Emotions of Lupus

A Silver Lining?

As I continue healing and making my way back to my “normal,” I find myself getting excited again about the possibilities this emergency has brought to light. A couple of new medications, vivid dreams, and a spirit reconnecting to its creativity are showing me that there is a proverbial silver lining here with this latest medical emergency….**



One word to describe my Lupus body today:  Healing

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

  • Slept well
  • Ate a Clean Diet
  • Got a Gentle Massage
  • Stayed Hydrated

More details about my physical symptoms:

My body is still recovering after nearly three weeks, but I’m definitely getting back to my normal. I had physical therapy today to treat my usual issues—low back and hip pain, and the lingering shoulder issue. The gentle massage was both exhausting and healing at the same time, probably due to my heart. Speaking of my heart, my internist came through and got the cardiology department to see me sooner than planned. I learned that there’s are two drugs that can help me avoid the risk associated with a-fib and possibly prevent it from happening again. Woot! (See the “More” section below for all the details about my visit to the cardiologist.)



One word to describe my Lupus mind today: Dreamy

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

  • Managed expectations
  • Focused on the positive
  • Learned about Lupus

Connected with my doctor

More details and thoughts about how I’m feeling emotionally today:

I also saw my psychotherapist today. We discussed the very vivid dreams I’ve been having since leaving the hospital. The recurring theme is a wrinkly old man in a green hood following me around, and despite my best attempts to be rid of him, he persisted, popping up everywhere. It was like trying to swat away an annoying fly buzzing around your ear. It doesn’t take a rocket scientist to figure this one out. Yep, the persistent old man represents Lupus, and my strong desire to be done with it! But instead of seeing the old man as a problem, I’m going to have to find a way to live with him and find the good in him.



One word to describe my spirit today: Excited

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

  • Enjoyed sacred space
  • Meditated, prayed, visualized
  • Cultivated creativity
  • Worked on my purpose

Thoughts about my spiritual connection and spiritual lessons learned today:

I’ve been spending a lot of time in my sacred space, which also serves as our guest bedroom on the rare occasion of our having overnight visitors. As I meditated in there today, I felt a strong urge to express my spirit visually. I miss painting and just putting colors down on paper or fabric. It’s so therapeutic for me! I haven’t done it in a while, and I’m thinking it’s because I normally would use my desk in the office for my art time, but the energy in there is taken over by the electronics and the vibe is more about writing than painting. So, I’m asking Hubby to find a small art desk to put in there so that I can set up my paints and pens and get started. I’m so excited! Sometimes fear and pain, for me, can only be balanced out by using them to create something beautiful.



Today my meals were:

  • Breakfast: Spinach and bacon omelet, Paleo pancakes
  • Lunch: Tuna salad sandwich on gluten-free bread, sweet potato fries
  • Dinner: Arugula and beet salad, chicken and black beans
  • Snacks: Gala apple
  • Water: 36 ounces



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

  • An attentive cardiologist who cares
  • The ability to quiet myself and connect to Spirit



At Monday’s appointment with my cardiologist (my first follow up with him since the a-fib), he explained that the current state of my heart health is due to the strain put on it by the pulmonary embolism (PE) in 2008. The multiple clots that made their way to my lungs back then went through my heart first, enlarging it and weakening it. So this a-fib episode, he said, was indirectly associated with Lupus because the Lupus anticoagulant that caused the PE is what weakened my heart, which led to the a-fib. So to keep my heart beating regularly, I’ll now have to start taking Toprol, a beta blocker. I’m familiar with this drug because it was given to me in the hospital back in 2008 when I had the PE. This time, thankfully my dose is much lower than before and hopefully won’t make me too sleepy like it used to.

I’m feeling more relieved than ever after my appointment with the cardiologist. Sensing my concerns he held my hands and explained to me that, although a-fib is a serious condition due to the risk of stroke, my body is protected by the Coumadin (blood thinner) I take every day. He does want me to consider taking one of the newer classes of blood thinners, which he knows I’ve been reluctant to do because they’re so new and because there was no real antidote to reverse the thinner blood should I have an emergency like the appendicitis that required surgery a couple of years ago. At that time, in order for the surgeon to safely perform an appendectomy, I had to have a transfusion of plasma to thicken my blood before the surgery. It was a scary time, and had I been on one of the newer classes of blood thinners, who knows what they would have had to do to thicken my blood before surgery.

Now that there’s an antidote to Pradaxa, I’m seriously considering switching. Knowing that there’s an antidote is reassuring, and the thought of not having to test my INR (which stands for “international normalized ratio,” a measure of blood thickness) every week is enticing. On the one hand, I like knowing how thick or thin my blood is—it gives me a sense of control, but on the other, it’s also a big pain to do, and when my INR is too high or too low, I get nervous. The new drug would eliminate all that. So, we’ll see. I’m still thinking about it and when I see my hematologist on January 4th, we’ll see what she has to say….


**(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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