When I awoke today, which was I think about 1:30 in the afternoon, my Mom had placed the ladder in the way for me to get into my normal spot so I waited by the bathroom and she moved the ladder and then she hit the light switch and my tree lit up!!!
I gasped even though I did not have my contacts in! I could see the lights and it made me excited! I tried to get a good picture today of the lights but I have already taken my contacts out tonight and I’m really not feeling it right now but I snap this one for you all. Phase 2 is now completed!:
The lights are up but I fear that it’s a bad MS-y day… again…
My, “2 Sacreds” are both asleep right now heart is full. Sean is sleeping on the couch and my mom is sleeping in his room and my old bed. I’m listening to my Christmas faves on Apple Music and I don’t even feel badly about crying with this one came on!!!:
So, I’ve been listening to my Christmas playlist since December 1! But there is something going on as well. I did not realize this until last night because I was eating a lot of chocolate! I can have the dove dark and mint chocolate and I bite it into four pieces. I usually just have one or three at most but I was eating them a lot and I couldn’t figure out why!
But then, it hit me. It’s December. December 28 is coming. This year, it will be 22 years since I was diagnosed with MS. I have had that for years more than half of my life and that just kind of hurts. So, I can’t get rid of the melancholy feel around this time as well so I’ll post the two songs that help me get through it:
So, today, my Mom was going to watch me put my contacts in when we both heard a crash of breaking glass! It was coming from the kitchen where Leia was so my Mom instead of watching me put my contacts in, want to see what it was.
When my Mom saw it, the litany of, ”Bad girl!” And this is how Leia reacted:
My Mom is still cleaning it up and she will randomly reiterate that Leia is a bad girl! I don’t have my contacts in, I have not brush my teeth or even eaten my lunch. All I’m thinking about now is that I have a movie to watch! Leia still is not moving!:
I think I need to tell you a little bit of a backstory before I tell you what happened last night. My house was built in 1951. In 1951, disabled people didn’t own houses, especially disabled people using a Power chair! As the homeowner of this house that was built in 1951, it poses a bit of a problem seeing that as the homeowner, I am disabled and I use a power chair!
Basically everything now has a process. The process that we utilize is to make a non-handicapped accessible area, accessible to me.
So, long story short, my power chair is just outside the bathroom as I am inside using the bathroom. Last night, Leia got out of her bed and walked over to the bathroom and just yakked on the floor and turned around.
I thanked her and told her that I appreciated that she did that on the tile but then I had to call my mom to clean it up because having had MS for 21+ years, my sense of smell is so acute!!!
It’s December 1 so I have a Christmas movie to watch now…
I think I did this a couple Christmases ago. I made a playlist of all my favorite Christmas songs! The day after Thanksgiving, I am free to play that playlist constantly which is what I have been doing. I put my favorite song four times in a row on it to begin the playlist. Everyone knows by now what my favorite song is but if you have some sort of lapse in judgment, I will remind you:
I couldn’t understand why I had saved this song in my playlist. I grew up hearing it so I was familiar with it but I didn’t know why it was in my playlist until my Mom told me that she likes that song! That’s why?!
I have told everyone my favorite song and just this year, my Mom and I were watching The Santa Clause and my Mom mentioned that she likes the Carol of the Bells. So YOU KNOW that I had to add another song to my Christmas playlist!:
I added these two songs because my Mom likes them, that’s why!
I pretty much start my blog posts out by saying that I did not sleep well because sleep is difficult for me but it eventually happens.
Well, last night was no exception! I peruse my phone to distract myself and possibly get tired for a while and then I put on an audio rosary when I think I am close to falling asleep. That’s what I did last night (or this morning), and just as I was almost asleep I had a memory of probably when Sean was 14 and instead of falling asleep, I kept laughing!!
I think it is such a random memory but I remember that it made me laugh, Sean laugh, and the spectators in their car laugh as well! When Sean was 14, I was still driving and he was not driving yet so we went to eat at Famous Hamburger on Michigan Avenue.
So, this is a seven year old memory but I could not forget laughing! It was 3 o’clock in the morning and I had to text Sean because I could not stop laughing! And I actually got a response:
I had texted him Adam Sandler‘s acceptance speech at the Gotham awards so that is what he was talking about and I loved that he actually remembered it!
I was still driving and still in a manual chair back then. We had just left the restaurant and he was pushing me to the car. We got stopped by a crosswalk and then it started to rain just a little bit. Once the crosswalk changed to walk it was only like that for a moment before the blinking ‘don’t walk’ started. I told Sean to, “Run!” And I started pumping my arms in my chair. I started to laugh and I heard Sean laugh as I turned my head and saw the couple in the car right at the stoplight laughing too!
I have no idea what made me think about that memory from so many years ago but I can still clearly see those people laughing as it started to rain. I used to do silly stuff like that! But now, I think my disease is getting a little too advanced for my enjoyment. At least my complete enjoyment! I don’t mind living in my memories though especially ones that make me laugh so hard!!!
This Christmas song will forever remind me of my cousins,Sal and Melinda, and their friend serenaded us one evening when we celebrated Christmas in Texas. The biggest thing that absolutely blew my mind was that we barbecued on Christmas day with my aunt and uncle!
I think it was a couple years ago when someone asked on Twitter our favorite version of the Christmas Carol, O, holy night. I interact with this guy a lot on Twitter because he tweets funny things! He tweeted a survey that gave us four options of a singer but then there was a fifth option, it was, “other,”
So I checked the other box and tweeted this video! He responded with just a, “Wow!” And I agreed in my response because I love this song! I have already listened to it a number of times since Friday!:
The whole reason I am saying this is because I am wearing a shirt I got a few years ago and it says, “Oh Holy Night” So I am going to post this blog post in hopes that you can still get the Jon Secada version of this song by clicking on the link.
Well, I was nervous about this all weekend long but it seems that my workaround worked perfectly! I knew what I needed to do and I started doing it at 1:23 PM. That was just after I got out of bed! Don’t judge me! I am chronically ill!
I called my medical supply company who has been my medical supply company for years. I am no stranger to waiting on hold when talking to a doctor’s office so I just waited. I knew exactly what I needed to do and it took me 48 minutes to get it all figured out! Kudos to Marie who was excellent and I gave her all fives in the survey!:
Marie told me that my monthly order was on hold because I needed to change my primary care physician in the order. I did that and she did some thing on her end where I would be on hold for a little while longer and then she told me that it will be shipped out today!
Once I hung up, I let out a heavy sigh of relief because my medical supplies are coming now! I really can’t even understand how this happened because I have been receiving these supplies since 2001. That was when the doctor prescribed them to me but that was after a very strenuous testing that was done.
That was the doctor home my neurologist’s nurse wanted me to see but I have seen him before! He is the specialist who people with MS see and whom I have seen before. I don’t need to see him again! I did not like his bedside manner and they don’t have a cure for me now so I just need my supplies!
That’s why I had my workaround because I did not want to go through that test again because I already know what the test would say! I messaged my current PCP and told her that my medical supply company will ask for authorization for something that I have needed since 2001.
We also called Dr. Skarf’s nurse as well today and left a message for her to call my Mom back for testing and scans thatI need to have done on my eyes in the new year.
I have been in my head since I received that message from my neurologist’s nurse about the necessity to see a specialist. I have a clear idea of the two phone calls that I need to make an order to make this miscommunication problem go away.
I have talked it over with my Mom incessantly since I received the message. I think this just all makes me nervous!!!
I guess that I just can’t get over the fact that this new nurse doesn’t know my 21+ year history with having MS in the same health system! That’s how I came up with my workaround. I am just going to change the doctor who prescribes my medical supplies.
It’s really no big deal, but I keep getting in and out of my head and that seems to make me nervous! But the thing that has calmed me the most is how calm my Mom is about this! She assures me that I know my body and I have known it for 21+ years!
This is all startling to me because I have not been in this situation before where the people responsible for signing off on things for my medical benefit have retired. My previous neurologist and his nurse just handled me getting my medical supplies on a monthly basis like clockwork and I didn’t know that I had to do anything! Now, that all changes but I think I have figured it out! I will know more tomorrow.
