Month: June 2026

I texted my best friend yesterday to ask how she’s faring in this heat:

It was even worse today.

The last 3 days have been too warm!

I can’t.

I just can’t.

“ Strike that, reverse it!” Is It is one of my favorite lines from the original Willy Wonka and the Chocolate Factory!!

That’s how I feel today. My Mom and I asked Google about the EMG and it’s going to be painful. No thanks! I am nobody’s guinea pig anymore and I already know that I have nerve damage in my feet because I’m feeling increasingly pins and needles when I wake in the morning. I don’t need them to do this test to find out more information.

That’s why I don’t get MRIs anymore. I think I stopped two or three years ago. What if I have more lesions in my brain?! They’re not going to fix me so I guess I’ll just live with it.

I am in a new mode now that I am homebound. This is a whole ‘bother animal! This heat really stinks and I just want it to cool down a little bit because my brain can’t handle all this!!!

I feel that it’s going to be a long, hot summer. I’m not looking forward to that!!! it’s 90° all next week?! I like that I’m selective in the test. I will help out myself to take! I’m not a fan of being in pain more than I already am!!! #ItSucksToSuck!!! #MSsucksInThisHeat!!! 😒😒😒…

I have an appointment with a vascular surgeon tomorrow. That sounds so important! A little bit scary. It’s someone to talk about my feet with. They have been getting cold and my toes still cause a problem for me. We have an appointment kind of early tomorrow so I will be waking up early but then I’m not leaving the house until July 15 for a haircut. I’m glad that I will be in the house next week when it’s upwards of 90°!!! It’s still a gametime decision to decide if I will wear my sweatshirt or my zippy and T-shirt.

I think that we have entered into the ‘waiting game’ regarding my chair. My Mom called yesterday and we didn’t get a response back. We are not sure if my doctor has sent the necessary paper yet.

I’m grateful that Dewan came by and fixed my chair. At least I can adjust my legs and back because the hydraulics are working. It’s still shakes and hesitates when I move forward or backward, so I need to have it on medium speed all of the time.

I have a vascular surgeon appointment on Friday and then I am home until July 15. This weather has been ABSOLUTELY killing me!!!

This song is still in my head from hearing it last Wednesday:

Right after I posted this video, my blog post was taken down and not even sure why.. But this song really hit me! I was still an undergrad in college and still living with my Parents. It was okay hearing this song in the salon, but when I listened to it by myself in my house, I had to stop 1:30 seconds in because I was crying:

I didn’t understand why my post was removed, but let’s see if this one stays up. On a different note, this weather is killing me!!! I’m leaving the house on Friday and right now. The forecast is saying that it’s going to be 79°. I think that is when I will bust out my zippy and T-shirt. I have a U Conn T-shirt because I am petty.

Maybe that song is a little bit petty, but it still hits me in my heart, hard-core! I still have crystal clear memories!

I will be happy when It is hot all the time outside! Because I have to put on the heat at night, it’s doing insane things to my body and it really hurts this year!!!

So, I feel pretty terrible and this weather is making me feel worse!!! I just had my first ‘overheating day’ of this season. I still have to have the heat on at night because my bones shake and then I wake up in the morning overheated because I’m under a bunch of covers.

I saw this meme, not too long ago, and I completely agreed with it!!!:

Things are changing now, though. My bones, my ribs, seem to shake when I get cold, but I think that’s better than not being able to see when I overheat. Either way, this does not feel good at all!!!

With my first ‘overheating day’, I realized that it begins in the back of my neck behind my ears, and then it makes a halo around my head. This is all neurologic and it hurts!!!

I can’t see when I overheat and I pass out. I feel that it’s going to be a long summer my Mom reminded me that I told her that I’d be happy when it’s really hot all the time but this morning I told her, “It’s NOTYET!!!” because it’s not happening yet. It’s just terrible.