted to buy a TV tomorrow! We were going to an appointment to speak with the dental surgeon who was going to remove four of his molars. His 12 year molars. That was to make room in his mouth for his other teeth. These teeth needed to be removed before he got braces.
Sean was excited for that and the next day, we bought our TV. So, Sean must’ve been 12 and currently, he is 20. my TV has begun to blink and sometimes the sound will go out for a little while. In other words, my phone is dying after eight years. It has been blinking like that for months and just recently, it was blinking more often and The screen is pixelating. After some serious budgeting, I was able to get a new TV this past November. This morning, while I was still asleep, it was delivered and installed. The man had already left by the time I woke up and my Mom came to get me out of bed. I just finished washing my hands when I said to my Mom, “I have a new TV!” Went into the living room and turned my chair around to look at the TV on the wall. It looks the same! But, they no longer make 46 inch TVs so I have a 50 inch TV now. It looks a little bit bigger than my previous TV but it still is the same!
When I looked at the TV, I saw Collins say, “It tastes the same.” I first heard this song with my cousin Shannon. It was the Broadway cast and we both sing along to the entire show! When Brent came out in a movie, that’s the only version I can find on YouTube but even though the words are a little bit different, I just love hearing the guy from Law and Order sing!:
I still have to input my Wi-Fi password and the passwords for my streaming apps but I don’t know if that’s going to happen tonight or tomorrow. Tomorrow is a BIG day that I’m NOT looking forward to thinking about… 21 years with MS. 😒😒😒
Last night, I pulled off the strip to unseal my Cocoa mint chapstick. I did that last night because I knew that I would not have much dexterity in my fingers in the morning. This was so I would be prepared to say hello again to my Cocoa mint Chapstick!
So as I got ready for bed last night, I listen to Bruce Springsteen one more time for my cousinT, Shannon because that’s her favorite song. Before I went into my room, and I put my ginger spice Chapstick on for the last time. That smell will always remind me of my a bola and bring such fun nest for Christmas is at her house:
I didn’t learn until this year that she loved bangle bracelets. Learn something new every day even though she has been gone for 31 years. I can’t wear bangle bracelets because my wrists are too small. I’m thinking of alternating the shortbread cookie chapstick just so it gets used up…
This is the last post I will write before Christmas. I have had a couple of MS-y days so I was unable to write it earlier but, when I watch the Rams game on Monday Night Football, I listened to the music before the commercials. I jammed to these three songs and thought, “This is MY music!” And I am almost 40! These kids need to get their own music!:
Now, I was an adult when this song came out but I remember teaching and my kids LOVED this one so I did too!:
And when this one started, I couldn’t believe it because this man has been dead for 25 years! They definitely need to get their own music!!!
When Sean was 12, I would tell him to NOT to open any packages that arrive! And I remember one Christmas, I think he was 13 or 14 when I ordered free weights for him. Two sets. I ordered a set of 15s and a set of 25s They came in two boxes, one with the set of 15 pound weights and the next box had a set of 25 pound weights. Needless to say, neither I nor my Mom could carry them into our house. We left them on the porch and when Sean got home, I told him, “ Merry Christmas! Those are a couple of your presence. They’re too heavy for me or Abuela to carry so just bring them in. So…” But now, I have progressed to 100% online shopping. I laughed when I saw this on Facebook:
I have been completely tracking my packages! Uncharacteristically, I was late in ordering all of my Christmas presents. But because I have been tracking my packages,ALL of them are going to arrive on time, even my Christmas ornaments! I hope next year I feel more Christmas-y!!!
Sean came over a couple days ago and told me that he saw a Tik Tok video with a dog knocking over a Christmas tree! He told me that when he saw that that he said that I would totally lose my mind! He is 100% correct! I’ve had many of my Christmas ornaments for 20 years! I am a very sentimental person and I am completely certain that if Leia knocked my Christmas tree over and broke any of my ornaments, I would have to hate her! And because I love her so much, my Christmas tree still looks like this because she is just 2 1/2!:
No ornaments and I still have yet to find my tree skirt but this is it! given this is the second year of the pandemic, I’m really not feeling very Christmas-y, so much so that the Christmas ornaments I ordered this year are supposed to be delivered on the 27th. I’m OK with that though, they’re not going on the tree anyway and it’s a gift for me to open and open up on my 21 year anniversary of being diagnosed with MS that happens on the 28th.
Last night, my Mom bundled Leia up in a blanket in her bed to go to sleep like she does every night. She then was going to help me to get into my bed. Upon transferring from my wheelchair to my bed, I faltered a little bit and a groaned an, “Oh!” three times as I trying to get my footing as my Mom guided me into my bed. Leia, upon hearing my groans, jumped out of her bed and ran into my room. I saw her do this over my Mom‘s shoulder and I smiled! My sweet girl! My Mom turned her head after I was safely laying in my bed and she rubbed her head and called her, “Beautiful girl.”
Since I was laying on my bed, my Mom went back to Sean‘s room to put Leia back into bed with her blanket because my Mom already knew that since Leia jumped out of her bed to help us, the blanket was sprawled all across the floor. Once Leia was all tucked in, my Mom came back to stretch my legs and this song played over and over in my head and I thought of listening to this CD when I was going to work at 7-Eleven in the early morning in the summer after high school:
My speech pathologist messaged me a list of words to read off of. It was very similar to the lists of words are used to give my students to read to me. The purpose of me doing this was to see what they were able to read. For me, the purpose of Meira giving me these lists is to see whether or not I am able to say them. I still need to read the third list tonight but I am looking forward to it.
I talked to my best friend today and told her that I need to talk on the phone. She has heard me sound drunk before when we spoke on the phone so she is completely all right with me talking with her. I have spoke to Sean on the phone a couple times today and I asked him how I sounded and he told me that he can tell that I am working on it! But, Meira says if I practice a lot, I may NOT lose my speech. I will hope for that because so much is so difficult for me now! Now, chewing food and speaking is difficult.
The most recent difficulties I have been experiencing startle me and I wonder what else is there to become more difficult if not no longer able to complete. This really scares me. But I have to read my third list and I am tired! I can’t believe talking is tiring for me!!!
I posted on Facebook yesterday that it was the first time that I have watched It’s a Wonderful Life. I wrote on that post that I bawled my eyes out from beginning to end! I have seen this movie so many times since I was a small child! Donna Reed (Mary Hatch) was my Mom‘s favorite actress so we saw that movie so many times every single year during Christmas time. I think it had to be four or five years ago that I saw it as an adult. I can say pretty much this entire movie verbatim but as a child I didn’t understand what the movie was about. Seeing it as an adult, crushed me! this is the first movie I can pretty much say verbatim but Hocus Pocus and Love AActually are kind of getting there but for this one, as an adult, I can only see this movie just once a year!
