Katy’s Inspirational Progress Against Lifelong RA

We discuss how:
– Katy was diagnosed with JIA at 10 months old
– She has battled with her condition for 26 years
– After starting the Paddison Program she has turned her condition around
– She now needs only a fraction of the drugs she was taking
– She wakes up with no morning stiffness
– Improvements began within 3 days of the Program
– Bikram Yoga is restoring increased functionality to her affected joints
This is a VERY inspiring episode! Enjoy 🙂

Clint: Thanks for joining me on the Paddison podcast. I’ve got the lovely and beautiful Katy with me today. Hello, Katy.

Katy: Hi.

Clint: You know, you’ve become such an inspiration to people inside our community support forum with the amount of progress that you’ve made so far. You’ve had rheumatoid arthritis for a very long time. In fact, you’ve barely known life without it being diagnosed at only 10 months old.

So before we hear your whole story, perhaps give us a little sample of what we might hear in the rest of this episode, just some bullet points of how far you’ve come since you’ve embraced the program and also, made lots of changes with your exercise.

Katy: Well, let’s see. You know, ever since I can remember, I’ve been in pain. It’s all I’ve ever…You know, it’s all I’ve ever known. I’ve been on, you know, medications my whole life, been on different drugs, a wide variety of drugs. My arthritis also caused some eye problems, so I have a disease called Uveitis, which is inflammation of the eyes. And then, that, in turn, caused glaucoma. And then, that, in turn, caused cataracts, which I’ve had to have taken out.

So yeah, a lot of surgeries and stuff at a very young age that I’ve had to deal with, a lot of loneliness. Just feeling like, you know, like no one really understood what I was going through. You know, I mean I know my parents loved me and everything, but they didn’t know exactly. And see, I’m just dealing with all that and I then just…You know, getting into the point in my life where I just felt like there had to be something else. Like there had to be something to help and so I just started going different natural paths and stuff… nothing like that really helped either.

And then just randomly, your site popped up on my Facebook and clicked on it. And then, yeah, then the rest is just, it’s crazy how just that that one little thing just changed…it’s completely changing my whole life and it’s amazing and yeah.

Clint: Cool, cool, all right, we’ll get into more specifics as we go. Let’s talk about your struggle a little more. I mean, at 10 months old, we have a 13-month daughter called Ariel and, you know, she’s just walking into walls and just getting used to walking and things. I mean, at 10-months old, which is, you know, even a few months younger than her you wouldn’t have even known when you sort of were experiencing the initial problems until many years later when you sort of just were finding that you had joint pains and were being told by parents, “Yeah, this has been going on for a period of time.” So you know, what was your first recollection of your body not working the way that it was for other people?

Katy: You know, it’s kind of hard to pinpoint a time. I feel like there’s points in my life where I just completely either blocked it out or I just don’t remember. But there are periods…You know, I remember going to church and having my parents carry me into the church because like, you know, it was just too painful to walk. And you know, and watching all the other kids run around and go outside and play games and stuff and I couldn’t really do that.

And then, just like waking up, you know, like in the middle of the night, my legs would at some point get stuck, bent. And so, I just remember, you know, needing to go to the bathroom and just being like, “Do I just wet the bed or do I actually just like crawl to the bathroom?” You know, it’s just so painful. And you know, and I just remember, you know, crawling into the bathroom and then in the morning I would crawl into the bathtub and sit there for like a whole hour just waiting for my knees to straighten in the hot water. And somehow, I knew that hot water helped and so that’s what I would do every single morning, I’d wake up really early and that’s the first thing that I would do.

Clint: As a parent listening to this, picturing you going through that and imagining what it would be like from both a parental point of view and also imagining it from being you as a child, I mean, it hurts to just listen to, let alone, you know, experience it. It’s just, you know, it’s very uncomfortable to hear about such challenges to children, let alone as adults, as we both know and have been through as adults. The condition is just so excruciatingly bad. And as a child, when you don’t feel you also have the abilities or, you know, resourcefulness to actually work out what’s going on and to try and deal with it, you feel helpless as well.

So look, you know, you have been through terrible stuff. So normally, we would spend more time in this particular part of the conversation, but let’s talk about nicer things. Let’s talk about the new Katy, the Katy that’s leaving behind the pain, leaving behind that difficult part of your childhood. Of course, there’s probably lots of wonderful parts of your childhood, but also, a lot of challenges that no one should have to put up with. So, let’s talk about what you’re doing now, let’s talk about what’s working. And I want you to share some of these things with listeners or people that are watching this.

Katy: Yeah, well, you know, I started your program. I remember being like just lying in bed just crying from going home from work. You know, and just being like, “Okay, you know, I’m gonna watch your video and I’m gonna do it.” So I started it and three days, it was into the third day of your program that I really started to notice huge changes already, and to where my right arm straightened out quite a bit. Which is crazy, it’s never gotten that straight before so…

Clint: Isn’t it absolutely nuts to think that what are you now, or you must… how old are you now?

Katy: Twenty-six.

Clint: All right, so you’re 26 and since the age of 10 months you’ve never taken a period where you haven’t eaten or you haven’t eaten in a way that can give your body a break. I was the same. For me, it was my cherry situation or cherry incident, right? This intervention taking all of the responsibility away from the digestive system and saying, “Hey,” you know, you take a break for a couple days, unbelievable results. So, wow.

Okay, so what a pivotal point. Okay, so then you’ve had these…And I’ve seen the photographs of that and you sent the comparison, and if you don’t mind I wouldn’t mind putting it on the transcription of this on the blog post, the comparison. So your arms started to straighten out after just three days, so you must have been pumped at that point.

Katy: Yeah, yeah, I was like, “Okay, there’s no turning back.” You know, I mean it was hard at first, you know, not being able to eat whatever I wanted and stuff and being at work and watching them eat their desserts and their cakes and I was stuck with my grains and salads and stuff. But you know, as I saw improvements, it just started getting easier and I actually really started to enjoy the foods. Then starting the Bikram yoga was also huge for me.

I didn’t really know what I was getting into at first, but yeah, it’s been crazy. Let’s see, like people have told me that my skin just looks so much healthier and like lighter and just really good and I was like…I mean, more than five people have told me that throughout this program. And I’m just like, “Oh, like I never realized that my skin didn’t look good.”

Clint: Yeah, yeah, you sort of started to think, “Hang on, did I have problems before?”

Katy: Yeah, but you know, I have also noticed before this program, I was all up and down my legs, I would have bruises like constantly, just small ones, big ones, all the time, just bruises. But you know, as soon as I started this program, they went away and really, they have not come back at all, ever. Like I don’t have any bruises anymore.

Clint: Wow, that’s a confidence booster as well, isn’t it?

Katy: Yeah.

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Clint:  All right, then what about medications? Let’s talk about things that you take sort of regularly for low pain. Well, not for low pain, but the sort of over-the-counter stuff or ways that you’ve experimented with reducing pain in that way. And also, the big stuff, the heavy stuff. Whether or not you were put early onto some of the disease modifying drugs and later onto biologics. I mean, what did the medical profession put forward to you over the course of your 26 almost years?

Katy: Yeah, well, when I was first diagnosed, they had me on a whole bunch of stuff. They had me on like Prednisone, aspirin, steroids, Plaquenil. And then, when I turned one, they switched me over just to Methotrexate. And then, so I was on that for the next 11, 10…They started tapering me off of that when I was 10, started switching me slowly over to Enbrel. And the Enbrel is what really helped. I don’t know if the Methotrexate really helped that all that much.

In my earlier years, I was…You know, because I actually used a walker when I was really small. And then at some point was using crutches, you know. So I don’t know if the Methotrexate really helped, but the Enbrel definitely helped my mobility and stuff. So yeah, so I’ve been on Enbrel since I was 10. I’ve been taking the shots and then just recently about four years is when I complained to my doctor about I really needed some pain relief, especially because of my job.

It was my first job, it was just the first couple of years were just horrible, you know, because I wasn’t used to being on my feet eight hours a day. You know, so I would come home from work just limping and crawling to my bed. And it was horrible. So that’s when I went to my doctor. I was like, “I need something.” Like, “Please give me something.” So he put me on Vicodin and, you know, so that’s what I’ve been using so far. And you know, it’s helped to numb it, but I still have the pain, but I just kind of made it so that I was able to do my job and stuff without balling my eyes out.

So I was taking up to four plus pills a day of Vicodin and then on top of that I had to take stool softeners because it constipated me pretty bad. But yeah, but since I’ve been on this program I am down to taking one to two pills a day and then only when I’m at work. Like I don’t have to take it outside of work anymore. So that’s amazing.

Clint: Yeah, that’s awesome.

Katy: And you know, and I’ve been working on the same bottle since March, so that’s like…

You know, because before that I was taking 120 pills a month and so far, I’ve been…This one bottle that I’ve had since March is 120 I have been able to, you know, spend three months on the same bottle and it’s like crazy. You know, normally when people are on that it goes up, it doesn’t go down, you know. But now, it’s going down. So it’s like…

Clint: Yeah, that’s awesome. That’s awesome. And at some point, with the way that you’re going, let’s hope that you won’t need that at all. If you know, your symptoms become so non-existent. Okay, so what I’m picking up is that you went on and just an absolute sort of, you know, a collection of different pharmaceuticals when you were tiny and then after a little while, a few months later, they got your condition somewhat stable, put you on the Methotrexate. You were on that for about 9 years and then at 10 you went across onto the Enbrel and then finally the Enbrel was actually quite successful for you.

But then, you know, if you’re 26 now, when you were 22, the pain was just still too much and you needed to get on the Vicodin. And you’ve been taking that for four years. But now, your lifestyle changes have meant that you only need a fraction, maybe 20% of the amount of Vicodin that you needed prior. Okay, so awesome. Tell us about what you’re doing with Bikram yoga. There’s a lot of excitement in your studio around your progress.

Katy: Yeah, yeah, you know, my teachers are awesome. They’re just so encouraging and they’re just like, “Go, Katy, go.” You know, and yeah, my first day I was like, “Whoa, like I don’t know if I can do this.” And I was like, “You know what, Clint wants me to do this so I’m gonna do it. I’m gonna do it every day and see what happens.”

And you know, the first couple of weeks I was actually in a lot of pain throughout the yoga. Like I was like, “What is he talking about this pain relief? Like this is really painful to me.” It was hard but then you know, after a couple of weeks I started noticing the pain relief just a little bit at a time. And then, just started noticing my ankles loosening up and my toes loosening up, my knees changing and just a lot of tiny little things that I started noticing.

And then after a couple of months, a couple of my teachers suggested that I started using the strap to grab my leg because I couldn’t grab my leg from behind me and so they suggested that I use the strap and so it’s like, “Oh, yeah, maybe, yeah.” Finally, I was just like, “You know what, I’m just gonna,” you know because it was humiliating to me to use the strap because I don’t normally like asking for help. Like I wanna do things on my own and, you know, but I was like, “You know what, I’m just gonna go and do it.”

And you know, when I started out with the yoga, I always was in the back row and slowly I started moving up to middle row and so now I’m up to the front row and I have my little spot that I go to every day.

Clint: That’s awesome. Yeah, yeah, for those people who don’t know Bikram yoga, there is a hierarchy in the position that you stand…So all newcomers get told to stand at the back. Now I would have been at the back for a year, right? So you’re way ahead of where I was. I was at the back for a year and then I did like a year in the middle. You know, I still feel weird standing in the front because when you have had long-term rheumatoid, we do have some parts of our body that don’t work normally, right?

So neither of my elbows can straighten perfectly, okay? So even though, you know, there’s no inflammation, there the damage has been done. And I still am a little self-conscious when I’m doing the postures in the front row and wondering whether or not the teacher is gonna say something. Because with me, it was always, “Clint, straighten your elbows, straighten your elbows.” And inside, you know, “If only they knew,” right? Even conversations with the teachers outside of class, but you get them in the class and they’ve gone back on the Nazi mode, “Straighten your elbows,” and you’re like, “Come on, we spoke about this, I can’t do it right.”

So yeah, okay, well, you’re in the front row, the good for you. This is exciting. And the thing about the front row is that it puts you into like, “I’ve got to set a standard,” kind of mode. And that’s positive pressure. You want that. Once you’re capable of handling that pressure, you want that pressure on you because it drives you a little more and also no one gives a C-R-A-P of what you look like anyway. They’re all in the back struggling themselves. So yeah, that’s the place to be. I’m really happy for you.

Katy: Yeah, yeah, so I mean it’s definitely built on my self-confidence and you know, I’m just accepting this is who I am and you know, I’m gonna do the best that I can. So yeah, so I, you know, I started going in the front and then using the strap and I’m putting my hand out and touching the mirror so that I was able to balance easier. And just a few weeks after using the strap, I actually noticed that my hand was like super close to my ankle in the Standing Bull pose. And I was like, “Oh, that’s really crazy.”

So the second set, I dropped the strap and just reached behind me and just was able to grab it, my foot, and I was just like, “Oh, my gosh.” I turned to Angela, the teacher and I was like, “Angela, like are you looking at me?” And so as soon as that was over I came out and I was like, “Oh, take a picture of me.” And she was so excited for me and it was just so, you know, so nice to just be able to share that with somebody and have that support. And so she took the pictures and I was able to share it on Facebook and stuff.

Clint: Yeah, absolutely.

Katy: Yeah, well, that was like my first big breakthrough, you know. But then, after like a couple of weeks after that, I was able to, when you’re laying down and you’re pushing your spine up…

Clint: Yup, cobra?

Katy: Yeah, I think so, cobra. So before that, I always had my hand like this.

Clint: Twisted under you, yeah. The back of the hand was on the ground rather than the palm.

Katy: Yeah, so that’s how I always did it, but then I was like, “You know what? I’m just gonna see if I can do it like this.” And you know, and now I’m able to do it. You know, it’s not perfect, you know, but I am able to do it and that’s another huge, huge improvement.

Clint: Wow, because these aren’t just improvements in yoga. These are dramatic life improvements for life. So you know, no one else could appreciate unless they’ve been through this sort of level of severity of condition. To be able to put your hands into the correct position when you want them to go there. After having, you know, nearly decades of not being able to do it. It’s absolutely life-changing.

And so, I always say small improvements are massive improvements with rheumatoid because if you’ve made an improvement against a disease that is a continual sort of disease or a degenerative disease, then you’ve reversed the typical trend and most people they’re just doing it through the medication approach and even then, you know, it’s very rare to find a case where they’re medicated to the max and still not having some kind of slow sort of activity going on against them. So to be able to keep your medications at the same level and then to make these improvements, they are massive improvements. So what’s your sort of day-to-day feel like compared to before? Are you now able to have this morning stiffness?

Katy: Oh, yeah. Oh, yeah. Like I stopped having morning stiffness. The third day of the program actually, I woke up and just really able to get out of bed with no problem. You know, it was just crazy. I mean, for 26 years, you know, I’ve woken up stiff in some way. And sort of to wake up and just feel light and no stiffness was just crazy. So yeah, I haven’t had morning stiffness ever since January.

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Clint: That’s remarkable. Okay, so this is all great. So I’ve got about another 20 minutes with you at the most, maybe 15 because I know that our time schedules here are tight. So tell us… Give us…I mean, you have such perspective that a lot of people may not have given the length of the disease and the severity of your condition. What’s maybe a piece of advice or some encouragement for people looking to do any of the things that you’ve done? I mean, whether it be the yoga or the dietary or the stress reduction, I mean put some sort of thoughts behind that.

Katy: I would just say that there’s hope, and to just not give up and that even though, you know, even if you might not seek progress right away, either way, you’re helping your body with this program. Growing up, I always had a positive attitude for… I’m not sure how I had that. I think it’s…But like I remember when I was small, my sister had some friends over and I was watching from the hallway and I was watching one of her friends put her hair up in a ponytail and I remember thinking to myself, I was like, “Man,” you know, “One day, I’m gonna be able to put my hair up in a ponytail.”

And so, I remember working on it every single day, I would work on putting my hands up, you know, to do that and it took me a long time. I don’t remember exactly, but I remember the day I was able to reach back and put it in a ponytail and I was just so excited. And you know, and so I remember actually going up to one of my sisters and being like, “Hey, I can put my hair up.” And I remember her saying that, she was like, “Well, there’s still lumps in your hair though.” And I remember just being like, “Oh.” And like kind of sad, and like, you know.

But then I thought to myself, I was like, “Okay, well, that’s my next step, that’s what I’m gonna do next. I’m gonna work on it until I have no bumps in my hair. And you know, I mean, yeah, it was sad and yeah, I cried a little bit, but I picked myself up and just made it my next goal, you know. And that’s kind of just the way that I’ve always been. It’s just always looking towards the goal, and you know, like it doesn’t matter how I get there, it’s the results that I want, so…

Clint: Totally agree, nothing beats the results, right?

Katy: Yeah.

Clint: I used to work in a fiber optics start-up company way before I got involved with entertainment and before I got sick. And we used to work in the production of fiber Bragg gratings on a nanoscopic scale and they filter light. So we used to use laser beam light to actually create filters for light that go into undersea networks and now the backbone of today’s Internet. So that’s what I used to do before I got involved with other things.

And I was in charge of production, but I had a technical background, research background in these particular fiber Bragg gratings. And I used to get into somewhat reasonable debates with some other members of the staff which was pretty ballsy at my age because I was straight out of university, 23 or 24. And they’re arguing that it doesn’t matter that we don’t quite understand how these things are being made, right? I came up with some additional techniques to refine and improve the productivity in the way that they were made.

But it wasn’t obvious as to why it worked. But I just maintained, it doesn’t work, all that matters is the results. Because we can’t look into an optical fiber at that level, we can’t see nanoscopic. It may never be able to be viewed by the human eye. But we can look at the results and we can run tests and we can say it works. And that’s the bottom line.

And it’s the same with rheumatoid arthritis because we can’t look into ourselves and look at our gut lining and look into the interactions of the gut bacteria with the intestinal wall and with the immune system and look at how all of this is going on. It may never be fully and completely understood. But we don’t need to know. All we need is the results. And so you’re example with your hair and everything, although it’s a childhood and a very sweet example, it’s exactly the same.

So we don’t know sometimes why, but if we get the results and there’s no downside, then we know what to do. So yeah, any other final comments or thoughts? What about what’s next for you? Tell us what your goals are? And I’d like to chat to you again down the track. Tell me what you’d like to achieve say in the next 12 months?

Katy: Well, you know, I’d like to, in the yoga, I really want to work on bending my legs all the way down to where I can sit on my knees because actually, that’s kind of what I’ve been wanting to do my entire life actually, you know. Because I’ve seen kids, you know, always sitting on their knees, playing duck, duck, goose or whatever, and they’re all sitting on their knees and I’m there with both legs out on sideways, you know.

You know, that’s always kind of been in the back of my head, so you know, but now with this yoga it’s like that’s possible, like it’s gonna happen one day. And so yeah, I’m just working on my knees and my ankles and stuff in yoga and then just also working on lowering my Vicodin and hopefully lowering my Enbrel.

You know, there’s actually this past month or so I have kind of forgotten to take my Enbrel every week just because I’m feeling so much better, it’s like, you know, I mean it’s in my fridge, it’s like, okay, and so I’ve been able to space it out to every other week and sometimes I skip it for two weeks, and like I don’t feel any different.

Which is crazy because before this program if I missed a week, I would wake up more stiff and there would be a lot of problems. You know, but now it’s like, yeah, I can space it out every other two weeks or so and not feel it. Yeah, you know, and I see my rheumatologist on Monday, so I’m hoping to share with him my progress and see if we can get some things started.

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Clint: Yeah, and for those people who aren’t familiar with all the intricacies of my recommendations with the biologic drugs we’ve got a couple of variables with regards to lowering. We’ve got the spacing which you’ve talked about just now and we’ve also got the dosages. You know, and there’s a couple of options there with regards to what to work on.

But certainly, that’s a discussion to have with your rheumatologist and get their input and see what they say. Certainly, I would just remind you what you already know, but more for our audience that you wanna be hitting at least two or three consecutive months of ideal or perfect blood results with your C-reactive protein and Sed rate. I think offline you’ve told me that yours have always been quite good and it’s not a particularly good indicator for you, is that correct?

Katy: Well, yeah, since I’ve been on Enbrel, I’m down to normal numbers and I’ve been like that for a few years.

Clint: Okay, well here’s a little tip, what I would suggest is getting to set you back up on monthly blood tests and getting to switch across if you’re not already get on to the high sensitivity C-reactive protein test. Because once you’re in the normal range, which is most countries, zero to five milligram per liter, then you really need to tune up the amount of sensitivity on the test so that small changes can be identified.

So the last blood test I had, you know, I was annoyed because well, I forgot to ask and it was just less than four milligrams per liter and I’m like, “Well, that’s useless. I knew that. I wanted to know whether or not it was below .1, right? You know, so that’s the thing you’ve got to… Yeah, I would get he or she, because you’re about to have this meeting shortly, get he or she to ask for the monthlies and get high sensitivity C-reactive protein, which is actually a different test than the standard CRP so you can’t just use the same test, so it has to be a different test.

So yeah, because I’d really like to see numbers month to month and help give you my thoughts on what I would do if I was to see those numbers and to talk through with you on our online platform. Whether or not, you know, it’s more of a long-term or whether or not it’s something you can look at over the next six months or so. In terms of a small reduction, my guess is it could take a couple years with your solid, determined effort to be able to, you know, make some dramatic reductions on the drug if everything goes perfectly. But certainly, the Vicodin. Let’s hope you can get off that pretty soon.

Katy: Yeah, that would be awesome.

Clint: Okay, so we’re running up to time and I just have a real sort of sensitive and sweet spot for your situation and for you as a person. Because, you know, you mentioned earlier how you’re always being positive and it just comes through in droves in communicating with you face-to-face.

And it’s been really, really a great opportunity to chat with you and to put you in front of a large group of people with this condition because you have been through every adversity, and still as a very young woman, able to laugh and be enthusiastic and communicate about it with, you know, a sort of optimism that isn’t necessarily the case for a lot of people who have had it for less time and also, only as an adult.

So my huge sort of appreciation for everything that you’ve been through and if only it hadn’t have happened where we dealt some cards and we can’t do anything about that but just like you’ve been demonstrating from day one. You know, you set your mind to it and you go and get it done and you don’t question why you just think about what can you do about it. And yeah, you’re inspiring to me and I’m sure everyone watching this is going to be really pleased that they spent the little bit of time that they have with you and I on this call.

Katy: Yeah, and you know, and you’re also one of my top heroes. You know, I talk about you all the time at like my work and everything. And like, so many of my friends know who you are. You’re just so…I mean, you’re so inspiring to me too and one of my top heroes and I just love you.

Clint: Thank you, I love you too. And you know, isn’t it great that something so bad can bring two strangers together to talk about optimism and positivity and life? There is good in everything, you know. There is good in everything. And humility is a wonderful attribute and for me humility had to come about through adversity for a very long period of time because I didn’t have a lot of humility in the past, I didn’t have a lot of empathy in the past for people who had health conditions and for people who, you know, were dealt a poor set of cards and that’s all changed.

Now my life is all about compassion and empathy and humility because with an auto-immune disease whether it be at a 99% level of difficulty or just a 1% difficulty level, there’s always going to be some degree of difficulty for life. And with that comes humility and I think that if we can embrace that positive aspect of having the condition it helps handle all of the negative aspects of the condition of which we know there are many.

Katy: Yeah.

Clint: So let’s keep doing what we’re doing, let’s keep smiling and keep making quality plans and taking massive action towards improving our condition because we can defy the odds.

Katy: Yeah, exactly.

Clint: In fact, big cut off and thank you so much for coming on this episode and I’m gonna let you get back to your day and I look forward to talking to you online.

Katy: All right, thank you.

Clint Paddison

Clint Paddison has recovered from crippling Rheumatoid Arthitis and now assists others with this disease via the Paddison Program for Rheumatoid Arthritis, the Paddison Podcast and the blogs on www.paddisonprogram.com