“What supplements should I take?” is a question that I often receive. I look to vitamin supplements as my daily miracles and I used to take 20-30 per day. I have tried so many, too many to count, and experimented as any integrative practitioner would do! I have condensed my list down and have chosen five of my top essential vitamins to share with you. This list does not include any of my superfoods – another long list which includes chai seed, hemp, cacoa, maca and many others. Whether you have lupus or not, these supplements can surely help your overall health and well-being!
1. Vitamin D3:
This potent immune modulator calms your immune system and helps strengthen your bones by improving calcium and phosphorus absorption. This is crucial for avoiding osteoporosis. Many lupus sufferers avoid the sun to avoid a potential flare which can lead to a vitamin D deficiency. I suggest 2000-5000 IU per day depending on your blood levels. Ask your doctor to check this next time you have blood drawn.
2. Flax Oil:
This is one of the best anti-inflammatory supplements out there! Best taken after a meal, a nice dose is 2000-3000mg per day. You can also avoid the fishy burps by using flax oil instead. My favorite flax oil is from Barlean’s – Strawberry and Banana flavor!
This is so important especially for anyone who has been on prednisone or any form of a steroid, as it depletes calcium from your bones and causes osteoporosis. Magnesium helps with headaches, migraines, and alleviates muscle pains. It also regulates bowel movements.
This gem keeps me from getting sick while traveling or being in tight quarters in packed subways. I recommend 15 mg for staying well and 30mg if you feel a cold coming on. If you are taking immunosuppressants, I do not suggest taking zinc.
Found in yogurt, live cultures, without all the calories, probiotics balance good and bad bacteria in your gut. Taking an antibiotic will throw off the balance and possibly lead to an overgrowth of yeast. Prednisone can also produce yeast. Adding probiotics to your daily routine will prevent yeast infections and gas/bloating. It is best to take probiotics upon waking and at bedtime. I avoid taking FOS-(fructo-oligosaccharides) or inulin as it can cause loads of gas and bloating.
These top five supplements have all worked for me and I hope that this list will encourage you to give supplements a try. As with any health supplement, please consult your doctor first before taking any of the items I mentioned on the list. These supplements are not intended as a substitute for your doctor’s recommendations.
Doctors say that people with lupus cannot be in the sun. I still shudder when I hear the words, “You will never be able to be in the sun again.” I remember hearing those exact words years ago in my rheumatologist’s office years ago and leaving in tears. Being the ultimate sun worshipper, I heard this as a life sentence. How could I possibly live only indoors? No more sun, no more beach. This was too much for me to bear. Hearing that was worse than my diagnosis. I felt like a prisoner.
Next, I had to buy dreary clothes and hats for sun protection, which didn’t help the way I was already feeling about my body. Fat and in pain, I felt even worse in these awful-looking clothes.
That was 5 years ago. Today, I do go to the beach. I do not get a rash as I did initially. But I go to the beach prepared.
For those of you contemplating a warm getaway in the midst of this long winter, you may want some tried-and-tested sun protection tips. Here are my 5 beautiful options for those of you who love the outdoors and the beach:
1. Wearable sun protection: I have bought clothes from www.coolibar.com; the styles have really improved in the past few years. This kind of sunwear protection is especially important for those of you who are newly diagnosed or who get a rash from being in the sun.
2. Gorgeous brim hat: Another deal I found on www.coolibar.com. I wear it all summer long, at the beach or park. Most department store hats may not have the same level of sun protection as this one does – it shades your face as well. It’s worth the investment.
3. SPF: Yes, that white pasty lotion. I wear 50 -100 SPF if I know my skin will have any sun exposure. I use this high SPF especially at the beginning of summer. This includes lip protection, at least 30 SPF. To make sure that you stay protected, reapply your sunscreen every two hours if you’re walking or exercising outdoors. In general, individuals with lighter skin and light colored eyes have a higher risk of getting a sunburn.
4. Beach umbrella: I have one that I carry everywhere! If I take the subway to the beach, I drag my umbrella with me. It may seem so high maintenance to some, but I love having my own portable shade! Use an umbrella while walking outdoors. You can make a fashion statement with it. Just choose the right fabric, color, and design and make sure that it has UV sun protection.
5. Timing: Timing is everything, so I try to avoid the hottest and most potent sun exposure between 10am-2pm and head outdoors after 2pm. I won’t lie and say that I’ve never stepped foot on the beach in Miami at 11am, because I have, but I go prepared! All of the above goes with me and I rent an umbrella at the beach, too.
Some may gasp at the fact that I am even writing about going to the beach but I am here to share my journey with you. Now, I am not saying run out in the sun and lay out! I know what your specialists have told you. I am also not taking medications that make my skin super sensitive to the sun.
Keep in mind that lots of medications taken during a flare or even when not in a flare will definitely cause a rash. I also don’t think you should be out in the sun during a flare. Please be mindful of the sun and its powerful rays – and definitely no artificial sun bathing! I learned the hard way. If you really want to be tan (for a wedding or fun gathering), get a spray-on tan. It will last 7-10 days, longer if you avoid hot tubs and pools. The best spray tans are done by a professional technician who sprays your body, rather than just standing in a booth and getting sprayed by a machine. Bronzing lotions are also quite nice, though it can take some time to build up to your desired color. If you start early in the summer and use it daily, color will accumulate over time.
So there you have my tips to enjoy the summer sun carefully. What other tips have you tried that work for you? Do tell!
Until next time,
One of the delightful things I did not expect from my lupus diagnosis is the opportunity to connect with other women who want to share their stories, as this builds community and brings perspective to my journey. I would like to introduce you to an inspiring friend of mine, Lynn Lennon.
I recently had the opportunity to interview Lynn, a Registered Nurse from Virginia, to get the scoop on her health transformation. Since a large majority of lupus sufferers also have fibromyalgia (as I did), I was curious about her secrets that took her from leading a painful life to a powerful one. Her symptoms began about 7 years ago with pain in her shoulder, neck, hip and spine. Lynn began gaining weight and after hitting 220 pounds, she had to use a cane to get around. Only morphine along with multiple visits to the emergency room for pain would bring relief from her gripping pain. Then in 2007, she hit rock bottom, while suffering from severe headaches and taking care of 2 children, one with special needs. She seriously considered suicide. That was when she knew that something had to change.
At that moment, Lynn made a conscious decision to take control of what she was eating. She began watching every food she consumed, eliminating anything that wasn’t a whole food. She was inspired by author Ken Wilbur, who encourages making “changes in every sector in your life to get the life you want.” She read any and all books on health and wellness and soaked in every detail. She followed Wilbur’s Pillars of Homeostasis, which are to nourish, hydrate, and restore health. She began to feel tremendously better after just 6 weeks.
Lynn gradually began weaning off her pain medications and exercised slowly, even for just 5 minutes a day. Then she began to bike again and made a conscious effort to choose everything she did every single day. She changed how she moved and what she ate, started to meditate, and began to lose weight. With all of these efforts, her pain began to diminish. Her journey was remarkable and in 2011 she competed in her first triathalon.
Today Lynn eats clean, organic whole foods, little meat, and lots of salmon. She has also been checked thoroughly for food allergies. She is no longer taking any medications, no longer suffering from fibromyalgia and is weighing a healthy 140 pounds. Her mantra is “make good choices and good things will happen.”
The daily choices she had to make were not easy – these took not only strength but perseverance. Lynn changed every aspect of her life for the better and had not looked back since. I admire her focus, strong will, and fortitude. Her persistence led her to attain the kind of life that she and many of us who have been through a similar experience would like to have – a pain-free, purposeful life. Through Lynn’s story, I hope you too will find the courage to start making those good choices and begin your journey towards healing and transformation today.
What choice in your health have you changed? I’d love for you to share them below.
Until next time,
All over body aches and pains. Swollen joints, major fatigue- we have had all of these symptoms and more triggered once a month to once every few months. They throw you off and at times can require hospitalization. They can be very sudden or they can just creep up on you very slowly. Unpredictability of lupus flare ups is sadly one of this disease’s most maddening features.
It can be very frustrating to go for months or years without a “flare,” then wake up one day with symptoms like headache, lethargy or the butterfly rash on the face. Unfortunately, flares are all too common. Almost half of all lupus patients have a flare at any given point during the year and last from just a few days up to several months. Not surprisingly, flares can take a bigger emotional toll than you. Your friends and your family members may realize, especially if it has been a long time between flare-ups, that they are a painful reminder that lupus can change the quality of your daily life in an instant.
What causes these flare ups can be a mystery but how you approach them can make a world of difference in your journey with lupus. Could these symptoms be caused by working long hours, not sleeping enough, or having too much stress at work or home? Any form of stress can trigger our delicate immune systems. Here is a list of some of the crucial things I have done to minimize these symptoms that I hope you find helpful:
1. Slow down your crazy daily schedule: Work, traffic, dinner, pick up the kids. You may feel as if there aren’t enough hours in the day. Try ordering dinner in. Trade babysitting time with a friend. You may consider hiring a housekeeper, even just once a month could help. Sleep an extra hour if possible. For most of us, this is probably easier to do by going to bed earlier then getting up earlier in the morning.
2. Invite and accept help: Relatives and friends can play important roles in helping people with lupus handle the effects of a flare. Just accepting help to help with household chores is an example of what can be tremendous relief for someone in the midst of a flare. Invite people who are close to you to be part of the recovery process. Let your family in, without being a ‘burden.’ Kids don’t mind helping if it is just one more thing expected of them.
3. Give yourself a small, fun, relaxing treat: How about getting a manicure/pedicure or spa treatment? Beauty schools offer them at a discount. steal an hour alone in the park, buy a new book, head to the nearest cafe with your favorite magazine and get some mental downtime.
4. Meditate: Meditation has been found to help reduce anxiety. Give your mind some quiet time. Sit for 5 minutes, close your eyes and take in a deep breath from the belly, count for 7 seconds, hold for 7 seconds, and breathe out for 7 seconds. You can easily do this while sitting in your kitchen, your office, on your couch, in the park, or even in your car (at a stoplight or at the beginning or end of your drive.)
5. Restorative yoga: Yoga benefits mind, body and spirit. It has been found to help with pain and improve sleep quality and mood. This is by far the most gentle form of yoga, primarily all on the floor in relaxing poses. I love taking this kind of yoga, even when not in a flare.
6. Take Hot baths: For some this could be a dream, but for others with lots of painful joints, this could at times be a bit too much heat, so lower the temperature or avoid all together. If you only feel fatigue and mild achiness, a hot bath can work wonders. Same with massage, for me, I was so sore afterwards, I steered clear. But if fatigue is the only symptom, this could be heavenly. Add your favorite scented bath salt, such as lavender or even just epsom salt to help soothe the muscles.
Until next time,
Just recently I read that a well-known music artist was told her music career was over. My heart stopped. How dare they! I was angry and then almost immediately, I began to cry. How could another human being predict the life of another? It brought me back to my time in the hospital when my doctor so callously said I would be on the kidney transplant list in a few years. The words of that doctor that day had cut into me so severely that I thought I’d never recover. Her predictions were wrong. My kidneys are now quite happy, thank you very much!
It’s an outrage if you ask me. The reason this upsets me so much is because I’ve been there too and it doesn’t have to be this way. I cannot bear to see lupus sufferers carrythis big depressing label around and feel doomed for life. Forever. Yep, that’s right. That’s the going prediction. “You will never feel good, there will be lots and lots of mornings when you will not be able to get out of bed…” The list goes on and on. I refused to accept all that negativity. It does not and could not exist in my world. Negativity is not on my radar, I don’t speak of it, marinate in it, nor allow its energy to seep into my thoughts, mind, or body.
What do you do when your doctor tells you your career is over because of lupus?
I wonder how many times a day a woman or man diagnosed with lupus is given false, antiquated predictions and prognosis. I can only imagine what this does to the body. Feelings of being defeated. Spiraling down a narrow dark tunnel. And now focus on those very thoughts everyday for years and years. How do you feel? Pretty darn shitty. How could you feel positive, energized, optimistic or anything other than defeated?
Now, let me tell you that this was not how it was when I first was diagnosed. I cursed the day the pain had befallen me. I hated my body for reacting the way that it did. Every step, every deep breath, and every tiny movement was a painful reminder. Trust me, I’ve come along way and let me tell you, it’s way better to not let the negativity seep in.
My soul mourns every time anyone is told their life is over. When your deepest most beautiful dreams are stolen away. Breaks. My. Heart. That’s why I’m here. To tell you from the deepest place of my heart that it doesn’t have to be true. I’m not saying to be in denial and not take your medications and ignore medical advice. But know that it is possible to have a juicy, fulfilling life created by you. It is ok to dream big. I’ve been there, exactly where you are, crying at the sadness of it all. But the good news is that you are the one who ultimately controls the mind chatter that impacts your body every day.
I had slipped into such a deep depression that I was hours from being a successful suicide attempt. But I have come back despite the long journey of daily pain, inability to walk, hair falling in clumps, and the ravaging effects of prednisone on my body. The strength to continue living regardless of the challenges is in all of us.
Here are a few things I do every single day to push away any detrimental thoughts and bathe in the positive, the beautiful, and the ease of lupus:
1. Recite 12 gratitudes out loud everyday. Gratitude for even the simplest things from your comfy pj’s, to the delicious tea you bought, gentle yoga, your warm bed etc.
2. Use affirmations: “My kidneys function beautifully”,“ My joint pain subsides with ease.” Pick one that suits you.
3. Seek the company of individuals who encourage you to follow your dreams and desires.
4. Pick one action that you can take to fulfill your next goal in life, no matter if that goal is big or small.
5. Surround yourself with people who are already pursuing their dreams and take notes. It just takes the first step forward.
6. When you are feeling low, put on your favorite music and light some candles.
Do you currently have a gratitude journal or use daily affirmations? Have you created any goals, little or big, for 2013? Let me know, I’d love to hear from you!
Until next time,
Happy Belated New Year! By now many of you may be following through with your resolutions, or, like me, are struggling to stick to all of them! Did you resolve to reclaim your health in 2013? I’d like to share with you five foundations you can incorporate into your daily life to start the transformation from Lupus Survivor to Lupus Thriver.
I’ve learned so much during the struggles and triumphs of my journey with Lupus, and I truly hope to empower you to take control of your journey as well. Read on!
1. The Right Food – Are you really eating as well as you think you are?
That doughnut or last-minute fast food stop can lead to indigestion or worsen your sleepiness. We’ve all been there, and though you may be starving, you can end up reaching for the worst possible food!
Once a week, take the time to buy foods you love, make time to cook, or even indulge in a tasty treat. Our bodies are complex – easily triggered by the wrong foods, beverages. Our bodies have been through enough drama, so making sure we are giving it the best fuel will not only allow it to run better, but we’ll also feel better, too.
2. A Positive Attitude – More powerful than you think!
We are bombarded by much negative talk about this disease, whether it’s from your doctors, family, the web, or from you: kidney issues, the fear of dialysis, not being able to function. Biopsies, kidney transplants, countless medications and their side effects. So try infusing the positive realization of what is possible into your daily thoughts. What if everything you hear and read only confirms that wellness and vitality are inevitable?
Wow, did you feel that? That nudge. The push to wholeheartedly believe what is seemingly impossible. Everyday, all day, I must infuse positive thoughts to seep into my cells – the intense love for this body of mine. Louise Hay has written amazing books on affirmations. But you can’t just SPEAK affirmations, they need to be FELT. Say them with feeling – your cells won’t know the difference if you are just saying you are healthy or in fact are healthy.
This is Hay’s affirmation for lupus: “I speak up for myself freely and easily. I claim my own power. I love and approve of myself.” For kidney issues, “Only good comes from each experience. I am perfect, whole and complete. I choose to be healthy and free. All is well in my world.”
3. Self-care – It’s all about choosing to care for YOU!
I used to be one of those lupus sufferers that cursed my body, the pain, the weight, the hair loss, the loss of my beauty. What did that serve? Would you ever curse your best friend or a beloved pet? But then why do we so often speak such horrid things about our bodies? I’ve come to love every single thing about this body of mine. And with this embracing, my body’s response has been anything short of remarkable.
What can you do today to show your body love? Here is a short list of some of the decadent things I choose to do for my body:
4. Relaxation – Even 10 minutes a day will do!
I know what you’re saying, “How can I relax with 3 kids and a job and …?” Our bodies are in a constant battle which eventually takes its toll. We need our rest. If you sleep too much or not enough, take a 30 minute power nap if you can. Stop in and get a 10 minute back rub. Indulge a little. Your body needs it. It cries for it. Don’t ignore her. Overdoing it puts stress on your adrenals, secreting cortisol which contributes to aging and puts you at higher risk for coronary events. You can even take 10 deep belly breathes with eyes closed once a day. How’s that for starters?
5. Creating Advocacy – A vital part of your journey
None of us can go through any health issue alone. Who is on your side? Someone who is there for you when you need a shoulder, a ride, a mani-pedi buddy, a laugh, maybe even a tasty cosmo. Have you tried support groups? You must know that you do not feel anything that we all haven’t felt before. I know all too well about the countless (endless?) tears. But I reached out for my biggest cheerleaders – my friends, family, and colleagues. I’ve tried doing it all alone, that alpha female (me) which works well in business but not so well for my body.
So there you have it, 5 little gems to jumpstart your new year with. I look forward to hearing what you have done for your body today or this past weekend – let me know! Also, who is in your circle of support? Who do you want to add to your team as a cheerleader, and why?
Until next time,
Welcome to the birth of www.Margaret-Romero.com! I have combined all the resources I have used to living a pain free life despite the diagnosis of lupus years ago. I want to share with you what took me years to figure out … Continue reading