Lupus

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.