May 10, 2020

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

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 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 pushed a...


Transcript

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 pushed a little bit longer without having the epidural and trying to save my back but you don't know and, and kind of it comes back to not that we don't care about women's health, but it's just seen as this is just what you do. You have a baby, you're in pain or you're not in pain, you know, you take it or you leave it, it's the pregnancy, of course it causes the pain. There's no other reasoning outside of that.

 

Jayson Sacco,

And with all this now, you're obviously relatively newly diagnosed, not new to the pain and the symptoms. When you had your MRI done. And you said they said there's some issues in there did, they give you a full rundown was it we see issues with your si joints or we see issues in your spine? Or did they just kind of leave you real still kind of hanging.

 

Jes Hajsan,

So actually, when I went in for my MRI, the rheumatologist, they had only requested for my lower lumbar spine to be scanned. So that's all that I have the document for. And when I went to meet with my family doctor, I actually requested to have the report a copy of the report. And this is something that I've continued to do so forth. And I think that, you know, chronic disease or not everybody should be doing this, it's really important that we understand the things that are going on with our body and our health. So I actually do have the report, and it was my si joints. There were a lot of big words in it in terminology that I had to Google and look up, but definitely there was inflammation on both si joints. There might have been a few other things as well, but it seemed to be a little bit more minor and actually Right before we went into this quarantine, I did have I did request from my rheumatologist to do a full MRI of my back so we could have an idea of what I was looking at. I am having a lot of centralized pain in my upper back. And I just want to have that documented for you know, the future if things were to progress, we can kind of keep track a little bit better. I don't know if I'm, you know, overstepping my boundary with a doctor by requesting that but to me, it just feels that's something that should should be in place from the get go because this is a serious disease. I get the sense when I speak to my rheumatologist that, you know, I have a sprained ankle or a broken foot or something like that. It doesn't seem to be very serious to her but I know how it affects my day to day life and that these are precautions that I need to have so I can feel at peace with it, especially as they age.

 

Jayson Sacco,

It's unfortunate when I was diagnosed; it was long time ago, 1984. And at that point, my doctor had said to me, “oh, yeah, women get it on occasion, but it's not very severe when they get it”. And you know, but primarily, that's a disease you'll see in men.

 

Jes Hojsan,

Right!

 

 

Jayson Sacco,

He didn't discount that women don't get it. He just said they don't see it very often. Fast forward 35-40 years, we know that's not the case. And we know that if it's not on parity, which it most likely is just due to under diagnosis, it doesn't show that way. Those numbers are changing dramatically, and you're seeing more and more women become not only diagnosed, but becoming better advocates for themselves because they know the right questions to ask.

 

Jes Hojsan,

Right! Absolutely and, and I think it's women. I mean this is a whole societal thing. And again, you know, it's you don't want to discount that everyone's doing this and everyone's treating women this way, but you take a look at it, and I mean, I just had a call a few days ago with my rheumatologist who else is also a woman. But I know for me, this is something you know, with all this quarantine, I've had a lot of time to read self-help books and kind of dig a little bit deeper into this kind of stuff. And you really see that there's a people pleasing quality that a lot of women have not all, but a lot of women do have that they don't want to insult the doctor or they don't want to be difficult, or they don't want to I know, you know, sometimes people can joke around and say, Oh, you're just a hypochondriac and things like that. And those are things that you're kind of fearful of. And, and so you don't want to make too many big waves. And you don't want to ask the really difficult questions, even though it's our bodies and we're being so affected by it every day. So, you know, a part of that is definitely me learning that. I apologize if I'm being a difficult patient. I apologize if I'm asking you a lot of questions. I apologize if I overstep my boundaries as a patient, but I need to know these questions. I need to get the information from my doctor which is you know, a reliable source and I need to educate myself on this because I will have this body forever and I need to make sure that everything that needs to be done and everything that needs to be treated is happening. And you know, I really think we're going to with more women speaking out and more younger people even at that speaking out about things like arthritis and invisible illnesses, we're really going to see maybe those numbers even increase a little bit more or or level out and kind of dispelled that, you know, is more prominent in men.

 

Jayson Sacco,

Right and one thing in this creaky joints article that I'll have a link to in the show notes, it mentions that women can tend to have more gastrointestinal issues have Have you noticed that or have you noticed that you had it but it went away with pregnancy or it got worse after pregnancy or, or anything of that nature?

 

Jes Hojsan,

See, this is one thing that you know, every doctor's appointment, I really struggled with this because no issues with with digestion. I did have a really big issue with bloating and we I just, you know, a decade had went by and we haven't been able to figure out what it was and actually at the end of the day, you know, we kind of figured that it was the birth control that I was on that the extra hormones were doing it but other than that, there's there was no issues with my digestion whatsoever and that that tends to really be the first question that most doctors are asking. I had a colonoscopy in March right before we went into lockdown just to rule out any issues and you know, that was perfectly fine and you know when when you get into these situations where you don't have these like really big alarming things that you can kind of really document and you just have the pain in your body your feeling I say not even harder but for me No I haven't had any issues with digestion or you know, bowels or anything like that.

 

Jayson Sacco,

Which is really good.

 

Jes Hojsan,

Yeah.

 

Jayson Sacco,

Key takeaway is all women really need to know, and not just women, but everybody, but in this case, since we're talking with you really need to focus on being your best advocate that you can be, I don't know if there's anything that you could ever overstep your boundaries related to your health to talk to your doctor about I really think that everything should be available and on the table.

 

Jes Hojsan,

100% and I know that from my local hospital doesn't have it, but the hospital that I had my daughter out and that I've seen, I've been seeing that most frequently. They do have a database online where you have access to all of your records. I think that's becoming a little bit more prominent with with a lot of hospitals and doctors. And you know, my family doctor here does not have that yet, but there's no reason that you can't say can I please have a copy of that report? Can I please have a copy of that referral? I you know, I want to know who I'm being referred to. I want to see exactly what you know was written in my report. It's there's been a really big divide I feel with the medical system and you know, patients but their doctors They know what they're doing. Don't ever Google anything, you know, they know best. And in reality, they know a lot. They're very educated; they dedicate their lives to helping people. And I'm very thankful for that. But at the same time, we know our bodies best we experience things. I think you might have mentioned it on on one of the podcasts that I think it was the one about the the app that came out, that when you go into your doctor or your doctor calls you and speaks to you, if you are having a good day, it's very difficult to remember how crappy the last week and a half was and how you struggled because for me, I sort of disassociate when that's happening, and I kind of am out of it. And I know I'm in a lot of pain, but if I'm having a good day, the next day, now I'm focusing on catching up on all the things that I wanted to do the things I needed to do, and you know, just enjoying that pain free day or less pain day. And, you know, it's very difficult when we go into these doctors for them to get a full picture of us. You know, it We're we're only discussing, you know, our good day or mediocre day. So really, we do have to advocate for ourselves. And we do need to, you know, have all that information so we can can make the decisions that we need to do also.

 

Jayson Sacco,

Yeah, my doctor has a sheet that they give you before you go back to see her and it says, How have you felt over the last week? It's like, right, well, wait a minute, the last week, who the hell cares about the last week? I haven't seen you in six months. What about the other, you know, five months, three, three weeks that go along with it? I, you know, I felt like heck, two months ago, and now I feel this way. And so I really that's where I think that app was so important to allow you to generate a report to say, here's how I you know, I don't really care about how I felt over the last week. Here's how I felt over the last six months since I've seen you or three months or a year, whatever it's been.

 

Jes Hosjan,

Exactly because those are the you know, you would never just do it. A you know, if you're studying something you wouldn't just do a study of one day of one person know you want The whole picture you want, you know, three, six a year worth of data to really make a proper assessment. It's the same with our doctor's visits, you don't want to go in and say, Oh, I'm feeling good today. Perfect. There's nothing wrong with you. We'll see you in six months, because the next day you could have the flare of your life. And it's not accurate to say how you're feeling today or this week, or even in one month, you do need to see how it ebbs and flows over you know your life because it affects it.

 

 

Jayson Sacco,

Sure and got me thinking here again, because this is not something I can relate to. You mentioned flares. Did you notice that there was any time that you were you getting flares? Because I thought I saw where I read online where women were talking about flares coinciding with their with their cycles. Did you ever notice that or did it get better or worse, or have no bearing whatsoever?

 

Jes Hojsan,

So for me, it's a little bit difficult because up until my hysterectomy, I was on a continuous birth control. So technically, my population was suppressed so I wasn't have having a fluctuation of hormones and then I remained on that for about a month or two after my hysterectomy. So right now, it's difficult for me without having a period to really track where I'm at in my cycle. That's something that's a natural path is helping me with interesting. So there's definitely been times where I think definitely when I'm not quite what a period should be, but coming up to that point, things are everywhere, you know, things are not feeling, right. But it's hard to pinpoint if it's the AS or if it's PMS, or you know, just those fluctuations, but I definitely think if I was to, you know, really track and pay attention, I definitely think that the hormones have a big impact, because I know specifically before it was on the birth control, you know, I would get every 24th day of my cycle, I would get this, you know, rash all over my eye and all over my face, and then it would clear up within you know, a few days and it would happen every So I definitely think that that was some type of autoimmune thing. And I really think that as probably played a part into the pain as well.

 

Jayson Sacco,

Wow, that's really interesting. I'll tell you what, just this has been so informative. And I'm not even sure whether we've even scratched the tip of what we could talk about. Because it's so there's, there's so many layers and depth that I'm sure a woman could ask you questions that I'm just I'm missing, I'm not knowing what to ask. And so I really appreciate the time that you put into this. Now, if anybody ever wanted to reach out to you, are you on Instagram are you on? Are you on Facebook?

 

Jes Hosjan,

Yes, I am on both. I do have a private Facebook page. It's just my name Jes Hosjan, and I'm on Instagram as well where it's it's an open account and I I do really dig into some deeper stuff on there. Not always I'm not a dedicated you know, blogger or anything like that. But I definitely like to speak openly about you know, My, my hysterectomies, my pregnancy, things like that. Because I think it's really important. I know me going through all of these things, I have had a difficult time finding someone to be so open and honest, especially someone who's younger, I really appreciate all the work that you put in. But, I mean, we're at two different stages of life and it's difficult to relate. And sometimes you find the most connection when you can see yourself in someone else. So I'm trying to be that for anyone who needs it. It's difficult to have any chronic illness as a young person, let alone a young mom, and I just, I want to help in any way that I can.

 

Jayson Sacco,

Well, fantastic. Well, I actually just found you on Instagram at a john hurt so I will have a link to that in the show notes for anybody that wants to touch base with you on Instagram as well. And there's a very active Ankylosing Spondylitis slash spoony slash chronic pain slash whatever, a group of folks on Instagram so that's really a great spot. You've had the The lower lumbar area done for your MRIs, we're looking, hopefully once this whole pandemic thing clears up the ability for you to get in there and get more testing done. So I wish you luck on that.

 

Jes Hojsan,

Thank you very much. I'm very claustrophobic something that kind of started in the last couple of years. I've noticed it mainly if I'm sitting in the backseat of a car, so I'm very nervous for a full spine MRI, so I appreciate the luck.

 

Jayson Sacco,

Have them do an open MRI on you. I had that done.

 

 

Jes Hojsan,

Okay, that's what I need to do, because it just freaks me out.

 

Jayson Sacco,

You may have to travel a little ways you might have right in Toronto to have it done or Ottawa, because even here in the States open MRI machines aren't, aren't just everywhere. Right after my last hip replacement, I can't lay my left leg down straight. And so I could fit in an MRI machine, right? The leg wouldn't go flat. So they had to reschedule and send me to an open MRI and I'll tell you what, that's that's night and day.

 

Jes Hojsan,

Okay, that's really good. Because when I did my, just my lower spine I was able to have my head out just enough that if I you know looked kind of back I could see the ceiling I was sort of out of it and that was even cutting it but it was better than being completely in it and I just I can feel the panic already.

 

 

 

Jayson Sacco,

These open MRIs are no big deal at all. So I think you find yourself one of those. Like I said, He's you're probably going to have to go to Ottawa or even Toronto, but trust me for that. It's worth the drive.

 

Jes Hojsan,

Okay, see spondy’s sharing, sharing their lived and learned advice. I love it!

 

Jayson Sacco,

That's probably one of the best things I can share with you. Well Jes, this has been awesome. I really appreciate you sharing your experiences from the pregnancies to the hysterectomy. Those are that's a lot of you know that in of itself by age 30s major on the body, but when you stack it on top of an Ankylosing Spondylitis, that's a lot.

 

Jes Hojsan,

It really, really is and, you know, there's days that I feel that it's a lot physically and mentally and you know, there's days that I I forget that I have these things and I don't remember until I you know, it's five o'clock in the evening and I'm laying on my hot pack with you know painkillers but in all of it, I do it for my kids and I keep pushing for my kids and you know, I think that's it both it's a double edged sword right like you have all this pain so it's hard to be with your kids but you push through the pain to show them the lessons and and and I think that's really beautiful. And again, thank you so much, Jayson, for for this opportunity and for sharing, you know all of your pain and experiences so other people can maybe avoid it.

 

Jayson Sacco,

Well thats what I hope is that if you take nothing away, being diagnosed with Ankylosing Spondylitis is never great. But there's never a better time than now to be diagnosed with the options available compared to what many of us went through that were diagnosed in the 60s 70s and 80s. When there was no option but here's a couple aspirin. Good luck.

 

Jes Hojsan,

Exactly. And that was a question I had for my rheumatologist. Yesterday I said, you know, what do I, what should I be planning for or looking for for the next 10-15 years? Or my body? And, you know, she said to me every day, we're just creating more and better medications. So we have really great stuff right now like a Centex, but you know, maybe 10-15 years, they'll have a cure, who knows? So that's, that's a really, I'm trying to focus on that, that you know, maybe one day there will be a cure or maybe there one day will be a way to live completely pain free. We're only ever just growing and advancing with technology and medicine. So I think you're right, it's nobody wants to be diagnosed. But this is the time if we are we do have, you know, many treatments available and, and many resources like this podcast available. So that's great.

 

Jayson Sacco,

Its been my pleasure to talk with you. I hope folks find this of interest. I hope they reach out and touch base with you because I think it's really important. It's always good to relate, but as a 50 year old man, and a 30 year old woman we can talk about AS, but it's really good if there's other 25 to 35 year old women and you guys can all touch base and talk and, and kind of share some of the similar experiences that I do with men that are 50 and 60 years old that I've as it helps to really even bond you that much better. So I hope people reach out to you and find this helpful. And I really, thank you so much for your time.

 

Jes Hojsan,

Thank you, Jayson. I really appreciate it.

 

Jayson Sacco,

You have a wonderful day and everybody thank you so much for listening.

 

Jes Hojsan,

Okay, thank you.

 

Jayson Sacco,

Bye.

 

Jes Hojsan,

Bye.

 

Jes Hojsan on Instagram at @craayjayy

https://creakyjoints.org/education/ankylosing-spondylitis-in-women/

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