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All About Telehealth for Lupus
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2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
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Lupus Video Center
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All About Telehealth for Lupus
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2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
or reprinted without permission from Healthgrades Operating Company, Inc. Use
of this information is governed by the Healthgrades User Agreement.
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A Husband's Perspective on Lupus
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Meredith's husband shares his experience on life as Lupus caregiver.
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The way I met Meredith, we went to high school together down in Peachtree City, Georgia. I was a senior when she was a freshman. So I kind of knew who she was. Then after college I was back in town for Thanksgiving and I ran into her Thanksgiving of 2007 and we went on a date November 30th, 2007. And we dated for four years and got married.
I think the first time I found out about her lupus was more about her... coming from her mother, kind of a 'make sure she's wearing sunscreen.' I was like, "Why can't you get sun?" because when I first knew her in high school she was always tan and everything. I started questioning why she had to wear a hat, and sunscreen, and everything and I found out it was lupus, which I didn't know anything about lupus.
When I first found out that she had lupus, I mean I wasn't really startled because I didn't know exactly what it was, and then just finding out from her more details, looking on the internet, it wasn't really a big deal, a big issue with us.
It's just, she'll wake up and be like, "Oh, I'm sore," and then it'll kind of go away after she starts walking around. Then getting dressed, she just kind of can't move her arms in certain ways. Her pain doesn't affect anything between us really. The only thing is she'll complain about some aches and pains here and there. I might have to put some kind of lupus cream on her shoulders.
Now that we're married, we're not staying out until 2, 3 in the morning anymore. The issues were more when we were going out before we were married, before we were engaged, in the wintertime because it's always worse in the cold weather for her.
The main issue that kind of scares me is what it's going to be like for her to be pregnant because I know people with lupus have issues. She might not be able to have kids, which would be a big deal, but there's ways around that, but that's kind of the biggest issue I see from it.
The only advice I would give someone is to listen to the complaints. Don't brush them off, because there really is pain and there might be a lot of complaints a lot of the time, but she's the one going through it and having the pain. So just be on her side.
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A Mother's Perspective on Lupus: Staying Strong
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Shurleen talks about the strength she finds to keep going for her daughter.
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When Heather was diagnosed with the lupus, I knew it was going to be difficult, but I didn't know it was going to be a rollercoaster ride. And my daughter has both types of lupus, acute lupus erythematosus and then she has the lupus in her organs. One time when she was in the hospital, we couldn't even touch her it was so bad.
First through sixth grade, she was very healthy. Then after, in her teen years, she started having headaches. I was losing patience because the doctors would say, "Well, there's nothing wrong. It's in her head." She's always had long hair. She said, "Mom, I can't get my arm up to brush my hair." And I said, "Heather, brush your hair. You know, get over it. Just brush your hair. You've got to go." She just couldn't do it.
We were, all the time, taking her to the doctor to find out what's going on. I thought she was a hypochondriac. And we actually went through three doctors before she finally accepted, "I have lupus." And her doctor now will tell her, "Heather, you have a disease. You have lupus. You have to be good to your body." And that's something that's hard for her, because she wants to push.
My husband's sister passed away at 42, Francis, and she had rheumatic fever as a child, but she also had lupus. And her daughter just died from lupus, I would say about six years ago. And then my sister had lupus. And she had the lupus erythematosus. And my mother, they say, had lupus. Even when we were at the hospital and she was swelled up, I felt pretty stupid because she ... why in the world the light didn't come on that it could be lupus?
The miscarriages were tough for me because the first one, Billy and Heather handled it on their own. The doctors said that the baby had spina bifida and lupus, and that it didn't look good. And that was on Monday, and on Thursday the baby died. And on that Friday, Heather had to go to the hospital. She had to go to the maternity floor and have the baby, have a D&C.
I wouldn't say my heart's breaking. It is when I'm watching my family suffer, but we have been blessed with so much. I've had Heather longer than I thought I was going to have her. There have been times when I didn't think that she was going to make it. My favorite movie to watch with Heather is Steel Magnolias. When I first saw that movie, it was a tearjerker, but now I just watch it and learn from it.
Well, the one thing that I think is important for anybody that has lupus, or any disease or ailment, you need to listen to your body. You need to plan. You can do what you want to do but you have to plan for it. And God is good. And I think he gives me the strength to keep going.
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A Physician's Perspective on Lupus
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W. Hayes Wilson, M.D. discusses lupus misconceptions, symptoms and lifestyle changes.
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The biggest misconception about lupus is that it's an old person's disease, and it's not. It's a disease of women of childbearing years, so anytime from menarche to menopause is really the chief onset of lupus.
Some people want the test for lupus, and there's not really a test specifically for lupus. There are tests that are associated with lupus.
From the head down, I usually start and say, "Have you lost any hair? Do you have any bald spots? Do you have ulcers in your nose? Do you have ulcers in your mouth? Have you had a seizure or been psychotic?"
What I tell my patients is, "Just because you're paranoid doesn't mean that people aren't out to get you and just because you have a positive ANA doesn't mean that you have lupus, but if you have the positive ANA and you have three of these other things that I've mentioned to you, then you probably have lupus."
Diet and exercise are so important for all autoimmune diseases, and the reason is this: the number one cause of death in the United States of America is cardiovascular death, and we all know that that's linked to diet and exercise. The Arthritis Foundation suggests that you do at least 30 minutes of exercise at least six days a week, and you can break that up. You can do 15 minutes in the morning and 15 minutes in the evening or 10 minutes at breakfast, lunch, and dinner, but 30 minutes a day is a great target for people, and something as simple as walking can have tremendous benefit.
When we're in a room together, there's only one person that can feel their pain, and that's the patient. They have to tell me what's going on with them, and then we work together to come up with a treatment strategy because not everybody wants to take every medication that's available. We have to find the medicine that's right for them. That's really personalized medicine.
The best thing to do in medicine is to find the person who has the greatest amount of experience and expertise in what your problem is, and sometimes you have to search for that. Sometimes that comes from a lupus support group or from somebody that you know that has lupus and say, "Do you like your doctor? Does he spend time with you? Does he explain things so you can understand it?" because lupus is unacceptable. Lupus is a disease that we can't just allow it to happen. We have to treat it as vigorously as possible and we have to find a cure. It's kind of what Sir William Osler said, really, arguably, the greatest physician of all time. He said, "The only thing that makes the practice of medicine work is faith," and he meant faith in your doctor, faith in his treatment, and faith that you can and will get better. I think a state of mind is very important for patients with significant autoimmune diseases.
At the end of the day, the thing that really matters to me as a doctor is for somebody to be better, to get better, to have a better life, and when a patient comes back and says, "I was sick. You made me better. You changed my life," that really means a lot to me. That's what makes this job worthwhile.
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Learning to Accept Lupus
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Meredith talks about how life has changed with Lupus.
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It was the oddest thing. I was fine my whole life until I went to college. First semester, I was fine. It was about second semester when I started, my fingers were swelling, I'd wake up and my face was just very big and puffy and red and I thought well, maybe my birth control's... I need to drink more water. It was just really odd. So, I just tried to work out a little bit more.
It was actually one day that I woke up out of bed and I swung my leg over to get off the bed and I was like, "I can't move." And it was my knees. It finally got to the point to where it was so extreme, I couldn't bend over, I couldn't open up a Coke can. At first I was kind of hesitant to say anything to my parents because I knew they would freak out like, "What are you doing?"
I kind of showed them like, I can't... This is as far as I can bend. I could only go to here with my elbows. It never even crossed my mind that it could be even a disease. I thought I just had a virus, arthritis or it was something that I could take a pill, like some Advil, and I'd be okay. We went through all the tests, took my blood and all, and when we found out my numbers, my blood tests were so high and my ANA was, like, triple what it was supposed to be. My joints, my hands were horrible and he's like, "You have lupus."
We were all just kind of like, "What?"
I've pretty much had to have a lifestyle change. Coping with lupus, I'm in a lot of pain most of the time so I go to the gym a lot. I changed my diet. I try not to complain too much because I don't want to be one of those, like, "Oh, she's always complaining. What's wrong now?" But, it was around Christmas. I was laying on the couch, my hands were killing me, my shoulders were hurting, and I was just crying because of the pain and he kind of understood and was just sympathetic and, "What do you need? How can I help you?" Because he actually saw it firsthand.
I used to get really frustrated like, "Why me?" Like, "All my friends are going on spring break, going to the beach. I can't do that." That would really frustrate me. Now, I still get angry but I've learned to accept it, that this is how it is, and it's realistically not going away. So, I just have to kind of alter my life, the things I do, my activities and just be blessed that I'm here and it could be a lot worse. It could be attacking my organs or something.
People look at you differently and I want to just show, like, I can interact and be like every other 25-year-old. I may have this disease but I'm still like, I get through it. At first I was angry that this happened to me and I was so young. So, I probably didn't take care of myself as much as I should have, as far as staying out of the sun or getting enough rest and so, I wish I wasn't so stubborn and I had listened to my doctor and just taken the right steps to live as easy as possible.
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Letting Go as a Lupus Caregiver
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Marie Rich talks about her struggle to let go as a lupus caregiver.
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She loved make doll clothes. She would take clothes, like old clothes that she wasn't going to use anymore, or I was going to throw away, and she would cut them up and she would make them for her dolls, and she loved doing that and she was very active.
The problems with Meredith started when she was about 19. She had gone off to college, and I remember her calling me, just never complained much, but she said, "Mom, I'm waking up and my face is swollen. My knees really hurt. My knees are killing me." It just got to the point where I just couldn't say anymore, "You're just not taking care of herself." Because in my point of view, she was at college and she wasn't taking care of herself. She was staying up late, and not doing what she was supposed to do.
We were extremely fortunate because we went to the internist and he looked at her hands and took a couple of her ... you know, looked at her knees and then talked to her a little bit and said, "Well, in my opinion," and this was with no labs, "it's either RA or lupus." So he sent us to a doctor, it was a very bad experience for us. She came to a conclusion that it was RA, and started naming off all these medicines and what they were going to do and one of them was a medicine they use for chemo. I was like, "No. We're not going to do that. We haven't even had any labs yet. There's been no blood work, and we're talking about medicines that they give people with cancer."
We were all frustrated at that point, I didn't want to see Meredith in any more pain. I wanted answers. I needed answers.
Her symptoms are relatively under control right now. I did see her when she wasn't on medication, and it was extremely painful. I just hope that the medicine will keep it at bay and that she will be able to maintain a normal lifestyle.
I guess my advice would be to try to give them all the tools that they can. When they have the tools, when they have the knowledge, when they know their limitations, I think that it makes it a lot easier to let go. I don't know that I am going to be able to 100% let go. It helps me to see Meredith managing her lupus, and taking control of the things that she needs to take control over. She is an extremely brave woman. She's not a girl anymore. I admire her, and I see her growing up and changing and really taking this disease and learning to live with it.
I wish someone would've told me that lupus is different with every single person. That everything you read isn't going to happen. It's like a ticking time bomb in some people. Some people, they call it the disease, it's the snowflake disease, no two snowflakes are alike. Well, no two people with lupus are alike. Everything that happens with another person might not necessarily affect you. I wish that someone had told me that it really is a very unique disease, unique to each person.
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One Day at a Time With Lupus
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Heather shares her struggle with life after being diagnosed with lupus.
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I'd always have little aches and pains that no one else seemed to complain about, but after riding my bike, hanging out with my friends, I would seem to just want to go home and go to bed. I didn't really say anything. Mom may have noticed, but I don't think anything was ever said.
Mom and Dad had taken me to a neurologist and after doing several tests on me, he took my parents to the side and said, "There's nothing wrong with your daughter. She just wants attention." And when they told me this, I just thought ... I just cried. I said, "Mom, you know me." That started a really bad depression. I felt just all-over extreme pain. It was out of control.
The next thing I know, I wake up in the hospital and Mom and Dad are there, and seven days later I'm diagnosed with lupus. I didn't know a whole lot about it, but I was aware of what lupus was, because I knew that my father's sister had had lupus, and that my mother's sister had suffered with lupus, as well.
That was such a happy day. I know I cried. I was so happy. I remember looking at Mom. I was so happy and I said, "I'm not crazy." My mother told my fiance that it was going to be a rough road ahead, that he needed to read up on lupus, because she had been through this and it was just going to be really tough. I remember him saying that, "It's too late. I love her. We're going to do this, whatever she wants to do."
And I got to the point where, "You're going to have to go into the hospital. We can't do this at home anymore." And that's when the flare got as bad as it did, and I was disabled and put in my bed for about two years, and I ballooned up to about 340 pounds with all the medication and the prednisone, and all the medications that it takes to just keep my lupus activity, to get back to as much quiet and rest as you can get it to be without affecting my organs anymore than I had already stressed them out.
We kind of cuddled up and he told me how much he loved me and he went on to sleep. Well, in the middle of the night, I woke up and I saw one of our little dogs laying on his chest, and it turned out he passed away in his sleep. He had had a heart attack. He was 30 years old. I remember calling 911 and they wanted me to help, get him on the floor, and I couldn't. I couldn't move my body. I couldn't help myself, much less help my husband. And that was really hard.
It's been 12 years since I was diagnosed, but 10 years of those 12 years, I was in the bed, suffering with the lupus, grieving over my husband, and now it's a new beginning for me. I have a new husband of just over a year. His name is Julian. Very blessed to have him. He motivates me to get going and he is a very active man.
I have a system. I've had it for years, even as a teenager. I keep the same routine now. I wash my face, brush my teeth, gotten back in the bed to put on my makeup and do my hair. My clothes are laid out. I do everything I can while I'm standing up, but when I go to sit down to do my hair and makeup, everything else is done in the bed, or my husband will bring it to me, whatever I need.
My dreams are to do fun activities with my husband. And my dreams are his dreams, and we just talk about doing great things and making the house better and just doing things together with somebody. I just want to be happy and married and rocking on that front porch with somebody and growing old with somebody and not being alone. And if I do have some bad days, I'm not going to be alone having those bad days.
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