Month: January 2025

Today is Saturday so I pillaged:

It takes me longer to pillage because I take so many supplements! I go see my naturopath on the 21st of this month. I have been telling my Mom that my head is spinning with my disease progression as of late.

I’m slowly realizing how small my life is now! But, this week is a “Go Time.” I have three separate appointments so that means three separate van rentals. We are getting our haircut on the 15th, I’m going for an ultrasound on the 17th, and on the 21st, I am going to see my naturopath.

In February, I have to go to the dentist. I have to have three cleanings a year now. I really don’t like this! My hygienist suggested it at my last cleaning and I said that I would think about it. When I got into the van with my Mom and told her, she told me that my Dad had three appointments a year as well. When I told Sean about it, he told me that health goes south super fast in your mouth! I called the following day and made my appointment.

I don’t have a June appointment yet for 2025 so it’s good that I will have availability that month. I think that I have to have three rentals a month now because I can’t do more than one appointment day anymore. So, three separate van rentals it is!

I remember seeing a Sara Bareilles documentary or something like that where she is renting a place in New York. she was in her kitchen and looked at the camera and said, “Things spill.”

I think she finished by saying something like, “That’s all I got right now.” I don’t even know if it ever became a song but I was thinking about that yesterday. I don’t even know where I was when I saw it or even when it was.

I remembered when I watched it that I thought it was strange that she was moving into a furnished apartment. But I thought about what she said yesterday especially.

Tears were spilling out of my eyes, and there was no controlling it! That seems to be happening A LOT lately!!! I no longer think that my tears are ‘strong and silent’ anymore but rather pathetic.

I will tell you right now that 24 years and AIN’T. NO. JOKE. That’s not even proper English but I can’t believe how much this stinks!!!

Today, while my Mom and me were talking, I looked at her and said that I am staring at a quarter of a century of having MS in 11 months?!

It was more of an exasperated statement than a question but tears immediately followed!!!

I can’t believe this and I’m not OK with it but it is happening and I have no choice but to deal with it. All I know is that I am not OK at 24 years and I can only imagine what a quarter of a century will look like… This is all so shocking!!!

I want to first put everyone at ease that today, I did NOT spasm while opening my supplements. Thank God! I think it’s terrible that I did yesterday so I know that it IS possible and having seen, Love and Other Drugs, I know what it looks like AND that it IS possible for me. That’s a little bit scary!

I’m not even sure what I was talking about with my Mom, but I let her know that my entire life is, “Scripted and scheduled.”

She agreed silently as I explained how my entire life is both scripted and scheduled. I do the same thing every day! I think I have been doing that for a few years now!

Actually, I first realized that I was technically homebound in December 2023, so it hasn’t been a few years. But I have been doing the same thing for a few years now! I told my Mom that I’m not upset about that because I know what’s expected of me.

So, I guess I don’t MIND my life being ‘scripted and scheduled,’ but I NEVER thought that my life would be ENTIRELY this way but that seems to be where I find myself. ‘Go Time’ is in a couple weeks. Three appointments this month so three van rentals.

I was not at all prepared for what 24 years of having MS would feel like. Well, it feels terrible!!! Absolutely terrible!!!

I have been telling my Mom that MS is a ‘Mother B*tch’ but she doesn’t like me saying that! But I think I call it like I see it! And it’s brutal!

I was just talking with my Mom about when I was on Canadian crutches, and I said, “To think this would end in a power chair…”

And now about all of my #NotSoRandomReposts this morning on Facebook and Twitter of my blog posts. Mornings for me are really difficult for me now, actually, mornings are nonexistent. I mean in the afternoon when I wake up, it’s really difficult.

It’s so hard to deal with my disease progression! I am just trying to deal with it as it comes, but this is what happened today:

Upon waking, I have to stay in bed for two rosaries to try to convince myself to be awake because my entire body is killing me. And when I call my Mom over, she gets me out of bed, and then the race begins.

I am extremely groggy when I wake, and when I get to the living room, I just say one word to her, “Detox.” that’s when my Mom will give me just a little bit of hot water with 10 drops of the detox in the morning and at night. I take every morning on an empty stomach. I then say a rosary because after 20 minutes of having just the detox in my system, I have to add a ‘mouthful of dirt.’ that’s the Ceylon cinnamon that I will take for the rest of my life! I then say another rosary and a divine mercy chaplet before I take my morning supplements.

This is all routine stuff for me now because we’ve been doing it for I think a little over a year now. But I was not prepared at all for what happened today, after I was done praying after taking my cinnamon, it was time for me to take my supplements.

I have to take nine of these supplements a day so I take three with each meal. I just pillaged yesterday, so my pills are in my pillbox. This particular supplement, I have to take out of its own bottle.

And here is where the, Love and Other Drugs reference comes in:

I was sitting in my chair and grabbed the bottle of the supplement that I take with my meals, but as I grabbed a bottle, I spasmed. I’m not sure if it was my back or my arms or maybe even my hands; or maybe all three because I could not open the bottle just like Anne Hathaway in Love and Other Drugs.

I even breathed weirdly out of my mouth just like she did as she tried to open the bottle when she was having a flare.

All I could think was think that she was acting, but this was my real life! And it’s so scary now!!