#TalkAboutIt is our new Q&A series where we feature lupus warriors, health care professionals, caregivers and other experts in their field. The more we talk about how lupus impacts our daily lives, the better armed we are to battle this cruel and mysterious disease.
No one should fight alone... so let's talk about it!
Ana Sofia Membreño-Stuart
Outreach and Support Coordinator at Lupus Foundation of America, Florida Chapter
1. What does living a healthy lifestyle mean to you?
Living a healthy lifestyle for me means eating the right foods to nourish my body and getting in some exercise. I love to run, dance, and lift weights. I completed the Virtual 6 Challenge and look forward to walking this year's Virtual Walk to End Lupus Now on 10.10. 20.
Why is it important for people with lupus to eat well and be as active as they can?
I think it is important for people with lupus to eat well and be active because it helps you feel better both physically and mentally. Food plays a very important role in how your body reacts and offers important nutrients that people with lupus need. Being active can help reduce inflammation, it strengthens our muscles and helps out our joints. Being active and eating a well-balanced diet is also great for your mental health, especially in dealing with daily stress. Which people with lupus should control.
2. Do you recognize changes in disease activity when you are being active and making good eating choices?
Yes, I do recognize that my disease activity is pretty mild when I am eating a well-balanced diet and keeping myself active. But I also know when I do too much exercise or I am not eating as well my disease activity tends to get worse. Usually, I get headaches and my joints start to ache and I feel very fatigued and I tend to get "lupus fog".
3. Eating healthy is highly recommended for people with lupus. Do you have favorite healthy food tied to Hispanic culture?
I really enjoy eating beans, tortillas, avocados, and ceviche. In Latin American culture we usually tend to eat a lot of our native fruits. So I enjoy eating a variety of those.
4. Advice for people with lupus that may find it hard to get active or make other healthy choices?
My advice for people with lupus who may find it hard to get active or make healthy choices is to start off slow and little by little you will start implementing it into your life. Not to stress out if you do not feel good to exercise just do your best to move your body when you can. Always consult with your doctor if you are starting an exercise routine that may trigger your body to become under stress an also if you are unsure of what foods to eat for your specific needs consult with your physician or a nutritionist. We must also remember each lupus patient is different and responds to exercise and food differently.
1. ¿Qué significa para ti llevar un estilo de vida saludable?
Para mí, llevar un estilo de vida saludable significa comer los alimentos adecuados para nutrir mi cuerpo y hacer ejercicio. Me encanta correr, bailar, levantar pesas y hacer diferentes tipos de ejercicio.
2. ¿Por qué es importante que las personas con lupus coman bien y sean lo más activas posible?
Creo que es importante que las personas con lupus coman bien y se mantengan activas porque les ayuda a sentirse mejor tanto física como mentalmente. La comida juega un papel muy importante en cómo reacciona su cuerpo y ofrece nutrientes importantes que las personas con lupus necesitan. Estar activo puede ayudar a reducir la inflamación, fortalece nuestros músculos y ayuda a nuestras articulaciones. Mantenerse activo y llevar una dieta balanciada también es excelente para la salud mental, especialmente para combatir el estrés. Qué personas con lupus deben controlar.
3. ¿Reconoce los cambios en la actividad de la enfermedad cuando está activo y haciendo buenas elecciones de alimentación?
Sí, reconozco que la actividad de mi enfermedad es bastante baja cuando sigo una dieta bien balanciada y me mantengo activa. Pero también sé que cuando hago demasiado ejercicio o no estoy comiendo muy bien, la actividad de mi enfermedad tiende a empeorar. Por lo general, tengo dolores de cabeza y me empiezan a doler las articulaciones y me da mucha fatiga y tiendo a tener lo que llaman,"niebla lúpica".
4. ¿Tiene una comida saludable favorita relacionada con la cultura hispana?
Realmente disfruto comiendo frijoles, tortillas, aguacates y ceviche. En la cultura Hispana solemos comer muchas de nuestras frutas nativas de nuestros paises. Así que disfruto comiendo una variedad de frutas.
5. ¿Un consejo para las personas con lupus que pueden tener dificultades para mantenerse activas o tomar otras decisiones saludables?
Mi consejo para las personas con lupus que pueden tener dificultades para mantenerse activas o tomar decisiones saludables es comenzar lentamente y poco a poco comenzará a implementarlo en su vida. No se estrese si no se siente bien para hacer ejercicio, haga todo lo posible para mover su cuerpo cuando pueda. Siempre consulte con su médico si está comenzando una rutina de ejercicios que pueda provocar que su cuerpo se estrese y también si no está seguro de qué alimentos comer para sus necesidades específicas, consulte con su médico o un nutricionista. También debemos recordar que cada paciente con lupus es diferente y responde al ejercicio y a la comida de manera diferente.
LFAFL Lupus Ambassador
1. First off, we are so sorry you had to go through this. How are you doing?
I am feeling so much better. Most of my symptoms have cleared up, however, I am having severe lingering chest pain and I don’t believe my lungs have healed. I am out of breath by just walking to my mailbox —I think this will take some time to fully recover from.
2. Can you tell everyone a little bit about your lupus? When were you diagnosed? Do you have organ involvement? If you wouldn't mind sharing, what medications are you currently on?
My story with lupus is long and complicated, like many patients. Every portion and system within my body has been negatively impacted by lupus. It is hard to find a way in which my life hasn’t been affected, physically, mentally, and emotionally. I was diagnosed when I was 12 years old. It took several years (about four) to be diagnosed, with many false diagnoses in between, and a lot of doubts even after the fact. I was in and out of a wheelchair as a kid, experienced chronic, excruciating pain throughout my entire body. I missed at least three consecutive years of primary school. My family was affected, my mom had to change jobs to take care of me, and my siblings lost out on a lot of childhood activities because they were acting as my caretakers as well. Attending Boggy Creek Gang Camp (a specialized camp created specifically for children with life-threatening illnesses) is what saved my childhood and was the only time and place that I felt “normal.” During that time, I gained and lost extreme amounts of weight, lost control and use of different parts of my body, my hair was falling out, I was in unbearable amounts of pain throughout my entire body, and my world consisted of doctor’s appointments, medication, ice and heating pads, physical therapy, hospital stays, isolation—thank God for books. I emphasized my childhood so much because it was traumatic, even when I did experience the rare times of remission, I still didn’t feel “normal” because I lived with this constant fear of relapse. I was able to return to school in my teen years. I suffered through many different symptoms and issues related to lupus, but they seemed minor compared to my past experiences. It wasn’t until college that my lupus became very active again. I experienced a resurgence of the unmanageable joint pain—again my entire body was affected, literally, from head to toe. I tried different chemotherapies, biologics, NSAIDS, medication after medication, doctor, and specialist after specialist. My entire musculoskeletal system was affected, at times the pain was unbearable, not only in my joints but within my organ system due to swelling. My lungs, kidneys, and heart were, and still is, affected. I experience a lot of brain fog and loss of memory (which, as a college professor, is devastating). This routine continued to evolve, and some highlights include surgery on both knees, a heart attack on my 25th birthday, and cataract surgery. I developed Cushion’s disease and osteoporosis; I fractured two parts of my spine, have severe bone erosion, and almost went blind. Currently, I am taking xeljanz, Hydroxychloroquine, Gabapentin, diclofenac, omeprazole, Ambien, tramadol, and Cymbalta.
3. When were you diagnosed with COVID-19? What was that process of being diagnosed like?
I was experiencing symptoms for several days before realizing that I could possibly have COVID-19. It then took about a week to actually be tested. The shortage of testing availability was nerve-racking, appointments were filled days in advance, and they would quickly run out. It was almost impossible to find a place that was offering to test, eventually, I came across an urgent care with availability. It then took six days for my test to come back positive.
4. What were your symptoms? Did it feel different than a bad lupus flare?
I had general cold-like symptoms, sore throat, congestion, headache, general achiness, and chest pain at the beginning. I was sick the month before, and because of lupus, whenever I am sick it generally lasts for a long time, so I didn’t think anything about having minor cold symptoms. Also, chest pain isn’t rare for me. It wasn’t until I started to become short of breath that I started to worry and seek out COVID-19 testing. Achiness, joint pain, and fatigue are common for me, so I tend to downplay those symptoms. However, it went beyond the feeling of a lupus flare when I was struggling to breathe and unable to talk and had to gasp for air at the same time.
5. How did they treat you for COVID-19?
I was given a strong antibiotic, steroids, an inhaler with steroids, and told to take some over-the-counter decongestion to treat COVID-19. I was already taking hydro… I was given another round of antibiotics and steroid regiment two weeks later.
6. What would you like others to know about your experience?
Having COVID-19 was scary because the virus seems so unpredictable. The lack of testing availability was beyond frustrating—between experiencing symptoms for about 4-5 days, actively seeking a location offering tests for a week, then waiting six days for the results amounted to almost three weeks of waiting. Gasping for air and being isolated from my family was a frightening experience. I was scared and warned not to go to the hospital because I’m immunosuppressant; I’m thankful that it didn’t worsen. When the pandemic first reached the US, I was told to still report to work, despite the fact that I was on medication that made me susceptible to all illnesses and being immunocompromised. Also, I was unable to get Hydroxychloroquine because of individuals hoarding the medication. These two situations combined makes me question the society that put my life at risk.
7. Do you have any messages for other lupus patients? general public?
Be kind. Be considerate. Stay home. Everyone is at risk, COVID-19 does not discriminate; however, for the immunocompromised, the threat is heightened. I keep reading that COVID-19 is just a “flu,” but the flu has never left me gasping for air.
South Palm Beach Lupus Support Group Facilitator
1. How long have you volunteered with LFA, Florida Chapter?
2. How did you get started volunteering with LFA?
Initialed served on the Board of Directors, campaigned in Fundraising, then felt compelled to help others through support groups.
3. What do you love most about volunteering?
The ability to help others, especially at a time when they are most vulnerable, possibly scared or worried. I can apply my many life "adventures" of living daily with lupus and have experienced this in the corporate world, family life, and my own personal journey.
4. Why do you think others should get involved?
I feel a sense of accomplishment in helping others and being involved in a wonderful cause to help others is so self-satisfying that it helps to relieve stress. What if one small thing I might have said, done, or offered made a huge difference in one person's life-then it's all worth it.
5. Do you or have you volunteered with other organizations?
I am beginning to work with Hospice (Trustbridge) and trying to work toward personal coaching.
6. Has volunteering had an effect on the way you approach other areas of your life?
By volunteering, I feel better about myself and since I am able to help others, they are helping me in return. I am more aware of finding ways every day to be a better person.
7. Have you had to make changes in your volunteer activities do to the COVID-19 situation? Please explain.
Currently, we are unable to hold our monthly support group meetings, so I am facilitating those through video conferencing. I am responding to questions via email and text from some of the members of my support group as well.
Danine Fruge, MD
Medical Director Pritikin Longevity Center + Spa
Miami, Florida www.pritikin.com
Dr. Danine Fruge graduated from Louisiana State University School of Medicine and completed her Family Medicine residency at Florida Hospital, Orlando, Florida. In 2003, upon completion of her board certification in Family Practice, Dr. Fruge joined the Pritikin Longevity Center and Spa team.She was appointed Associate Medical Director in 2008 and Medical Director in 2018. Dr. Fruge often serves as a medical consultant for local and national media, and is considered a leading expert on healthy living, mindfulness, nutrition, and fitness.
To her patients at Pritikin, Dr. Fruge brings the enthusiasm and expertise of a doctor who practices what she preaches. Throughout her life she has enjoyed a diet abundant in natural, nutrient-dense foods like vegetables, fruits, and lean protein. Dr. Fruge is an avid exerciser and athlete with advanced training in nutrition, metabolism, and performance medicine. As an undergraduate, she received a full NCAA Division I tennis scholarship and over the years has served as a tennis teaching professional at several country clubs. With over 20 years of experience, Dr. Fruge specializes in disease prevention with a focus on healthy lifestyle and mindfulness to heal the often reversible causes of chronic disease states. She is married with three sons, ages 20, 15, and 8 and makes her home in Jupiter, Florida. .
1. Living healthy during a pandemic can be challenging. What habits do you recommend to help me feel well during this time?
Creating a consistent, flexible routine of healthy habits is a very important way of managing stress and maintaining an overall sense of well-being even in times of rapid change and uncertainty. Key habits include maintaining a realistic perspective, a nutritious eating plan, movement more than sitting, regular rest periods, and healthy ways to frequently experience comfort, reward, and stress relief. One of the most important habits to keep you well is to think of three things for which you are truly grateful at least three times a day. This habit can easily become routine—just remember to be thankful at meal and snack times. If you have developed the unhealthy habit of worrying or automatically imagining the worst case scenario, with a little but consistent investment of time, you can learn to intentionally follow every negative thought with a positive truth—this yields high dividends for your health. Multiple longevity studies have shown, that when you wake in the morning, if you focus your first thoughts on gratefulness (before getting out of bed), and train yourself to end your day with thanksgiving (your last thoughts before you go to sleep), you can significantly improve your sleep, your immune system, your sense of well-being, and add years of good health to your life even in the midst of challenging circumstances.
2. I have been reading a lot about the importance of good sleep habits for staying healthy. Please outline your recipe for a healthy sleep routine.
Consistent good quality sleep is one of the most important habits you can cultivate to boost your immune system, improve healing and recovery, to improve physical and emotional energy level, to assist in learning, creativity and memory, and to promote well-being and overall health. The recipe for healthy sleep first calls for a commitment to maintaining the habits required for the body to achieve restorative and productive sleep. It is well known that what happens during the day absolutely influences how you experience the night. If you experienced any stress today, you need to find a healthy way to release it before bed or it can negatively affect your sleep tonight. While numbing our emotions by drinking alcohol and eating comfort foods before bed may ease our stress, these common habits can interfere with good quality sleep and lead to other health problems, such as weight gain (particularly dangerous belly fat), which can cause increases in inflammation, blood sugar, cholesterol, blood pressure, and decreases our immune health. Healthy ways to relieve the emotional pressure that has built up throughout the day include: relaxing movement (walking, biking, stretching), mindful breathing, a calming shower or bath, playing an instrument or listening to your favorite music or soothing sounds, using soothing fragrances and essential oils (lavender), watching a feel-good movie or comedy, reading, listening or telling stories, meditation, journaling, prayer, and counting our many blessings instead of sheep. If you have difficulty with insomnia, it is paramount to teach your body how to transition more easily to a sleepy state by consistently following a healthy sleep routine and regular schedule. Try not to deviate more than 90 minutes from your usual sleep and wake times. After relieving your stress as detailed above, about two hours before bed lower the lights and the volume in the room, disconnect from electronics unless you have a sleep timer on your television, do not engage in any intense problem-solving or disturbing activities such as watching the news, answering emails, serious discussions or difficult decision-making. Do not work in bed, better to move to a comfortable chair. If you cannot sleep, it is best to get up and only go back to your bed after you feel sleepy again. A great evidence-based resource to help is CBTI (cognitive behavior therapy for insomnia). If you have been practicing healthy sleep habits for several weeks and still feel tired, you may have an important sleep disorder called sleep apnea, which can be corrected with specific treatment but cannot be corrected with healthy sleep habits alone. Sleep apnea means your body is not receiving enough oxygen during sleep and will eventually cause damage to your brain, heart, immune system, and general health. Symptoms include not feeling refreshed upon waking despite sleeping regularly 7 to 8 hours per night, falling asleep in the afternoon, needing daily naps, awakening with a dry mouth, unexplained weight gain, elevated blood pressure, heart palpitations, increased nighttime urination, brain fog, and memory loss. Untreated sleep apnea can cause a poor quality of life and serious health problems, including atrial fibrillation and heart disease, stroke, dementia, obesity, diabetes, hypertension, and sometimes sudden death, especially when untreated sleep apnea is combined with alcohol and sleeping medication. Because good sleep is critical for your health, it is very important to consult a sleep specialist and do not give up until you find the sleep improvement you need.
3. Fresh fruits and vegetables may become scarce. How would you suggest we maintain a healthy diet with the necessary vitamins/minerals?
Flash frozen vegetables and fruits without the seasoning packets are very healthy. Dried fruits, vegetables, and herbs can be nutritious, but understand that dried fruits can lead to weight gain, as they are usually over-consumed, due to their very small serving size that does not relieve hunger when eaten alone without whole foods. If you must eat canned fruits or vegetables, you can rinse them to remove excess sugar and salt. Avoid pre-prepared shakes and juices because they often contain far too many calories, sugar, fat, and salt to count as a healthy serving of fruits and vegetables. If you do not have a weight issue, you can consume blended vegetables with a little fruit in a drink that you prepare yourself with no additives. Depending on what happens, we may all learn to grow some fruits and vegetables at home even in pots or hydroponically.
4. Are there any foods that a lupus patient should avoid to help their immune System?
Due to their inflammatory effects, it is wise to stay away from processed foods that have additives, preservatives, food dyes, added sugar, added salt, and fats—such as dairy, cheese, trans fat, excessive oil, and animal fat. It is safer to build your eating plan around vegetables and lean sources of protein with customized portion sizes of starches and fruits for healthy weight maintenance. Minimize sodas (even diet), alcohol, and pre-prepared juices. Minimize packaged or pre-prepared meals. Educate yourself on how to order healthy foods from a restaurant. There is some research suggesting that patients with autoimmune disease may benefit from avoiding plant lectins, gluten, and foods that contain FODMAPs. You can try a different meal plan for a two-week period to see if you notice any improvement in autoimmune symptoms. If not, it is better not to restrict nutritious foods because eating a variety of vegetables may be more beneficial.
5. Are there any foods that have the potential to strengthen my immune system in this time of crises?
Garden vegetables such as green leafy foods of all varieties, broccoli, cauliflower, beets, cabbage, brussel sprouts, celery, sweet potatoes, mushrooms, and garlic. Whatever vegetables you tolerate best, aim to eat all the colors of the rainbow—eating every color at least once a day—aiming for 5 to 10 small servings of veggies/day for your best health. If you are deficient, it may be beneficial to supplement some vitamins, minerals, and probiotics to fortify your immune system. It is very important to discuss your supplements with your doctor as well as vet them with reputable resources such as consumer labs.org, vitamindcouncil.org, and drugs.com to check for quality, purity, and possible drug interactions.
6. Due to the current coronavirus situation and the stay-in-place order, what are some ways people can get daily exercise?
Walking, biking, dancing, toning bands, seated chair arm rowing, stretching, gentle Pilates, tai chi, yoga can all be enjoyed indoors or outdoors. If you are able, exercising outdoors has additional stress-relieving benefits especially if you are near plants, trees, a fountain, pool, or any body of water. If you cannot go outside, you can still receive some of these health benefits by decorating your workout area with indoor plants and fountains, relaxing music with nature sounds, flowing water, etc. If you prefer exercising in a group, there are plenty of online classes and personal trainers with enough variety to keep you going for months.
7. How does a person avoid loneliness and depression while social distancing?
Staying connected through phone calls, texts, live stream, chats, and all the online technology that allows us to see each other, can relieve our feelings of isolation. Anytime we perform acts of kindness for another life, including caring for a plant or pet, is powerful medicine to prevent depression. Movement, prayer, and meditation have been shown scientifically to release natural chemicals that elevate mood. Exercising with another person or pet has a double benefit. If you are no longer fond of the sounds of silence, which can be healthy at times, turn on some background music, talk radio, documentary, or podcasts to fill the air with human connection that is uplifting and not toxic. Avoid central nervous system depressants such as alcohol.
8. How are you and your colleagues responding to the needs of your patients during this time?
I continue to encourage my patients to choose to maintain a healthy perspective, find creative ways to adapt to the rapid continuous changing circumstances. Reach out and pray to our God, our loving source of protection, providence, healing, acceptance, guidance, peace, and contentment. Throughout history humans have overcome tremendous challenges and not only survived but have even found a greater appreciation and significance in their life. For the safety of our fellow man, the Pritikin center is temporarily closed. We are offering online education through our website at Pritikin.com, Facebook, and Instagram posts. Topics include nutrition, meal planning, exercise videos, behavioral health, and cooking classes. One-on-one virtual consults are also available for nutrition, behavioral health, and exercise training.
A Poem of Hope:
Count your blessings instead of your crosses.
Count your gains instead of your losses.
Count your joys instead of your woes.
Count your friends instead of your foes.
Count your courage instead of your fears.
Count your laughs instead of your tears.
Count your health instead of your wealth.
Count on God instead of yourself. -Author unknown.
Robert H. Phillips, Ph.D., is the founder and director of the Center for Coping. He is a licensed psychologist who has been in private practice since 1975 and who has, throughout his career, published and spoken widely on coping with physical ailments and other psychological topics. Dr.Phillips has published more than 40 books, has presented over 500 papers and talks at seminars, conventions, and meetings throughout the United States and internationally. He has served on the Boards of Directors of the National Lupus Foundation of America and the Nassau Chapter of the American Heart Association. Dr. Phillips currently serves on the Board of Directors, and continues to serve on the national scientific advisory boards of, and is the psychologist for a number of major and national organizations.
The Center for Coping and Dr.Phillips' work has been the focus of many articles and stories in numerous professional journals and magazines such as Medical Times and Prevention. The Ladies' Home Journal, Vogue, and Essence magazines have also featured his work. Coverage in national and local daily newspapers includes the New York Times, Newsday, and the New York Post. Dr.Phillips has appeared on dozens of television and radio programs, and, since 1991 has been the long-time host of "Coping Conversations", a popular nationally available audio-streamed radio talk show (www.copingconverstations.com), now available as a "Coping Conversations" podcast on your favorite podcast app.
1. Everywhere in the news, I see the panic and it increases my own fears - what can I do? How do I deal?
It is understandable that anxiety increases when it seems that everything you see on the news has to do with the coronavirus. Here are a few suggestions: limit the time you spend during the day getting your news; rather than watching the news on television, try to get your news online-- in this way you can select those headlines that you want to read more about; and consider selecting a designated family member to review the news and to share anything of note with you so you're not inundated.
2. What are some lupus-friendly mindfulness techniques I can practice at home?
Relaxation techniques are always helpful. Not only can they diminish the anxiety you feel about the coronavirus crisis, but they will help to reduce anxiety in general. This can help you in a number of ways, not the least being to help with pain or other symptoms. Schedule times to work on your relaxation techniques. Don’t wait until you “feel like it” because that increases the likelihood that it won’t happen! Also, work on your thinking. That's something you can improve. There are plenty of negative thoughts occurring because of the coronavirus crisis, such as worrying about being more vulnerable, or not getting your medications. Work on those negative thoughts- focus on more realistic, positive responses about what you can do rather than the bad things that may (or may not!) happen. www.coping.com/quickrelease
3. How do I talk about coronavirus and its risks with my young child?
As with anything else that might be scary to a young child, provide information solely on a need-to-know basis. You don't need to give lots of details. You can use such tidbits as, "Right now, we’re just not going out as much as we normally would," or, "There are a lot of people who are sick outside so we are going to stay inside so we can stay healthy." If somebody in your family does get the coronavirus, again you’ll provide only the most basic of information necessary. Young children don't understand the difference between a regular cold or flu and the coronavirus, so your conversation can focus on what is necessary in terms of medication, other treatment, rest, etc., as with any other illness. And, a final reminder, be calm and in control when you talk with your child.
4. How do I emphasize the dangers of the virus to my teenager especially if their friends aren't taking it seriously?
You may need to use something like the old standby, “If your friend jumped off the roof does that mean that you should too?” Try to impress upon your teenager that there's a right and wrong way of practicing social distancing and self-care, and. even though your teenager may be dismissive, you have confidence that they'll do the right thing. This does need to be a calm conversation, though, at a neutral time (as opposed to trying to grab your fleeing teen as s/he is walking out the door). If necessary, because your teen seems to be disregarding proper standards of current self-care, you should try to use outside resources such as online articles or expert opinions, rather than yourself to get your points across.
5. How do I help my children transition from the classroom to online learning?
Many children, young and old, are used to playing games online. This may smooth the transition to online learning. Teachers are doing an incredible job of trying to make online learning interesting and appealing for students at home. However, for younger children, less experienced with the discipline necessary to participate, it would probably be helpful for you to attend a lesson right along with your child. Help them learn what to do and doing what’s asked of them. If you encounter difficulties. or have additional questions or concerns, you may want to speak to your child’s teacher about better ways of transitioning.
6. How do I cope with the worry of family/friends living in virus hotspots?
This is difficult because it's understandable to feel anxious because of helplessness. So if you find yourself worrying, keep asking yourself if there's anything that you can do about it? If the answer is no, try to put your worries "in a box," and focus on other things. Yes, you know periodically they will come out and affect you, but you want to avoid giving in to prolonged worry about something that's out of your control. It can be helpful to be in touch more frequently with loved ones in hot spots. Make sure that they are monitoring their own symptoms and know they can reach out to you if necessary.
7. I'm beginning to get cabin fever-how can I feel happier during this confinement?
We always feel better when we accomplish something. Being confined at home can make that more difficult. However, there are always plenty of things that we can do. Help yourself by making a list of the things that you’d like to accomplish, especially things that you wouldn't normally have time to address. Your list can include chores as well as fun activities. In addition, try to schedule specific times for these activities. This works better just waiting to see if you feel up to it.
8. How do I find common ground with friends/family who only wants to politicize the virus?
Dealing with politicizing can make the whole virus situation even more unpleasant. One way to try to deal with this is to suggest a compromise. You’ll acknowledge that you're not going to stop people from politicizing the virus; however, you can request that only a certain (small!) amount of time be devoted to it before changing the subject. As with any type of disagreements, the goal is to come up with a win-win solution.
9. For those of us with chronic coughs or allergy symptoms, how do we deal with the stigma of outward symptoms when in public?
Unfortunately, people are going to look at you with suspicion if you cough or show other allergic symptoms when you’re out in public. (And that might be an understatement!) All you can do is express immediately that you're not sick, these are allergies and they have nothing to worry about from you. However keep in mind that there may be people who avoid you anyway or question why, even if they're allergies, you’re not wearing a mask. There isn’t much that you can do about people who don’t understand or people who give you a hard time. Try not to take it personally (even though any attack may seem personal. Remind yourself that they're scared too. All you can do is be calm, (hopefully) understanding, and reasonable!
10. There is a possible shortage of the drug I take to treat my lupus. Even though I know LFA and others are working to prevent this, I am still scared. How do I keep the stress level down to prevent a possible flare?
You know that stress can be one of the risk factors for possible flares. Therefore it is important to keep your stress level down because at least this is something that is more within your control. Recognize that it's normal for anxiety-inducing thoughts will pop into your head periodically. It's sort of hard to avoid during this time! But recognize that your stressed reaction is because of negative thoughts so it's important to address them as realistically (and more positively!) as possible. In addition, use relaxation techniques to keep your tension lower, distracting yourself by doing other things, or, in short, use any of the normal stress management strategies that you have found helpful in other difficult times.
Paul Steidle, RPh
Paul Steidle is a registered pharmacist, licensed in Florida as well as in New York. After earning his Bachelor of Science from Long Island University- CW Post, Arnold Ray Schwartz College of Pharmacy, Brooklyn, NY, Mr. Steidle began working as a staff pharmacist for CVS Pharmacy. He rose through the ranks of Pharmacy Manager and earned the title of Long Island District Manager before deciding to give up the harsh northern winters.
Paul Steidle takes great pride in his profession and truly enjoys helping the people he serves-whether as a retail pharmacist or through the Palm Beach County Pharmacy Association. When not working, you will often find him sharing his time and energy with other local organizations, practicing Tae Kwon Do, or relaxing with his family.
1. I take Plaquenil to manage my lupus. Will the medicine in my system protect me from the coronavirus?
Each day we learn more as the medical community worldwide treats COVID-19 patients, but at this point, we don't have the answer.
2. Since the release of the information about hydroxychloroquine and COVID-19, I have heard from many that can't get it and others who can only get a short supply. Do you have any suggestions? Have you heard anything?
Due to increased demand, there is a limited supply of Plaquenil at this time. It has been reported that Teva Pharmaceutecles will be supplying hospitals with Plaquenil, and the generic manufacturer, Mylan, will initiate production of hydroxychloroquine.
3. I have a 90-day script for Plaquenil, but the pharmacy only gave me a 30-day supply, am I on an automatic waiting list for a refill?
Some pharmacies are limiting their rheumatologist patients to a 30-day supply of hydroxychloroquine due to the limited amount available. Most pharmacies computer systems can set up automatic refills for maintenance medicines. I suggest communicating with your particular pharmacy regarding a waiting list.
4.If the pharmacy runs out of medication, as a lupus patient am I put on a waiting list?
Communicate directly with your pharmacy, as each company will have a different strategy. You may also ask if they will check other pharmacy locations for the medication.
5. If Plaquenil isn't available, can I substitute another similar medication such as chloroquine?
All patients should consult with their physicians regarding appropriate medications for their condition and continued health.
6. I am worried we will have a mandatory quarantine; can I stock up on my medications now that there is a State of Emergency? Will my insurance company give me a problem? How can my pharmacist help?
Florida is currently in a State of Emergency by order of the Governor. This relaxes the guidelines on how soon a medication may be refilled. Many insurance companies have provided pharmacies override codes for a "refill too soon rejection". Ideally, patients should always review their medications to insure a 2-week supply.
7. Are the pharmacist receiving any special training related to the COVID-19 situation?
There has been an abundance of information supplied to all medical professionals.
8. Will pharmacies remain open throughout the outbreak?
Pharmacies are an essential business that focuses on the health and well-being of the community. We hope to continue supporting those in need throughout this pandemic.
9. What steps are the pharmacies taking to help keep their customers safe?
Many pharmacies are implementing social distancing guidelines, establishing enhanced cleaning processes, education team members and customers, increasing awareness of services such as drive-thru, in-home delivery, curbside pick-up, as well as specific shopping hours for the senior community. Most pharmacies are also working with their suppliers to keep all items in stock- prescription and over the counter merchandise.
10. I heard that flu shots are a good idea, what are your thoughts? Is it safe to receive vaccines at this time?
There is proof that vaccines are one of the easiest methods of disease prevention. Sadly, each year we lose many individuals to complications from the flu. Everyone should have received their flu shot by now; however, the experts say it isn't too late. Please note, if you get your vaccine in March, you should not wait until March 2021 to receive your next flu vaccine-it is recommended that flu shots be received during the fall months.
1. Why do you walk to end lupus?
I found the Lupus Foundation of America and the Walk to End Lupus Now in 2011 when they had the first walk in Tampa. It was kind of perfect timing, I was diagnosed at the end of 2009 and didn't really a healthy way to deal with my diagnosis. I got really depressed, didn't have anyone to talk to who would understand what I was going through. It was a turning point in my acceptance of my disease. I continue to walk because I really enjoy the feeling of acceptance and understanding that you get from a bunch of people who are personally dealing with lupus, whether they have it themselves or they are there to support a friend or family member.
2. You've raised a lot of money over the years. How do you do it?
We've tried so many different fundraising ideas over the years. We realized early on that posting on social media & just asking for donations was only going to get you so far. My team has held bake sales and garage sales, I've done some sewing & crafty fundraisers with cross-stitch and drawstring backpacks, we've held wine tastings, we've done raffles, we've done team T-Shirts, we've held live auctions, and my mom does a big birthday party fundraiser every year (she ask for donations instead of gifts). Most of these take a lot of time and cost us some money, but the return has been incredible.
3. How do your friends and family support your walk goal?
My friends and family have supported me over the years, some have been there since the very beginning, others have joined more recently but they're always there to walk with us or donating what they, sharing our events to help our turnout, or donating items to our different fundraisers. I couldn't do what I do without each & every one of them.
4. What's your favorite thing about the walks?
I love meeting the people in person that I've come to know on social media. You feel like you know them already. There's something comforting in knowing you aren't alone & seeing all those people in purple at the walks just makes my heart full & takes my breath away.