Emotions of Lupus

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. **

Body

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….

Mind

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….

Spirit

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!

Meals

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

Thanks

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.)

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….**

Body

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.)

Mind

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.

Spirit

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.

Meals

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

More

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

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

More

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.)

When you live with Lupus, medical emergencies can become a way of life. Surviving them takes the effort of hospitals, doctors, and the right medicines; but fighting your way back from them once you’re “out-of-the-woods” is all you. Fighting my way back today …. **

Body

One word to describe my Lupus body today:  Heart

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

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

More details about my physical symptoms:
I saw my internist today for my first official “hospital follow up.” The concerned look on her face kind of took me aback, as she explained the seriousness of my episode of a-fib. She had the nurse run another EKG after she listened to my heart and breathing through the stethoscope and heard “a few extra beats,” as she put it. The EKG didn’t pick up a-fib, thankfully. I explained my lingering exhaustion, continued palpitations, and difficulty sleeping when lying down flat. She called my cardiologist to request an appointment sooner than the December 29th appointment that they scheduled for me. I thought that was a little too far out from my hospital release date of November 23rd, but apparently, she has more clout than I do…. Thank goodness!

Mind

One word to describe my Lupus mind today: Emotional

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:
“You’ve been through so much.” That’s the phrase I hear over and over again—from friends, family, and today, my doctor. I agree. Yes, it’s true. But, hearing those words leaves me somewhat emotional because I spend most of my days focused on living now—not thinking too much about the future, and definitely not remembering all the painful, scary episodes in the hospital fighting for my life. So, when I hear that phrase, it’s like playing a flashback reel of my life over the last few years. I don’t like “my life flashing before my eyes” for any reason. Ha! Anyway, I’ve spent most of the day trying not to think about it, but I’m finding it hard to hold back the tears tonight. Sometimes, it’s all just too much to bear. Crying is good, right?

Spirit

One word to describe my spirit today: Peace

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

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

Thoughts about my spiritual connection and spiritual lessons learned today:
This unsettled spirit of mine is getting a bit desperate for peace at this point. Lupus keeps me in a battle as it tries to take over with these surprise attacks. Surviving the immediate life-threatening part of the episode is only Act I. Act II is full of adjusting, healing, reflecting, and recovering. My spirit must be strong enough to fight and get through it, and my strength comes from a personal peaceful place. Peace, so elusive sometimes, where are you today?

Meals

Today my meals were:

• Breakfast: Paleo banana muffin, Gala apple
• Lunch: BLT on gluten-free bread (Nitrite-free bacon)
• Dinner: Homemade chicken soup, gluten-free corn bread
• Snacks: Gluten-free pretzels
• Water: 48 ounces

Thanks

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

• A doctor who will fight for me

**(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.)

No matter how important a day is to you or much you think things are under control with this disease, Lupus finds a way to surprise and distract you. It demands attention, sometimes out of the blue. Like today, during the first day of my son’s visit from the East coast….  **

Body

One word to describe my Lupus body today:  Weak

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

• Slept Well
• Breathed Fresh Air
• Ate a Clean Diet
• Stayed hydrated

More details about my physical symptoms:
Despite sleeping well last night, my muscles are extremely weak and in knots—just about everywhere. My back, my neck, my shoulder, my hips. My hands and fingers hurt, too. This is strange even for me. The technical term for this is myositis—inflammation of the muscles. With each movement, the weakness worsened to the point where my legs would give way or I began dropping things, like the slippery raw chicken I was trying to carry to the oven for dinner. It nearly slipped off the broiler and went flying across the room because it became too heavy to hold. *Sigh…* Thankfully, my son, visiting from the East coast, was there in the nick of time to prevent a disaster.

Mind

One word to describe my Lupus mind today: Distracted

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

• Managed stress response
• Managed expectations
• Managed time and energy

More details and thoughts about how I’m feeling emotionally today:
Some days, I can make it through without thinking about Lupus all the time. Not today. Today, my body reminded me of this disease from the moment I woke up. Lupus was screaming loud and clear. I tried not to scream back because it makes everything worse. Imagine how it is when you get angry—your muscles tense up, your heart rate increases, and the flood of adrenaline just sends you out of your peaceful place. Well, the consequences of anger when you have Lupus could very well send you into an all out flare. So, instead of going toe-to-toe with Lupus, I had to treat it like a toddler having a temper tantrum. I told it to sit down in the corner and be quiet! Like a toddler, it didn’t listen….

Spirit

One word to describe my spirit today: Listening

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

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

Thoughts about my spiritual connection and spiritual lessons learned today:
As Lupus did its thing to my muscles today, I couldn’t help but wonder if there was something I did to aggravate it. Maybe my diet or stress levels in the days prior could be to blame. So, I spent a good part of the day getting quiet with myself to listen to and connect with Lupus. To hear it out. To find out what I could do to calm it down. As I visualized and meditated on those thoughts, I was blessed with a sweet nap. I’m still not sure why my muscles are behaving so badly, but I think Lupus knows that I’m listening.

Meals

Today my meals were:

• Breakfast: Paleo banana muffin, Gala apple
• Lunch: Chicken breast, Spanish rice, beans
• Dinner: Homemade chicken soup
• Snacks: None

Thanks

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

• A quiet and peaceful home
• Visiting 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.)

Sometimes living with Lupus gives me the opportunity to experience something new, and sometimes it opens my eyes about something that’s been there all along. Most times, what I learn isn’t good, but today’s revelations were…. **

Body

One word to describe my Lupus body today:  Shoulder

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

• Ate a clean diet
• Stayed hydrated
• Breathed fresh air
• Smiled and laughed

More details about my physical symptoms:
My frozen shoulder (adhesive capulitis, described in this earlier post) got lots of attention today. This morning, I had physical therapy, which consisted of manual therapeutic massage of my rigid muscles (ahhhh), followed by ultrasound to help with pain. After that, my shoulder was treated to electrical stimulation and an ice pack, simultaneously, to help with reducing the inflammation. I thought we were trying to “thaw” my frozen shoulder, not freeze it even more with ice–too cold! This afternoon, I made my way to my acupuncture appointment, where she added “cupping” to my regimen. Like acupuncture, cupping is a traditional Chinese-based alternative therapy. Unlike acupuncture, there are no needles; instead, cupping uses glass bulbs with a pump on the end to create suction. This increases blood flow to the area and promotes healing and pain relief, my acupuncturist said. I must say, even though I have big red circles on and around my shoulder where the cups were, this new treatment seems to be helping to reduce my pain level. Who knew?

Mind

One word to describe my Lupus mind today: Confused

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

• Asked for and accepted help
• Connected with my doctor

More details and thoughts about how I’m feeling emotionally today:
As if going through a full day of treatments on my shoulder wasn’t enough, I also had my bi-weekly psychotherapy appointment sandwiched between physical therapy and acupuncture. I really need these appointments with my psychotherapist to deal with the ongoing anxiety of living with Lupus. No matter how much I pick it apart, dissect its origins, and try to come up with a way to eliminate it, the anxiety is always there; waxing and waning, but always there. Both Hubby and my doctor reminded me today that it’s more of a physical anxiety, due to the pain. I know people living with Lupus live with some level of pain everyday. Having the anxiety along side it is just very difficult to accept, and even harder to manage. I wish it were as simple for me to understand as it is for them.

Spirit

One word to describe my spirit today: Connected

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

• Meditated, prayed, visualized
• Enjoyed sacred space

Thoughts about my spiritual connection and spiritual lessons learned today:
The center where I receive my acupuncture (and now cupping) therapy is a beautifully serene place, complete with all the sights, smells, and sounds one would expect…. Asian artwork, silk fabric banners, essential oil fragrance wafting through the air, soft New Age music piped in every room. It’s so conducive to meditation, prayer, and visualization that I always find myself extremely spiritually connected there. Today, with the extra treatment, I was so happy to be able to meditate even longer than normal. It’s a blessing to have yet another sacred space to call my own, even if it’s just during my session.

Meals

Today my meals were:

• Breakfast: Paleo banana muffin, Gala apple
• Lunch: Sliced turkey sandwich on gluten-free bread
• Dinner: Wild Alaskan salmon croquettes, grits, spinach
• Snacks: None

Thanks

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

• Recognizing that I have two sacred spaces–one at home and one at my acupuncturist’s office
• My psychotherapist
• My 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.)

Much of what we read and hear about chronic disease leaves us feeling a bit helpless and discouraged. Today, though, my spirits are up way high. I’m not letting the ever-increasing debilitating arthritic pain get me down. I’m defiantly faithful amidst the pain…. **

Body

One word to describe my Lupus body today:  Arthritis

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

• Ate a clean diet
• Stayed hydrated
• Slept well

More details about my physical symptoms:
Dominating my Lupus body today was the arthritic pain in my hips, back, neck, and the latest to be thrown in the mix—my shoulder. Adhesive scapulitis, or frozen shoulder, is another condition common in Lupus patients. It came on suddenly—the horrible pain and inability to move my arm up, down sideways, backwards. Simple tasks like putting on deodorant, getting dressed, or taking care of business in the bathroom requires help. This has been going on for weeks now. At least, I’m finally able to get a good night’s sleep after Hubby found a special body pillow called Snoogle. It’s for pregnant women to support the weight of the baby on the back and other joints, but it works great for my arthritic joints and bones, too. I put the Snoogle up there with my Bed Buddy to help me get a good night’s sleep.

Mind

One word to describe my Lupus mind today: Still

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

• Learned about Lupus
• Managed expectations

More details and thoughts about how I’m feeling emotionally today:
When I’m having an extra painful day like today, I quiet myself. Today, instead of working like crazy to finish my book-related tasks, I decided to read more about the latest addition to my pain repertoire—frozen shoulder. Learning that it’s related to Lupus wasn’t entirely surprising, but at least I know what to expect and how to treat it. Nothing like knowledge to help you manage your expectations.

Spirit

One word to describe my spirit today: Faith-filled

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

• Embraced uncertainty
• Enjoyed sacred space

Thoughts about my spiritual connection and spiritual lessons learned today:
Despite all the pain, my spirits were high today. Maybe it was the sunshine and cooler weather or maybe it was just knowing that I’m taken care of. Or, maybe it’s the idea that no matter what this Lupus tries to do to my body and mind, I have faith that I’ll be okay.

Meals

Today my meals were:

• Breakfast: Paleo banana muffin, Gala apple
• Lunch: Leftover homemade turkey meatloaf, rice
• Dinner: Cornish hen, rice, broccoli
• Snacks: None

Thanks

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

• Hubby
• 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.)

The limitations forced upon you when you have Lupus require a special type of unwavering fortitude. Without it, living a life of constant planning while bracing for the unexpected can try even the most stoic of us…. **

Body

One word to describe my Lupus body today:  Limited

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

• Got a gentle massage
• Stayed hydrated
• Smiled and laughed
• Ate a clean diet

More details about my physical symptoms:
The day after Hubby’s birthday celebration overnight at a cozy cabin at Lake Tahoe. Because of Lupus, I had to plan every detail so that I could make his birthday enjoyable while making sure I protected myself from trigger foods, the sun, fatigue, etc. Even with all the planning, I wound up exhausted and in pain. So, here I am once again recovering physically from a happy occasion. Is the glass half empty or half full?

Mind

One word to describe my Lupus mind today: Insecure

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

• Managed expectations
• Protected alone time
• Managed stress response

More details and thoughts about how I’m feeling emotionally today:
I’m really fighting the feeling of not being enough for my husband. I know he was happy with the birthday getaway I planned, but I wish I didn’t have to restrict our activities so much. We just be couldn’t be spontaneous, and that upsets me. So, I’m working hard to manage my expectations of myself. I spent most of the day alone to get my head together and manage the stress of it all.

Spirit

One word to describe my spirit today: Empty

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

• Enjoyed sacred space
• Meditated, prayed, and visualized

Thoughts about my spiritual connection and spiritual lessons learned today:
Spiritual emptiness today. Sometimes my prayers have no words. Just quiet listening for wisdom and insight to pour down and fill me from above. I’m appreciative for the ability to pray in my sacred room.

Meals

Today my meals were:

• Breakfast: Paleo pumpkin muffin, Gala apple
• Lunch: Homemade chicken salad lettuce wrap
• Dinner: Leftover turkey meatloaf, mashed sweet potato, green beans
• Snacks: Almond butter on gluten-free toast with applesauce

Thanks

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

• Hubby
• Seeing the glass half full

**(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.)

When you have Lupus, are you ever really able to enjoy a vacation without suffering enormous consequences upon returning home? I did my best to plan our trip to the California coast, taking into consideration all my needs for food, rest, medications, and maintaining my habits and rituals for living with Lupus. Unfortunately, it seems that no matter how well I plan, the Lupus can take me off course. Like it did with trip…. **

Body

One word to describe my Lupus body today:  Exhausted

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

• Slept well
• Ate a Clean Diet
• Breathed Fresh Air
• Stayed Hydrated

More details about my physical symptoms:
We returned last night from our trip to the California coast for Hubby’s high school reunion, and the stop at Lake Tahoe on the way home. This trip has taken a great toll on me physically. What started out as a relaxing beach vacation, quickly turned into an exhausting, symptom-generating voyage. The symptoms—more hives, nerve pain in my back and legs, headaches, anxiety, loopiness, and total exhaustion.

Mind

One word to describe my Lupus mind today: Restoration

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:
Now that we’re home from the trip, I’m looking forward to a few days of restoration. This trip, like many others recently, took me too far out of my routine, which is simply disruptive. Not just physically, but emotionally, too. Although he didn’t express any issues with me, I felt like I was letting my husband down by limiting our activities so much. The beach was too hot and bright on my skin; I was too tired to spend time with the friends he wanted to see; the restaurants we chose had to serve healthy foods. On and on…. Knowing I had no choice because of my health didn’t help my thought process much. All I felt was the anxiety and brain fog that quickly took over my mind. So, today, I asked my husband to help me plan our vacations better, and I’m working on putting these feelings away. I choose to focus on how beautiful the California coast is and how lucky I am to live within driving distance of it.

Spirit

One word to describe my spirit today: Weak

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

• Loved myself

Thoughts about my spiritual connection and spiritual lessons learned today:
Wow, it’s kind of strange for me to still feel so spiritually weak and depleted after returning from our trip. But I do. I can usually find one of my many ways to connect spiritually, even when I’m not at home. Not this trip. There was so much to do and so many people to deal with that I was just too tired to able to quiet myself long enough to make my spiritual connection. I came close while at the beach, where the sounds of the waves were soothing. But oh, the sun was so incredibly and intensely hot that I just couldn’t stay out there for long. So, today, I pampered myself with an extra long time in my sacred space. I love my room. It has an energy about it that comforts me.

Meals

Today my meals were:

• Breakfast: Scrambled eggs and fruit cup
• Lunch: Tuna salad lettuce wrap
• Dinner: Homemade chicken soup (Thawed and heated after returning home)
• Snacks: Apple

Thanks

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

• Thoughtful, understanding Hubby
• A quiet, comfortable 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.)

The excruciating body pain today along with the debilitating fear of the unknown could possibly have taken over me today. Despite it all, the strength of my spiritual connection fortified by time in my garden and a beautiful sunset enabled me to release from the effects of Lupus. I’m so grateful…. **

Body

One word to describe my Lupus body today:  Painful

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

• Ate a clean diet
• Breathed fresh air

More details about my physical symptoms:
Today, I had my weekly physical therapy appointment and just the slightest touch from her was excruciating. My pain ran the gamut today—tight muscle pain, sporadic nerve pain, and awful arthritic pain in my back, hips, legs. I still have a few itchy hives, but they are subsiding, thankfully. It seems that when I get rid of one issue, another one pops up. Before today, it was the hives, but today, the pain decided to remind me of how bad it can be, too.

Mind

One word to describe my Lupus mind today: Scared

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

• Focused on the Positive
• Protected Alone Time
• Connected with My Doctor

More details and thoughts about how I’m feeling emotionally today:
I had my first appointment with my new neurologist today. The one I met and established with in March of this year (see this post from March 24, 2015) suddenly left the practice. So, I had to find someone else to evaluate how the Lupus may be affecting my brain. My symptoms include lots of dizziness, strange, vice-like headaches, and fogginess. Anyway, he showed me the MRI of my brain that was taken back in April, and there are a few “white matter” areas, he said. They could be vascular changes, which he decided needed further evaluation—a cerebral vascular event test and more blood work. After leaving his office, when I got into my car. I cried. It’s a lot to bear sometimes.

Spirit

One word to describe my spirit today: Reflective

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:
I’m sitting out in my backyard among the colorful roses, Russian sage, salvia, and black pines, feeling the warm glow of the evening sun. It’s approaching the horizon line and just about to set. This is my favorite time of day during the summer. I like to sit here an reflect on my day and just be quiet. At today’s appointment with the new neurologist, I was discussing my case with him and going over all my records and test results over the past seven or eight years. And, I was struck by how much I’ve been through. When you look at the big picture of it, it’s definitely worthy of reflection. As I reflect, I try to keep my spirits of  by seeing–WOW–I’m still here and living life. He commented on my smile an said it was good to see a patient with such a positive attitude and warm spirit.

Meals

Today my meals were:

• Breakfast: Gluten free waffles
• Lunch: Sushi and miso soup
• Dinner: Sliced turkey and bacon sandwich on gluten-free bread
• Snacks: None

Thanks

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

• My Hubby
• A beautiful sunset

**(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.)

Dear Diary,

Today marks the seventh anniversary since I suffered a pulmonary embolism—which is defined as a condition where a blood clot blocks one or more arteries in the lungs. The blood clot usually travels from the leg or the pelvis, up through the heart, and settles into the lungs. If the clot is large or if it is not diagnosed in time, a pulmonary embolism can be fatal.

In my case, I was told that I had a “multiple, bilateral pulmonary embolism event,” meaning I had many small blood clots in both lungs. And, the doctors had no idea where they came from because my legs and pelvis showed no signs of clots.

Even after seven years, I can remember it like it was yesterday. The day unfolded very strangely. My son had a day off from school, and we hung out together, running errands. The most important of which was buying a new, stacked washing machine and dryer combination for our condo. We were replacing the one that caught fire the day before.

While we were out, I kept feeling this nagging pain that felt like it was in my back, under my left shoulder blade. Nothing I did would relieve the pain. I took Tums practically all day, thinking the pain was gas or indigestion.

By dinnertime, my heart was racing, and the pain moved more toward my chest. After a few bites of dinner, I decided to lie down and rest, but that was interrupted by shooting pains in and down my left arm and upward into the left side of my neck.

By this time, my son had concluded, from a quick web search of my symptoms, that I was having a heart attack.

From that moment, everything seemed to move in slow motion. We should have called the ambulance, looking back. Instead, I gave him directions as he drove me to the hospital emergency room. We made it there, and it wasn’t very long before I was in triage, where they clocked my pulse at 165 bpm and my blood pressure was very high. After that, the next thing I remember was being ushered to a bed and being hooked to oxygen and an IV. Then, the nurse told me she was giving me pain medicine and told me to “ride the high.”

I met the doctor who told me that she suspected a pulmonary embolism and was ordering a CT scan of my chest. It was then that they gave me my first shot of heparin, just in case the ER doctor’s assumption was correct. She said that time was of the essence, and that if she was wrong about the diagnosis, the shot would not cause any harm. But, it would save my life if she were right.

When the nurse gave me the results, her delivery was almost like a happy song. “So, your doctor was right. You do have a pulmonary embolism.” Maybe that’s how they’re trained to give bad news?

The peculiar thing is that I didn’t even know what pulmonary embolism meant. I knew it was serious, but I felt a disconnect with what was going on. Maybe it was the medication they gave me or maybe it was my coping mechanism. All I remember is that time kind of stood still in that moment. My son was staring at me, and by that time, my sister had arrived. I remember staring back at them, and by the looks on their faces, knowing we were all thinking the same thing—am I going to die tonight?

I’m not sure if it’s healthy to commemorate such an event. My son doesn’t think so. He doesn’t like to remember that night. I suppose it depends on how you’re seeing it. If you’re mourning it as a terrible event in your life, then I guess it’s not healthy after many years have passed.

But, for me, that night and the eight subsequent days that I spent in the hospital represents a victory. It’s a celebration of surviving a potentially catastrophic event and embracing the redirection it caused in my life. Sure, the pain was unbearable, worse than childbirth. No joke. The inability to take a deep breath without excruciating pain was beyond frightening. My irregular heartbeat and the constant buzzing and dinging of the “monitored” hospital bed in the intensive care unit were constant reminders of how sick I was.

Through it all, I remained feisty and determined not to die. God and I had some serious conversations while I lay in that hospital bed. Some were in my head, and some out loud that I’m sure the nurses heard. I asked God to keep me alive so that I could see my son, my only child, graduate from high school in six weeks. As it was, I was in the hospital and missed his senior choral recital and his senior prom. His prom pictures are of him and his date, not at home on the lawn, but in my hospital room. I wasn’t afraid of dying, but I was desperate to stay alive for my son. I worked so hard to raise him, and I wanted to see the fruits of my labor, darn it!

So, here I am seven years later, thankful several things: first, that I not only saw him graduate from high school, but I was also there for his college graduation, and I fully expect to be there when he gets his graduate degree and gets married and has children someday.

Second, that the illness led me to move to live with my mother in Las Vegas, where I met the man who would become my husband three years later.

Third, but not least, I’m also thankful to know now that the mysterious pulmonary embolism was related to Lupus, which at that time was not diagnosed. I began Coumadin therapy a few days after that fateful day, and I will continue taking it for the rest of my life so that I don’t experience another episode.

I won’t go as far as having a party to commemorate this day each year. But, I do have my special conversation with God, thanking him for every day and all the blessings that He has given me since April 30, 2008.

Love,

Olivia

P.S. — For more information about pulmonary embolism, please see The National Heart, Lung, and Blood Institute’s web page entitled, “What Is a Pulmonary Embolism?”

Dear Diary,

It’s time for a change in approach. I have been so patiently waiting for several weeks now to get two referrals from two of my doctors. One referral was the outcome of my appointment with my hematologist regarding the positive tests for Lyme disease and two related co-infections. I was there to find out what she thought about the long-term antibiotic treatment for the Lyme disease (that the California doctor was prescribing) and what impact it might have on my Coumadin therapy. She thought it would be best to seek out the opinion of an infectious disease doctor. She said she would have her staff process the referral to him right away. That was on March 24th.

The other referral was for a brain MRI, part of a workup by my new neurologist, who was looking into why I’m getting these awful headaches accompanied by what she thinks is an Essential Tremor. She wants to make sure the Lupus wasn’t affecting my brain in any way. That was on March 30th.

In the weeks since those two appointments, my neurologist’s medical assistant and I played telephone tag as she worked to process the referral to my requested hospital’s radiology department. I’m not sure why this was taking so long. But, I worked to have patience and not pester her too much. At least, she was being cooperative and trying to help—albeit a bit too slow.

My hematologist’s office staff, on the other hand, was not being cooperative. I’ve only received one return phone call about the referral, during which the assistant told me that the referral was faxed over to the infectious disease doctor. End of story as far as they’re concerned. But, when I called the infectious disease doctor’s office, they said they had no record of it, and in fact, the told me that a fax referral would not do. To get to see their doctor, the referral has to be a telephone referral from my doctor to theirs. Despite several messages left at my hematologist’s office to explain the requirement, I have not heard any response from them. Grrrr….

So, by yesterday, it had been more than three weeks of getting nowhere with the referral to the infectious disease doctor and four weeks of still not hearing from the MRI scheduler. By this time, I began to get angry. I mean, with every message left and no return phone call, I could just feel the adrenalin surging through me and giving me an even worse headache or stomach pain. It’s amazing how directly the body responds to negativity like this, especially when you have Lupus.

Realizing that my anger was not serving me at all and certainly not getting me the referrals I needed, I decided to take a step back. Just walk away (figuratively) and look at the big picture. There has to be a way around all this.

So, yesterday, I decided to call the receptionist, rather than the medical assistant, at my neurologist’s office. She put me on hold, checked my file, and discovered that my referral had been sent to the wrong hospital. So, after she asked where I’d prefer to have it sent, she faxed it over to the correct place. Within 10 minutes, the correct hospital called and scheduled me for my brain MRI. Why it couldn’t have been that easy in the first place is beyond me.

To address the problem with the referral to the infectious disease doctor, I decided to forego working with my hematologist’s office altogether. Instead, I contacted my internist, who I consider the hub of my wheel of treatment specialists. I told her receptionist what I needed late yesterday afternoon. By this afternoon, within 24 hours, I received an e-mail from my internist directly, promising to take care of it for me. I fully expect to have an appointment scheduled with an infectious disease doctor within the week.

Exhale.

Stepping back and looking at how I handled this trying situation, I think I did pretty well. I was patient, giving time to the probably overworked staffs of these doctors offices. Although I didn’t enjoy getting angry, I decided to channel that anger to find a work-around solution. A change in approach after three weeks netted good results in 24 hours.

Just another day in the life….

Love,

Olivia

Dear Diary,

All day today, I’ve been riding a roller coaster of fear with my thoughts ranging from having courage and strength enough to take me to the heights of bravery in the fight against Lupus and Lyme-related infections; but, then out of nowhere, my thoughts drop what feels like 100 feet down to the depths of giving up and just allowing myself to simply die.

What good will these drugs do? What they give me for Lyme disease could worsen the Lupus; and what they give me for Lupus could worsen the Lyme disease. These drugs may even make me sicker with that Herxheimer reaction, also known as “Herxing”—the “get worse before you get better” routine. It’s caused by the reactions of the bacteria and parasites in response to the drugs that are trying to kill it. I never liked that idea of getting worse to get better. I’m not sure it even works, even though they say it ultimately turns out to be a good thing. All I see are people, like myself, who are hopelessly riding a roller coaster of fear, unable to get off to get better.

Why does it work that way anyway? Why can’t they just drop a nuclear bomb on the disease and call it a day.

Maybe somebody’s working on that right now. I can only hope.

Love,

Olivia