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The Lupus Lifestyle

Lifestyle Tips for Thriving with Lupus

lifestyle

Don’t take ________ for granted

March 16, 2019 by Chelsea Leave a Comment

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!

Filed Under: Exercise, Uncategorized Tagged With: bike, exercise, lifestyle, lupus, lupuslifestyle, race, run, sprint triathlon, swim, triathlon, use it or lose it

My Emotional Support Dog

February 21, 2019 by Chelsea Leave a Comment

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.

Filed Under: Emotional Support Dog Tagged With: anxiety, dog, emotional support dog, lifestyle, lupus, mental health, national love your pet day, pet, rescue dog

Caregiving when you need a caregiver

January 15, 2019 by Chelsea Leave a Comment

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!

Filed Under: Uncategorized Tagged With: caregiving, lifestyle, lupus, self care

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