Jes Hojsan - Spondy, Young Mother, Women's Issues

Jayson Sacco,

Welcome to this episode of the Ankylosing Spondylitis podcast. Well, as many of you know, I started the show to just kind of be cathartic for myself and get some of my feelings about Ankylosing Spondylitis and how it affected me off of my chest, so to speak. But as I did it in the show gained popularity, and more and more listeners came about, I started noticing that there's one area I can't address. And that's what's it like to be a woman with Ankylosing Spondylitis? This is where I just ran into a fantastic young lady named Jes Hojsan. And I have her on the line. And we're going to talk about being a woman with Ankylosing Spondylitis. And, importantly, being a young mother with Ankylosing Spondylitis. Jes, how are you doing today?

Jes Hojsan,

I'm doing really good. Thank you, Jayson, so much for having me on the podcast. Yesterday was my Cosentyx day. So I'm definitely feeling better today than than I have been the past few days.

Jayson Sacco,

Great. So we talked about that. I'm on Cosentyx as well. And you had to take a little bit of a break for some issues. And so you took about a month off from Cosentyx and now our back building loading dose up so I hope you get some good relief from it like you were experiencing before you you took that little break.

Jes Hojsan,

Yeah, I'm really hoping that the higher dose and the reloading of the doses is really going to put me back to where I was because I was really starting to enjoy life again. It was really great. How old are you? I am 30 years old. I was 30 in January.

Jayson Sacco,

When were you diagnosed?

Jes Hojsan,

So I was diagnosed officially via MRI last October. I had really been struggling for a couple of years with this really debilitating soreness all over, but I can go back so far as being you know, 11-12 years old and having really bad back pain at the time when I had seen my daughter I was diagnosed with a really minor case of scoliosis. I was also a figure skater, which is a really high impact and really, you know, physical sport. So I, you know, my parents just assumed that you know that the mix of those two is what was causing me pain and I ended up quitting figure skating around 18. And, you know, my back bothered me, but it was so normal to be in pain, and it wasn't ever debilitating at that point that I just lived with it. It wasn't until three years ago when I had my son. He was a newborn and I really started to feel you know, this pain all over, I could hardly get down the stairs, some mornings. It was difficult to to just get out of bed and carry him down the stairs, he usually would have to take you know, good 20 minutes or so to loosen myself up and to get down the stairs. And I had gone to my family doctor and I had asked them about it and I was really just told that this is new mom pain I had had a C-section You know, you're getting less sleep, you're carrying a baby, this is all normal. So I, you know, there's nothing more I could do. I just figured that's what they're telling me. This is the truth. And I ended up nine months later; I became pregnant again with my second pregnancy. And, you know, throughout the pregnancy, I definitely had a lot of back and nerve pain, but that also was common in pregnancy. So nobody ever suspected anything more. My daughter was born. And, you know, as soon as she was delivered, I started getting that stiffness, really bad pain in my feet. My back was so achy, I, you know, was having a really hard time sitting down. And I finally said, I need to do something about this. And it did take me some time, took me switching family doctors getting someone who heard me and listened to me, and finally really pushed to see a rheumatologist, which I wasn't taken seriously there either. They told me there was no issue. They saw my spine x-ray, they said that there were some abnormalities, but they didn't feel...