Staying Positive While Living With Lupus
People often ask me how I stay positive when I have so many health issues to worry about. The truth is, I don’t worry about my health issues. I don’t have a lot of control over most of these issues, so I leave the worrying to my physicians. I do the best I can to follow their instructions, and I try to remember the following:
First – it’s okay to be unhappy sometimes. No one, not even healthy people are happy all the time. It’s not that we, as lupus patients, want to be unhappy, but we seem to focus on the things that make us feel that way.
In twenty-five years of living with lupus and educating lupus patients I’ve found the main reasons behind our unhappiness are connected to the following:
1) First we tend to be unhappy because we are still mourning or have yet to mourn for the things we’ve lost. Yes, we do have to mourn when we are diagnosed with lupus. It is a given that our lives will change. We must mourn our former selves. We are not the same, nor will we ever be. We must learn to live differently, treat ourselves better, find new interests, and change many things about our lives. For most of us, by the time lupus rears its head and forces changes into our world, we have already established patterns in our lives. In other words, we are adults. We fight the changes, and refuse to mourn. That doesn’t work for most of us unless we want to be chronically unhappy. We want things they way ‘they used to be.’
2) The second reason most lupus patients are unhappy is due to our loss of control. Many patients are type “A” personalities, and as such, we thrive on being in control. Forget it. You aren’t in control any longer. Lupus runs the show. We may not like it, but we can’t change it.
Lupus patients are all the same with regards to these two things. Take heart. There are things we can do that will help us find happiness.
Accept that your life has changed. The sooner you do this the sooner you can enjoy your new life. Change isn’t always bad. Do the things you’ve always wanted to do. Paint. Read. Write. Take a class you’ve always wanted to take. Skydive if you want. This is a new you so be the person you’ve always wanted to be.
Focus on the things you can control. Focus on eating well and on getting the right amount and type of exercise. Plan your days so you can avoid exhaustion. Put first things first – people before things.
You may not believe it but you are the one in control of your emotions. Sometimes being happy is as simple as deciding you want to be happy.
From the life of Wanda M. Argersinger
© 2015 All Rights Reserved
Wanda M. Argersinger was diagnosed with lupus in 1992. She became the Executive Director of The Lupus Support Network, Inc., in 2003 when lupus forced her to leave her career as a network engineer. She has been writing since the age of 6, currently writing two blogs about lupus, and one blog dedicated to life and the humorous things that happen to all of us.
Wanda M. Argersinger, Executive Director
The Lupus Support Network
PO Box 17841
Pensacola FL 32522-7841
850.478.8107 or 800.458.8211
5 Offbeat Steps to Boost Mental Health
By Nellie Russell
In the spring of 2008, after having suffered a major psychotic episode, I reached a tipping point on my road to recovery. I had struggled with my mental health, including bipolar, borderline, and obsessive compulsive disorders, since the late 90’s. However, that summer was the catalyst that would set me on a six year inward journey to health and wholeness and ultimately to remission and a life without prescription medication. It’s been a long road for me get to where I am now. Lots of trial and error. Lots of failures, but also lots of successes. Here are the top five things that have helped me get to the good place I’m in today.
1. Ditch The Sugar & Eat Real Food. My body and mind were starving to death. Don’t get me wrong, I ate plenty of food, but WHAT I was eating was slowly killing my health and happiness and I didn’t even realize it. The biggest culprits? Sugar & processed foods. When I quit eating sugar (and grains because they convert to sugar in your body) and started making all my food from scratch, I saw an amazing transformation with my mental health. When your body is not getting proper nutrients and your digestive system is in peril, your brain doesn’t get the things it needs to function properly either. The best thing you can do for yourself is to get educated about the food system and why nutrition and digestive health are so important for your mental health.
2. Declutter the Junk. I used to own SO MUCH STUFF! My space was always a mess, I held onto sentimental items like my life depended on them, and despite my closet being overly full, I never knew what to wear. I moved many times over the course of my six year transformation and that required me to gradually downsize my possessions. That’s a whole story in itself, but ultimately by learning to part with the useless stuff, I made more time and more space for the things that really do matter in life including happiness.
3. Let Some People Go. I’ve ended many short and long term relationships in the past couple years, both romantic and platonic. Ending toxic relationships are a huge step in maintaining your health and happiness. The people you choose to spend your time with should lift you up, not drag you down. When they start to contribute to the destruction of your well-being and quality of life what is the point of remaining connected to that person? Here are some ways to identify and detach yourself from toxic people: “Breaking Up with Toxic Friends”
4. Get Offline. Over a year ago I deleted my Facebook account and got rid of my smart phone. One of my best decisions ever. I also took a two week digital detox away from all computer use and it was a total eye opener. I realized during the first few days of being offline how incredibly addicted I was. I found myself having physical and emotional reactions as if I had quit a drug cold turkey. It got easier though, and eventually started feeling really awesome! So I never went back to the world of Facebook. Privacy is a gift that many people take for granted and one that can greatly impact your mental health for better or worse.
- Don’t Sweat the Small Stuff. Seriously, whatever you’re worried about, you can most likely classify it in the “small stuff” category. The main idea behind this one is to BE HERE NOW. I wasted so much time dwelling on the past and stressing about the future, all the while throwing away my happiness in the present moment. The past is finished and you will never be able to change it and the future is never guaranteed. All you have is right this moment. Learning to be mindful and accept life as it comes will help you to ride the waves of emotion that will always be present with life, no matter what diagnosis you’re facing!
Nellie Russell is a holistic health & lifestyle coach, writer, and Editor-in-Chief at BipolarOutLoud.com. She has a passion for positive health and happiness and strives to share her message of hope to the mental health community and beyond. As someone who has lived most of her life with the severe symptoms of bipolar, borderline, and obsessive compulsive disorders and successfully broken free from their clutches, her mission as a coach is to teach alternative methods of mental, physical, and spiritual health care that are not solely dependent on conventional psychiatric treatment. You can connect with Nellie online at LifelongWellnessCoaching.com.
More than one out of every 100 deaths is by suicide. That is more people than die in car accidents [source]. And more than 80 percent of Americans diagnosed with clinical depression are not getting any treatment for it [source]. Studies have shown that one of the key barriers to people seeking treatment is the stigma associated with mental health.
My name is Miriam Ament and I am dedicated to breaking the stigma associated with mental health through my organization, No Shame On U.
More than a decade ago, I went through a major depression. I faced stigma and isolation from some friends and relatives who didn’t know how to handle me or the situation. When I was at the worst point in my depression, a good friend of mine called. “I only want to talk to you when you’re happy,” she said, “so let’s not talk again for a while.” I never heard from her again.
Fortunately, I was able to successfully treat my depression with professional help.
Two years ago, through a charity auction, I had the opportunity to go to lunch with legendary actress Glenn Close. She founded a mental health organization and was very open to talking about it. I had never spoken about my history of depression with anyone who was not already aware of it, but I felt compelled to tell Glenn my whole story. She was amazing to talk to and it was so freeing.
Shortly after our meeting, I earned a Fellowship from JCC PresenTense Chicago. I launched No Shame On U so that no one should be ashamed to get help in the Jewish community and beyond. My goal is for the people who need the help, to seek it, for family members and friends to know how to provide proper support and for lives to be saved.
Last October, I was interviewed by WGN News for a segment they were doing on National Depression Screening Day. For the first time, I talked publicly about my mental health history and, as scared as I was to open up, I knew that my story had the potential to impact an untold number of people. The segment led to a cover story for another Chicago publication, helping further the reach of my story beyond what I ever imagined.
As a result of the media exposure and NSOU’s social media presence (more than 14,800 Facebook followers), many, many people have reached out saying the impact No Shame On U has had on them. One of the more touching comments I have received after responding to someone was, “Thank you, so much, for your informative and potentially life-saving reply!”
No Shame On U is disseminating information daily to raise as much awareness as possible. In addition, we are planning an inaugural event this fall where we hope to reach even more people. If you or someone you know is going through a rough time, please know that you are not alone. If you are in crisis, or know someone who is, please call 24/7 hotline: 1-800-273-(TALK) 8255 OR text 741741 for a 24/7 crisis text line – a live, trained crisis counselor receives the text and responds quickly OR go to www.imalive.org for 24/7 online crisis chat.
Explain what you do at WEGO Health!: I’m responsible for moving WEGO Health in new strategic directions that ensure that the company delivers high value to Health Activists, the marketplace, and employees.
How have Health Activists affected your outlook on health? I am inspired by Health Activists’ passion, intellect, and the fact that they’ve taken matters into their own hands. Being around them has changed how I take care of my own health and my family’s health. We no longer take matters for granted.
If you had one super power what would it be? Why? I have no idea what super power I’d like to have. It’d probably has something to do with denim.
I’ve been practicing yoga for almost 12 years. Even when I was pregnant, I tried not to miss my yoga classes and did simple poses and breathing exercises. As every mother, I want my children (3 and 5 year olds) to be healthy and happy. That’s why I had no doubts that I would practice yoga with my kids. There is no reason to explain to an adult how good yoga is for your body, mind and soul. But how to explain this to a child?
When I started my first family yoga classes, my kids didn’t look too happy about it. They felt bored doing poses and meditation. I had nothing else to do but to invent my own way of practicing yoga with kids. Now, yoga is their favorite pastime. How did I do that? Here are my small tricks.
1) There is always a place for music!
To start with, I did short breathing and relaxing exercises outdoors, using my mobile phone to play calming music. If you have little kids, you barely have time to go deep in technology and learn how to download music from the Web onto your phone. That’s where I got help from Free Musicbox. It’s a simple app that has almost all kind of music you need. In my case, I use #yoga hashtag to find music I need.
2) Sing songs to make kids relax
Besides that, we sing songs at the beginning and at the end of each class. I briefly explained to my kids the meaning of Om and now every time we practice yoga together we include Om Shanti in our class. My kids like to sing; it makes our training more peaceful and relaxing.
3) Learn poses with fun
Children learn super-fast, but you need to help them learn numerous yoga poses. I use Yoga Pretzels, a set of special cards with yoga asanas to teach my kids. Before starting the poses, I let my children choose the cards and then we practice the asanas they’ve chosen together. Don’t forget to make sure they do their 4 count breath through the nose in and out.
4) Call fantasy heroes to help you
There is an issue I faced was that my daughter didn’t know well her right and left. I tried to put stickers with corresponding letters on her arms, but it looked rather boring for her. After some time, I came up with another idea. Ashley is into Disney princesses. Her favorite are Jasmine and Elsa. So I printed their faces and again put on Ashley’s arms. The trick worked fine and now instead of saying “raise your right arm”, I say “raise your right Elsa arm”.
5) Play games to keep asanas in mind
One more great way to learn the poses is a simple game. We sit in a circle singing when I suddenly name one of the poses and choose who’ll show me it. One of my kids then stands up and demonstrates us the asana. In a couple of classes they learned perfectly all the necessary poses and now compete who’ll do it better.
6) Add new poses and games to each class
My children like to learn something new and perform difficult tasks. That’s why I try to include a new challenge – a new pose in every class. Their favorite poses are balance asanas, especially the crow pose. Of course, when you start practicing this pose, you should assist your kids all the time and watch them attentively.
7) Talk seriously in a simple way
Kids are curious about everything and are very impressible. Be ready to answer their questions but in a simple way. During each practice I talk to my kids about basic yoga principles. Yesterday we began to discuss Ahisma, or Non-Harming, a huge topic and it’ll for sure last for many classes. Since we have pets at home, we talked about the importance of being kind to animals. Then we spoke about how it’s important to help other people and animals, especially when they are weaker than you.
At the very same evening, a couple of hours after this talk, I saw Freddy, my son, helping Ashley to fix her favorite toy. Well, I couldn’t help smiling and I was extremely proud for my kids.
Alice Koval is a freelance blogger and a happy mother. She is passionate about yoga, healthy lifestyle, and early childhood education. Talk to Alice on Twitter.
The below article, written by Chronic Pain Health Activist Erica, originally appeared on Her Campus.
On June 20, 2013, the first pain specialist I had ever seen told me, “You are entering the beginning stages of the world of chronic pain.” And I bawled my eyes out.
Backtrack to eight months prior: I had just graduated from the Fashion Institute of Technology in New York City with a degree in International Fashion Merchandising with honors. I was styling for major magazines and celebrities, and I landed my dream job for a major designer doing sourcing, product development and production. I was one of the rare few that genuinely enjoyed my job. I loved what I did and wouldn’t have traded it for the world.
A few months after I began working, I became obsessed with the position. I was a total workaholic, and at some point, I completely stopped taking care of myself. I was no longer eating well, exercising or even sleeping. I got to the point where all I was doing was working, showering and ordering take-out every night. I stopped seeing my friends and tried to nap in my limited spare time. When February 2013 rolled around, it all came to an abrupt halt.
I woke up one Sunday morning in February that I will never forget: I couldn’t move my neck without an excruciating pain radiating down through my shoulders. I was transferred to the Emergency Care Unit of Hospital of Joint Diseases at NYU.
Little happened at the ER, aside from being pumped up with hard painkillers, anti-inflammatories and muscle relaxants. I was still vomiting by the time I was discharged. I was then sent to a myriad of doctors who tried to figure out what was wrong with me. Some had ideas (that were wrong), treated me for their diagnoses and ended up discharging me, telling me I was crazy or that the symptoms were all in my head. This happened several times.
It got worse. The pain continued to travel down my back, the sides of my spine, through my neck—it was excruciating. To add even more devastation to the pain I was experiencing, I was forced to leave my beloved life in Manhattan. My paid disability leave ran out at my job and the lease on my perfect East Village apartment ended. I had to leave my dream job, pack up my apartment, and say goodbye to all my friends, then move home to Pennsylvania with my parents indefinitely. I was a mess. I was 23 years old and felt like my life was spiraling out of control.
At that point, I couldn’t even sit down for 10 minutes without crying from the pain. If I took a car ride for more than 30 minutes, I had to make a bed in the backseat to lie down. I couldn’t drive. I didn’t have friends at home. I was insanely depressed and was alone most of the time, essentially on house arrest because of the pain for months at a time. Brain fog from pain was so bad that I couldn’t concentrate on anything. I was rapidly gaining weight. I couldn’t cook for myself. I was so poked and prodded from so many blood tests from all of the different doctors that I looked like a drug addict. As I recently learned, I have metabolic issues with most drugs, so trying all of the new meds I was being prescribed by these doctors constantly made me break out in then-unexplainable rashes, vomit, and I’d get dizzy to the point of being unable to stand.
After seeing rheumatologists, GPs, physiatrists, PTs, sports medicine doctors, geneticists, neurologists, pain specialists, endocrinologists, and orthopedic surgeons, I was still not getting anything useful from anyone. I had a posse of residents following me around the hospital and calling me 24/7 to ask me questions. Nurses would make little cracks about “Erica and her entourage.”
I was in so much pain that I was willing to try anything, including hypnotists and private meditation counselors. But it was finally decided that I had tried enough, and the only step left was to go to Johns Hopkins Hospital. I managed to get an appointment with the top pain specialist in the country, and in July of 2013, he diagnosed me with Chronic Myofascial Pain Syndrome, Hypermobility-Type Ehlers Danlos Syndrome and hypothyroidism. With these diagnoses he told me, as gently as he could, that there was a good chance it would never get better, and that there was a serious possibility I might never work again.
This ignited in me some serious determination. I told myself that I would get better no matter what and that some day, no matter what it took, I would work again. After rounds of new (more effective) drugs, physical therapy and weekly trigger point injections, I started to (finally! miraculously!) make some improvements. It wasn’t an easy feat. This strategy was absurdly taxing, both emotionally and physically. Everything was painful, but I very slowly improved.
I now get trigger point injections every month, and I work with a personal trainer that specializes in chronic pain, massage, reiki, therapy, chiropractic work and acupuncture on a regular basis.
I decided the best way to get my career back on track would be to attend a short masters program to show potential employers that I am still both relevant and capable. I also knew that a masters program would be an easier transition back to work after being mostly immobile for three years. I have always been an all-or-nothing kind of gal, so I decided to apply to a competitive one-year masters program at London College of Fashion to study Fashion Design Management with my focus on sustainability and ethical design practice. I knew it was unlikely, but I also knew I would kick myself for not at least trying to follow my dreams after such a painful and depressing time-out from my beloved career in Manhattan, which felt like a lifetime ago.
To my delight, I was accepted! With the most accessible and generous disability accommodations available, I will be moving to London and attending LCF in the fall and I have to admit, I am pretty damn proud of myself.
Not many people can relate to all of this. The fear, the immaculate planning, the general anxiety, the stuff you have to put up with from doctors and the judgment from people in general. I lost many good friends in this process—even people I thought I was really close to. The last two years have been gruesome, not just physically but psychologically. Watching all of your friends grow in their professions and their relationships—their lives overall, really—is hard to watch from your bed.
The coming year will undoubtedly be full of challenges and obstacles. Sometimes I feel like that’s what my life has become—a constant battle between what my mind wants and the more limited capabilities of my body. Prioritizing the things you want to do with the things you can do can be hard. But I can’t give this up. I will find a way to make it work.
For more information about Erica you can visit her blog.