Browsing Category

Family & Relationships

Family & Relationships

Making a Commitment While Living with Lupus

The reminders of just how limiting life with Lupus can be are all around. How can you forget when what others consider simple, everyday tasks become too painful or exhausting for you to do? You do get used to it, for the most part. Unfortunately, I have yet to get used to how it affects my ability to make a commitment to something I want to do. Be it committing to drink more water or deciding whether or not to commit to becoming part of an organization, I have to decide if it’s worth the effect it will have on my Lupus body, mind, and spirit….  **



One word to describe my Lupus body today:  Tired

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

  • Breathed fresh air
  • Stayed hydrated
  • Protected delicate skin
  • Smiled and laughed

More details about my physical symptoms:
Recently, I discovered a theory that autoimmune illnesses are possibly worsened by chronic dehydration. It’s found in the book entitled “Your Body’s Many Cries for Water” by F. Batmanghelidj, M.D. The book has been around for a while, and the advice about drinking water is certainly not new. But what got my attention were his ideas about how dehydration affects us on a cellular level and what the body does to conserve water, reactions that lead to chronic illness if not taken care of. So, on October 4th, I made the commitment to myself to start drinking 64 ounces of water, faithfully everyday. It wasn’t easy in the beginning, but I’ve been successful, thanks in part to my Waterlogged app for iPhone. So cool with its reminders that sound like water. (When Hubby hears it, he says, “Your phone is flushing!”) After just about one and a half months, I’ve begun noticing that my eyes aren’t so dry, and my skin looks better. Even some of my cysts are shrinking. Maybe it’s a coincidence, I don’t know. But, I’m hoping that it affects my muscles and joints in a positive way.  That’s the good news. The problem with drinking so much water, especially if I don’t start early in the day, is that I wake up multiple times throughout the night to empty my bladder. It’s like being pregnant again. It’s hard enough to get to sleep with all this pain, but then to have to get up, painfully walk to the bathroom, then try to get back to sleep. I’m tired enough already because of Lupus without adding another reason. I’m just going to have to adjust when I drink the water, and hope my body gets used to it.



One word to describe my Lupus mind today: Conundrum

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

  • Managed stress response
  • Managed expectations
  • Asked for and accepted help

More details and thoughts about how I’m feeling emotionally today:
On my mind tonight is how to respond to an invitation I received last week. I attended my first rotary (community volunteer organization) meeting last month, and I was so excited to be out and about again among professional people around my age. The meeting went great, and I guess I impressed them too because they actually invited me to join the club. As usual, though, I have to consider how I felt after the first meeting. And, it wasn’t good. I was exhausted physically from the simple task of walking to the banquet hall and back from my car; and I was exhausted emotionally by all the excitement of meeting new people and having to be so alert. (These meds I take are pretty strong, and people don’t realize how they affect your ability to interact.) So, I have no option but to be very careful about what I commit to. I feel like if I make the commitment to join, I’ll let them down when (not if) Lupus decides to prevent me from doing much; or if I decline, I’m not sure if I’ll ever have the chance to spend time among my peers again. It’s a conundrum for sure. Thanks, Lupus.



One word to describe my spirit today: Waiting

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

  • Meditated, prayed, visualized
  • Cultivated creativity
  • Enjoyed sacred space

Thoughts about my spiritual connection and spiritual lessons learned today:
When I’m not sure of the next correct or best course of action regarding an important decision, I turn up the volume on my meditation to try to “hear” the answers. The conundrum about my desire to step outside of my limited routine to commit to the rotary club versus the reality of my inability to keep up has got me waiting for answers. I guess I have to be patient, as usual. So, I wrote a bit today, tweaked my website, and painted a little to just be with me. That’s one commitment I can handle.



Today my meals were:

  • Breakfast: Chicken apple sausage, scrambled eggs (both organic)
  • Lunch: Homemade chicken broth, sliced turkey sandwich on gluten-free bread
  • Dinner: Fresh oven-baked salmon, dill and lemon rice, steamed broccoli
  • Snacks: Gala apple
  • Water: 68 ounces



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

  • A refrigerator full of wholesome food 🙂
  • Patience

**(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.)

Family & Relationships

It’s World Lupus Day and Mother’s Day 2015

Dear Diary,

Today is Mother’s Day and World Lupus Day! I’ve celebrated Mother’s Day for 24 years now, but this is only my third Mother’s Day since learning that I have Lupus. The fact that Mother’s Day and World Lupus Day fall on the same day this year gives me pause to consider being a mother and having Lupus.

On Mother’s Day, my son and I celebrate “mommyhood,” my role in guiding, nurturing, and helping him navigate life in preparation for adulthood. On this day each year when he tells me “Happy Mother’s Day, Mama,” I take the time to remind him that he’s the greatest gift in my life. His father and I divorced when he was only three years old, so I raised him pretty much on my own—a fact that’s not lost on him, thankfully. He was by my side, a little trooper, as I worked full time, as I pursued various part-time businesses to help pay bills, as I studied all hours on the weekends to obtain a master’s degree, and most importantly, as I endured the many bouts of serious illness that we now know were related to the then-undiagnosed Lupus.

My son was by my side through it all, so it’s easy each year to embrace Mother’s Day, even if it is just a commercial holiday.

World Lupus Day, on the other hand is very new to me. Learning of my Lupus diagnosis only three years ago, I’m still sorting through what it all means for me. So far, I’ve learned just how differently Lupus affects each person, and my case certainly wasn’t an easy one to figure out. As an African American woman, I’m in the group of people who are more likely to be stricken with the disease. I’ve learned that I will be on medications to manage my illness episodes, called Lupus flares, for the rest of my life. I also know that these medicines give me the best chance at living as normal a life as possible.

My Lupus diagnosis has also given me a label to explain why I’ve been so sick most of my adult life. The explanation though, doesn’t carry much weight, I’m discovering, when I share it with others who are curious about why I walk with a cane or why I decline invitations or miss church. When I tell them I have Lupus, many people just simply have never heard of it. If I said I had cancer, diabetes, or even just high cholesterol, people would get it. Not so much with Lupus, unfortunately.

The fact that we have to have World Lupus Day just to increase awareness, as they say, is a shame, considering the sheer number of people suffering from the disease. According to the Lupus Foundation of America, about 1.5 million people in the United States have some form of Lupus. And, despite all the medical knowledge and advances, there remains no cure.

So, this year, World Lupus Day and Mother’s Day are both reminders to me of how blessed I am to be a Mom who’s raised an amazing son and a woman who’s thriving in spite of living with Lupus. I hope and pray World Lupus Day becomes a wake up call to the rest of the world who’ve never even heard of it.

I’ll do my part with this blog, my upcoming book, and my donations.





Family & Relationships

Should I Stay or Should I Go?

Dear Diary,

The question of the day is, “Should I stay or should I go?” The stress is building because I can’t decide whether I should try to make this trip to visit Hubby’s parents this weekend. His Mom and Dad will be hosting other family in California. It’s about a six-hour drive from our home. Just the thought of the trip exhausts me—from the pain of sitting in the car to the sleeping in an unfamiliar bed to the inflammation caused by eating “convenience” foods. I always suffer the full spectrum of consequences when I try to meet this particular “wife responsibility.”

The more I think about going, the more I feel the panic. How can I let my husband down when he’s so willing to support me and suffer the consequences of this illness on our marriage? But, how can I go, when I know how much it will cost my body in the currency of pain and extreme fatigue?

The stay-at-home option appeals to my fears, but the solitude and isolation knowing my husband is without me will just remind me of how sick I am. It’s just one more way that my world continues to get smaller and smaller.

Either way, I’ll be in pain. At least if I go, I won’t miss out on being with family.

So, the answer to the “Should I stay or should I go?” question is “Go!”

Okay, let’s get this show on the road….

Well, we arrived late tonight. I tried to ease the burden of the car trip by lying down in the back seat. Not easy when you’re wearing a seatbelt. With cervical pillow, neck bone pillow, and twin-sized blanket, I tried to relax and possibly sleep. Thankfully, I did have moments of rest, but a seatbelt buckle digging into my rib didn’t help. I found it easier on me than sitting up front, though.

Once we arrived, the hotel was a welcome sight.



Family & Relationships

We’re Home!

Dear Diary,

We’re home! What a whirlwind trip. I’m happy I did it, but I’m in so much pain. It was worth it to see family. I made a very conscious effort to take it easy, but the simple act of interacting and socializing put a huge strain on me. Not to mention our day trip to Sequoia National Park.

SequoiaNationalParkWhy we didn’t bring my wheelchair was beyond me. I slowed everyone down. Even with the cane, I could not take a step without horrible pain in my hips, legs, and back. The world was moving in fast motion all around me, while my pace was that of a snail. I think the snails probably had a chance to win a race against me. Ha!

It took every ounce of me to shift my focus from the pain to the beautiful big trees, the crisp mountain air filled with the scent of pine, and the bright rays of the sun beaming through the tall tree tops. It was much easier to experience this beauty once I found a bench to sit on while everyone else explored the forest’s pathways. Just for a moment. Quiet nature and me. Oh how I miss being outdoors.

My love for the outdoors is could be the reason I’m in this predicament if the Lyme disease tests are accurate. All those solitary hikes in the woods, or book reading by the rivers, lakes, and creeks in Maryland way back when, surely gave those little ticks plenty of opportunity to bite me. Even still, I wouldn’t trade those beautiful summer and crisp fall days for anything. Thank you, God.



Family & Relationships

Happy Birthday, Mom!

Dear Diary,

Happy birthday, Mom! She’s 73 years old today, and thank God, she’s never been really sick. The only time she’s been in the hospital (besides visiting me or my sister when we were patients for one reason or another) was when she delivered me and my brother and sister. I’m so glad she has no idea of what it means to have to spend lonely nights in the hospital. I’m so grateful that she doesn’t know the experience of chronic pain. The type of pain that I have all day, every day. And today, I’m lying here reminded of how bad it can get.

Today was a big day as far activities go. It was one of my bi-weekly grocery shopping trips. Grocery shopping is one of the most difficult activities for me. Lots of walking, bending, lifting, and thinking. And, when there are lots of people in the store, it can quickly become a scary and frustrating experience. People become impatient with my slow movements. To avoid all that, I grocery shop at 7:00 am or when the store first opens. It’s so much more bearable this way.

Today’s trip, while successful in avoiding crazy people, still was problematic, though. The reason is the amount of pain it caused. I could barely move from the joint and nerve pain in my hips, groin, back, legs, and feet. This isn’t the first time it’s happened for sure. But with each episode like this, I’m shocked because my activities are already so limited.

I manage each trip to the doctor, acupuncturist, physical therapist with minimal movement planned. I also limit the frequency of having to go to these appointments. No matter how much I limit myself, though, I find myself feeling the way I do today—with excruciating pain.

Oh well, I have no choice but to ride this latest wave of pain. Surf’s up…..



Family & Relationships

Note to My Sister

Dear Diary,

Today I sent my sister a note after she had surgery to remove the cancerous tumor from her breast as well as the lymph nodes where the cancer had spread. The surgery went well, and they also put in a port in her opposite shoulder where she’ll receive the chemotherapy injections. She also had additional tests to find out if the cancer had spread to other parts of her body, and those tests came back negative. So, THANK GOD, it was only in her breast and lymph nodes, which have now been removed.

We’ve all been so upset by this whole thing, and we still have a ways to go with the chemo and radiation still to come over the next several months. On Saturday, Mom flew to Maryland to be with her. I wish I could have gone, too, but it’s just too much for me to travel under such duress. I’d only add the burden of my ill health to the situation. So, I’m there in spirit and in constant contact.

Here’s my note to my sister to her to let her know that I understand what she’s going through:

Hey Sis,

I know I don’t have to say this, but I hope you know that you can call on me at any hour of the day or night if you need to talk, cry, scream, or just complain. You have every right to let out the emotions of all this.

I’ve been trying to figure out how best to be there for you. I want to keep you upbeat, but then I don’t want you to think I’m glossing over the seriousness of all this. I know you’re scared, especially since Mom has returned home, and you’ll be at home alone when everybody’s at school or at work. But, please remember that I’m at home alone, too. It’s not easy being alone with your thoughts and fears about what’s going on in your body. Keeping busy is a way of coping; but what happens when you can’t use “busy-ness” to occupy your mind because you’re just too tired or too sick?

Before all this happened to you, I really looked forward to your calls during the afternoon here, while you were driving home from work. Having you to connect with means everything to me. It helps me get out of my head, and you don’t get sick of my complaining–hahaha! 

I hope I can return the favor now that this downtime has been forced upon you. So, please call even if you don’t know what you want to say….

Dar, you will get through this, and God’s going to lead you to the answers about the other symptoms that you’re having. You just have to let go and let God handle it. Believe me, it’s not easy, but all you have to do is remember how He revealed the breast cancer to you. I mean, it was amazing how that woman just came out and told you to have your mammogram done. God’s got this, so don’t carry any burdens that you don’t have to.

I love you.


Family & Relationships

Could My Sister Also Have Lupus?

Dear Diary,

Knowing that my younger sister would probably get tired of my asking her to get checked for Lupus, I did it anyway. For years, she’s been having some of the same symptoms I’ve had and a few strange symptoms that are a bit different. For example, she’s had hives and chest pains for years; but, she’s also had a benign tumor on her pituitary gland in her brain. That’s a condition known as prolactinoma, where the pituitary gland overproduces the hormone prolactin. It causes you to stop having periods, have vision problems, mood swings, and if the tumor grows too large, it can kill you.

To support my argument for her getting tested for Lupus, I wanted to find out if there was a known connection between Lupus and prolactinoma. I did a Google search, and I discovered that it’s not uncommon for patients to have both because the prolactin apparently modulates the disease activity of lupus….  So, her chest pain and fatigue could be related to how the prolactinoma is affecting her autoimmune system. If it’s making your autoimmune system overactive, like with Lupus (if she has it), it could explain everything. Very interesting!

I really urged her to ask for two specific blood tests–“ANA Direct” and “Anti-DNA (DS).” The ANA Direct tests for general autoimmune disease, and the Anti-DNA (DS) tests specifically for Lupus. Both of my tests results were positive twice now, once in August and once in January (last week).

Anyway, here are a couple of links I gave her to explore:

I surely don’t want her to have Lupus, but I want her to have answers for all the crazy unanswered health issues she’s also had.

All this stuff runs in families, I’m told. Anyway, better to know than not, right?

Okay, I’m done. (For now….)