Back to Duke for MS | VLOG 43

So I press the button again, she lets me out, you know, I get up and I'm like, sorry, it was just— I'm hot, it's— I have no— she's like, oh, you only have like 3 minutes left. I was coming out of the convenience store and it said that, uh, you know, smile, you're on camera. And I looked up and, you know, as the, uh has the measurements on the door. So apparently, according to them— I didn't know this— according to them, I'm 5'5", 5 and a half feet. So, um, somewhere along the lines, I, you know, I shrunk, uh, I shrunk 5 and a half inches somewhere, um, being my I thought that was funny, but yeah, I'm headed to Duke for my checkup, check-in, see how everything's going. I do not have to do an MRI today. I actually haven't done one— hadn't done an MRI in a while. I know I said this on the podcast, but I don't think I've said it on YouTube. The last time I had an MRI, it was, I won't say where, but it was a little warm in the room for me. So anytime my body heats up or my temperature heats up, my MS, you know, comes out. Anytime I'm tired or exhausted, it makes my MS worse. So that's why you hear my slurring sometimes, or when that happens, I'm usually tired or warm or both. Anyway, it was, it was kind of warm in the room, and I was like, it's a little warm to me, but you know, the MRI is gonna take an hour and 45 minutes to an hour depending on how quickly they go through it because you gotta do a brain scan, and then after the brain, the neck and the spinal cord, all that takes a minute and it's fine, but a little warm, so I get in there, you know, lay down. This is— this place is kind of old school compared to Duke. It has a mask that goes over your face like I used to have. Um, since I'm like All right, I'm fine. A little claustrophobic, but, uh, yeah, I've done what, like almost 20 of these, so it shouldn't be a problem, right? Um, so it starts, they start. Let me back up by saying I'm used to people— there's no clock in there, okay? You know, I don't have access to my watch, don't have access to my phone. So I have no concept of time whatsoever. So as this is going on, you know, I'm trying to control my breathing. You know, there's a mask right over my head, right over my face. Trying to stay calm. It's a little warm. Heart rate's up a little bit. Trying to be still for the MRI. So what I'm used to at Duke anyway, the room is cool. It's cold, they're always talking to you. They're always talking to you. Hey, we're doing this scan, it's gonna take 15 minutes. Boom. We're doing this one, it's gonna take 20 minutes. Boom. We're doing this, it's gonna take 40 minutes. Boom. But at this other place, there's no one talking to me, so I have no concept of time. I just know I'm not— I'm trying not to freak out. I don't know how long this is gonna left. I don't know how long I've been there, uh, I just know I've been there for a while. I got that little button thing in my hand. I've never pushed this in my life. I've never freaked out, um, because mainly I'm used to someone telling me, hey, uh, you have this much left. We're doing spinal cord, we're doing this test, it's gonna be 15 minutes starting now. So I always have a someone talk to me, tell me, hey, you're fine, we're doing this, we're doing this. I got some idea of time. Anyway, at this appointment, at this MRI, none of that is happening. So claustrophobic, got a mask on my face, it's getting warm, I'm getting hot, heart rate's really going up, I can feel it. Um, but I'm like, Derek, calm down, it's fine, calm down, it's fine. But no one's I'm talking to. No one's saying anything. I have no concept of what's happening. I've lost the fact that I don't know how long I've been there. I don't know how much I got left. Anyway, I literally cannot take it anymore. You know, I'm trying not to freak out, but finally I press the button. Press the button, the light comes on. She's like, you're all right? I'm like, let me out, let me out. She lets me out, you know, I get up and I'm like, sorry, I'm hot. It's— I have no— she's like, oh, you only have like 3 minutes left. I was like, okay, that was a very good piece of information before I got out of here, got out of the machine and stood up. So anyway, they didn't have a good result on that last portion of the spinal cord, but I guess it was good enough. They didn't say anything else. So I'm saying that to say this: every place is not equal. I got used to Duke. I got used to the cold room. They don't have a mask anymore to go to. They got earphones. They don't have masks because they're heavy anymore in your face. So anyway, next time I get an MRI, it's probably going to be back at Duke. I know it's a long drive, 2 hours one way. That 45 minutes or an hour makes a difference. So I did not— I didn't get a survey. I didn't get a feedback form. If I would have, I would have said that. And if I'm in the environment and someone asks me, I will tell them. Um, but yeah, you gotta— when you're, you know, laying in a confined space for like 40 minutes, you do need to talk to someone to let them know what's up. Um, yeah, I got up, it's just like, yeah, you got like 3 minutes left. I was like, all right, that was good information before I I don't know. But anyway, no MRI today, just to check up, see how I'm doing. In a few weeks I have— in a few weeks I have my infusion, my first infusion of the year. Ocrevus has been going really well for me. Like I've said before, I feel better. I Actually, I'm up to exercising now about 6 days a week. Nothing crazy, just, you know, 14, 15 minutes of exercise. I'm trying to kind of rotate it now between the physical exercise for about 14, 15 minutes and then, you know, walking, which is taking me about 40, 40 to 45 minutes depending on what's going on. Um, I walked on Saturday, walked on Saturday, Saturday morning, and my heart rate was elevated. I did my 2 miles, uh, I think it's like 44 minutes, 44 minutes. But I felt it was windy, I felt the wind resistance, so I felt like I was working harder. And then I go back and look at the data and it's the highest my heart rate has ever been. And then another metric about how hard I worked, that was the highest it's ever been. So it wasn't just in my head, it was windy, I was working harder Saturday. So anyway, headed to Durham right now and check in with you.

You have to wear a mask anywhere. On the Duke campus, but I'm in a room by myself. But, uh, already checked in, weighed in, parked, took a nap, and walked over here. Um, a little hack for you: always show up early, especially with MS, or if you have fatigue. One thing that, um, I've been ashamed of I'm working on it, but it's my fatigue and having to take a nap or having to take, you know, 20 minutes and refocus or regroup. So today I showed up like an hour before my appointment. That way they want you to check in 30 minutes before the appointment, but it had, you know, 15-20 minutes minutes after our part of just sitting in the car relaxing. I don't think I even took a nap, just relaxed, took a moment, took a beat. Sometimes you need that. And then I, you know, walked through the parking deck and walked all the way over here to the clinic and checked in and weighed in, and now I'm waiting. Just take a minute. And you know, if it takes you a little while somewhere, give yourself plenty of time. Give yourself time. Don't try to cut it close. Give yourself time so you can be the best version of yourself at that moment. So, waiting on the doctor, or we'll see, I guess. All right, done with that. Uh, decided to, uh, decided to take the, uh, scenic route. Yeah, look at that, the scenic route back to the, uh, parking deck.

But that's that checkup, good to go. Blood work, yeah, they got some blood, but, uh, be all right.

It's been a long day, but we're going to finish up with the 2-mile walk, get some exercise. Um, but the sun's still out, so we're going to take advantage of the rest of the day.