Symptoms & Reactions

Lupus Hair


I hadn’t heard of the term “Lupus hair” until last year while researching my book, although it was one of my first symptoms of this disease many years ago. Unfortunately, to this day, it remains a problem that I have to face with strength, courage, and dignity…. **



One word to describe my Lupus body today:  Hair

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

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

More details about my physical symptoms:
Today was all about my hair—my Lupus hair. Although it’s something I live with all the time, I often overlook this physical symptom because it’s not life-threatening and has fewer implications than my more serious conditions. But, sometimes, like today, it comes to the forefront and must be addressed. The amount of hair falling out in the shower this morning was alarming. By way of background, Lupus hair is a condition in which Lupus patient’s hair becomes dry, brittle, and falls out from time to time. My dermatologist’s term for the hair loss side of Lupus hair is telogen efuluvium—an extended shedding cycle. He says it happens most often after a Lupus flare or other major illness episode that throws off your normal hair growth cycle. Whatever the technical term for it is, it’s a huge visual reminder of my illness, and I hate it.



One word to describe my Lupus mind today: Over-it!

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

  • Managed expectations
  • Managed stress response
  • Asked for and accepted help
  • Focused on the positive

More details and thoughts about how I’m feeling emotionally today:
I kind of thought I was over the emotions of dealing with m hair loss, but apparently, I’m not. With each major cycle of shedding, I’m reminded that my hair will never be the same. I’m struggling with accepting that yet again. So, today, I decided to go to the two local wig salons to shop for some new hair. I’m not new to wigs, but I don’t like wearing them. One salon was extremely helpful, but the other one, not so much. This was the first time I have had a “wig consultation” – and boy it was fun! I tried on so many wigs of different styles and colors, even a silver gray one. (It looked great, but I’m too young for that color for now.) The wig consultant was more than patient with me, and she helped me find a new beautiful one that we ordered. I hope to get it in about a week and a half.



One word to describe my spirit today: Comforted

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

  • Enjoyed sacred space
  • Meditated, prayed, visualized
  • Embraced uncertainty
  • Loved myself

Thoughts about my spiritual connection and spiritual lessons learned today:
After leaving the wig salon today, I drove the long way home and focused on the beautiful, snow-capped mountains in the distance. Today was actually a warm, sunny day, so visibility was for miles! Once at home, I went to my sacred space, opened the blinds and soaked in the warm afternoon sun, then drifted off to sleep. I felt a deep peace that balanced this morning’s alarming hair dump in the shower. I dreamt of how beautiful I’ll look in my new wig….



Today my meals were:

  • Breakfast: Gluten-free oatmeal with raisins, clementine orange, turkey sausage patty
  • Lunch: Tuna lettuce wrap, cashews
  • Dinner: Italian style chicken thighs, French fries, zucchini
  • Snacks: Handful of walnuts and raisins
  • Water: 60 ounces



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

  • Wigs that beautifully cover my thinning Lupus hair
  • My sacred space
  • Warm sunshine in winter


**(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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