Emotions of Lupus

Facing Uncertainty… Again


On the road of life with Lupus, there are SO many bumps and detours. From unfavorable lab results to emergency medical episodes, the challenge is to manage these bumps in the road with skillful driving, both defensively and offensively.  Today, I’m on the offensive, working with my doctors to make a major change in medications, which leaves me facing uncertainty…again. **



One word to describe my Lupus body today:  Achy

Which habits and rituals did I practice to soothe my Lupus body?

  • Slept well
  • Ate a clean diet
  • Breathed fresh air
  • Stayed hydrated
  • Protected delicate skin
  • Smiled and laughed

More details about my physical symptoms:
Today’s pain didn’t get too bad until this evening while I made dinner—homemade chicken soup (recipe courtesy of the Pioneer Woman, minus the noodles). It was the perfect way to nourish my body after the busy day I had—well, busy for me. Doctor appointment, taking care of a sick Hubby (role reversal time), and cooking. I love to cook and I especially love to cook healthy foods, like this chicken soup. So nourishing! The problem is that this soup, though relatively easy for most people, requires too much standing for me. Just 10 minutes of prepping veggies and separating bones from meat and all the other steps sent my shoulders, elbows, back, hips, and knees into a what I call my zone of unbearable pain. (Yes, I said knees. And yes, it’s a new symptom. I never had knee pain in all these years of living with Lupus.) My usual stopping-to-rest routine didn’t help this time, and the pain continues as I write this tonight, hours later. It ain’t easy eating clean….



One word to describe my Lupus mind today: Fearful

Which habits and rituals did I practice to strengthen my Lupus mind?

  • Managed time and energy
  • Managed stress response
  • Forgave and released
  • Connected with my doctor

More details and thoughts about how I’m feeling emotionally today:
I had my bi-weekly psychotherapy appointment today. Thank goodness. Driving there was an adventure with all the snow and ice. But I was bound and determined to see her. I needed to tell her of how my emotions have been all over the place as I start the transition from one blood thinner, Coumadin, to another one, Pradaxa. After the pulmonary embolism in 2008, and now the recent attack of a-fib, my doctors have expressed their concern over the long-term use of Coumadin and the great outcomes of Pradaxa. I resisted this for a long time because Pradaxa was a new drug, and it didn’t have an antidote to reverse the thin blood in the event of a surgical emergency, like the appendicitis I had in 2013. For good reason, I’m terrified about changing meds—or making any change for that matter. My therapist reassured me that, as long as I remain vigilant and knowledgeable about the side effects and what to do in the event of an adverse reaction, I should not worry. Easy for her to say, right?  I agree that I have to be brave, but frankly, I’m kind of tired of having to be brave all the time….



One word to describe my spirit today: Resilient

Which habits and rituals did I practice to nurture my Lupus spirit?

  • Enjoyed sacred space
  • Meditated, prayed, visualized
  • Cultivated creativity
  • Made someone happy (Hubby)
  • Embraced uncertainty

Thoughts about my spiritual connection and spiritual lessons learned today:
It’s spiritually taxing to find myself facing uncertainty yet again. This time, it’s the unknown outcome of changing blood thinners. Sometimes, all I can remember and connect with is the past awful outcomes of change—be it in medicines or routines, or whatever. (When you have Lupus, change is difficult.) But, as I meditated today, I decided to count the good outcomes of change. It made me think about my hematologist’s words to me during my appointment on Monday, as she wrote the prescription for Pradaxa. She said, “Olivia, you have come such a long way since the first day we met in 2012. This will be so helpful to you.” It was nice to hear her perspective on my health. As I continued to meditate, I began visualizing making even more progress. I focused on the good that the new blood thinner will bring me—no more weekly at-home testing of my INR, no more limiting my diet of dark green vegetables (which I love). More freedom!



Today my meals were:

  • Breakfast: Gluten-free oatmeal with butter, raisins, and apple slices
  • Lunch: Leftover ground turkey taco filling with tomatoes and avocados, wrapped in lettuce
  • Dinner: Homemade chicken soup, Paleo banana muffin
  • Snacks: Gala apple
  • Water: 48 ounces



At least one thing that I’m grateful for today:

  • Great, caring doctors
  • Homemade chicken soup 🙂


**(This post is based on the format of the Lupus Diary that I developed for keeping track of how Lupus affects my body, mind, and spirit, I check-in here once a week to let you know about the more interesting days of my Lupus journey. To learn more about the Lupus Diary, how I developed it, and why I use it, click here.)


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