Jerri Christie, Lauren Fox, Jenny Lin, Ellen Schecter, Michael D. Lockshin, MD, Roberta Horton, LCSW, ACSW
Dr. Lockshin: Hello! I'm Dr. Michael Lockshin. I'm a rheumatologist at the Hospital for Special Surgery. You probably all know that lupus is both a serious and a chronic illness. What you probably haven't thought about is that doctors spend only a few minutes with each patient. The patients spend their entire lives with the disease. What we'll hear about this morning is how that disease affects people and how they deal with the problems that they meet.
Roberta: My name is Roberta Horton. I help to develop programs for people with lupus and their families at Hospital for Special Surgery. I would like to introduce Lauren Fox, Jenny Lin, Ellen Schecter and Jerri Christie - lupus veterans. Their years since diagnosis range from 8 to 23 and their symptoms as I have asked you to describe them to me have ranged from rashes and fevers and joint pain to problems with neurological symptoms and kidney involvement. Each of you has a really special story to share. Lauren, what's been the hardest part of having lupus for you?
Lauren: Well I would have to say one of the hardest things has been the unpredictability. In that I mean not knowing when or if I'm going to have a flare up, if I'm going to be able to make plans and have to cancel them. What my future would be in general. That's been the hardest, one of the hardest, things to deal with.
Jenny: It would be the uncertainty as to how lupus will affect my future and also the inability to control how lupus will affect my future because there could be a flare up at any time, which could be debilitating. I know that - well, even the medications, they have side effects, which also I don't know when they will take a toll on my body. So I know that no matter how independent I am right now or how well I take care of myself right now, lupus can affect that in the future to the extent that I will no longer - I may no longer - be independent and I might need, I mean I might not be able to take care of myself in the future. That's been - that's troublesome for me.
Ellen: The hardest part for me is the pain. Not just the physical pain but the psychological pain. Lupus, I've lived with lupus for a long time. Lupus has exacted a lot of losses. The loss of running, loss of dancing although I still get out on the dance floor and wiggle a lot. I think the most painful loss has been the loss of the career that I had built so carefully and yet I have found that the doors close and new doors blow open. I'm a writer and I will never stop writing even if I have to write with one finger or dictate to my laptop. I write six hours every day and I still love doing it. So losses have also for me led to new vistas.
Jerri: Oh it's been a combination of what everybody else has said. The fear of the unknown, the unpredictability, not knowing what the future holds, changes in lifestyle, having to take medication on a daily basis. After a while you know, that can be pretty depressing and having to modify your behavior. Not being able to go to the beach and you know, stay in the sun as other people can. Just having to be mindful of the fact that you do have an illness and that you have to modify your behavior and just not knowing what the future holds.
Roberta: Can you share how living with lupus has affected you in your personal and in your family life?
Lauren: Well, I would say that professionally it's affected how I look at my career and the choices that I've made in my career. I am an attorney and I left the stressful practice - private practice that I was in after ten years and took a job with the government, which was less money but it was a more predictable schedule, more opportunity for time off, better benefits. In terms of the long run, I felt it was a more secure thing to do. That would be professionally.
Personally, I would say that in some respects it's been a negative when family members or people, friends, have been scared by my illness or how sick I've been. I would say that that is a big, was a big change. And then the other thing is that it's been a positive from it too and that is I feel like I have learned very quickly what's important in life. I made certain relationships stronger as a result of it and have been able to get closer to people. Then of course, it's the people that you meet either through various organizations or a support group that end up bringing a positive to your life.
Jenny: Basically it would be - well because of the physical limitations of lupus and also the increased fatigue, I can't do - I can't go out as often with my friends or even as long. They like to go out in the wee hours of the morning and I can't do that. I have to be very careful as to not overly exert myself because my body will tell me when I am overexerting myself and I will feel it. I will definitely feel it. Also I had to adopt a healthy lifestyle. I mean, I had to make my lifestyle so that I can best take care of myself, which meant a healthy balanced diet, vitamins I started taking and exercise. I had to make sure, I had to really integrate it as part of my life and that's how it really changed my life now.
Ellen: I think that living with something that's - sometimes they call it the hippopotamus in the living room in our house. Everybody in my family has had to change a little and sometimes a lot because of the hippopotamus in our living room. I have two children who are now teenagers and my husband - all of us - have had to learn to be a lot more honest with each other. For a long time, I tried to protect them from lupus.
I thought that if I pretended to be fine, pretended to be the same old mom, I could shield them from the pain and the disappointments and the unpredictability that everyone has spoken about but I wasn't fooling them for a New York minute. They knew that something was wrong and the more I hid what was going on from them the more they worried. So we had to learn to look each other right in the eye and talk about what was happening. When we did that, we could sort of all start pulling together instead of stretching in different directions.
Jerri: Fatigue is something that's always there. It affects everything - personal and work life. But for me, I really try to keep my life as normal as possible. There are people that know at my job that I have lupus and people that don't and when they find out, they're often very surprised because I try to keep up a very normal life and not let the disease take over or control me. I am not lupus. It's something that I have to deal with so I try not to allow it to affect any part of my life in any - you know - in any great degree. I mean you can't help it, it does.
Like there's the fatigue, I mean you're constantly - for myself I should say, constantly tired. You know I can't go out like Jenny says. I can't go out and hang out all night long and … I went away recently and, you know, I'm in Hawaii and I'm not out having a great time all the time because I'm tired. So to me that's probably the most - the biggest effect that it's had on the day-to-day of my life.
Lauren: Jerri you said something about work that made me remember the experience that I've had at my job where when I took this new job, I remember my direct supervisor at the time - I didn't tell people - and I just wanted to be - I didn't want to be "oh that's Lauren. She's the new attorney that has lupus. You know I wanted the people to get to know me and know the quality of my work and I had that same experience when after being there a year, I revealed to many of the people that I work with every day - very - in close proximity to - and they had that same reaction. "Well you don't act like somebody who's sick" or "you don't seem sick" and it was … Actually, I was really proud of that - that I hadn't had really many more days out for sick days than most everybody else but I felt like if they knew that up front then that would be on their minds. That would be how they identified me so it was instead like "Lauren, the one who always wears the Yankee hat" not "Lauren, oh the woman with lupus". So I definitely can relate to that feeling.
Ellen: I also want to respond to what you said you're not lupus and you don't let it control you. When I first was diagnosed, I swore that I was not going to let this disease change me and in a sense that was a foolish promise to myself because it has changed me but it's made me much stronger. I really try not to let it stop me. I walk with crutches. I walk with difficulty but I have climbed mountains. I once climbed down an Alp - went up on a cable car and climbed down and when I got to the bottom people looked at me and said "where did you come from?" I said "I came from the top". I've gone in hot air balloons. I go hiking. I mean, I'm slow but I get there. I try not to let it stop me just the way it sounds like you don't let it stop you.
If there's a problem that has to be solved. If I have to figure out a way to carry my coffee cup and I have to ask for a plastic bag so I can put it in my purse - I mean, I won't let something stop me. And if I can't do it myself, I have also learned to ask for help because what's the point in turning yourself into a pretzel if you can ask somebody to help you. Usually people are very happy.
Lauren: If I could make another point about what Ellen said. I think that's a very valuable thing to let people know about having other people help you because it's really like - it's not - you think it's a burden but really enables the people that know you, love you, like you - and even somebody who you don't have a relationship - it's an opportunity for them - for you to give them a gift because by letting them help you, you're having them participate with you especially for close family members. They feel so helpless sometimes and it gives them a chance to participate and feel like they're part of it and doing something. So I think that's a wonderful realization that you've had and it's a gift.
Roberta: You've really talked very eloquently about some of the hard parts and the ways lupus has affected your life. Are there any other additional ways that it's affected your life that you want to add here and thinking about what you've said?
Lauren: I think that it's helped me become a much more flexible person. I think I was much more rigid previous to having lupus and having to deal with it in that, you know, part of the unpredictability is you face that every day so you have to be prepared for the unknown or for something to happen to your plans. You thought you were going to go on a vacation to Cape Cod - well instead you're going to spend a week in the hospital. You know - that's your pride. So you have to learn how to deal with those switches and not spend so much time getting caught up in your disappointment but rather sort of going with the flow.
Roberta: Are there changes in your body image that come forward from the disease or the medication? I know you haven't spoken specifically about that up to now but that can be included - coping with lupus.
Jerri: If I may answer. One of the main drugs that is used to deal with lupus is Prednisone and when you're on a high dosage, a lot of things happen. You gain a lot of weight, a lot of water retention. You go up two sizes in your clothes and you feel ugly, you know and that happens. For myself, in addition to things like that, I've had a skin involvement, which is a little unusual for a lupus patient. It's left me with scars all over my body and it definitely raises a self-esteem issue. You wonder if you're going to be attractive to someone. If you're married - am I going to remain attractive to my husband? You know, what does the future hold for me? It's a little scary. You start to doubt yourself - especially for woman, I think. We kind of struggle with those issues maybe a little bit more than men do and lupus definitely brings that to the forefront. It has for me.
Ellen: I struggled so hard with the same things like an octopus that every time you think you're solving one of the self-esteem, self-image - like one of those tentacles comes around you. It's so painful and so difficult because of all these cultural overlays with the media. But the strangest thing - you know, I see myself one way and I find that my husband, for example, he doesn't even notice. You know, he doesn't notice if I go up a dress size or go down a dress size. It's just like he just sees me as the woman that he loves and I'm trying to adjust to the fact that it doesn't matter to him the way it matters to me.
Jenny: I mean because of the Prednisone and I went through Cytoxan too, which is the chemotherapy used to treat lupus - your hair starts falling out. From the Prednisone, your feet start getting bloated and like, you said, Jerri, you don't feel pretty. You just don't feel pretty. You think you're the ugliest thing walking on the street. You're thinking no one's going to like you. No one's going to talk to you but like for me, I just had to focus on trying to get myself well. That was the goal. That was the only thing that was important at that time. Luckily that was some time ago and getting myself well and making myself healthy and that's what I concentrate on. I think we do magnify. I think I did think to myself that I was much uglier than everyone else but I was - but - I just tried to move on. I just had to think - deal with lupus, try to deal with it the best that I could and that was the goal that I set in my mind.
Jenny: Thankfully I had my family and my friends supporting me and really just being there with me so that even though I felt physically I looked ugly, my friends never made me feel that way.
Roberta: Are there times though when family and friends do disappoint you?
Jenny: Oh yeah. I can think of just one. I mean most of my friends are very, very good but I remember once I told someone - a long time friend - up front that I had lupus and the only thing she said to me was "so am I getting it now too?" It just blew me away and completely hurt me. It really did. The opening that I was kind of reaching out - I was trying to do with her a connection to share a part of myself with her - was completely trashed. I mean I guess you can understand but that hurt. I must say that really, really hurt.
Lauren: I've had friends and certain family members have more difficulty in dealing with it than I would have hoped but I just try and understand that not everybody has the same ability to deal with illness or the loss. It affects them a certain way and certain people like rise to the occasion and are there for you. You know you can always count on them. That makes your bond with them stronger. But there are people that will be frightened by it because they don't understand or it's more difficult for them. I've always felt that the people that really counted and the people that really matters - they know you, they know who you are, they know that you're still the same you. Who you are as a person really hasn't changed.
Roberta: So you're talking about some of the problems of coping and I'm wondering what's most helped you cope with lupus? Lauren, why don't we start with you.
Lauren: Well I would have to say it's probably two things. My positive outlook on things and my sense of humor. I would say positive outlook in the sense that, you know, like I know life isn't just a bowl of cherries kind of thing but again not looking at the glass as half full but trying to always think - okay, I can't do this, I can't sunbathe but what can I do outdoors. In other words, just focus on the things I still can do and realize that there's always somebody who has something worse or there's a way to look at things in a positive way.
Roberta: Thank you, Lauren. Jenny, what's most helped you cope with your lupus?
Jenny: I have a wonderful network of family and friends that really just have supported me and they help me keep that positive outlook that Lauren was talking about. They kept my spirits high. They've really just helped me along the way because even when things looked bad and you're in a lot of pain and your hair's falling out and you're getting bloated - they were there. They were always there. They really kept your spirits up.
Also what I've found helpful was along the way through my doctor I met a wonderful, wonderful woman. My - also my age, also with lupus and she went through the same treatments that I went through at the same time so I was able to relate with her and talk with her. We would comment to each other - like "how are you feeling today", "I don't feel so good today, how about you?" and "yeah, this weather is just really not doing good for me right now" and we would even schedule hospitalizations together just to make it - you know, just make a bad situation better. We would go to the hospital together. That's how we - we saw each other once a month and we would go to the hospital together. You almost made it like a little event. My mom brought oranges, I couldn't eat it because I was sick but she could so she peeled it for her. It just made a whole situation much, much better.
Ellen: I would say that I found sources of strength and some of them were internal. I found sources of strength I didn't even know I had. For example, I never thought I could ever give myself an injection and now I do it like I have a doctor's degree or whatever but I also found many, many sources of strength in other people as you did. I found what someone calls a secret handshake of illness. I made friends with people like Lauren who taught me how to laugh, who cried with me when I needed to cry, who were silly with me when you sort of got to the point of - there was nothing else you could do but laugh when you're sitting in the infusion room with your IV's and you just feel like you just have to do something so you start telling jokes and having a good time.
I was part of the support groups at the Lupus Foundation and here at Hospital for Special Surgery where I learned - for me, learning how to cope with the disease was a very important thing and not just sort of passively being wafted around on the waves of what somebody told me to do but understanding about the medications, about how I could be a partner with my doctor, about how I could help myself in a variety of ways. It made me feel very much more in control of something that I really can't control but at least I could understand how it worked and how I could help myself.
I also had a LupusLine counselor who was someone who was a peer counselor who had very similar symptoms and treatments. So we talked with each other and shared the down part and the up part. We laughed at things that nobody else would ever understand because we had the same or similar experiences. So these people were sources of great strength to me. Because they were strong, I could become strong and that helped me tap into things I never thought I could ever do. I would say the secret handshake of illness brought me a long way and taught me how to laugh Lauren - and also how to be angry, which was a very important thing to express my anger and break plates when I needed to and get it out of my system.
Jerri: The very first thing I did was get all the information I could possibly find on lupus. I was at the library. At the time the internet wasn't so available but it is now and to me that's one of the most important things is to be educated, to know exactly what you're dealing with and not to be overwhelmed by all the information. Because lupus is a disease that manifests itself especially with so many different people - not to get scared by the information but to have the information.
Then in addition to that, just the support. I mean my family and my friends - you know, like Lauren was saying - the people that are closest to me, they're the ones that really helped me to deal with this. People on the outside, you know I get all the time from people that don't know "is it a blood disease?" No, it's not a blood disease. So they don't really know so the people who have been closest to me have been a great support. And of course, God. Just my religious background has really been strength - and my faith is what I should say - my faith has been, I mean, I couldn't do without it. So those things … faith, family, friends and knowledge.
Ellen: I also found that my spiritual self has developed in addition. We were talking before about you grow up but you also grow deeper in the face of something like this and I've found that I really got in touch with my belief in God and also with my soul in that when I couldn't count on my body the way I used to be able to that going inward and being much more in touch with my soul and what that meant in terms of how I am in the world and what I do in the world was a very important thing for me. As I lost my foothold in the professional world, which I had spent so much time and energy on, I found that there was room and time for me to explore issues.
I don't mean to make it sound so clinical but to really explore that aspect of my world - my spiritual world. It really did give me a strength - a source of strength that I had not thought about before. I feel that was a real benefit, an enormous benefit that was unexpected. It was one of the doors that blew open when the other ones blew shut. So that's a wonderful door to open inside yourself.
Jerri: I also think - something that everybody else touched on that I kind of left off myself talking to other people that do share the same illness with is so critical because sometimes you feel so alone and nobody around you - your family and friends, they can really try to be supportive but they just don't know what it's like to be told that you have a chronic illness that there is no cure for, that you don't know how it's going to affect your life and it really is important. Since, you know I don't go to support groups any more. I used to when I was initially diagnosed, I would go to LFA meetings. At that time, I needed that and I kind of grew out of that but just in talking to everybody here today, it just brought back how important it is to really be able to relate to somebody and share what you're going through. It's really important.
Lauren: What you were just saying about how important that is…I had also sort of forgotten…but I talked about before also my first experience because I thought my family understand when I had first been diagnosed and had been through my first flare up. Then I also found my way to a support group and I remember the feeling because it's so - I will never forget this and I talk about it often - how tears started coming down my face as people were talking and I was crying and crying and I just felt they're me. I found me. I had never felt so close to other people and that connection that "oh my goodness - what she's saying - that's me." I felt like they had like uncovered me or something. It was amazing. I remember that connection, feeling that connection and feeling strength in that connection.
Ellen: The loneliness of having a chronic illness is - it's like the fatigue of lupus. It's a fatigue that is very hard to explain. It's like a deep gray, endless well of fatigue and people will say "yes, fatigue, you're tired" but no one really understands it except - I think - someone else who experiences it. There is a comfort - I mean, I'm sad that you know what it feels like but there is a certain comfort in knowing that someone knows the loneliness of having an illness like this with the unpredictability and the endlessness of it.
Knowing that there's somebody else that knows how that feels - it's so wonderful to say to somebody "You know how I feel about this". It's really unbelievable. It's like, I never met Jenny or Jerri before today and I feel like there is a connection that we share. It's like deeply, deeply satisfying because if we never see each other again, if you can know there are two people in this world who know. And if either of us - any of us needed something from each other, we would know what that need was and try to fill it because there's a loneliness in having something like this that no one else understands.
It's like the same thing happened to me when I went to my first lupus workshop meeting and it still happens to me. The tears are just unlocked. I don't cry a lot but the tears are unlocked because I knew I was safe with people who knew how I felt and that's a wonderful gift. If anybody said to me what would I tell somebody who just found out they had lupus, I would say please try and find somebody else that has it to speak to, to have that comfort, that secret handshake.
Roberta: What advice would the rest of you have for someone who's been diagnosed with lupus?
Jerri: Get a good doctor. Get a doctor that you are comfortable with, that takes the time to get to know you. I'll never forget when I was first diagnosed, I went to a doctor who looked at me and said "well you know you can't have children, right?" and I said, "bye" because I am not a number and don't clump me into this lupus model. Deal with me one-on-one so that was the last time this man saw me. I went and found a doctor that wanted to get to know Jerri, know my symptoms, my ailments and deal with me on one-on-one.
So the very best advice I can give is to get a doctor that you're comfortable with, that you can go to at any time with any symptoms and say "what do I do". If they then try a medication that's not working for you but you can go back and say, you know this is not really working for me. I don't feel well. It's making me more ill. I'm concerned about the side effects. Someone you can just talk to so that you know you're getting the best possible treatment.
Jenny: I think we've touched upon it before but just don't hesitate to ask for help. I mean help in a very broad sense of whether it's emotional support from your friends and family or asking them if they can do some errands like here and there for you or even going to, as we talked about before, peer counseling groups because Hospital for Special Surgery has LupusLine program, wonderful peer counseling group so that you know, you can talk with people who share your experience with lupus so you don't feel alone.
I know that some people are very independent, they're very proud and they think "you know what, I can do this myself" but you know what, the journey that we all have to travel, it's so much nicer when you have people with you on this journey. I would just want to tell people like don't be afraid to ask for help. We're all involved in this experience and we work together to get through it.
Lauren: Probably the first thing I would tell them is don't think your life is over. It's really not. That it's just really the beginning. It's a different life but try and lead it as normally as possible and I don't mean don't ignore your symptoms or ignore your limitations but deal with them and move forward. Be active, be social. Depending on what your abilities are in terms of work or anything else, just try and be out there.
While I know you can't lead like what we consider or what most people would consider a normal life, lead a normal life for you. Do the same things that other people do and within your limitations and have dreams. Have goals. Try and achieve them. Having lupus doesn't mean it's over. It means it's really beginning.
Ellen: It's a wonderful life too. I mean I think your life can be deeper and just as happy with lupus. I don't think you should ever think your life is over when you find out you have lupus. It's just as interesting and wonderful. It's just sometimes a little more difficult.
Lauren: It's different too.
Roberta: What about the relationship with your doctor. Can you tell me what has been really important to you in terms of your doctor-patient relationship and what advice you might give to others to help enhance that relationship? Jenny?
Jenny: I think that open communication is the most important part of the doctor-patient relationship.
Lauren: I would agree with that. I would say honesty. Be honest with your doctor in terms of reporting your symptoms or describing how you feel about something. I think you have to acknowledge that your doctor is a human being just like you. I know a lot of people tend to put doctors on pedestals. I mean, they are wonderful and they - we need them to survive and flourish but be honest. Let them know your symptoms. Report back to them with any information that you have. Don't hide anything from them.
I also think that you have to let them get to know you as a person. You have to let them know what your desires are, what your goals are for your life. What you hope to accomplish and make them a partner in that and a participant in that. As they get to know you as a person then the choices that they may offer you or make with you will reflect that. I think you can have a more positive experience with the medical profession if you do that.
Ellen: I think the idea of a partnership is very important. Since it's a chronic illness, it's a relationship that's going to go on for a long time. I think that not to use the pedestal image, to use the sense of partnership and that you both have responsibilities in the relationship. I think that's very important and I think to come prepared, to have your questions ready, to have everything organized so that you use the time as well as you can. I think those are very important things.
Roberta: What positive, if any, can you think of from living your life with lupus?
Jerri: Don't everybody speak at once. (laughter)
Ellen: Let me answer that. I think I've mentioned some of them before. I mean I feel that I have met people that I deeply love through lupus that I never would have met otherwise. I mean, I met Lauren. I've met many people in the infusion room. I've spent probably months in that infusion room getting Cytoxan and other treatments. I've met people from all different parts of New York, New Jersey, Connecticut that I would never have encountered otherwise who have been so interesting and so loving and so giving and so funny that I never would have met otherwise. I've discovered parts of myself that I never would have known otherwise.
I think that my sense of gratitude about my life is so much deeper than it ever would have been and even the sense of texture in my life. I really feel that I love the people that I love more fiercely than I would have if I hadn't had a sense that I could lose it all - my husband, my children. I just - just the intensity that I love them and it's so much fiercer and you know, I feel like my sense of velvet is plusher and my sense of satin is more delicious.
You know, my sense of the value of relationships is just so much more precious than - even my sense of my talent and my place in world - even though I've lost a lot, I feel as if it's become more precious and it's like a, you know…people talk about illness as a gift, and frankly, if it were a gift, I'd exchange it at the exchange counter in the store, but I do feel that I've gotten a lot from knowing how I could lose it all.
Jerri: I think it just makes you a stronger person. I agree with Ellen. I think it makes you recognize what is really important in life and not worry about the trivial things, to appreciate what you have - material and otherwise. You know, your family and your friends. You know, to know that - you know little things that come up, you tend to forget about them and it's not important, you know? Just to be a stronger person. To look at a challenge and meet it head on.
Lauren: Well I would agree with Ellen and Jerri. I agree that it helps you get to realize what is most important in life. It cuts through that other surface stuff and you really can focus on the important things and the important people in your life, the relationships that are important. You don't want to waste time stressing over the trivial or the stuff that's not as important. You know, whatever it is - it's you learn to take on challenges and what those challenges are different for each of us but I think it does instill in you a sense of confidence.
When you're going through it, it's very difficult and you think - Oh, I need this like a hole in the head but the truth is on the other end of it, it's - you take some comfort in knowing I came through that okay. Whatever's going to happen, I'm going to be okay because I got through that, I can get through the next thing. Then the next time something happens you think - Oh here we go again but in the back of your mind, you know I got through this once before, I'm going to get through it again. There's a certain amount of comfort in that I find.
Jenny: For me it was increased self-worth and also the increased strength of spirit. I went through the chemotherapy and along the way in order for me to admit myself every month, I had to say to myself I was worth it. I was worth fighting the fight. I was worth fighting for my life. Also because I was fighting for my life, I got the strength to fight anything else that came along.
You can really deal with anything else that life throws your way because you have fought in the past with lupus, wrestled with it and also as everyone has touched up, you have a different perspective. You know what's important. You know that you're alive, you're functioning because you knew a past where you weren't functioning and I think that's what I think makes here and now, where we're sitting right now, just all richer. I really, really appreciate that now.
Roberta: Thank you so much - all of you - for being with us.
Jerri Christie is a single, 34 year old Jamaican native. She was diagnosed with SLE in 1992. Since her initial diagnosis, she has had 3 major hospitalizations. She has however, been in "remission" now for approximately 4 years with only minor incidences, most notably skin involvement. Some of the symptoms she has had to deal with include arthritis, neurological, kidney and skin involvement, pancreatitis, fatigue and weight loss. Medications helping her keep the lupus in check include prednisone, plaquenil and methotrexate. Jerri wants you to know that she has lupus, but lupus doesn't have her. She currently works full time as an Assistant Vice-President at a major brokerage firm and leads an active life.
Lauren Fox, now 44, was diagnosed with lupus when she was 21, during the summer of her sophomore year in college. She had many medical problems before such as seizures, joint pain, unexplained fevers and blood abnormalities but not one doctor ever suspected lupus. Then when she developed a rash from the sun one summer and had some testing done it was finally diagnosed. In retrospect, all of those problems were attributed to lupus.
Lauren was fairly stable for about five or six years and then began having major flare ups which would include seizures, aphagia, migraine, cognitive dysfunction, gait disturbances, and blood abnormalities such as anemia, low white counts, low platelets, etc. Lauren would have these flares every two years and then yearly and be placed on mega doses of prednisone. She has also taken cytoxan, imuran, and methotrexate, and has had to deal with medication side-effects. She has had numerous hospitalizations, some for very long periods of time for flares as well as other related problems such as pneumonia and other systemic infections.
In the last three years, Lauren has been in a good place medically, some of which she attributes to her taking a less stressful job. She is an attorney presently working for the New York City Police Department as an administrative prosecutor; previously she was in private practice. She lives in New York City and grew up on Long Island. Lauren has two brothers who are married and she enjoys spending time with her nephews in New York. She also enjoys playing golf and going to the movies. In addition, she loves all kinds of music and is a "sports fanatic."
Lauren also wants you to know that she's a LupusLine peer counselor and that she finds that helping others is very helpful in coping with her own illness issues. Her family and friends are very supportive, and that is one of the biggest assets she has that sees her through her victories and defeats.
Jenny Lin is a 28 year-old attorney. She has been blessed with the love, support and companionship of her parents, brother, and all her wonderful friends. She enjoys hiking, exercise, and yoga to maintain good health and peace of mind.
Jenny was diagnosed with lupus almost 10 years ago. Her symptoms primarily consist of fevers, rashes, and fatigue. She currently takes prednisone at a dosage of 10 mg/day but at the worst stage of her lupus, took 350 mg/every other day. Moreover, at one point she underwent Cytoxan chemotherapy for kidney involvement, which in her case necessitated frequent hospital admissions during a three year period. The last time she was admitted into a hospital was in 1994.
Ellen Schecter has published more than twenty books for children, and written, produced, and helped create award-winning TV programs and interactive media that have entertained and educated millions of children and families. Her credits include The Magic School Bus, Reading Rainbow, Allegra's Window, and Ramona, among many others, and have been featured on CBS, PBS, Nickelodeon, and on the Learning, Discovery, and Disney channels.
Ellen experienced her first lupus flare in '76 but it was dismissed as "depression" and she was not diagnosed until '88. The first thing she did was to start educating herself about the disease. The second was to start creating a video, Voices of Lupus, produced with the Hospital for Special Surgery, which features people who live with lupus daily. They continue to spread the message: "I am not my lupus; I am a whole person;" and "lupus is not the end…it is the beginning of your life with lupus."
Ellen, who, in addition to lupus, has demyelinating polyneuropathy, is no longer able to pursue her career in the media. She spent many days over a 4-year period in the Hospital for Special Surgery infusion room receiving IV treatments of gammaglobulin, Cytoxan, and Solu-Medrol, and learned to give herself injections of methotrexate and Enbrel. But she still writes every day (often lying on her back) and, like Flannery O'Connor (another writer with lupus) is always eager to see "what those same 26 letters will say today." She is writing a memoir tentatively entitled Straw Into Gold: A Memoir of Healing. She lives in New York City with her husband and two children.
Learn more about the SLE Workshop, a free support and education group held monthly as HSS.
Reviewed: 9/9/2009 Published: 10/27/2000
Summary of a presentation given at The SLE Workshop, a free support and education group held monthly for people with lupus and their families/friends.