Symptoms & Reactions

One thing about living with Lupus is that you just never know when the disease will strike. You could be having one of very few glorious days, then out of the blue, something you do or eat will make you sick. I had been warned about a possible garlic reaction in Lupus, but I never experienced one—that is, until today. **

Body

One word to describe my Lupus body today:  Stronger

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

• Slept well
• Ate a clean diet
• Moved and stretched
• Got a gentle massage
• Breathed fresh air
• Stayed hydrated
• Protected delicate skin
• Smiled and laughed

More details about my physical symptoms:
Today was an amazing day. I felt stronger than I have for some time. I’ve been consistently stretching my lower back and riding my new recumbent stationary bike. And it showed during physical therapy today. All was well until I ate dinner. I made baked Asian chicken wings with fresh yellow squash and bok choy in fresh garlic sauce. From the minute I took my first bite of the bok choy, I felt a strange sensation akin to indigestion in my chest. Then, as I tried to ignore it and continued eating, hives came out of nowhere. I’ve been hive free for several months now. Coincidentally, it’s been a while since I’ve eaten garlic—a conscious decision after reading that Lupus patients shouldn’t eat it due to its activation of an enhanced immune response. That’s the last thing those of us with overactive immune systems need, right?

Mind

One word to describe my Lupus mind today: Patient

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

• Managed expectations
• Focused on the positive
• Managed stress response

More details and thoughts about how I’m feeling emotionally today:
To say that feeling stronger today boosted me emotionally would be an understatement. It’s been SO long since I’ve felt his good. Despite the blip with the hive reaction to garlic, I choose to remain optimistic and hopeful that my progress will continue….

Spirit

One word to describe my spirit today: Content

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

• Enjoyed sacred space
• Meditated, prayed, visualized

Thoughts about my spiritual connection and spiritual lessons learned today:
Meditation to the rescue—again! My reaction to night’s dinner was the perfect opportunity to settle my system down to calm the garlic reaction. Couple that with a little prayer of gratitude, and I’m ready for a good night’s sleep. Snoogle, here I come!

Meals

Today my meals were:

• Breakfast: Paleo pancakes, strip of bacon, clementine orange
• Lunch: Homemade sausage and sauerkraut
• Dinner: Baked Asian sesame ginger chicken wings, yellow squash, bok choy in garlic sauce
• Snacks: Mint tea with almond milk
• Water: 51 ounces

Thanks

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

• Physical strength

**(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.)

Last week this time, I was basking in the glow of getting fitted for a new wig. What a difference a week makes, as the downturn in the weather has had a cascading effect on my body, mind, and spirit. Unfortunately, pain and panic quickly ensued, like the fear of being lost in the snowy woods. This is my Lupus Diary entry for Wednesday, February 3, 2016….**

Body

One word to describe my Lupus body today:  Pain

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

• Ate a clean diet
• Breathed fresh air
• Stayed hydrated
• Protected delicate skin

More details about my physical symptoms:
This exceptionally cold and snowy winter, as beautiful as it is, has my joints swollen, hot, and in horrible pain today. I had my three-month follow up with my rheumatologist today, and she said she’s seen an increase in pain levels of all her patients due to the cold. My shoulders, elbows, knees, hips, and lower back are just throbbing with pain and inflammation. I’m living in that vicious pain cycle where I’m exhausted and need sleep, but I’m in too much pain to sleep well. I need some warm sunshine on this weary body, and soon. I hope you’re right about that early Spring, Mr. Groundhog….

Mind

One word to describe my Lupus mind today: Panic

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

• Asked for and accepted help
• Focused on the positive

More details and thoughts about how I’m feeling emotionally today:
The pain level is so high that not only have I been experiencing brain fog, but I’ve also had my first panic attack in some time. That overwhelming feeling of dread and fear and light-headed alarm washed over me just before dinner. I felt like I was lost and couldn’t find my way back to my calm self. I don’t usually tell Hubby about theses episodes, but this time, I asked for his help in calming me down. He held my hand, I put my head on his shoulder as we sat on the sofa, and he rode out with me the awful wave of fear. No Klonopin needed….

Spirit

One word to describe my spirit today: Calmed

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

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

Thoughts about my spiritual connection and spiritual lessons learned today:
Because I don’t as a rule take pain medicine, and now that acupuncture and massage are not an option for now, I find that meditation is my go-to treatment for pain management. Yes, it still helps me connect to spirit, but it also calms the nerves involved in my joint and spine pain. It took a while to get to that calm, meditative state, especially after my panic attack, but it was sweet once I got there…. Taking this special time out of the day for myself is reaping more and more benefits, even with today’s pain and panic.

Meals

Today my meals were:

• Breakfast: Gluten-free oatmeal with raisins, clementine orange
• Lunch: Leftover homemade chicken soup, Paleo pancakes
• Dinner: Baked Italian chicken thighs, Calrose rice, green beans
• Snacks: Mint tea with almond milk
• Water: 55 ounces

Thanks

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

• Hubby

**(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.)

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…. **

Body

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.

Mind

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.

Spirit

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….

Meals

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

Thanks

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.)

It’s common knowledge by now how exhausting Lupus can be. If it’s not your body’s own immune system over-working itself to attack healthy cells, it’s your own mind trying to figure out why you’re having strange symptoms…. **

Body

One word to describe my Lupus body today:  Weak

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

• Breathed fresh air
• Stayed hydrated
• Protected delicate skin

More details about my physical symptoms:
My body feels so strange today that I’m not sure how to describe it. A little light-headed, a little dizzy, and very tired, or empty or something. But, it comes and goes. Much of living with Lupus involves trying to decipher what your body is trying to tell you. Unfortunately, we get a lot of practice with some symptoms—fevers, joint pain, rashes, and on and on. Sometimes, the symptoms are recognizable and predictable, but others, like today, are kind of unfamiliar and out of the blue and you just have no clue why they happen. Those are the kind of strange symptoms that scare me.

Mind

One word to describe my Lupus mind today: Nervous

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

• Managed stress response
• Asked for and accepted help

More details and thoughts about how I’m feeling emotionally today:
With today’s strange symptoms came a lot of fear and anxiety, which resulted in distorting my reality in a big way. I imagined the worse case scenarios, like maybe I was having a stroke because of the a-fib episode (which was over two months ago). Not likely. Or maybe I was reacting poorly to the new blood thinning medication, Pradaxa. Possible, but I was fine for two weeks, so why would I be having symptoms now? I’ve learned from working with my psychotherapist that I have to quickly nip the fearful thinking in the bud. Otherwise, I’ll just spiral down into a pretty dark place and have a full on panic attack. So, Hubby took my blood pressure to see if it was too low, which would explain the dizziness. It was fine, but my heart rate was 117 bpm—a bit too high and, for me, an indication of anxiety’s physical effects. I finally calmed down after dinner and the dizziness went away. Maybe it was as simple as not eating enough during the day. I believe my body is still healing after the latest health crisis, and I have to eat. Today, for some reason, I wasn’t eating as much as I should, and my body let me know it!

Spirit

One word to describe my spirit today: Listening

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

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

Thoughts about my spiritual connection and spiritual lessons learned today:
After dinner tonight, I meditated without the aid of a guided recording. I decided I just wanted to listen to my body. Sometimes, I get so busy trying to manage my body that I don’t actually listen to it and feel it communicate with me. The strange thing is that I used to be so in tune with my body before I got really sick. Centering myself was easy and effortless. I could access that center anywhere at anytime. There was no pain or fear getting in the way. Now, I have to work my way around those physical and emotional issues to get to the core of my spirit. My spirit knows what’s going on. I need to do better to listen and learn what to do to get back to an easy place with it.

Meals

Today my meals were:

• Breakfast: Gluten-free oatmeal, half of a Gala apple, small sausage patty
• Lunch: Sliced homemade roasted turkey, cooked kale, rice
• Dinner: Scrambled eggs, green salad with avocado, hash brown potatoes
• Snacks: Pumpkin seeds
• Water: 48 ounces

Thanks

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

• A resilient spirit
• Ability to meditate

**(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.)

Winter has never been one of my favorite seasons, even prior to my Lupus diagnosis. Yes, there’s definitely beauty in the season, especially with our breath-taking views of the snow-capped Sierra mountains. But all the cold and darkness make them hard to enjoy. And, now that I’m living with Lupus, the painful physical and emotional effects of winter take a toll on me like never before. It simply makes me want to burrow in a nice warm place for a long winter’s nap. Welcome to Lupus in winter. Wake me up when it’s all over…. **

Body

One word to describe my Lupus body today:  Cold

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

• Slept well
• Ate a clean diet
• Moved and stretched
• Protected delicate skin

More details about my physical symptoms:
It’s cold outside. Cold, like 20 degrees during the day and single digits at night here in Reno. Brrr! My muscles and bones don’t do well in this weather, but my lungs are especially affected. Breathing in cold outside air is painful and restricted, and the effects of it linger even after I’ve returned to warmer indoor air. Between this awful pleuritic chest pain and asthma-like reaction to the cold, the up and down joint and muscle pain, and the lingering palpitations from my previous attack of a-fib, I’m basically down for the count. Because of this, since Christmas, I’ve canceled my regularly scheduled doctor appointments in favor of hibernating, so to speak. Although it’s only just begun, Lupus in winter has me longing for Spring….

Mind

One word to describe my Lupus mind today: Fighting

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

• Managed expectations
• Managed stress response

More details and thoughts about how I’m feeling emotionally today:
It’s SO very hard fight depression when your body fails you so often. Top that reality with the darkness and cold of this time of year, and you have a guaranteed formula for deep sadness. I’m fighting it with all my might right now. One of the appointments I canceled this week because of the cold was with my psychotherapist. I now wish I had mustered the energy and found a way to deal with the pain long enough to make it in to see her. I’m not sure I can wax philosophical today. I’m just swinging my mental fists to knock out depression—or at least knock it down so that I can make it through today …and tomorrow. The phrase, “one day at a time” has never been more true for me.

Spirit

One word to describe my spirit today: Resilient

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

• Meditated, prayed, visualized

Thoughts about my spiritual connection and spiritual lessons learned today:
Sometimes, I wonder where I get the strength to keep fighting to LIVE with this awful disease. Days like today make my existence sometimes just too much to bear, but for some reason, deep down inside of me, there’s a resilience that doesn’t go away. It’s hard to put my finger on it, but I think it comes from a spiritual place. You know, the idea of never giving up no matter what. That still small voice in me simply whispers, “Get up.” The roots of my spiritual connection keep me determined not to lose, not to be the victim of anyone or anything—even Lupus. Especially Lupus. My spiritual resilience helps me when nothing else will. I’m tapping into it today and praying that it never goes away….

Meals

Today my meals were:

• Breakfast: Gluten-free oatmeal with chopped apple and raisins (so good!)
• Lunch: Homemade tuna salad sandwich on gluten-free bread
• Dinner: Homemade Italian chicken thighs, rice, spinach
• Snacks: Cashews
• Water: 48 ounces

Thanks

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

• My spiritual resilience
• A warm, lovely home

**(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.)

It’s two days before Christmas, and as I struggle to gear up for the holiday “break,” I’m reminded that there’s really no break from Lupus. The holiday is full of memories of Christmas sugar cookies and hope for the future. I cling to those while dealing with the pain and limitations of the present…. **

Body

One word to describe my Lupus body today:  Throbbing

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

• Slept well
• Smiled and laughed
• Protected delicate skin
• Breathed fresh air

More details about my physical symptoms:
It’s nearing the end of the year, and my insurance for physical therapy sessions has run out. I’m limited to 25 sessions per year, so we try to spread them out as much as possible—one session per week. It’s really the worst possible time to run out, too, because with all the holiday activity, my body is literally throbbing all over. Even with the pain, I pushed myself to bake my traditional gluten-free Christmas sugar cookies today, an indulgence that I refuse to give up at this time of year. My son and I used to bake them when he was much younger, and it just wouldn’t be Christmas without them. And, after all the heart a-fib drama just before Thanksgiving, I’m reminded that life is too short not to have my gluten-free Christmas sugar cookies! (I’m sure I’ll pay the price with a bit more inflammation, but it’ll be worth it, I hope.)

Mind

One word to describe my Lupus mind today: Pensive

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

• Managed expectations
• Managed time and energy
• Asked for and accepted help

More details and thoughts about how I’m feeling emotionally today:
Being chronically ill at holiday time gives you a lot to think about—much like the story, A Christmas Carol. The ghosts of Christmas past, present, and future haunt me—as I reminisce about happier holidays when I was healthier and felt better, mostly during my childhood; as I think about how much of a physical struggle it is now just to get through this “festive” season; and as I wonder whether or not I’ll be around next Christmas at all. I remind myself that these are just thoughts and that I should not let them consume me, but it’s difficult….

Spirit

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

Thoughts about my spiritual connection and spiritual lessons learned today:
My spiritual connection at Christmas time is the one thing that has remained constant no matter how poorly I’m feeling. Celebrating the birth of the Light of the World when there’s so much darkness and pain gives me comfort, hope, and joy for the world and for myself. It puts everything into perspective—giving me just what I need to get out of my own head and into the celebration of the meaning and Spirit of Christmas.

Meals

Today my meals were:

• Breakfast: Omelet, homemade salsa
• Lunch: Paleo banana muffin, Gala apple
• Dinner: Homemade pasta sauce with gluten-free penne pasta
• Snacks: Gluten-free pretzels
• Water: 37 ounces

Thanks

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

• Christmas Light
• Family

**(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.)

For those of us living with Lupus, sleep comes with the territory. On a normal basis, we live with debilitating fatigue that requires us to get upwards of 10 to 12 hours of sleep just to be able to function in the world. When we’re healing from a Lupus flare or some other related episode, as I am after my episode of atrial fibrillation last week, we need even more sleep. Healing, restful sleep…. **

Body

One word to describe my Lupus body today:  Healing (Still)

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

• Slept well
• Stayed hydrated
• Ate a clean diet
• Was intimate

More details about my physical symptoms:
Today, I slept more than I have for some time. After the hospital stay (due to my episode of atrial fibrillation, or a-fib), there was Thanksgiving with family, then more doctor appointments and physical therapy. My Lupus body demanded rest after all the activity. Knowing that it takes longer for people with Lupus to heal than it does for everyone else, I didn’t really have a choice in the matter. There’s nothing like sleep to help a body heal…

Mind

One word to describe my Lupus mind today: Thoughtful

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

• Managed expectations
• Protected alone time
• Learned about Lupus
• Connected with doctor

More details and thoughts about how I’m feeling emotionally today:
Because today was really the first day I’ve had to myself, I decided to allow my thoughts about what my body just went through to pass without processing (read: overthinking) too much. And, boy that wasn’t easy because the thoughts were all over the place—mostly fearful what-ifs related to the hospital stay, reliving the emergency, dismissing the lingering chest pain, and pondering the question–why did this happen? Thankfully, I’ve connected with several of my doctors since the episode, and I felt reassured and fairly confident in dispelling most of the thoughts so that I could get some rest.

Spirit

One word to describe my spirit today: Loved

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:
Today, I loved myself by allowing glorious sleep in the sacred space of my bed. I don’t usually think of my bed in this way, but today was different because it wasn’t just because of my normal Lupus fatigue. Sleeping today was more fulfilling, healing, and restful. Also today, I felt even more love when Hubby brought me a bit of Spring on this cold, windy, and dreary day in December. Yep, he brought me a bunch of beautiful, fragrant roses! My favorite. I was so touched by not only the visual loveliness of the flowers, but also by how he goes out of his way to make me smile. As if his devotion in the hospital wasn’t enough, he goes and does this. His love fills my spirit to overflowing.

Spirit

Today my meals were:

• Breakfast: Scrambled egg (organic), fresh bacon, gluten-free cinnamon raisin toast
• Lunch: Homemade tuna sandwich on gluten-free bread
• Dinner: Homemade (crockpot) Navy bean soup, chicken wings, green salad
• Snacks: Cashews
• Water: 48 ounces

Thanks

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

• A wonderful Hubby
• Beautiful roses from Hubby

**(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.)

Winter’s coming, and it seems a bit early this year. Our first snow has fallen, and cold winds are blowing. With all this comes a familiar battle—one that takes all the strength and courage I can muster to meet it head on. Yes, I’m talking about the battle of Lupus versus my body, mind, and spirit….  **

Body

One word to describe my Lupus body today:

Cold

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

• Slept well
• Breathed fresh air
• Stayed hydrated
• Protected delicate skin
• Moved and stretched

More details about my physical symptoms:

While all the snow is beautiful and the smell of winter blows in the brisk mountain air, it’s cold outside. And, my body is feeling it. I find myself thinking about old folks lamenting about how the weather affects them,”The rain’s comin’, and I can feel it in ma bones!” Well for me, it’s the cold air’s coming, and I can feel it in my muscles, my joints, my nerves, and my chest when I breathe in the cold air. No matter how many times the seasons change, my Lupus body takes a while to adjust.

x

Mind

One word to describe my Lupus mind today:

Fighting

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

• Focused on the positive
• Managed time and energy
• Managed stress response

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

My Lupus mind is in battle mode again. Well it always is, but today was especially difficult fighting the inclination to become negative, anxious, and overwhelmed. The battle rages on even though I spent a lovely Veterans Day with Hubby. He has no idea what’s going on behind my eyes. It’s all because the infamous instigator is at it again—PAIN. Today’s pain is like a vibrating musician’s tuning fork. Each tap of pain reverberates slowly until it finally dissipates, only to be replaced by another tap. Even with the pain and negative thought, I consider today a victory because I didn’t give in.

x

Spirit

One word to describe my spirit today:

Loved

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

• Enjoyed sacred space
• Meditated, prayed, visualized
• Made someone happy
• Embraced uncertainty

Thoughts about my spiritual connection and spiritual lessons learned today:

What’s the closest antidote to pain? Experiencing and being surrounded by love. Today, I felt lots of love from my Hubby, and surprisingly from myself. No work, no plans, no routine. Just an enjoyable day together. The pain, though ever-present and demanding, was no match for the special connection I had today. Thank you God.

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Meals

Today my meals were:

• Breakfast: Scrambled egg, applesauce
• Lunch: Cedar grilled lemon chicken from Applebee’s (definitely not clean eating, but the best while Hubby enjoyed his free Veteran’s Day meal)
• Dinner: Leftover chicken breast, corn and peas
• Snacks: Gluten-free pretzels
• Water: 63 ounces

x

Thanks

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

• An enjoyable day with Hubby
• Snow-capped mountain view from my house

**(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.)

Some mornings, not very often lately, I awaken with a Lupus body that’s not screaming in pain. Some days, it actually responds well to the therapies I’m constantly putting it through. Today was one of those cherished days, when I received a surprise gift of manageable Lupus pain. And I made the most of it…. **

Body

One word to describe my Lupus body today:  Cooperative

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

• Slept well
• Stayed hydrated
• Ate a clean diet
• Moved and stretched

More details about my physical symptoms:
My Lupus body cooperated more today than it has for some time. Yes, there was pain today, but it was manageable—so much so that I actually got on the exercise bike for a whole 10 minutes! It wasn’t easy, but I did it. The last time I was able to do that was in June, just before the hives situation started. I think yesterday’s physical therapy and Chinese cupping therapy session must have really helped. This cupping therapy has been added to my acupuncture regimen to help with the Lupus arthritis pain in my back, hips, and shoulder. I hope this feeling of manageable pain lasts…. What a gift!

x

Mind

One word to describe my Lupus mind today: Strong

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

• Managed expectations
• Focused on the positive
• Protected alone time

More details and thoughts about how I’m feeling emotionally today:
Having a day of manageable pain gave me a sense of emotional strength that I haven’t felt for a while. It didn’t feel like work to practice the “Focus on the Positive” habit—it came naturally today. I also got a jolt of joy when I received the first 20 printed copies of my new book, Live a Beautiful Life with Lupus, in the mail. I feel an enormous sense of accomplishment for having finished it, especially during one of the most difficult summers of my life.

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Spirit

One word to describe my spirit today: Uplifted

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

• Enjoyed sacred space
• Meditated, prayed, visualized
• Worked on finding and living my purpose

Thoughts about my spiritual connection and spiritual lessons learned today:
My spiritual cup runneth over today. I had the rare opportunity to be creative! Yes, I spent some time writing, and working on a few paintings, and editing a few old photographs—just for the fun of it. The sense of joy that I’m feeling has wrapped itself around me like a warm blanket on a snowy day. Did I mention that it snowed today? So beautiful!

Meals

Today my meals were:

• Breakfast: Paleo banana muffin, Gala apple
• Lunch: Homemade potato leek soup
• Dinner: Homemade pork tenderloin (crock pot style), carrots, mushrooms, rice, broccoli (I was hungry tonight!)
• Snacks: Homemade cornbread
• Water: 68 ounces

Thanks

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

• Manageable pain days
• Warn home on a snowy day
• My son

**(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.)

Usually after a day with filled appointments or other activity, I have to take the next day to recover. I plan to stay in bed, or at least sleep late to make up for the extra energy expended. It’s a familiar pattern, my norm. Today was a recovery day, reflective of a busy yesterday…. **

Body

One word to describe my Lupus body today:  Sneezy

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

• Ate a clean diet
• Slept well
• Stayed hydrated

More details about my physical symptoms:
I woke up the same way I went to bed last night—sneezing with awful sinus pressure on the right side of my face. It started at the end of my busy day with two doctor appointments yesterday. I hope I didn’t pick up a germ from anybody. Our susceptibility to infection is increased with Lupus, as my doctor reminded me today. I’m thinking (hoping), though, that this may be simply allergies. So, after adding antihistamines to my mix of medications early this morning, I slept most of the day.

Mind

One word to describe my Lupus mind today: Reflective

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

• Connected with my doctor
• Protect alone time
• Managed expectations

More details and thoughts about how I’m feeling emotionally today:
Despite sleeping and being drowsy all day, I found myself thinking about my day yesterday. Between my appointments with my allergist and rheumatologist, I attended a meeting of a rotary club. I was invited by a kind woman I met at a memorial service recently. This was the first professional-type event for me since I stopped working due to the Lupus. It was nice to be around professional people again, but the fast paced interaction was very taxing on me. I was excited to be there, but relieved when the meeting was over. I kept wondering if the Lupus was showing.

Spirit

One word to describe my spirit today: Grateful

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

• Loved myself
• Meditated, prayed, visualized

Thoughts about my spiritual connection and spiritual lessons learned today:
Although I spent the day in bed—which happens more than I’d like–I was thinking how wonderful it is that I’m free to not have to go to work. That I can focus on my health, which often feels like a full-time job with all the doctor appointments and medical records to maintain. Sleep and rest are so important for managing this disease, and I’m so grateful that I can.

Meals

Today my meals were:

• Breakfast: Gluten-free oatmeal, gluten-free toast, orange
• Lunch: Homemade pasta sauce over gluten-free pasta
• Dinner: Homemade chicken soup, Paleo banana muffin
• Snacks: Gala apple

Thanks

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

• My bed
• My retirement

**(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.)

Once upon a time, I was well known for having a keen eye for detail and a habit of being alert and prompt. Not completely sure if it’s the Lupus or the Lupus medications that are responsible, but I  now find myself on the opposite end of the spectrum—no more Ms. Perfectly Punctual anymore…. **

Body

One word to describe my Lupus body today:  Strange

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

• Slept well
• Ate a clean diet
• Moved and stretched
• Stayed hydrated

More details about my physical symptoms:
Today was busy and exhausting with appointments for physical therapy, acupuncture, and psychotherapy in that order. I got the normal working over on my hips, back, and shoulder at physical therapy. Acupuncture on the other hand was strange. She arranged needles to address my ongoing shoulder pain, and it seems to make the pain worse. I even noticed at dinner, a few hours later that hives popped upon my hands where the needles were.

Mind

One word to describe my Lupus mind today: Foggy

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

• Connected with my doctor
• Managed expectations
• Managed stress response

More details and thoughts about how I’m feeling emotionally today:
So, after leaving acupuncture, I was so foggy and loopy that I did not remember my appointment time with my psychotherapist. I thought it was at 2:00 pm, so I went to my favorite organic foods restaurant for a healthy cup of homemade soup. Just as I began to eat, the receptionist called me asking where I was. I can’t believe it–even with an appointment card and my smartphone calendar, I still messed up my schedule. I think acupuncture contributes to my Lupus fog sometimes. Thank goodness, another patient cancelled so I was able to see my doctor.

Spirit

One word to describe my spirit today: Resolute

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

• Loved myself

Thoughts about my spiritual connection and spiritual lessons learned today:
With the exhaustion and fogginess, and today’s appointment mix-up, I didn’t have much opportunity to focus consciously on my spirit; however, I felt my connection spirit unconsciously. I felt a quiet resolve to stay strong despite the fog slowly swirling around me.

Meals

Today my meals were:

• Breakfast: Anti-inflammatory shake, scrambled eggs on gluten-free toast
• Lunch: Aztec soup from Grate Full Gardens restaurant, side of gluten-free toast
• Dinner: Gluten-free pasta, homemade marinara sauce with ground turkey
• Snacks: Gala apple

Thanks

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

• Clouds. (Never thought I’d say that while living in dreary Washington, D.C. for most of my life. Now, living at a sunny high altitude in Reno, NV, clouds and rain are a welcome break from the harmful-to-my-skin UV rays.)

**(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.)

The inability to sleep is one of the quieter ways we Lupus patients suffer. When nighttime rolls around, everything that was bothering you during the day seems to amplify a bit. When this happens night after night, the repercussions are enormous. And, I’m not sure calling it insomnia does it justice….  **

Body

One word to describe my Lupus body today:  Insomnia

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

• Ate a Clean Diet
• Moved and Stretched
• Stayed Hydrated

More details about my physical symptoms:
I’m having trouble sleeping, and it’s wearing me down. Before the frozen shoulder syndrome diagnosis, sleeping was difficult but manageable. With the pain in my chest, hips, and  back, there was only one position that enabled me to go to sleep with less pain–on my right side. Sleeping on my left side was out because of the painful scar tissue leftover from my pulmonary embolism; sleeping on my stomach for some reason caused difficulty with breathing; sleeping on my back caused pain in my hips and legs. So, my right side was my go-to position. But now that I have the adhesive scapulitis in my right shoulder, I can’t sleep. Something’s got to give here. Lupus can’t take away my sleep, too!

Mind

One word to describe my Lupus mind today: Unsettled

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

• Managed Expectations
• Managed Stress Response
• Connected with My Doctor

More details and thoughts about how I’m feeling emotionally today:
Physical pain and lack of sleep are making me terribly unsettled. In addition, I’m having to add to my schedule yet another session of physical therapy because of the frozen shoulder. I had my schedule to the point where it was manageable for my energy level and pain. So, adding more to it is just too much. It seems that anxiety rears it’s ugly head again. Thankfully, I was able to work on it with my psychotherapist today. She always has great insights and reminds me that I’m more than my anxiety. She said that I must remember that this feeling too will pass as I settle into my routine again.

Spirit

One word to describe my spirit today: Unanchored

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

• Meditated, Prayed, Visualized

Thoughts about my spiritual connection and spiritual lessons learned today:
I’m looking for peace today. It’s elusive, as I drift about spiritually. Meditation feels like a futile exercise. I did it anyway, but I’m in no way centered at this point.

Meals

Today my meals were:

• Breakfast: Paleo banana muffin
• Lunch: Homemade chicken salad sandwich on gluten-free bread
• Dinner: Turkey meatloaf, sweet potatoes, green beans
• Snacks: Gala apple

Thanks

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

• My psychotherapist

**(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.)