The Lupus Lifestyle

Lifestyle Tips for Thriving with Lupus

Appreciating how far I’ve come

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I was feeling down about myself and my progress today.  

For the past few months, ever since my triathlon, I’ve been focusing on strength training.  I’ve been working on lifting heavy weights and eating more than I normally would to build muscle (I’ll share the method I’ve been using as well as before and after pictures soon).  I have definitely noticed an increase in the amount of weight I can lift and some definition in my arms and legs. I felt like my fitness was at an all-time high. Then today happened…

I decided to take advantage of some of the classes at my gym.  I’ve never done Zumba but it sounded like fun…I am terrible at it!  I grew up not dancing so my rhythm and ability to pick up steps are severely lacking.  I felt like I spent most of the class just trying to figure out which foot should be up and which should be down.  But I worked up a sweat.

After Zumba was a BodyPump class that utilized low weights and high repetitions to tone the body.  There were several older women who had attended Zumba and were staying for the second class. I thought surely I could keep up with them so I stayed for the second class. As they gathered their weights, I thought “I’ve been lifting, I should be getting heavier weights than them.” These women were deceptively strong.  I was disappointed in my inability to keep up with the class.

I left feeling like I had a good workout but disappointed with my progress.  My body has not changed as much as I want it to, cardio wise I don’t have good stamina, my weight is more than I’d like, I haven’t perfected my diet, I’ve missed days with my smoothies, I still feel like I don’t know what I’m doing in the weight room or in the gym in general.

Then I realized I’m holding myself to an unrealistic standard and I’m focusing on the wrong endpoints.  A few short years ago I was so fatigued that I could barely function, much less exercise. I fell asleep the moment I stopped moving, I had joint pain that kept me from texting or petting my dog, I couldn’t cook for myself, etc.

Now I work out 5-6 times per week for at least an hour, I cook (most days), I can sit and read without falling asleep, I play with my dog, I dance around the house as I clean.  I feel great and that is something to celebrate. I will never stop working to better myself and work towards fitness and health goals but I need to recognize and be grateful for how far I’ve come.  

Once I received my lupus diagnosis, I changed my diet to a whole-food, plant-based, vegan, gluten-free diet.  It sounds extreme, I know. But I looked back at this list of things that had improved after I changed my diet and the results are extreme and totally worth the improvement in my nutrition.  I have only improved in the past several months and feel better than I have in years! I am not perfect but that is part of the journey, and it is worth it, friends and I need to remember to celebrate that!

This is the list I made when I first changed my diet 2 years ago.

Since starting this diet:

  • I don’t sit/sleep in my car once I get home
  • I go on walks
  • I’m not dependent on coffee
  • I don’t fall asleep driving
  • I don’t fall asleep in meetings
  • I don’t fall asleep in waiting rooms
  • I think more clearly
  • I’m not dizzy
  • It’s not a struggle to listen to someone
  • I haven’t had anxiety attacks
  • I haven’t felt depressed
  • I’ve lost weight
  • I sleep better
  • I haven’t had issues with allergies and haven’t needed to take allergy medication
  • My rosacea is better
  • I can focus better
  • I can remember things better
  • I’ve been more adventurous and willing to go out and do things
  • I clean the kitchen
  • I have the energy to cook
  • I make smoothies in the mornings
  • I can use whatever finger I’d like to turn off my alarm in the morning
  • It doesn’t hurt to text
  • I don’t have headaches nearly as often
  • I don’t have chest pain nearly as often
  • My joint pain is much much less
  • My nails are growing faster
  • BMs are easier
  • I can pet my dog in the mornings without pain
  • Not taking Aleve every day
  • I have hope that things can get better.

My Story

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If you’ve made it to this site, you probably know that I have lupus. For those who have lupus (or any autoimmune disease), you know that we all have a story that, for most of us, involves a long road of misdiagnoses or being told there’s nothing wrong with us. For those who don’t have lupus, here’s a glimpse into my road to diagnosis.

It takes an average of six years for patients with lupus get the correct diagnosis.  Years of pain, fatigue, confusion, made to think you’re crazy. For me, it was a path that lasted 10 years.

Undergrad (2006-2010) – joint pain

I first noticed symptoms of joint pain when I went to college in 2006.  It was a stressful time for me, the first time I had been away from home, taking pre-med, not taking care of myself.  I developed knee pain. I attributed it to running in the mountains or perhaps the extra weight I had put on. I saw my family doctor (we’ll call them Dr. Z) and they ordered an MRI but my knees appeared normal.  I didn’t understand why they would swell up and hurt whenever I tried to exercise.

I’m on the far right. You can’t tell but I’m wearing knee braces on both knees under my jeans.

Nursing school (2011-2013) – IBS, joint pain, depression

Right after undergrad, I had a traumatic event in my life then started nursing school, then my grandfather got cancer and I helped in caring for him when he died at home.  It was a stressful few years.

I started having GI symptoms: abdominal pain, bloating, constipation, diarrhea.  Back to Dr. Z, I went and they diagnosed me with irritable bowel syndrome (IBS).  Over the next few years, I had multiple visits to Dr. Z. Wrist pain, elbow pain, knee pain.  It seemed each month I had a new brace to wear but the pain would seemingly magically get better.

I remeber being consumed with trying to hide my IBS symptoms on this girl’s trip. I tried to be so careful what I ate to avoid abdominal pain and dreaded going to the pool because of the bloating.

Dr. Z made comments about me having so many complaints. “You’re young, you shouldn’t have all of these problems,” they would tell me.  They told my mom that I was a hypochondriac. So I was embarrassed to bring things up. They diagnosed me with generalized anxiety disorder but I felt that I wasn’t anxious at all. These were legitimate complaints.
I’m sure my family got frustrated hearing them also because it seemed there was no end to my problems and they came and went so much that I’m sure it appeared like I was over exaggerating them. How could my knee hurt so badly that I could barely walk one week and be totally fine the next?

About that time came the depression. I attributed it to my traumatic personal event and being involved with my grandfather’s care as he died from cancer. I terrified myself when I had a very clear suicidal ideation while watching TV. It was a car commercial where the car was whipping around mountainous roads. I thought to myself, “that would be an easy way to kill myself. I have mountain roads just up the street.” I knew enough from my nursing training to know that I had ideation of killing myself, a plan, and the means to carry it out. I was scared. (It took several years before I would let myself drive in the mountains alone.) It was at this point that I knew I needed help.  Back to Dr. Z, I went. Having depression was shameful enough for me, having to take medication for depression was even worse. I felt like I had failed my family who had given me everything I could ever need but still I wasn’t happy.

Side note: I have mentioned this before in other posts but please, if you are suffering from depression, know that it is not something to be ashamed of.  It is a disease process and is very treatable! Please, please, please, get treatment whether its medication, counseling, or lifestyle modification.

Intermission (2013-2015) – fatigue

Due to a possible psoriasis diagnosis (an autoimmune disease that attacks the skin) that never amounted to anything, I had become vegan and gluten-free per Dr. Joel Furhman’s book “Eat to Live.”  I was managing my IBS with diet and stress reduction. I was able to wean off my anti-depression medication. I ran a half marathon with no knee pain.

At this time I was working as a registered nurse.

Throughout this time I still felt tired all the time and I couldn’t understand why. I also had trouble getting the words I wanted to say to come out of my mouth.  I forgot words all the time. I went to a new provider, a family nurse practitioner. They took my fatigue complaint seriously and ran a variety of tests for thyroid and vitamin and mineral deficiency.  I was mildly B12 deficient and started a supplement which did help with the difficulty finding words but did not fix the fatigue. All other labs were normal except for one. I had mildly low platelets.  My NP decided to keep an eye on them as nothing else seemed out of place.

Graduate school (2015-2017) – plethora of symptoms

I began a nurse practitioner graduate program and my stress increased.  (As you’ve probably noticed, stress is a major trigger for me.) Fatigue was one of the major symptoms.  I was falling asleep at stop lights, in class, anywhere. Often I would get home and be too tired to get out of my car so I would fall asleep as soon as the parking break went on and sleep for an hour in my driveway.

I had headaches that blurred my vision, lasted for hours, and weren’t touched by my typical pain meds.  I developed pain in my chest when I took deep breaths. I never had the typical butterfly rash but my face was red and I developed painful acne.

I also developed brain fog.  I had always been a good student so I couldn’t understand why all of a sudden, I couldn’t learn or remember things or think logically through problems.

I’ve written before about my anxiety in my post about my emotional support dog.  I had never experienced test anxiety before but it overwhelmed me during this time.  Between the anxiety and brain fog, I performed terribly on exams. I did so poorly that semester that I had to withdraw from the class to keep from failing. It was so embarrassing for me. I was so ashamed. I didn’t tell anyone. I made up excuses why my graduation date had changed.

Diagnosis (2016) – the answer

  • My swollen fingers

In July of 2016, the cause to all of my symptoms was finally discovered. I was working at a summer camp and noticed that my knees and ankles were very sore in the mornings and my fingers were sore and swollen. I couldn’t perform my morning tasks due to the swelling and pain in my fingers. I saw my NP and she sent out labs.  Positive ANA, low platelets, low white blood cells, low C3 and C4 complement levels. Turns out, I had systems lupus erythematosus.


My mom went back to my Dr. Z and told her “you got it wrong, you missed this.”

As a healthcare provider, I don’t want to be hard on other providers, especially primary care who have such a breadth of disease processes to know.  But it is a difficult journey to diagnosis.


I also know that many of you have much more difficult and painful journies.  While we all might be fighting the same disease but the wolf attacks in many different ways.  I stand with you and hope that together we can find ways to live life better.

I did finally graduate with my MS and Family Nurse Practitioner thanks to help from my family!

Don’t take ________ for granted

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I did a triathlon today!


I enjoyed doing the race with my friends Lauren M, Lauren P, and at the last minute
my brother, Casey!

One year ago I did my first sprint triathlon and it was in part to prove to myself that I could do it, lupus or not.  That was almost two years after my diagnosis. It was something I never could have imagined doing when I was at the height of my symptoms.  As I look back it was a milestone, a “take that lupus!” moment.

One year and a lot of lifestyle changes later, I finished my second sprint triathlon but this time my motivation was different: I did it for my sister.

I’ve always known that exercise was an important part of my self-care for lupus.  It helps with mood, joint pain and stiffness, constipation, circulation, weight, etc.  But knowing something is good for you doesn’t make it magically easy to do. I struggle to get myself to exercise especially when I’m having a flare or am fatigued.  I convince myself that I need sleep more than exercise (which is probably true sometimes but not as often as I say it). But recently I have recently gained a new motivation for exercising.

As I’ve written before, my sister sustained a spinal cord injury which has left her paralyzed from the waist down.  She gave me a new perspective on exercise and movement in general: don’t take it for granted. “Don’t take walking for granted.”  “Don’t take being able to use the stairs for granted.” “Don’t take the ability to get up off the couch for granted.”

I never thought to be thankful that I could run…but I am.  Sometimes I feel odd doing all this exercise (running, swimming, cycling, yoga) when she can’t do any of it at this point.  But my sister is a huge advocate for me getting enough exercise because she knows it’s good for me and because I can, and that’s not something to take for granted.  

So today, be thankful for the movement you do have.  Take the stairs, park a little further away from the store, walk around for 5 minutes during lunch, play with your dog, do some yoga or chair exercises, whatever it is that gets you moving and don’t take the ability to do that thing for granted. 🙂


  • Unfortunately, I didn’t get a picture with my sister but it was great having her, her husband ,
    and my sister-in-law there to cheer us on!

P.S. I’ve made a lot of lifestyle changes in the past year and my race time, weight, and difference expressions in the pictures from one triathlon to the next show it. I’ll be writing more about the changes I made soon!

My Emotional Support Dog

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One of the more debilitating symptoms of my lupus is anxiety: heart pounding, chest pain, difficulty taking a deep breath, paralyzing fear, irrational thinking, crying. At its worst, it prevented me from living a normal life. At the time I was in graduate school doing a clinical rotation about an hour from my house. I remember feeling absolute dread the night before I would go to the clinic that slowly increased as I got to the end of my drive and had to walk through the door.

Lunchtime was also nervewracking. I often brought my own lunch but was too anxious to ask if it would be alright if I ate in the break room and I would have been too anxiety filled to talk to anyone while I was there anyway. So I’d go eat in my car in the Southern California spring heat. But I couldn’t sit in my car where I parked in front of the office. Somebody might see me by myself in my car. So I’d drive somewhere else in the parking lot or to a different location so no one would see me. For that same reason, I would have trouble finding places to go out to eat. What if someone from the office saw me eating by myself and felt bad for me, or invited me to eat with them? That was too much stress to handle. So I would drive out of my way to a coffee shop or lunch location but once I parked, I couldn’t get up the nerve to go in. What if I went in and there was nowhere to sit? Everyone would look at me and feel bad for me. One time I finally got the up the courage to go in and pulled out my computer to get some work done while I ate but I needed a password for the internet. I could not work up the nerve to ask the cashier for the internet password. I struggled through my entire lunch, rehearsing in my head how I would ask but ultimately it was too much so I packed up and left. I went back to my car and cried, frustrated with myself that I couldn’t do anything!

I joined a kickboxing gym because I knew that exercise is an important part of overall health. I went once and could never get myself to go back. I drove to the gym and parked in front of it many times, trying to get myself to go in, but I never could.

On my birthday that year, I wanted to go to a certain restaurant but my mom wanted to go somewhere else. Rather than say where I wanted to go (which she would have gladly agreed to), I anxiously went along with her decision and afterward went home and lay in the fetal position on my floor, too anxious to do anything else.

This is where the magic of a dog’s intuition comes in. My dog, Linus, curled up on the floor next to me, making sure his body was touching mine. Feeling his warmth and consistent breathing brought me out of my panic state. Once he sensed that I was more relaxed but still anxious, be brought a ball and asked me to play fetch. My dog has such an amazing sense of where I am on the anxiety scale. If I am mildly anxious, he gets me to play with him. If I am overwhelmed, he comes and sits next to me so we are touching, or lays on top of me.

  • I love his pink nose and big eyes
  • Linus – always with a ball
  • Cuddling

I’ve had people give me tips for what to do when you’re feeling a panic attack coming on: deep breathing, gratitude, observing objects (7 things you can touch, 6 things you can smell, 5 things you can see, etc), essential oils. While some of these things helped (the observing objects made me worse), nothing has been quite as effective as my dog snuggling with me. I’m sure if you have a pet, you’ve experienced this. How is it that they get us so well?

It was a huge relief to me when I learned that lupus was the culprit for my anxiety, to know that it is a medical condition, not just me going crazy. It is important for people to know that mental health issues are medical conditions and should be treated as such. You aren’t a crazy person or a failure or just ingrateful if you have depression or anxiety. I’ve struggled with both and treatment helped tremendously each time. Did you know that the goal of treatment for depression is 100% relief of symptoms? 100%! So if you are still struggling with mental illness, please get help and continue to ask for help until you are free of symptoms!

I eventually started medication to help with the day to day anxiety and it was such a huge help while I adjusted my lifestyle to heal my lupus. My dog was still an everyday companion to my struggles and intuitively supported me when I needed extra help. I’ve used lifestyle (and medication when needed) to regain my health and haven’t had the debilitating anxiety in a while and have been able to wean off my medication.

I still have the occasional anxiety attack, especially after my sister was shot in October, but making sure my nutrition is at its best and having my dog next to me, are keeping me healthy, emotional and physically.

My Sister – International Women’s Day

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My sister is my best friend, mentor, support system, encourager, motivator, inspiration, role model etc.

I’m the oldest but Carla (middle child, though by only 7 minutes) quickly established that she was not to be bossed around. Being the non-confrontational person that I am, I lost control of the siblings probably before Carla could form sentences. Not that this is a bad thing, Carla is a natural leader whereas I am much better as a support person.

It was Carla, not my parents, who told me to knock it off with the PDA with my high school boyfriend. It was Carla who kept me driving safe before she even had her license. It was my sister who got me exercising regularly in college and every time I’ve had time I’ve had to restart after that.  It was my sister who went out with me in college when I needed to get away.

She suffered with me when my heart was broken. She dealt with sharing a room with me for years.  She kept me on task when we studied at home together. She helped me eat better even from far away, making me throw away those donuts I bought while she was on the phone to make sure I did it.

This doesn’t mean I haven’t taken the big sister role when needed. My dad’s favorite story to tell about me was when I slapped an older boy hard across the face because he was bullying my little siblings. No one messes with my family.

Long ago, I decided to write a post about my sister and how she’s one of my biggest supporters and how important it is to have people like that in your life, who call you out and push you to be your best. This is still true of my sister and I am so incredibly thankful that she is alive today.

My sister has been through so much! (For those who don’t know, my sister was shot in October 2018, sustained major internal damage and is paralyzed from the belly button down.)

Months after deciding I wanted to write about my sister, this blog is finally being written because I can’t hold it in any longer.  My sister’s life has completely changed but everything I love about her remains the same. She makes me laugh, makes me feel loved when she laughs at me, is open and honest with me, pushes me to be better, accepts me as I am, encourages me.  She sees those who are hurting or ignored and intentionally seeks them out to befriend them. She is kind and engaging with everyone she meets. She is witty. She is strong. She has a contagious smile. She is determined. She is human.

These past several months have been hard, there’s no candy coating it.  Of course, she’s had a very difficult time but she has taken it all with faith and hope.

Carla often says she doesn’t know how to take it when people say that she’s an inspiration to them,  she’s just living the best she can. But I think people see a glimpse of what I see every day – Carla is a fighter but she does it with such grace that you wouldn’t know it by looking at her. Trust me, she’s fighting and I’m so glad she is. Selfishly, I’m so glad she’s here with me.

I also want to give a shoutout to my amazing mother, sister-in-law, sister’s sister-in-law, and sister’s mother-in-law. They have been put through so much the past few months also and have risen to the occasion and shone. I love them!

I hope you have a strong, beautiful, amazing woman in your life.  Make sure to love on them today and always!

Caregiving when you need a caregiver

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As a woman and a nurse, I am a natural caregiver.  It’s in my blood. Even when I was a little girl, caregiving was my thing.  Of course this caregiving usually extends to others, not myself. When I found out I had lupus, I had to learn to care for myself and make sure I was putting my physical and emotional needs in the forefront.  I’m single without children which made it easier to focus on me. I don’t know how all you moms and spouses out there do it. Fast forward a few years and my body tells me when it needs to rest or needs better nutrition and I’m pretty good at listening.  But something happened in October that changed my life and the lives of my family.

October 18, 2018 my sister was shot while driving home from work. We don’t know who or why.  It was an intentional act with a seemingly random victim. She struggled through three surgeries and came close to not making it.  She had major internal damage and a spinal cord injury that left her paralyzed in the lower half of her body. My sister is a warrior.  Very few people have the strength to deal with what she has gone through. I could go on and on about how amazing she is but I want to talk about what it’s like being a caregiver when you have lupus.  

I know many of you lupies are caring people and have to intentionally make caring for self a priority.  But what happens when it also is your responsibility to care for someone else? Sometimes as lupus warriors need caregivers ourselves.  How do we balance giving our all to care for our loved ones while also caring for ourselves?

I heard a saying once that took some time to sink in for me.  “Self care is other care.” I believed it intellectually but it didn’t hit home until my sister was injured.  I was staying up odd hours to sit at her bedside (we had a rotation schedule so that someone was with her 24/7), I was not eating my regular diet, my routine was out the window, I was stressed, I was caring for my sister as well as other family members, I wasn’t putting myself as a priority.  Thankfully I have an amazing family. My mom recognized that I was starting to be fatigued and advocated for me to get extra sleep and not take so many night shifts. It was sooo hard for me to back up and let other people care for me and my sister (she’s my little sister!) but I realized that accepting help and taking care of myself (which mostly meant sleeping) would allow me to be more helpful in the long run.  My sister has a long road of recovery ahead and I am privileged to spend the next few months with her. Pacing myself and getting what I need for my body is going to allow me to be the best help to her that I can be.

So these are the things I am doing to help myself:

  1. I go to vegan restaurants in the area because that’s what I love to do
  2. I allow myself to sleep in when I need to (as much as possible in a hospital)
  3. I take advantage of people visiting to take naps
  4. I listen to Christmas music
  5. I exercise (swimming, running)
  6. I take long hot showers when I can
  7. I am taking an evening off to go to a concert and trusting that the nursing staff can help care for her for one night and not letting myself feel guilty for that
  8. I signed up for a sprint triathlon near my sister’s house in March so I have something to work towards
  9. I take time to pray
  10. I listen to my body; when it tells me that it is not doing well (through joint pain, headaches, fogginess, fatigue), I take extra steps to help it (cutting out bad foods, increasing good foods, sleeping extra)

My sister is so great and often reminds me to rest and checks in often to make sure I’m doing ok.  I also know that there will come a time very soon when my sister won’t need my help. It is a bittersweet thought.  I’m sure it is harder for those of you who don’t have an end date to your caregiving duties. That is when it is even more important to pace and care for yourself.

So all of this to say when you have lupus, life can be exhausting.  When you’re a caregiver life can be exhausting (even when you’re caring for the most amazing person ever like I am).  A combination of the two can put anyone over the edge. Taking care of you and your lupus often gets placed on the back burner but don’t let it.  I know it sounds cliche but self care is other care! Give yourself a chance to take a break or do something for yourself without feeling guilty about it!  Let others help you without feeling the need to “return the favor.” Ask for help! Do it for you, for your lupus, for your loved one.

And if you don’t have someone you’re caring for, reach out to someone who is a caregiver and find ways to support them!

Love you lupies!

Let me know what you do for self care in the comments!