May 28, 2018
Transcript is after pic below.
In episode 9 we will be discussing LUPUS, an autoimmune disease with Ann S.. Ann was diagnosed approximately 10 years ago after suffering the previous 25 years with Rheumatoid Arthritis. Both are Autoimmune diseases, one affecting the joints, the other (LUPUS) can affect various parts of the body. Please listen to her story, and see the LUPUS Episode 9 Resource Page for more information regarding this diagnosis.
TRANSCRIPT
Ron: [00:00:15] Hello and welcome to podcast DMX. The show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. [00:00:24][9.4]
Lita: [00:00:26] I'm Lita. [00:00:26][0.2]
Ron: [00:00:27] I'm Ron. [00:00:27][0.2]
Jean: [00:00:28] And I'm Jean Marie. [00:00:28][0.5]
Lita: [00:00:29] Collectively we are the hosts of podcast d x. This podcast is not intended to be a substitute for a professional medical advice diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never just regard professional medical advice or delay in seeking it because of something you have heard on this podcast. [00:00:59][30.3]
Jean: [00:01:01] On this episode we will be discussing lupus. Lupus is an auto immune disease which means something has gone wrong with the immune system of the patient. Normally our immune system protects our bodies from invaders like viruses and bacteria but in lupus the system actually attacks the body itself and this can result in inflammation pain and damage in whatever part of the body a flare up occurs. Sharing her story with us today is our guest. Ann, hello Ann, and thank you so very much for being with us today. [00:01:32][31.3]
Ann: [00:01:33] Hello and thank you for having me. [00:01:34][1.3]
Ron: [00:01:36] And let's start out now can you tell us when did your symptoms begin. [00:01:39][3.2]
Ann: [00:01:40] Well it's kind of twofold in when I was in the seventh grade I was diagnosed with rheumatoid arthritis and probably at the same time I should have been diagnosed with lupus. But it took them up until just 10 years ago which I'm 50. So they didn't diagnose me till I was 40 with lupus. Once I was diagnosed with it it made a lot of sense of what my body had been going through for all these years. I kind of fell into the diagnosis. It was January and I ended up with pleurisy which is not, it's the lining of the lung that gets inflamed and infected. And I ended up in the hospital for a week and I went to my rheumatologist in April and I had told him that I was in the hospital and he was like Why are you in the hospital and I said well I had pleurisy. He said why did why did you have Pleurisy?. And I said I don't know (laughter) why it just happened. [00:02:36][55.9]
Lita: [00:02:37] You know I was bored one day,. [00:02:37][0.2]
Ann: [00:02:38] I woke up in the middle of the night. One day I woke up in the middle of night I thought I was having a heart attack. I went. They you know admitted me for a week until they got it under control. And he's pulled all my records and he was like did a blood test. And they called me on a Friday night at 5:00 to tell me that I was diagnosed with lupus you know an incurable disease, lifelong and I was kind of in shock and I wanted to get to my doctor and say What is this. Because I'd never had heard of it. And you know a lot of people I come across have never heard of what lupus is and understand that you know you look healthy on the outside but you're really not. [00:03:14][36.3]
Jean: [00:03:14] A right. [00:03:15][0.2]
Lita: [00:03:15] Another invisible illness right. [00:03:16][1.3]
Ann: [00:03:17] Yes. Yes. So that's that's how I was diagnosed 10 years ago. [00:03:21][3.4]
Jean: [00:03:22] OK so it took quite some time to get that time. [00:03:24][2.4]
Ann: [00:03:25] Oh yeah. [00:03:25][0.2]
Jean: [00:03:25] Oh wow. [00:03:26][0.2]
Ann: [00:03:26] Yeah. And let me tell you it was a it was a very eye opening to know. [00:03:30][4.3]
Ann: [00:03:32] You know I had gone through bouts of I couldn't get out of bed and I would call my mom after I had my kids and be like Oh Mom please come in. I just can't I can't get up today I can't. I just don't feel right and I never understood and I had kidney stones and just so many different things at once that it all came out it was like - oh my gosh it makes sense it really makes sense and I'm not you know. [00:03:54][22.1]
Ron: [00:03:55] So the reason behind it. Yeah yeah. You know and you just kind of think you think you're crazy. You know it just things happen and you're just like why. [00:04:02][7.3]
Ann: [00:04:03] You know kidney stones this other thing and I've always tried to be very healthy and it was a very happy to hear that. [00:04:10][7.1]
Ron: [00:04:11] But on one hand did it feel kind of better at least now you knew That. [00:04:15][3.8]
Lita: [00:04:17] Nowledge is power. Right? [00:04:19][1.3]
Ann: [00:04:19] Yes. [00:04:19][0.0]
Jean: [00:04:20] And you know you can anticipate what is going on. [00:04:22][2.8]
Ann: [00:04:23] Now I knew and I could foresee when it's coming and understand why and yes that I hated that I had a lifelong disease but I was very happy that OK now I can research this and figure out what name and I do and how to get around it and deal with it. [00:04:40][17.6]
Lita: [00:04:41] Sure. Now on a typical day what are the worst symptoms that you have. And are they consistent or do they come and go. [00:04:49][8.3]
Ann: [00:04:50] They they come and go. There's times where I'll I'll get a flare up of my lupus and an ever since I've been diagnosed that I've had different things happen. I went where I was having chest pains and they did every test under the sun you know stress tests an EKG and just everything and then they're like well there's nothing there it's gonna be your lupus you know. And then recently I've I've had a pain that I've been dealing with and they did a CAT scan and they did an upper GI and a lower GI. And it's they don't see anything and then they go oh it's your lupus you know. So it always falls back and that's so it's it's it's it's not like a daily thing but I do have a lot of flare ups that that come and when they do hit it's it's really tough. [00:05:36][46.5]
Lita: [00:05:37] OK. Thank you. [00:05:38][0.6]
Ann: [00:05:38] Oh yeah. [00:05:38][0.3]
Jean: [00:05:39] Does anything trigger these flare ups. [00:05:41][2.0]
Ann: [00:05:42] Stress. [00:05:42][0.0]
Jean: [00:05:42] Ohhhh.. (laughter). [00:05:42][0.0]
Lita: [00:05:45] Yeah. [00:05:45][0.0]
Jean: [00:05:45] Wow. [00:05:45][0.0]
Ron: [00:05:46] I bet the doctor says Just don't worry. [00:05:47][1.4]
Lita: [00:05:48] Don't worry be happy. [00:05:49][1.1]
Ann: [00:05:50] Four kids four dogs. Yeah. [00:05:51][1.6]
Jean: [00:05:54] Oh my gosh,. [00:05:55][0.1]
Ann: [00:05:55] Yeah. So I, I lose my hair a lot from the lupus. I used to have really long strong nails and now my nails are not you know so there's things like that that I deal with on a daily basis that you know normal people don't. [00:06:10][15.5]
Jean: [00:06:11] Right. We all take for granted. Sure. [00:06:12][1.5]
Ron: [00:06:13] If I can ask Do any of your other family members have lupus or any other autoimmune disorders. [00:06:19][6.1]
Ann: [00:06:20] Well that's an easy one to answer. I was adopted so I have no idea. [00:06:23][2.9]
Lita: [00:06:23] OK. right [00:06:23][0.0]
Ann: [00:06:23] So I don't know my background I don't know which when you're adopted that's really something you wish you could bring along with you to understand your medical history. [00:06:32][8.6]
Lita: [00:06:32] Is it something that's hereditary though. [00:06:34][1.4]
Ann: [00:06:35] You know what. I'm not sure. I'm not sure. I know that I know that arthritis is, but I'm not sure and I do know that anytime you have one autoimmune disease you're more likely to get another one and that's why lupus and arthritis go hand-in-hand. [00:06:49][14.0]
Lita: [00:06:50] OK. All right. [00:06:50][0.6]
Ron: [00:06:52] Well we did some research ourselves and according to the Americans With Disabilities Act Lupus can be considered a disability that is protected. That's something that you may want to keep in mind for the future. [00:07:06][14.8]
Lita: [00:07:07] Right. And that would be that would imply that if you're working your workplace would have to make accommodations for you. If you can't work anymore in the future you might be about to be on disability. You get disability from Social Security. There could be. I don't want to say benefits because there's never a benefit to having a disability but at least the government might be able to help you with it in the future if it gets bad enough. [00:07:33][25.3]
Ann: [00:07:33] Very interesting I'd never looked that up to determine if that was something I could ever fall back on. [00:07:38][5.1]
Lita: [00:07:39] Right. Right. Something to keep it in the back of your mind. You know if you need to go there. [00:07:42][3.2]
Ann: [00:07:42] Definitely. [00:07:42][0.0]
Lita: [00:07:43] Are there medications or supplements that you have to take regularly. [00:07:45][2.6]
Ann: [00:07:46] Yeah. Yeah. My doctor has me on medication and it's two fold again with the arthritis and the lupus. So to keep the flares down. [00:07:54][8.4]
Lita: [00:07:55] How about natural supplements do you do you do anything you know like herbals or vitamins. I mean do you augment besides what your doctor tells you. Some people just really kind of get into the natural. [00:08:10][14.5]
Ann: [00:08:11] I haven't but I'm really interested in looking into that. I do know when in the past when I've gone to the chiropractor and did more natural things than the medications because the medications can be very toxic to your body you know on certain medications that I take they're like Oh and for years we have to biopsy right before you know cirrhosis silent cirrhosis of the liver so there is definitely a benefit to looking into and I definitely need to look more into the older I get the more I prefer to be on the natural right just to help out. [00:08:43][32.3]
Lita: [00:08:43] I think I remember when we were researching the the cirrhosis that milk thistle I think is a protective natural remedy for the liver. So if you take milk thistle on the side it might help support your liver something you might want to look into. [00:09:00][16.6]
Jean: [00:09:00] And ask your doctor about before you take. [00:09:02][2.3]
Ann: [00:09:03] Well I definitely will be yes. I mean that's what I do blood tests every three months and right now for like the last year of blood tests my liver tests have been coming in bad and she keeps telling me you know watch what you know and I don't drink regularly I don't do any of that I try to stay healthy but my liver function and then now just the last blood test my my kidneys have come in at a bad thing. So I really should look into an indefinitely as my doctor you know on on the natural supplements to help out with. [00:09:33][29.7]
Lita: [00:09:33] OK good good. [00:09:34][0.7]
Jean: [00:09:35] Were there any treatments or changes like lifestyle type things that you can do to help alleviate your symptoms. [00:09:41][6.1]
Ann: [00:09:43] The one thing that my doctor has always told me was to keep myself fit to keep you know less pressure on the joints and things like that. So I try to stay on low impact and then I'll do a lot of things I work out at L.A. Fitness and they have a pool so I go in the pool and I do things in the pool to support the joints that I'm not putting a lot of heavy impact. [00:10:05][23.0]
Jean: [00:10:06] That's great. And I do know an organization that provides free scuba lessons. [00:10:10][4.4]
Ann: [00:10:11] Really? [00:10:11][0.0]
Jean: [00:10:11] To people that have different challenges. So that's something that we can give you more information about. [00:10:16][4.1]
Ann: [00:10:16] I would love that. [00:10:16][0.3]
Jean: [00:10:16] If you Ever wanted to learn to scuba. [00:10:17][0.7]
Lita: [00:10:18] Ron might be a member of the board. [00:10:19][1.7]
Jean: [00:10:20] Yeah... [00:10:20][0.0]
Ron: [00:10:20] Diveheart.org. [00:10:20][0.0]
Jean: [00:10:20] There we go [00:10:20][0.0]
Ann: [00:10:20] yeah I heard that. Oh there we go let us do that. [00:10:28][7.6]
Lita: [00:10:29] And we call that recreational therapy. [00:10:32][2.8]
Ann: [00:10:33] Right. [00:10:33][0.0]
Jean: [00:10:33] Yeah. The two recreational therapists in the room. [00:10:35][1.6]
Lita: [00:10:37] What other restrictions do you have to follow if there were any. [00:10:39][2.4]
Ann: [00:10:41] Not many restrictions but like I can't participate if you we have a family function and they want to play volleyball or they want to play softball or baseball or any of that I can't do any of that because the impact with my joints I can't take any of that. So which is a real bummer because growing up I like to play sports and I really can't play any sports any longer. [00:11:01][20.1]
Lita: [00:11:01] So now you're on the cheerleading team correct. [00:11:03][1.4]
Ann: [00:11:04] But I was a cheerleader back then too. [00:11:05][1.2]
Jean: [00:11:05] Look like there's an abilities Expo coming up next month and maybe I know we're going to be attending and we'll have to see if there's anything they have for accommodations. [00:11:15][10.1]
Lita: [00:11:17] Right. [00:11:17][0.0]
Ann: [00:11:17] That would be awesome. [00:11:17][0.1]
Lita: [00:11:17] yeah something for, You know lupus patients that might want to incorporate different things in their life. [00:11:24][6.6]
Ron: [00:11:25] Yeah I think the biggest thing to add to knowing all this is just because you were diagnosed with this doesn't mean that you can do anything. There's a lot out there we just have to adapt for you. [00:11:34][9.6]
Ann: [00:11:35] Correct. Yeah. Very true. [00:11:36][1.4]
Ron: [00:11:37] Look can I. Are you able to work. [00:11:39][1.9]
Ann: [00:11:40] I do work. Yes I work. I'm an office desk job so I work from home and I keep myself comfortable in my chair and everything that I do on occasionally I have to get up and stretch my joints out but I'm able to do that. [00:11:55][14.3]
Ron: [00:11:55] OK. Because that was going to be my follow up question what type of accommodations or anything you do to kind to help you out with. And in stretching. [00:12:03][7.7]
Ann: [00:12:04] Yep I do stretch. I have my little roller ball that I roll around on occasionally when I'm. I'd like to keep my feet up and keep the pressure off my joints and things. [00:12:12][7.8]
Lita: [00:12:14] Ergonomics. [00:12:14][0.0]
Jean: [00:12:16] And after the workday is through and you have your family to deal with. Does the does lupus affect what you're able to do with your family you said that you know when you first had the kids it was tough and that when you're trying to take part in family activities that's difficult as well. But how else does lupus affect your family life. [00:12:37][20.4]
Ann: [00:12:39] Having teenagers and 20 year olds they like to play loud music and that, they don't understand how it it's it's overstimulation in my brain, and I have a really hard time with that and I have to constantly tell them to turn the music down or they've got multiple things or on their phones and they don't have headphones on and it's in my head and it's so hard for me to get them to understand it really bothers me. You know I can't focus on it and I just kind of get like you know I'm going to lose it if you don't turn it down. [00:13:10][31.2]
Jean: [00:13:11] Have you ever tried wearing noise canceling headphones. [00:13:13][2.0]
Ann: [00:13:14] No I have not. OK. [00:13:15][0.9]
Jean: [00:13:15] Yeah I might have to look into getting you some of those too because yeah. [00:13:19][3.5]
Lita: [00:13:19] I think everybody that has teenage kids should have noise cancelling headphones. [00:13:22][3.4]
Ann: [00:13:23] I think that's a good idea. [00:13:24][1.0]
Jean: [00:13:25] Teenagers should have an off switch. [00:13:26][1.1]
Ann: [00:13:27] I tried the remote it didn't. [00:13:28][1.1]
Jean: [00:13:28] Right. [00:13:28][0.0]
Ron: [00:13:29] I'm all in favor raise your hand. [00:13:31][2.0]
Jean: [00:13:31] Yeah. (laughter) Yes. [00:13:32][1.0]
Ron: [00:13:35] Ann are there any responsibilities outside of work that you need assistance with. Not trying to sound sexist in this, I'm the only male in this interview but what about things around the house like cooking or shopping things like that umm, keeping the house clean. Is that something that you need assistance with or are you able to do that yourself. [00:13:55][19.9]
Ann: [00:13:55] No I'm still able to do all that myself. [00:13:57][1.4]
Ron: [00:13:57] Yeah I bet the whole family is glad. [00:13:58][1.4]
Ann: [00:14:00] Yes they are because they don't want to participate. [00:14:01][1.4]
Jean: [00:14:05] (laughter) Teenagers, they're not chomping at the bit to help you clean and go grocery shopping. [00:14:09][4.2]
Ann: [00:14:09] No no shopping. Right. Right. [00:14:12][3.0]
Lita: [00:14:14] Well now after you you've filled us in a little bit on the swimming pool at the gym. I knew that you were a big believer in staying physically fit. Is going to the pool and using the pool. Is that part of your treatment program or do you hit the gym for other reasons as well. [00:14:30][15.9]
Ann: [00:14:31] I kind of hit it. It's a whole the whole being you know with with my lupus with my stress and things. It's a huge stress reliever. When I go to the gym and I work out and I put my headphones in and I listen to my music and do what I have to do it's tough. My feet hurt when I get on the treadmill or or the bike or the elliptical within the first you know seven minutes my feet are just on fire but I continue through it because I know I need to because the more fit I am the better I feel. And you know the healthy lifestyle is really huge to to keeping the lupus at bay. [00:15:08][37.4]
Lita: [00:15:09] I think it's amazing that pool activities are so good for a lot of different disorders. Arthritis is number one but cardiovascular. You know people that have had a heart attack. The only thing I can't do a pool because I've had problems with chlorine. I'm allergic to chlorine. [00:15:31][21.9]
Ann: [00:15:32] Oh. [00:15:32][0.0]
Lita: [00:15:32] And they all use chlorine so I've never been in a swimming pool person at all. [00:15:37][4.7]
Jean: [00:15:37] No but you can always go jump in a lake. Mom. [00:15:39][1.8]
Lita: [00:15:40] (laughter) People people have told me that I dont know why. [00:15:41][1.2]
Ron: [00:15:42] Sure that was said with love too. [00:15:43][1.3]
Jean: [00:15:44] (laughter) oh lots of love mmm hmm. [00:15:45][1.2]
Lita: [00:15:45] Yeah. uhHuh. Ann, What do you and what do you anticipate in your future to be with lupus. Do you like foresee any, not to say that you're hoping for a cure everybody hopes for a cure. But what do you think that your future is going to be. [00:16:03][18.0]
Ann: [00:16:05] Unknown, really unknown. I've I've worked with people you know whose sister died at the age of 43 from complications from lupus. And then there's other people who have gone on to live long life. You just I guess I just never know. And one of the things I'm searching now is I've heard that Naperville actually has a group of people who have lupus from early stages to you know aggressive stages of it. And I would like to get in to be with people that are like me to understand where they're the progression of the disease goes. [00:16:39][33.8]
Lita: [00:16:39] Sure that's a good idea. [00:16:40][0.8]
Jean: [00:16:41] A support group. [00:16:41][0.4]
Lita: [00:16:41] Networking right right. [00:16:41][0.0]
Jean: [00:16:42] that's wonderful. [00:16:42][0.0]
Lita: [00:16:42] Has the doctor mentioned to you personally how your disease might progress. [00:16:47][5.5]
Ann: [00:16:48] No. No she hasn't really said anything. [00:16:50][1.6]
Jean: [00:16:51] Live in the, live in the now more. [00:16:53][1.5]
Ann: [00:16:53] Pretty much OK. [00:16:54][0.7]
Ron: [00:16:55] OK. Any advice give any advice that you might want to give somebody who may have recently been diagnosed. [00:17:02][7.1]
Ann: [00:17:04] My advice is that you write down your symptoms and when you go to the doctor you make sure that you tell them everything. I have gotten so frustrated over and over like I said I go in and they do all these tests on me and they don't find anything but yet I know there is a pain there and I know it's real and I know it's not in my head. And it's it gets really frustrating but you have to keep going and eventually they'll find something or the pain goes away. [00:17:33][29.1]
Jean: [00:17:35] Yeah we heard something very similar from Gina. Our guest discussed liver transplant and she said the biggest thing is to make sure you write down those symptoms and that you can walk through them with your doctor because and tell them everything be open and honest because that's what they're there for. [00:17:52][17.3]
Ann: [00:17:53] Yeah. [00:17:53][0.0]
Jean: [00:17:53] So thank you. That's wonderful advice. [00:17:55][1.7]
Lita: [00:17:56] Well I'd like to thank you for spending time with us today. Ann I hope the information that you've shared with us will help others with lupus as they navigate through their own symptoms. [00:18:05][9.4]
Jean: [00:18:07] And we didn't get too in-depth with the actual disease and all of the information there because it is a very complex issue and there's still so much to learn. But for additional information please talk with your health care team. And please you can visit our Web site podcastDX dot com and look at our resource page and we'll have a great dearth of information on lupus. But for now we are going to wrap up today's show if there's anything else that you'd like to share Ann. [00:18:34][26.3]
Ann: [00:18:34] No I don't. Thank you for having me. [00:18:35][1.2]
Ron: [00:18:36] Thank you for being here. [00:18:36][0.6]
Lita: [00:18:37] Yes definitely. We really want to thank Ann, for sharing her story and explaining how lupus affected her personally. It is an auto immune disease as we discussed. And we have included many more details and resources regarding lupus on our Web site. If you have any questions or comments related to today's show you can contact us at podcast D X at yahoo dot com through our Web site podcast D X dot com on our Facebook page at Instagram or Twitter. [00:19:11][34.2]
Ron: [00:19:12] And if you have a moment to spare please give us a five share review on Itunes podcast app. [00:19:19][6.5]
Lita: [00:19:19] Till next time. [00:19:19][0.0]
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