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Progressive Lesions, Burning Feet, and Daily Limits

Day 2 · 6:59:10 · Shawn Buckley · Julie Ivan · Dean Allison

  • 🧠 Neurologists say the damage is done; a new brain lesion has appeared and sensory shocks now hit hands, head, and torso.
  • 🔥 About 500 feet of walking brings burning soles and numb toes; hand dexterity is so poor buttons need help.
  • 😴 Severe fatigue caps useful mornings; she works through pain inside Canada Post after leaving outdoor carrying.

Current deficits, failed IVIG side effects, and the grind of symptom management.

← Julie Ivan Sworn: From Ultrarunner to Spinal Lesion | Q&A: Family Life, Stigma, and Workplace Accommodations →

Transcript

Shawn Buckley · 6:59:10

So you basically go to the hospital, they do MRI, they're doing all of these tests, but they're not able to solve the problem. They, they realize— they tell you right away the vaccine caused this by causing your immune system to attack your spinal cord, but they don't really have any solutions for treatment. Am I right about that?

Julie Ivan · 6:59:30

Just the prednisone to bring down the inflammation. But she— the neurologist basically said the damage is done. There's nothing you can do about it. You just have to figure out how to live with the symptoms of it, which are progressively getting worse. So now I just had another MRI a couple of weeks ago and I just had the neurologist appointment yesterday and there's another lesion in my brain now. So it is getting worse because now there's new lesions forming and the sensations—.

Speaker L · 6:59:57

She—.

Julie Ivan · 6:59:59

The fatigue is really bad. I get about a good hour or two in the morning and I'm tired. So she can't give me a stimulant because she will— she says it will make all the sensory issues worse. So it's kind of just, you know, or else painkillers, which I don't want to take.

Speaker M · 7:00:14

I'm very—.

Julie Ivan · 7:00:15

I didn't even want to take the medication I'm on, but it's supposed to scramble the signals from my brain to my body because my brain is sending the wrong signals. So I'm taking that because I have to, but I don't want to take any pain. I would rather the pain and feel what's going on than the numbness that came along with those gabapentin and that kind of thing. I just wanted to— they're not a good mix for me. So I'm taking what I have to and try to do lion's mane and a natural approach. And, you know, I smoke marijuana to help at the end of a day at work. I can't do that all day because I'm working, but at the end of the night, that helps me just feel a little bit lighter about everything.

Shawn Buckley · 7:00:58

So I just, I just want to get a feel for kind of how you're like today. And so You've still got all these numbness and tingling and shooting. My understanding is, is that, you know, if you walk, I mean, even just 5, 10 minutes, your feet feel like they're burning and that you have to stop walking then because it becomes too painful.

Julie Ivan · 7:01:23

Yeah, I've been walking. Yeah, it's about 500 feet. After you asked me that the one day, I'm like, I'm not really— I didn't really pay paid attention. So now I'm trying to walk a little bit, and it's about 500 feet before they just— it's just the soles of them are just burning so bad. And, but then it'll go to numbness in my toes. So the soles are burning, but my toes are numb. So then you're kind of compensating walking with numb toes on the edges and numb heels, or it feels like someone's grabbing you around, uh, the ankle. Or it just feels like these odd sensations. I get these electric where it's just all of a sudden I'm just like this because it's like an electric shock around my middle or the hands are numb or yeah, it's just a host of all different things daily.

Shawn Buckley · 7:02:09

With your hands, you've also lost dexterity, right? Like things like buttons up and that is extremely difficult.

Julie Ivan · 7:02:16

Yeah, just getting buttons done. And I have a lot of help getting things done up and stuff sometimes. And I just had carpal surgery. Carpal tunnel on one hand. They want to do it on the other, the ulnar nerves. Like, just seems— I guess what I've been told is the immune system is on overactive, like, overdrive. So everything, uh, I had a rheumatologist send me to do IVIG, which is the, you know, you go to the hospital and they infuse you with that. But then that just brought a whole other— I had a rash all over my body, whiteheads all over my scalp. They're still all over my scalp. I had to take a cream, I guess, because I heard the IVIG gives you more susceptible to skin cancer. So I had an effect from the skin cancer cream. They gave me liquid chemo and now my nose is— I have makeup on, but it's permanently bright red because of spots they tried. Just it's a series of unfortunate events that keep happening and it just not getting any better.

Julie Ivan · 7:03:18

And my neurologist is great. She's known it was from the vaccine. The rheumatologist, you know, they're great. They acknowledge what it's from and they're trying to help. But it's basically you just got to manage your symptoms. There's nothing to do with it.

Speaker I · 7:03:31

There's no—.

Shawn Buckley · 7:03:32

Right. And you were talking about basically what's almost constant fatigue. So if you do something, There's limits on how much you can do each day.

Julie Ivan · 7:03:46

Yeah, I go and as soon as I stop, that's about it. I'm just— I have to keep moving and I work through a lot of pain. Like, I'll keep walking. My feet are numb, but I'm still going because mentally I need to feel that some exhaustion or something to be able to relax, you know, like I can't— it's not going to stop me from doing anything. I'm going to keep doing everything. But it's just a lot harder to do everything now.

Speaker H · 7:04:12

Right.

Dean Allison · 7:04:12

You have to push.

Speaker J · 7:04:14

Yeah. And I have, like I said, last night I slept great. I bought a watch to try to keep track of my sleep score and I slept. I sleep great. And still I got about an hour and I just need to close my eyes and I just want to go to sleep.

Dean Allison · 7:04:26

Right. After this, you're probably going to go straight to sleep. Yeah.

Speaker J · 7:04:30

Well, we can't. We got to fly home, but.

Dean Allison · 7:04:33

Okay. What's, what's been the most difficult part about this?