Episode 049: Jes Hojsan - Spondy, Young Mother, Women's Issues

Released Sunday, 10th May 2020
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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 it was rheumatology related. So I needed to, you know, go somewhere else. And that's when I really pushed for an MRI, which did diagnose me with AS.

Jayson Sacco,
So, it really is the case for you and that we hear a lot about women taking longer to diagnose. And you really are probably anywhere from 15 to 18 years that you were dealing with the onset of Ankylosing Spondylitis before somebody would even consider looking at you.

Jes Hojsan,
Yeah. 100%!

Jayson Sacco,
And then another several years on top of that for actual for actual diagnosis.

Jes Hojsan,
Yeah. And, I mean, when you when you lay it out like that, and you look at it, it's really frustrating. I mean, I could still potentially not have had a diagnosis if I didn't push a little bit harder. And, you know, even even now, I do have a diagnosis of AS, but every pain that I feel and any symptom that comes up I'm not so quick to just blame on as you really need to look at a picture and kind of dissect you a little bit more sure some people may experience, you know, morning stiffness after pregnancy. Sure, it could be lifestyle changes. But, you know, we have to be so quick to not just blame everything on what we think things are. And I like to be very critical of, you know, of new symptoms that come up with me and really dig in to make sure, yes, I have a diagnosis. But that doesn't mean there's there could potentially not be another issue going on. And we see that's pretty common with people who have autoimmune diseases that it's not generally just one or sometimes two is multiple diseases that people hold. And same with, you know, being a woman and pregnancy. Yes, aches and pains come from pregnancy, but we shouldn't just just start it at that. I think you should really dig a little bit deeper.

Jayson Sacco,
Yes, you said you had the MRI done. Yeah. And so did they diagnose you was a non-radiographic axial spandrel arthritis it was was there less damage visible?

Jes Hojsan,
There is see I it's difficult to answer this for you because the rheumatologist I have right now I have not had a good relationship thus far especially with, you know being so dismissed In the beginning I have very limited resources from her and information. What I do know is that on the x-ray, it did show that there were some abnormalities that that requested an MRI for further investigation so something did show up on that x-ray. And then as for my you know, my actual diagnosis, it was a quick five minute phone call that said you have a yes I want to start you on consented. Here you go. I'm going a little bit more of a rural area here in petawawa. So any rheumatologist or specialist is about a two-hour drive from us. So I was fortunate that she was able to give me that information over the phone but I mean I'm in the middle of looking for a new rheumatologist. Let's just say that. 

Jayson Sacco,
So do you head to? I think your closest city is one Ottawa. 

Jes Hojsan,
Yeah, that's right. 

Jayson Sacco,
So you have to either head to Ottawa, Toronto. With obviously both of those being much more major metropolitan area. So a much wider range of availability of medical options.

Jes Hojsan,
Yeah, here pretty much we have a hospital if you fall and break your leg, things like that. But, you know, any major complications? Yeah, we're traveling two hours to Ottawa to get any kind of help. 

Jayson Sacco,
Now, you're you're actually a military spouse. Your husband is in the Canadian military, which means by default, you're in the Canadian military as well.

Jes Hojsan,
Yes. 

Jayson Sacco,
And so in America, we have the VA system, which is the healthcare system for veterans. Does Canada have the same type of system? Are they mainline you in with just the national health care?

Jes Hojsan,
So for my husband, he goes through Yeah, he goes through the system, the military system here. But spouses and children we just go through like the main health care system here. There's definitely treatment for for my husband, they take care of all of that all of his medications, things like that. But for spouses, yeah, I'm just in with a bunch of civilians.

Jayson Sacco,
Okay, so you do have some flexibility where you can go, it's just yeah, it's just the distance you have to go.

Jes Hojsan,
Yeah, that's right. 

Jayson Sacco,
I can certainly understand that. I'm in a small area. I do have one rheumatologist within 50 miles of where I live. Otherwise, you've got to go another 50 miles past that to get any large volume of rheumatologists. 
So, when you were pregnant, the two pregnancies, you said you notice the aches and pains but again, coming from this as a man, I watched my ex wife with her pregnancies and my back hurt my arms hurt my whatever because of the baby. And that was understandable. But was it See some people talk about a I went into a remission during pregnancy? Did you notice a lessening of overall pain and stiffness or were you feeling actually worse?

Jes Hojsan,
So the pain stiffness or sorry, the stiffness wasn't so bad during pregnancy Of course, it was a little bit harder to move around because you're pregnant. But I definitely noticed things like I'm not exactly sure what they call it but pretty much like where your si joints are a major pain there. I sometimes I couldn't put on my own pants. You know, I would get a almost like a clicking noise from my from my hips. When I was walking. I had really severe rib pain. And, you know, everyone just tells you, oh, the baby's too big. You know, there's no room in there and, and things like that. But in reality now with the knowledge I have looking back, I'm just seeing that I was definitely having a flare up in places that I hadn't had them before. Because it was more than just an ache and pain and That's something that, you know, for women's health, we're just told, we definitely need to just suck it up. It's not that bad. All women experienced pain around, you know, women issues. And in reality, I had something really sinister going on that, you know, I wasn't getting help for with my second pregnancy. It's definitely I was achy, I had some pains, I don't feel it was any worse or any better. But after both pregnancies is really when things started to affect my daily life. And I had spoken to a natural path doctor, right before we went into this pandemic, and, you know, looking for some additional help with my issues. And what she explained to me is that in late stages of pregnancy, I believe it's the progesterone goes up really high to you know, put your immune system into overdrive to make sure the baby's not going to get sick that you're not going to get sick. And then once you deliver and those hormones drop again, your immune system is a little bit more susceptible. So generally, that's when, even if you've never had any symptoms or signs of an autoimmune disease, that's when they can kind of rear their head and make themselves a little bit more known. So the times that I was explaining to this natural path, she was saying, this makes perfect sense. This is why, and I really felt validated with that, knowing that it wasn't because I was carrying a newborn baby around that I was feeling this pain. It's because I had an autoimmune disease

Jayson Sacco,
On top of carrying a baby or babies around,

Jes Hojsan,
Right, exactly. 

Jayson Sacco,
Now, as a man, I know that at one point my fatigue was, just let me take a step back. When I had young kids, young kids are just, I always say they're little life-sucking vampires. They're great, but they will take every bit of energy you have. So that's why you have them when you're young. 

Jes Hojsan,
Right!

Jayson Sacco,
When you put Ankylosing Spondylitis or the idea of Ankylosing Spondylitis on top of that, how have you dealt with the fatigue? Have you noticed a huge increase beyond what you think should be normal? Or is it really even hard to tell what a normal is

Jes Hojsan,
Definitely a huge increase, especially now that, you know, there's two of them and they're both walking, they're both talking. There are a lot more work than when they were babies. And I've definitely noticed the fatigue when, when I'm not feeling the effects of the incentives working is just, it's beyond what any normal person should feel, you know, my brain goes to mush, like, two, three o'clock in the afternoon. I'm just; I'm like a zombie. And it's, it's more than just being even fatigued. It's the mental fatigue, if that makes sense to you, like I can't, I almost feel like dumb I can't think I can't cross us. You know, I just, I need to just go and lay down and you know, I really found that taking that break, when my husband gets home or right now whenever I need to, because he's, he's home with us, and giving myself like an hour or two to sort of recoup, I can kind of get enough energy to get up and do what I need to do again. So definitely the fatigue is, I can feel it mentally, and physically more than just, you know, oh, I had a really long day and I feel tired. It's, I always tell my husband, it feels literally as if someone stuck a vacuum into my leg and sucked out every ounce of energy and life that I have. And, you know, that's on a day that I'm just puttering around the house taking care of the kids. Sure, it's a lot of work. But you know, it's not anything that a normal 30 year old, shouldn't be able to do. So that's kind of when I started noticing the difference that I have. I don't have a choice. I need to lie down, that that's when you know it. Something's going on here.

Jayson Sacco,
We'll have they looked for any other hormonal imbalances that may be off due to Ankylosing Spondylitis or the pregnancies?

Jes Hojsan,
So that's definitely what I'm looking into right now with the natural path that I'm not sure what it's like anywhere else, but I know here, it's really difficult actually to get your hormones tested and to go about that type of thing unless you're, you know, seeking to become pregnant, which I've had a hysterectomy, so that's not my case. So that's where I sort of turned to the natural path to look into hormone imbalances and to see what's going on there because I am having some reactions at certain times of my cycle. Not to be too TMI, but I do have my ovaries left from the hysterectomy. So I still have normal cycles and hormones that are present. And I'm definitely having things like skin rashes and pretty big mood changes and things like that. So that's another road that I'm definitely investigating. Fibromyalgia is another one that, you know, I feel a very mixed things about. It's one of those things that it's a blanket statement if you don't have a diagnosis, but when I do have a diagnosis, it's difficult. So we don't have access to our doctors right now. So when things calm down, that that's what I was sort of in the midst of getting diagnosed with. I do also have endometriosis, which is, again, another controversial thing, whether that's an autoimmune disease, and that's definitely the cause of why I have my hysterectomy. And I know people just diagnosed with that alone do suffer a lot of fatigue and things like that as well.

Jayson Sacco,
Interesting, because you mentioned earlier you had some nerve issues, which can be a pointer towards fibro I believe?

Jes Hojsan,
Yeah, definitely. Definitely in the ribs, defeat the hands. You know, there are definitely things that are going on that feel more than just the inflammation bothering me. So learned as I've been going that, you know, no one's on your side really, you really have to fight for diagnosis, you really have to fight for your own health. I know in my case, I had just been so dismissed, you know, almost by every doctor I have a really great family doctor right now who listens to me and is working with me. But that hasn't been the case up until now. So I'm hoping that we can get everything figured out and and like I said before, I don't want to just say I have AS everything that is wrong with me is because of as or the endometriosis. There's potential that there could be something else going on. And you know, I think it's just in best practice that those things are ruled out before we can, you know, resort back to it just being AS.

Jayson Sacco,
Oh yeah, you've got to be able to, you've got to be able to eliminate everything else to then write down and say that it's definitely or most likely part of a Yes, exactly. Know when you had both of your when you had both of your deliveries. They were both done by C-section. Were you given epidurals?

Jes Hojsan,
Yes. So I had already had a, what do you call it? Yeah, I had epidural for both of them. And they just, you know, streamlined however they do it when you go into to completely numb you for the C-sections. 

Jayson Sacco,
The reason I ask is I didn't know if that might have caused some of that nerve issues that you originally were discussing, and the doctors dismissed that as just having to heal up from the epidural. 

Jes Hojsan,
And that's something that is I haven't gotten direct answers for many doctors about it. I definitely feel like it was it was something that aggravated things a little bit anyways, with my son, I actually had to have the epidural done two times. I'm not quite sure what happened but it fell out the first time stopped working so they needed to actually go back in and completely do another one. And then within 17 months, I was having another one put in for my second delivery. So with that, you know tight three epidurals is a lot for you know, even a healthy back to take. So that's definitely something that considered as well,

Jayson Sacco,
it certainly won't help.

Jes Hojsan,
No.

Jayson Sacco,
It's certainly not going to help. I had an epidural when I had (for nerve block) when I had my first hip replacement done. I know what it's like to come out of that. And by the time I had my next hip replacement done, they did it again. By the time I had my third one done, there was too much bone overgrowth it infused too much right. So they had to go a different route for the third and fourth one, I can certainly see we're getting those done in the determine the way you did could possibly cause some nerve issues because they're compressing it to numb you and could lead to misdiagnosis of how you're feeling as well.

Jes Hojsan,
Completely and, and this is something that you know, I I love the idea that we have these medicines, I love that we, you know, are able to give people the choice to have, you know, a birth with less pain or a natural birth however people want to do it. I wasn't asked any questions. I wasn't Definitely asked, you know, the big questions, you know, if I had any spine injuries or things like that, but I was never asked if I had any conditions or things like that. And you know, either way, it technically doesn't matter because I had to emergency c sections but maybe if I was presented this and told the risks or told the potential issues that could happen, you know, maybe with my first I would have...

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