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Cary King: His Ankylosing Spondylitis Journey
Episode 6927th September 2020 • The Axial Spondyloarthritis Podcast • Jayson Sacco
00:00:00 00:36:03

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Jayson:

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm really excited because part of what I want to do with this show is bring people's stories to all of you listeners. And I do that by interviewing people that have Ankylosing Spondylitis or non radiographic. And today, I've got a really great guest. I've got Cary King on and Cary has been dealing with Ankylosing Spondylitis. Oh, geez, most of his life and was diagnosed about 12 years or so ago in his late 40s. And has had a interesting journey that I thought was really great to share with everybody. And with that said, Cary, how are you doing today? 


Cary:

I'm doing fine. How are you today, Jayson?


Jayson:

Great, I really appreciate the time to come on and talk with all the listeners to share your story about your journey with Ankylosing Spondylitis. What I'd like you to do is kind of take us back to what it was like for you before the diagnosis, what led you up to finally getting that diagnosis? 


Cary:

Sure. I actually started on NSAIDs when I was in my teens, when they came out with them, actually, before that I was on Feldene and to cope with arthritic pain, and they could not figure out why I had arthritic pain at that age. So I lived on NSAIDs all the way up till I was about 46 years old and at that point, they took me off the NSAIDs because I had been diagnosed with kidney failure due to some nerve damage from my spine and that's when I got the diagnosis, too. But I had ankylosing spondylitis, and what caused us to become aware of that is once they took me off of it and said two weeks later, I had reached two feet to get a telephone while I was standing and the phone was ringing and I ended up on the floor for three hours and then the bed for three days until I went to the neurological surgeon in Nashville, Tennessee at the time, I was living in Owensboro, Kentucky, and then a man, he diagnosed me with ankylosing spondylitis and said that if he touched me in any way with surgery, I would really have a paralyzed and he started me in the process of going to pain management doctors, because they had different ways to be able to treat it to keep you comfortable and have a good life. But one of the things that I've learned from that journey is you've got to find out why pain management doctor that knows how to do the injections and put the needles, back spots where they move to put the steroids so that you can live a comfortable life. 


Jayson:

You and I talked a little bit before we recorded many people that are diagnosed with either non radiographic or as you were Ankylosing Spondylitis will take a biologic, but you were not able to do that tell a little bit about what happened there. 


Cary:

Now Actually, I never was allowed to do biologics because kidney failure prevents you from doing biologics. So I've had to cope around it without any form of biologics, which I have always wished I could, I understand you can get a lot of relief from them. 


Jayson:

Again, this is what makes this disease so difficult is that all of us deal with these symptoms completely different, and what affects one person, another person may have no issues with at all and that from a patient standpoint, it's very frustrating. 


Cary:

It is and the other frustration with ankylosing spondylitis is there's nobody has ever put together a real comprehensive list of all of the peripheral illnesses that you have to deal with sometimes with this disease. And so you go through the process of living with this disease, and every time you turn around, they're giving you a new diagnosis of something else. It's a problem.




Jayson:

Well, and you know, I'm not really sure if I think we keep discovering new peripheral issues that this disease kicks out. When I was diagnosed, it was 1984 a completely different time. What I was told initially about Ankylosing Spondylitis and its not the doctors fault is what he was taught, has now changed dramatically and there's so many new pieces to learn about whether it be nerve issues, eye issues, you know, organ issues, they all come into play and with my last episode, the one I did right before you Cary, if you take Ankylosing Spondylitis on a spectrum, and also the non radiographic spectrum of disease, they're probably one long you know, continuum of the disease and using the term axial spondyloarthritis going forward is probably the more appropriate term.  You and I may have at one point, had lesser issues when we would be diagnosed as non radiographic and its progressed to a point where you and I, as patients with Ankylosing Spondylitis are dealing with a whole different set of issues. When you add in that fusing, so it's really an amazing disease and an amazing time to be learning about this. Now with that, you've been dealing with this now for over a decade, when you first got the diagnosis for Ankylosing Spondylitis, you had your kidney issues, it sounds like that prevented certain medications. You deal heavily with a pain management doctor, I don't. So all the things you talk about are new to me. Tell us a little bit about what happens when you go to a pain management Doctor, what do what do they help you with? And how do they work with you to control it?



Cary:

Well, they can control it through series of medications that they can give you injectables like steroid injections to places where, for example, the buildup is so bad that it is putting pressure on your nerves, si joints etc. In fact, my SI joint is nearly gone, it's deteriorated so bad at this point, you also deal with what they called I think it's called radial nerve burning, where they burn the nerves off of the fork on the back of your spine. And that controls a lot of the pain. If they know how to do it and the tool was the right place. The injectables are the exact same way, if you've got a doctor that doesn't know exactly where to put that needle, you're not going to get a good benefit from it. So I've actually been through four main pain management doctors until I found one that works right for me, that was my struggle for five years, they had been so heavily on narcotics that I couldn't even function. And that's part of the reason why I ended up having to be retired from work, because I couldn't even figure out how to pick up the telephone. They have me so doped up. And when I came to this doctor that I'm going to now who has become my living hero, the first thing he asked me was what are you seeking to accomplish out of working with me and I said, how ever you can manage this pain and get me off of all of these narcotics because I don't have a life and I want to live. I haven't slept in five years and I want to be able to sleep. It didn't take him long and he helped me work to get off of those narcotics and for the most part, I had gone from taking morphine and dilaudid on a 12 hour cycles and hydrocodone the maximum doses every four hours and heavy muscle relaxers like Soma compound 350 milligrams, they had me on Ambien, and they have me on buprenorphine pain patch which is a seven day delivery systems where you have to wear a patch for seven days and change it every seven days. In any event that was creating a situation where I couldn't even have a daily life if you will, was not living out put it through that way. And this doctor has actually gotten me downs where I take 50 milligrams of Tramadol at bedtime. Most days that's all I take at bedtime I'm still gonna be buprenorphine patch and aside from that he took me off the heavy muscle relaxer and put me on a mild dose of calcium and been six milligram does that help my back muscles relax during the night so that I have a better day the next day. And by having gotten me off of all of that I think that's created the situation we're actually somewhere between seven and eight hours overnight.


Jayson:

Oh nice!


Cary:

Actually the only real problem with that is the past late to sound I don't move that it takes me a while to get out of the bed in the morning. But I found the motion flat. I found the motion platform helps me to get set up in the bay. And once I'm there I can get out of the day. 



Jayson:

Yes, it's always something with as if you went on one side, you're gonna pay for it a little bit on the other side. You just got to figure out if it's worth it or not. 


Cary:

Yes, if somebody out there knows a good bit let me know because I've actually spent $7,000 on beds over the last six years and there's not one I've come across yet that is very accommodating to this and I'm not sure that there is one but it's such a weird thing with mattresses. 


Jayson:

I ended up, everybody kept saying you need a foam, you need a foam you need a foam. So my parents had a couple of those various foam mattresses, you know the memory foam in their house. So I went over and slept on one just to see if I'd like it or not and it was okay but the way my back is I'm a side sleeper most of the time and what I found made the difference. I ended up buying an okay mattress it's not a memory foam. It's more of what they would call a pillow top type mattress. And it's worked out fantastic for me, but I also bought one of those adjustable bed frames and I use that on occasion. There's a setting on that called zero gravity. 


Cary:

Yes, sir. 


Jayson:

That helps a little bit. None of it is great. But it helps a little bit. Yeah, I'm with Yeah, that mattress is a really strange thing. 


Cary:

I'll tell you the best that I ever found to sleep on is a latex cord mattress if you're not allergic to latex. The only problem comes with that in my situation is I live alone and I can't lift the mattress to change the sheets. So its actually become my guest bedroom bed. 


Jayson:

Yeah, I can imagine if that's kind of latex core, that buggered be heavy.



Cary:

It weighs a ton. It takes three people to move it. So what I ended up what I've got now is a memory foam Serta, it's called Serta iComfort. 


Jayson:

Okay, 


Cary:

and that's what I'm using and it's a good mattress. But the problem is the memory foam mattresses, you tend to sink down into them, and you get in this hole and then you can't turn it over. If you're you know restricted on your movement like I am, you can't, you find you can't turn over. And that's what my “can’t understand”. 


Jayson:

I don't know, whose makes the mattress that my parents have. It was comfortable, it wasn't that I disliked it. And I only slept on it for one night. So it's kind of hard to make a valuation after only one night. 


Cary:

Yeah, 


Jayson:

but it wasn't bad. It wasn't great, either. It was just okay. You know, it's, it was just a mattress. But I know I could do episodes on mattresses and construction and choices. Because that's one of the main things I see people ask about all the time is, I need a mattress recommendation. Mine's killing me. 


Cary:

Yeah. And and, you know, I don't know that there is one single mattress out there that would help anybody. It's just part of coping with a disease, you know, it, there's just nothing that's actually 100% comfortable. So you just got to kind of find the best ways to get through your life to minimize that. So you can have a quality of life. 


Jayson:

Yeah. Now one thing I wanted to ask you, and this is more out of curiosity. There's so many of us that have this disease that live up north and we all think about, man, it'd be great to go down to a warm climate to help with alleviating some of the pain. You're in Georgia. Georgia is known for having high humidity. How does that affect you? 


Cary:

The humidity, if you want to live in a hot climate, find one that's hot and dry. I think that was helped more than anything, because humidity changes are when I noticed the most flare up with it. It's where I end up having the most pain and the base tone. 


Jayson:

Okay 


Cary:

If the humidity makes a massive change or if it's extremely hot, then I'm miserable. A dry hot is great! 


Jayson:

I spent 10 years, almost 10 years in Arizona, and it was a hot, dry heat. And I tell everybody, and it wasn't just Phoenix being there, it was when I would go to Sedona it was when I go to anywhere, that dry climate really was fantastic. For me, it just made all the difference in the world. 


Cary:

But see, I’ll tell you another thing that I deal with as a peripheral to this disease, I'm actually a lung failure. Because of it, I have what's called an elevated diaphragm and my right lung is paralyzed third lobe of the right lung that's just black, it's completely non-functioning whatsoever. And then my left lung doesn't function exactly correctly because of the beginnings of nerve damage to it. So one of the things that makes life very difficult with regard to the humidity is the breathing. And I do better when I'm in hotter, drier climates on the breathing as well. 


Jayson:

Interesting, being that I'm in Michigan, everybody always says oh, I want to retire and go to Florida and I've not spent enough time in Florida to know how the humidity would affect me like if I lived there during the warm season. But I do know what the warm season in Arizona is like and for me, like I said last time I was in Arizona, I was in Sedona with my ex wife and we did a four mile hike, which doesn't sound like much, but it was up Bell Rock, which is a mountain Bell Mountain or whatever they call it and I walk with a cane because I have nerve damage from my left hip replacement, I have a drop foot. So when I got two miles up the trail up the side of the mountain with my cane people were looking at me trying to figure out how the heck I had gotten up that high. It's the lack of humidity. 


Cary:

And you don't want to live in Florida because it's surrounded on three sides by water. I can tell you with hot humid in the summertime down there. 


Jayson:

Yeah, it's it. The humidity, I think would just absolutely kill me.



Cary:

Then I think humidity is the worst thing that we can deal with.



Jayson:

Yeah, that that makes a lot of sense and, and answers. I wondered, I always wonder when I talk to somebody that's in a climate, like I said, how that affects you because there's so many people that asked that, and that's a question I it's great to have you be able to answer that for the listener. 


Cary:

Yes, and I lived 10 years in Kentucky so that in fact, that's where I was diagnosed with this disease and where I lived in Kentucky. The humidity is similar, but it's not quite as bad as it is down here. The only problem is and in that part of Kentucky where I live the temperatures in the winter time, they're very damp, wet, cold temperatures, and it can get colder than normal Alaska, there have been 23 or 23 degrees below 0 when I was there.


Jayson:

And that's in Kentucky?

Cary:

Yeah. 


Jayson:

I didn't think it got that cold there. That's, that's amazing to hear.



Cary:

But it's because of the town where I live being surrounded on three sides by water, we get like effects nose and everything like that, because of the fact that the Ohio River hooks the way it does around the town where I live. 


Jayson:

Okay, interesting. Now, one of the things I wanted to bring in and talk about, is you and I discussed a little bit earlier is keeping up as best you can, keeping a positive mental attitude to allow yourself to keep pushing forward, but keep putting one foot in front of the other and go forward. And in listening to you and your story, you've had a series of events that would crush a lot of people, and you've overcome those. And I'd love to hear you tell the listeners a little bit about what you went through and how you overcame that. 


Cary:

Sure, with the crushing part of it, it's every time I get a new diagnosis, you know, I mean, kidney failure, my bladder doesn't function, my lungs are failing. That was the beginning of heart failure issues. Every time I've been given one of those, it just kind of takes me down six steps. And at the very beginning of this, when I started receiving diagnosis, I had a really good friend who was a business psychologist, he had a master's degree in it. And I was living in Kentucky, like I said at the time, and I made a trip down here, because this is where he lived at the time, and spent a weekend with him talking about how to cope with it. And the big thing that I learned from him is that if you can learn how to compartmentalize the illnesses and push them away, except when you're going to the doctor and maintain whatever it takes to keep your health good on whatever ailments that you have, then you're focusing on doing what you're doing, but not paying attention to what caused it then you can get beyond some of the emotionality of it and it helps me keep a more positive into and like you say keep pushing forward. And that's pretty much how I get through it. I belong to a group on Facebook Living with Ankylosing Spondylitis. If you don't know that join it is very helpful. But a lot of people that I see on there are at the beginning stages, and they're figuring out that they lay out of work for medical leaves, because they're not able to, and then they start figuring out, I'm not sure I'll ever be able to go back to work. And it's hard for me to see people hurting. And this, this is you given me this offer gave me an opportunity to share my experience on how to cope with it. And I hope that other people can learn from that and begin to have a happier life. I spend a lot of my time trying to encourage people to be able to compartmentalize so that they can focus on living and enjoying life rather than sitting and waiting for you. 


Jayson:

I think that's a really great way to look at it. Because I know for me, and going back to what you're saying, when it finally came time when I said I just couldn’t work anymore. That's an extremely hard decision and as a guy, I found my entire self worth was tied up in my ability to work and bring home a paycheck. And once that was removed, that was really kind of a crushing thing for me to deal with. And it took going and talking to a professional therapist, to help to overcome some of that because the first two weeks I was out of work, you know, as I went on disability, that was great. It was kind of like a vacation after that. Realizing that, okay, it's Monday, and I'm not headed back into work after my vacation. It's Tuesday, it's Thursday, its Friday, Saturday, which became a very hard thing to deal with. And I'm three years into the disability now. I guess it's been it's really just within the last probably a year that I've been able to really truly accept it and not mourn my past life. My pre disability life in a lot of it has been this...