Category: A Bit Of Randomness

I just set my alarms for tomorrow morning. I need to get up at 9:30 so I can’t get out of bed at 10 so my Mom can go get the van in the evening tomorrow.

This will be the end of a ‘go time’ for July. I have my procedure on Tuesday and then my haircut on Wednesday.

I think it’s a little bit too bad that August starts on the fifth so there’s no rest for the weary, I suppose… Optometry appointment on the fifth, after procedure appointment with my Urologist on the 13th. Haircut on the 20th.

I caught a glimpse of my face on my phone today. I was startled! It took me a minute to realize what’s going on. I thought, do I really look that bad?!

The answer is yes. Yes I do. Today it has been 14 days since I’ve been on supplements. I absolutely feel it! But my Mom got a call today,

I need to arrive at the main entrance of Henry Ford West Bloomfield at 8:30 AM tomorrow. My surgery is scheduled for 1030. I didn’t like hearing the word surgery! But that’s what it is I guess.

I am a little bit startled, but I am focused. I will let myself cry!

Dude! I had surgery yesterday?! The doctor said it was minimally invasive but she also said that I would be sore for two days. Yesterday, it smarted a little bit.

Today is another story! It took me until today to realize that I had a surgery for over four hours yesterday! I double recovery time now having had MS for 24 years.

I don’t know what to expect because I have never had MS this long. My head is STILL reeling!!!

Yesterday, all day, my body felt like it was on fire! I kept telling my Mom it was hot and it wasn’t until she transferred me in the evening where she felt how warm my body was. When she transfers me, we are face-to-face practically! She nuzzled her head by my neck and she said, “You are warm!” I looked at her and said, “It’s been like that all day!”

When I opened my eyes today, my shoulders didn’t hurt like they were hurting yesterday, and I wasn’t so warm. It wasn’t until I was using my therapy party where I felt that just my face was flushed!

Man, recovery sucks!!!

So, Dr. K said that everything went well and I should feel fine in two days. Well, today is day three, and I am still not recovered! I totally know that it would take some time, but I thought I would feel better than I do now…

I have been trying to wrap my head around this since I had my cystoscopy. Today was day four and I think it’s gotten better. The first two days were rough for sure! I really felt like I was on fire!

Yesterday, my nose was cold. All day long. Like a dog. The sides of my forehead felt a little bit flushed but today I feel okay, I think. As okay as I will ever get.

I see my neurologist virtually on August 1. I have so much to talk to her about! A couple days ago, my Mom was walking by and I looked at her in quizzically, I said, “So, this is a thing now?! my Mom just kind of nodded her head.

She’s trying to help me figure this out. I had an appointment in January that I discovered my calculus in my bladder. I made a March appointment for my urogram (that I am still paying for). I had my endoscopy and colonoscopy (which failed – I’m going to try to make an October appointment) in June and I had my cystoscopy last Tuesday.

I go see my surgeon, who is my urologist, on August 13 to discuss the next steps. I think that given the length of time that I’ve had MS and my immobility, these are going to be a thing now!

It took me 24 years to get this procedure/surgery and Dr. K says that she she wants to give me more frequent scans so this IS a thing now…

At least I know to expect now. These last four days have been brutal, but I think I’m okay now. I do wonder when my next round will be? #MSsucks!!! 😒😒😒…

I’m still not feeling okay and it has been five days. I was telling my Mom today that this cystoscopy is going to happen again. Now, this is going to be a thing! I see Dr. K on August 13 so we’ll see what needs to happen for me next.

It feels like a smack in the face! I have never been smacked in the face, but I imagine that this is how it feels! Listen to what I had to do today:

I texted my Mom to call the gastroenterologist nurse tomorrow to schedule my next colonoscopy but I had caveats with that. I need to see my naturopath on September 23. That’s a Tuesday and I am currently taking all of my supplements as prescribed.

But here’s the thing, I need to NOT take my supplements for at least 10 days before I have my colonoscopy and endoscopy. That is rough on me for sure! But, the fact that I am scheduling doctors appointments to coincide with each other is kind of nuts! This is where we are now. #MSsucks!!! 😒😒😒…

My Mom got a phone call today. It was Dr. Cerghet’s office (my neurologist) to tell me that there was a cancellation and to see if I could see her today at 1:30. She told me that when I woke up today.

I thanked her for telling them that I need to be on top of my game for that appointment and that I was still sleeping so will not take the new appointment. I will keep my appointment for August 5.

I have NEVER expected it to be like this! I have entered into such a complicated dance! That’s my ENTIRE life now. I tell my Mom that all the time. It doesn’t make me angry or even sad; but I NEVER expected it!

It startles me and KEEPS startling me! For example, my Mom needs to reschedule my colonoscopy because I sleep in too late (it’s beyond my control now ) and she’s my caregiver. We were told to call back at the end of July to reschedule for the beginning of October.

So, my Mom did that today and I texted her all the dates that were possible for October. But here’s where it gets complicated, I need to stop taking my supplements for 10 days prior to my next colonoscopy. But I have a September 23 appointment with my naturopath to dose me for a supplement that will help with my gastritis.

And, to further complicate things, I rent a van to go to the Cider Mill every October! I think that will be the fourth year that we are doing it and Sean is going to come this time!

This is a dance that I NEVER wanted to be a part of, nor did I EVER think that I would be, but I am. I don’t even think it’s begrudgingly…. It’s not like that. It’s just how it is.