Sjogren's Strong

Introduction

Deanna Leroux

This episode we speak with Deanna Leroux about her journey with Sjogren’s Syndrome.
Learning how to interpret how you feel and what that means, can take some time. Patterns will begin to emerge, showing you, what works and what doesn’t.
And remember, you’re the conduit between your Doctor, your Rheumatologist and your Dentist.

Deanna Leroux

Lupe & Brian:     Welcome to another episode of Sjogren’s Strong.

New Speaker:     My name is Lupe.

Brian:    And this is Brian.

Lupe:     And today we are joined by Deanna Leroux. She was diagnosed with Sjogren’s about 10 years ago. Am I correct?

Deanna:          Five years ago.

Lupe:     I’m sorry, 5 years ago.

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Deanna:          It was 10 years when I got it.

Brian:    And how long do you think you had symptoms prior to being diagnosed?

Deanna:          Well, it is as you know a complicated illness. I grew up always going, running. And I had an idea of running five marathons before I was 40 and I did it. But at the end of it, I had horrible problems with my feet. And they did diagnose me with nephropathy and they kept saying, you don’t have diabetes, you shouldn’t have this. I was like, okay. That was like the hint of things to come and then this itching.

Deanna:               I came down with some itching that was just unbelievably awful. And I spent five years going from doctor to doctor. I’d try one family doctor and I would say, what is wrong? Can you fix me? And I remember going to one practice where I went to every single family doctor in the practice and I think, oh, I got to try them out for a while. Maybe to take some time, so it took five years and then when I decided to go to a specialist, an allergist, she did a ton of testing and then she’s the one that said you need to see rheumatologists.

Deanna:               AndI’m like what… a Rheumatologists? Isn’t that t like arthritis? And so they sent me over, they did blood work and she says, you have Sjogren’s and Fibromyalgia. And I’m like, Fibromyalgia, I don’t even believe in that.

Lupe:     Wow!

Deanna:               And she laughed, because you know, there’s a lot of stigma that fibromyalgia, as well. And people, especially 10-5 years ago thought it was like mental, you know, so quite a shocker to me.

Brian:    So how many doctors do you think you saw before you were diagnosed?

Deanna:               Wow.Hard to say. Probably would say about 10 different doctors over the five years before I ended up with my allergist. And then the rheumatologist.

Brian:    And, you were diagnosed with blood work, no biopsies, correct?

Deanna:               Correct.

Lupe:     A lot of people, they’re being diagnosed with a lip biopsy. That’s what I will read a lot lately. You know, it looks kind of painful.

Brian:    They’re actually taking a biopsy of a salivary gland to get a firm confirmation.

Deanna:               There’s no way I would do that.

Lupe:     Exactly.

Brian:    We have not heard any good things from a patient after a biopsy of a salivary gland.

Deanna:               I have so much mouth pain. I wouldn’t even touch that. I’d be like, I don’t even know if I would want to know if I have whatever.

Deanna:               The Neuropathy tests that I took, that is extremely painful too. I had natural childbirth and that was nothing compared to that.

Brian:    Wow.

Deanna:               Where they do the electrical… they’ve taken a needle in your knee and then another needle in your ankle and they do electric shock to see how fast your nerves go.

Brian:    Well, that sounds like a good time.

Lupe:     Not.

Deanna:               Yeah. I couldn’t take any painkillers before that and I was constantly on painkillers. So that was, awful.

Lupe:     Yea, I’m scratching over here… so after you were diagnosed with, um, with Sjogren’s, what was the first thing you did when you left the doctor’s office?

Deanna:               Oh, well me, I go and read up on it, you know, because I’ve gone through all kinds of things and trying to figure out if I had cancer or you know, some skin disease and all kinds of things. So it was such relief. I mean, I think I kindof laughed too because just like, oh my God, after all this time,

Lupe:     A relief to finally get diagnosed with something?

Deanna:               Right, and then going back and recollecting as I read the Sjogren’s Symptoms going, oh my gosh, I’ve had this over a longer time than I thought. So, it’s hard to believe.

Brian:    When you started reading up on it, did you start with books, pamphlets maybe the Rheumatologists provided or did you hit good old google?

Deanna:               Hit Google and I contacted the Sjogren’s. The national Sjogren’s can’t think of the name of it.

Lupe:     Foundation

Deanna:               Yeah, I got their materials.

Brian:    That’s awesome. They put out a lot of good information.

Deanna:               Yeah, they have some good stuff and the charts and things were really helpful to me. And then I’d take that and go back into the doctor and then talked to her about it and she explained a lot to me. I have a really good rheumatologist. Goes through the whole chemistry of everything. I mean I never had a doctor that goes to the whole chemistry report and says, this is what this means, and it was really good.

Brian:    That’s awesome. You had a doctor who has spent the time with you to kind of calm the mind?

Deanna:               Yes, and she had me set up with an internal medicine doctor instead of a family doctor. And they do the same thing and she understands Sjogren’s too. They’re both female doctors, so they really got me on the right path here.

Lupe:     Oh, so you were lucky to where you had a doctor that, they were familiar with Sjogren’s.

Deanna:               Exactly. Both of them are. They are both from south India originally, so a little more lenient towards natural and understanding and even listen to natural remedies and things, as well.

Lupe:     That’s awesome.

Deanna:               Kind of rare for a medical doctor.

Lupe:     How long do you think you had symptoms prior to being diagnosed?

Deanna:               Well, if you count the neuropathy in my feet it would be 15 years. But I really had nothing significant until five years before my diagnosis. I wouldn’t have expected a doctor to figure it out before that five years while I was searching. That’s when I felt like they should have been able to figure it out. When I got the Sjogren’s material and like I told them all this. So before that there were symptoms, but because of my mouth and dental -you go to the dentist.

Lupe:     Correct.

Deanna:               I got Lasik eye surgery and they say, well, you’re going to have to have it now because your eyes are too dry. I even couldn’t even do punctal plugs because they scratch my eyes too much. So it was crazy that you could put it together with 20 / 20 hindsight.

Deanna:               Five years ago, I had enough significant symptoms that somebody should have been able to figure it out.

Brian:    Yeah, you know, the Sjogren’s Foundation, one of their core missions is to get the materials to dentists and doctors so they can be better educated. So when somebody does have a complaint they can go, you know, that hopefully that lightbulb will go off and they can immediately get the blood work done to see if it’s a Sjogren’s diagnosis or not.

Deanna:               I can look back and I think my mom might’ve had it too. She lost all her teeth before she was 35 years old.

Lupe:     Oh my goodness.

Deanna:               And she did end up dying and Multiple Myeloma so, And she was only 56 when she died, but I knew her skin was dry and it was… I can see it in her. Not enoughto know for sure because you can over identify but it is significant that shelost all her teeth like that.

Brian:    Definitely. And do you have siblings? If so, do they have Sjogren’s, or Indicators of?

Deanna:               No, I don’t have much contact with any of them so I don’t know. I wouldn’t know.

Brian:    Okay. And so your chief complaint was your feet?

Deanna:               That was my feet. That was kind of separate and then I just didn’t run. And then I just, I didn’t do 40 miles a week like I was doing, I’ve just cut it down to like 15, so that was fine.

Deanna:               But then like itching took over, so the itchie was unbearable. Like I bought a toilet brush from the dollar store. And I would scratch myself until I was red and had welts just to get relief. And then sometimes in the middle of I’d get up and jump in the tub and you and I use apple cider vinegar and get in there and Imean I did the Aveeno oatmeal. I did all these whatever home remedy, Wacko-Quacko thing out there. I would try with a bath or whatever and I couldn’t get relief and I would tell the doctors to be this is more than just itching-itching. This is really bad.

Deanna:               And what’s that like for you nowadays?

Deanna:               Well now the thing is if I was still itching even with diagnosis and a couple of years of medication. It’s taken me until this year. So that’s nine years of Sjogren’s before the itching is under control.

Lupe:     Oh my goodness. What are you using now?

Deanna:               Well, I do a combination of things, you know, like flaxseed oil that was prescribed to me by my doctor to take. I had to take vitamin D, my doctor said I really have to get everything in balance and Sjogren’s kind of knocks all your systems out of balance. So part of the last couple years has been getting my thyroid fixed, whatever the blood work said. But the last thing I finally got control over the itchiness. I got a drink like these 4, 14 ounce glasses of water every morning over a couple of hours and then drink a lot of water during the day and it’s finally don’t have to use the toilet brush.

Lupe:     Oh good, I bet you were scratching yourself raw.

Deanna:               I was. Yes, it opens you up to skin infections and all kinds of things.

Lupe:     Do you take fish oil?

Deanna:               No, that’s. It just turns my stomach. But I do eat salmon. I do eat salmon liketwo, three times a week. Well, I’m, I’m extremely allergic to shellfish. Like Ican’t even breathe the steam and I go into an asthma attack. Some of thenatural remedies are based on shark cartilage and things like that. Like Ican’t take any of that, so I’m thinking maybe the fish oil just bothers me justbecause of my fear dying from shellfish.

Lupe:     That’ll do it.

Deanna:               But I’ve always eaten fish before I knew I had the allergies so I have no problems eating fish and salmon. I cut out the heavy meat, you know, my mom was raised on a farm so it was all meat and potatoes stuff.

Brian:    Oh yeah.

Speaker 2:           Coming down the carbs is really hard for a runner and it wasn’t until this year that my doctor says, you got to stop trying to run. And I’m like, I still want to run. She’s like, you’re not going to run ever again. And there’s a lot of grief.

Lupe:     Oh my gosh.

Deanna:               And to lose that, Because that was my thing to deal with life and my favorite thing to do. I hated walking. I always ran… even as a kid. And so I was trying towalk to get back to running and she said you can’t even really walk, you needto do Pilates. And I’m like, okay. So I went and read up on Pilates and I’mlike, I’ve been doing that most of my life to help my running. So thankfullyI’m in a good place now. So I mostly do Pilates, yoga, Tai Chee. But for an oldmarathon runner, t’s still not what I want, but…

Brian:    Yeah, it’s definitely not the same endorphin rush, right?

Deanna:               Um, it’s not at all. There’s no, it’s not aerobic. I mean, yeah, I need to get to swimming, but then there’s the whole itching issue with, you know, chlorine water, so…

Lupe:     I remember I went to the, to the pool one time or it was um, the hot spa and I just got out of there and I was itching so bad. I had no idea what was wrong with me. But you know, now we know.

Deanna:               Yeah. I know that feeling.

Brian:    So when it comes to medications and remedies, do you try holistic approaches or are you more mainstream western medicine with the prescriptions or was it a combination of both or what?

Deanna:               I’m the combo. I think there’s the best of both worlds. And I have a Rheumatologist in internal medicine that believes the same way, so I’m very fortunate.

Brian:    You referenced before they were both Indian.

Deanna:               Yeah. I think that has a lot to do with my being able to heal is that I got into the best doctors that… You know because most of the doctors I had dealt with before that weren’t into any natural things and I think that alone Plaquenil, Cymbalta, that I take, by themselves would not have given me where I’m at. So they’re the ones that told me to do the yoga and the Tai Chee. And right now my doctor is having me try six months of pumpkin seeds and pumpkin seed oil, to see if it helps my energy. Who heard of a medical doctor that does that?

Lupe:     No. They want to prescribe.

Brian:    That’s been our experience anyway.

Lupe:     Do you feel that Plaquenil… Did that help you? Did you feel a difference?

Deanna:               Yeah, because after five… the first five years as I kept getting worse. I was getting stiffer and stiffer and stiffer. And Plaquenil was like oil to my joints, I could move a little bit. Like my ankles would move and I could get up without, you know how you’re stiff when you try to get up?

Lupe:     Yes, yes.

Deanna:               Oh my gosh. It was so bad. And then when after six months or so on Plaquenil I was like, wow, this stuff was definitely what I needed.

Lupe:     Can I ask you about your back? I’m like, when you wake up first thing in the morning, I find that I’m really sore, like stiff, like a board. I can’t even move. It hurts really bad.

Deanna:               Well I, I do something that actually my grandma always did, Is the yoga in bed thing. You put your knees to your chest, um, you know, twist your knees to the side, uh, your arms over your head and then I’m reading that, that Pilates does that too. Here my grandma was doing yoga and Pilates. She never knew it, but…

Lupe:     Yeah.

Deanna:               And but it is stiff. I mean I am stiff in the morning. But my doctor does a survey and checks, how much that is each time. And I’m not too bad anymore, but I do some stretching before I go to bed. And then I do it in the bed when I get out of bed, in the morning, before you get out of bed.

Lupe:     It sounds like you have a really good doctor.

Deanna:               Well, some of it is me too. I mean, I’m kinda into the same things, so that helps. And a lifetime of running… coming back down from that, you still going to bedoing something. So try and get the endorphin high that I can’t get any more.

Brian:    Going back to when you were first diagnosed, and you started researching online, was it… I don’t want to use the word depression, but was it overwhelming to the point to where you had an effect, even if for a short time in your outlook on it and or life.?

Deanna:               Um, definitely, I’ve been going in OK, the energy is too low and everything. And my doctor said well, we need to have you evaluated for depression and I’m like, no, I know. I can’t be depressed, I’m happy. I’m the happiest person at work. And I used to be so energetic and so my low energy is higher than most of these people here.

Deanna:               And uh, I just got diagnosed with a low-grade depression, so I’m on Wellbutrin now. I had 10 years where I was super depressed, very severe family issues and an abusive ex-husband. So I had Wellbutrin for 10 years back then and I know that I was not depressed like that. I was sure of it, so I was kinda shocked, but there was a lot of depression involved. Especially being isolated at home a lot. You don’t realize how much you take yourself out of life trying to deal with it.

Brian:    Yeah, that’s, that’s been a common theme amongst everyone we’ve spoken with so far.

Deanna:               And it’s hard to read the Sjogren’s Support Groups because a lot of it is about that and it just is more depressing.

Brian:    That is exactly why we’re doing what we’re doing. We’re doing everything we can to…You know, I don’t know because I mean Lupe when she was diagnosed, there was a bout of depression, never diagnosed. But she just wasn’t the same woman that she was.

Brian:    And we finally got to a point where we said, screw it, we’re gonna do our best to live life, how we were living alive with adjustments. For example, we can’t go hike at 8:00 AM anymore during the summer, so we will leave the house at 3:00 AM and will be on the trailhead by 4 – 4:30 and throw headlamps on and start walking in the dark, but we can typically have half if not more of the hike we wanted to accomplish done prior to, you know, peak sun and peak heat for the day.

Brian:    We just want to convey that, that you can still live an active, healthy lifestyle with the diagnosis of Sjogren’s and, and yeah, the negativity online is just overwhelming.

Deanna:               It is. It’s not healthy. It’s not helpful either. I said I feel like I’m doing ministry work when I need to put some positive spin in there somewhere and I tried to give something helpful and then I get out before it gets me depressed.

Deanna:               That and they all want to do this whole, ask them on the group for medical diagnosis stuff all the time. I’m like, why are you asking here? Go see a doctor. And then they come back on and say they don’t believe their doctor. I’m like, you don’t believe the doctor, but you believe these strangers on the Internet. I’m confused.

Brian:    Yeah. You’ve got to make the most of a good day and celebrate the small wins and accomplishments. And, I mean, we’ve made a lot of changes to the way we live, the way we eat, the activities we engage in. I mean, circle of friends, some friends, all they want to do is get together at a bar and drink and that is not good for… It’s not good for anybody if you don’t have Sjogren’s, if you’redoing it regularly.

Deanna:               That’s really funny.

Brian:    Having Sjogren’s, you know, all that alcohol is just going to dehydrate you. And, you know, it might take me, if it’s a really bad hangover, a cool half day to recover, but somebody with Sjogren’s, it’s days, to recover.

Deanna:               Oh, that could put them into a whole bad winter.

Brian:    Yeah. And so we’ve changed circles of friends and…

Deanna:               Uh, yeah.

Brian:    And it’s okay. It’s okay to do that because people change. People grow, people go in different directions. And yeah, I wish we were hanging with some people, thatwe did prior. However, we’re still having fun and we’re still doing things we’dlike to do with new friends in this new circle. And that’s, it’s helping topromote that healthy, active lifestyle, which is what we want to do. That’smore important to us than having a drink in a bar.

Deanna:               Well true. And it’s kind of funny, you said about the alcohol because my name is Leroux, which is the brand of a Canadian brandy and it’s been a family drink my whole life. Alcohol is more of my life than most people.

Brian:    So, that’s the family business.

Deanna:               No, but it’s just a family tradition. And here’s, you know, it has our name right there on the label. And there’s even a Canadian Polish one and we are Canadian Polish and it’s like, you know, I had whiskey and some kind of alcohol since I was five years old. It’s amazing. I’m not an alcoholic, but now I can’t even participate in that tradition because it just… the alcohol is like, oh my poor mouth.

Brian:    What is the number one change that you’ve made in your daily routine that has helped you the most with Sjogren’s?

Deanna:               I would say, in the daily routine, is the constant doing a little bit of yoga here and there. I’m stretching just a little bit here at… I even have stuff at work to remind me and I do it at work. I do it at home, I do it in my bed. After I get up and take a bath and everything. I do a little bit more and I only do like five or six minutes at a time, but by the end of the day I’ve probably done maybe 45 minutes total. And that makes a difference with the way the joint stuff up when you’re sitting, I think.

Lupe:     Yeah, I agree. You can’t sit for too long because when you try getting up. Woo.

Deanna:               I work at a call center so I’m sitting two hours straight, not moving. So uh, tryto do things under the bed, under the thing, moving my legs. But I remembergetting up and going for a break in my one right hip wasn’t like, it was stillstiff but I had to go to the bathroom really bad. So it’s probably like almost halfhopping down the aisle and my boss went down. He goes, are you okay? Did youjust get her? I’m like, no.

Lupe:     This is my norm.

Deanna:               This is normal before I go to the bathroom, and you didn’t know.

Lupe:     Right. Have you made any changes to your diet?

Deanna:               Tons. Yeah. I mean 100 percent different and I kind of wish I had… I can’t imagine… all I think back is if I could have only done yoga back when I was young and eating all these healthy foods. What, where am I running would have gone. And maybe I would have put off having Sjogren’s or it wouldn’t be so bad, but you know… But I really loved and I keep telling people about it as much as I can. Here do this, someday you might have arthritis, so this will help you.

Brian:    So what’s your typical diet consist of if, you don’t mind sharing?

Deanna:               Um, well my lunches are pretty, um, since I don’t like to leave to go out to work because it’s so, you know, get so stiff. So I, uh, have these tuna and salmonpackets, that they have, that are all natural, wild caught salmon. And I justput them on some whole grain crackers and some kind of fruit or veggies. Andthat’s my lunch.

Deanna:               And then in the morning I try to do those smoothies. They have a wonderful thing at the freezer section of the store now, where you can just buy them pretty much chopped up and pre-made. And you just dump it in the blender and add some water or milk or juice. And that’s my breakfast.

Deanna:               So, dinner I try not to eat too much because I get home from work at nine, so I’m kind of like a grazer. So, I am having a battle with sugar. So, I still eat sugar during breaks and stuff at work. Try not to. But I work at a convenience store headquarters. So you know all these stock is sugar.

Lupe:     They always have snacks there.

Deanna:               Yeah, and they are constantly bringing that stuff. So, it’s hard to resist. In fact, Cymbalta, when they first put on it… it kind of gives you… it doesn’t always to take away the pain, as much as it gives you the, I don’t care, I’m in pain. And so I didn’t care that I eat sugar or not for six months, then I didn’t realize I gained 30 pounds. So now, it’s a horrendous job trying to get rid of this 30 pounds. I’m down about five.

Lupe:     You’re getting there. How are you feeling these days compared to how you were feeling prior to being diagnosed?

Deanna:               Well, I don’t know. I don’t, uh, try not to have any regrets. But um, I do like my lifestyle. I’m independent. I have a fulltime job. I can work 48 hours a week.

Lupe:     Correct.

Deanna:               And not everybody can, that has this. And I don’t have any family, so I know I have to really work hard at this, to stay healthy as long as I can. Because I don’t have anything to fall back on.

Deanna:               So, I actually tried to move to Florida and I didn’t like it because I got so sick down there, but I also couldn’t leave my doctors. I finally realize how incredible my two doctors are here. So I kinda came back to Ohio because of my doctors.

Lupe:     For your doctors, yeah. Yeah, I think I would do that too.

Deanna:               But I mean, I can’t think about it too much. I got to keep going forward because asyou age… Uh, one of my heroes, I was really into running. One of my heroes was this 86 year old man that was out running. And every morning at 5:00 AM, when I was training for marathons and I want to be like him someday. And nowI’m not really going to be able to. And that’s hard. That hurts, but…

Brian:    You know, I want to be a runner…

Lupe:     Right. Want is the word.

Brian:    And I hate running. But, you know, I never had any formal training on techniques, stride,you know, anything like that. And I enjoy running, once I hit the three milemark. But the pain of those first three miles, and for everybody listening,this was years ago. I haven’t attempted to run seriously in a couple of years. But the pain of those first three miles for me, was what told my brain, youknow, don’t go do this. But once I hit three miles, it’s like that’s when theendorphins kicked in and my body settled. Maybe my mind settled and I couldjust cruise. But that first three miles was just pain.

Deanna:               Well, it takes six miles for me to have the endorphins kick in. But I grew up on the highest hill overlooking Lake Erie. And back then the school buses wouldn’t go up there and road, so we had to walk up the hill every day. And me and the next door neighbor and I, we, uh, we both had the high school track records for the two mile.

Deanna:               Sowe kinda grew up on no training either. And on cinder tracks, but it was our lifestyle of where we lived, which was really a lifesaver, I think. But we were used to struggling, so we don’t even notice that first three miles.

Deanna:               But now if I had to compare it to now, no matter what I do, if I’m walking, my walking feels like that first three miles of trying to run. And it’s like, oh wait, I can’t do this. I should be running to feel like this. It’s awful. So, I would like to get to swimming, but I need a pool that doesn’t have chlorine.

Brian:    You know a lot of the pools out here going to the salt.

Deanna:               That’s what my doctor was just telling me about. So I tried to look around here, but there isn’t any in my area.

Brian:    If you were walking down the street and met somebody that was walking out of a doctor’s office, just having received a diagnosis of Sjogren’s Syndrome, what piece or pieces of advice would you give them, if you had two, three minutes with them?

Deanna:               Here’s my doctor’s number. Contact Sjogren’s Foundation, cause they are fantastic with helping you with your initial things. You have to pay attention, that you have to be responsible for your healing, because it’s so splintered.

Deanna:               Cause like what you need to have for your mouth, you might not learn from your dentist. You might learn it from your doctor. That kind of thing. And hang in there and find new ways, here’s some Yoga and Tai Chee that help you. You know,and it’s a journey and it’ll take a while, but you’ll get there.

Lupe:     Pay attention to your body because only you know, your body. And the triggers, you know.

Deanna:               Right, I’m really thankful, I’ve always been a runner because I’ve always been very attuned to doing what’s better for my health, you know. Because I always wanted to run more and I wanted to be like that 86 year old guy and run when I was 86.so… I

Brian:    Is there anything else you would like to leave with the listeners before we end?

Deanna:               I guess the thing is people don’t understand Sjogren’s. So, the more people could understand it, that doesn’t have it and realized that we are really ill, we just don’t look. It’s a constant theme, but people don’t realize how awful we feel. And if we say anything, we feel like we’re hypochondriac. And we’re not trying to be hypochondriac. We just want to survive the day. So that’s what I would say.

Lupe:     People don’t understand what they can see. And just, they can see it.

Lupe: That’s right. Thank you so much for agreeing to be here. We really appreciate it.

Deanna:               I’m glad you found me. Well, thank you for having me. I love talking to you guys.

Lupe:     Learning how to interpret how you feel and what that means, can take some time. So, in learning how to listen to your body, I recommend just a simple journal, Logging how you slept, what your hydration level is, what you’ve eaten, what exercises you’ve done, and how you feel.

Patterns will begin to emerge, showing you, what works and what doesn’t and remember, you’re the conduit between your doctor, your Rheumatologist and your dentist.

Make sure you have a clear understanding of what each is telling you to do… so you can educate the other.

Until next time, SIP CONSTANTLY AND STAY HYDRATED.

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