Living With Lupus... As A Mother

We may run, walk, stumble, drive, or fly, but let us never lose sight of the reason for the journey, or miss a chance to see a rainbow on the way. -- Gloria Gaither

Pregnancy and motherhood come with their own set of challenges. From impossible fatigue to seemingly endless aches and pains, new mothers experience a wide array of symptoms that can make the whole mom thing less than fun. However, when those common symptoms are exacerbated by the pain, inflammation, irritation, respiratory distress, and suceptible immunity of lupus, there are many other factors to consider, for mothers, her child, and her circle of support.

What Is Lupus? 

Lupus is a chronic autoimmune disorder, wherein damaged cells of the immune system attack healthy cells of multiple systems, leading to inflammation, joint pain, and skin rashes, in addition to kidney, heart, lung, nerve, and liver damage, in severe cases. Digestive issues and anemia are also areas of concern. All over, and usually, symmetrical joint pain is often the first sign. There may also be a common "butterfly" rash across the face, along with other skin irritations, sensitivities to the sun, and mouth ulcers. In fact, the entire integumentary system may be affected in the form of scaly skin, brittle nails, and patchy hair loss. Another symptom is unrelenting and debilitating fatigue, often with a low-grade fever. Lupus shares many symptoms with rheumatoid arthritis, fibromyalgia, Sjögren's syndrome, and other autoimmune conditions. A battery of lab tests and history help to diagnose lupus. Women are 10 times more likely to get lupus than men, and women who are African-American, between the ages of 20-40, and related to someone with lupus, are more more likely to get the he incurable condition, than other groups. The symptoms of lupus come and go, present themselves one at a time, altogether, or in any combination, and can be treated by addressing its multiple symptoms with corticosteroid pills or cremes, NSAIDs, and antimalarial medications. People living with lupus are at an increased risk of developing heart disease and having a stroke. 

Lupus- What Is It? 

Lupus and Fertility 

Lupus alone does not create issues with fertility. During the preconception period, a woman with lupus should meet with a rheumatologist, perinatologist, and a pediatric cardiologist, in order to discuss risks and options for both mother and child, including finding a hospital that specializes in specialized infant care. Hopeful mothers should adopt and maintain a healthy lifestyle in order to minimize lupus-related symptoms. Women who conceive while symptoms are in remission are less likely to have complications during pregnancy. While fewer than 50% of lupus pregnancies have complications, all pregnant women with lupus are considered high risk. Planning pregnancies while living with lupus is important.

Lupus and Self-Care 

Lupus and Pregnancy

The pregnancy complications associated with lupus include an increased risk of miscarriage, still birth, prematurity, preeclampsia, and HELLP syndrome.  In order to monitor and decrease these risks, more frequent doctors' visits are necessary and eventual bedrest is likely. All pregnancies are different. Some will require treatment early on to adjust medication levels, while others require frequent monitoring after the first trimester, in order to check for blood clots, blood pressure, fetal growth, and offer reassurance, often via ultrasound. The physiological demands of pregnancy can often place extra stress on the mother's heart, liver, and kidneys. Expectant mothers and their partners should be extra vigilant about lupus flares. Although they are rare during pregnancy, they often appear as exaggerated signs of pregnancy, including fatigue, joint swelling, fluid accumulation, skin changes, and hair changes. Just as in a normal pregnancy, nutrition, weight management, and rest are essential for an optimal birth outcome.

Neonatal Lupus

Most babies born to women with lupus are born healthy, when full-term. Those that are born prematurely, are at risk for the same heart, lung, digestion, and growth complications as other preemies. In very rare cases, the newborn can have neonatal lupus, which may mimic mom's symptoms of skin rashes, anemia, or liver problems. These symptoms usually go away after a few months and do not cause permanent damage. If a newborn presents with a heart condition related to neonatal lupus, the prognosis is more concerning. 

Autoimmune Disorders and Breastfeeding 

Breastfeeding and Postpartum 

Lupus itself does not prevent breastfeeding and since lupus is not contagious, it cannot be passed to the baby through breast milk. However, new mothers may still experience breastfeeding challenges. For example, if the mother was very sick or medicated at the end of her pregnancy, she may have difficulty producing milk right away, especially if the birth was premature, as nearly 50% of lupus-pregnancies are. In this case, be patient, seek assistance from a lactation professional (early and often), continue to express milk, be available for kangaroo care, and ask for donor milk. A pre-term infant may have developmental challenges that make breastfeeding complex, but also very important. Along with the numerous well-known benefits of breastmilk, the milk of a mother with lupus, has properties that may help decrease the risk of the infant developing lupus later in life. In addition to utilizing the services of a lactation consultant, a new mother with lupus may 
consider hiring a postpartum doula to help manage physical recovery, baby care, and home care. As mentioned earlier, symptoms may be surpressed during the pregnancy, but the stress of motherhood could contribute to a flare up after the birth, especially if the child is fragile, or when the mother returns to work. 

15 Reasons To Call A Lactation Consultant 

Nutrition 

Nutritional choices neither cause, nor cure lupus, however, healthy food choices are an integral part of the overall treatment plan, especially during pregnancy. As a general rule, the diet should be well-balanced, anti-inflammatory  consisting of vegetables, fruits, oily fish, and limited amounts of whole grains, lean poultry, and beef. Avoiding the major inflammation causing foods, is as equally important. The goal of nutrition is to reduce inflammation and other symptoms, maintain strong joints and muscles, minimize side effects of medications, maintain a healthy weight, and reduce the risk of heart disease. 

Foods That CAUSE Inflammation 

Mental Health and Self-Care

Like many chronic illnesses, depression and anxiety are a risk for those living with lupus. The unpredictable pain, in combination with the emotional stress of coping with daily obligations, can often be too much to bear without intervention or support. It is vital that a self-care plan includes stress & pain management, regular exercise, a balanced diet, social support, rest, and regular mental health assessments. 

If you know a mother who is living with lupus, reach out to her and offer a bit more support than you have been, regardless of the age of her children. She's probably more tired than the average mother. If you know a woman with lupus who is trying to conceive, check in with her to make sure that she's making healthy choices the majority of the time. If you are a mother living with lupus, know that we think the world of you, we are cheering for you, and we support you and your amazing self. Take care. 

The Conception and Birth of Maternal Wellness

"Connecting with those you know love, like, and appreciate you, restores the spirit and gives you energy to keep moving forward in this life." ~Deborah Day

According to the Facebook Memories feature and my beloved TimeHop app, I posted the following exactly one year ago today, as a preface to the article below. It seems that this is when and where the seeds of Blossom Health and Maternal Wellness were planted: 

10/28/14

I can't say enough about this topic. As a prenatal massage therapist, I thought that I offered a nice service. As an occupational therapist treating countless repetitive use injuries- but never any related to pregnancy, childbirth, nursing, or motherhood- I overlooked a great many potential patients.  As a yogi & runner, I cheered on new mommies to just bounce back quickly, but there is SO much more to consider besides dropping 30+ pounds. Specialized intervention is sometimes necessary, as is self-care. There is a market for this kind of treatment, if docs, moms, and dads buy into it.

My Child Is Here, But My Body Is Not My Own

10/28/15

I don't think that even I imagined that less than 6 months later, these ideas, experiences, opportunities, and skills would align themselves to birth Blossom Health and Maternal Wellness, which offers perinatal fitness, massage, nutrition, education, breastfeeding support, and rehabilitation all in one place. 

Now for the buy in: moms, there are ways to help usher in normalcy, even if it is a slightly new normal. There are mechanisms and modalities to help alleviate pain, strengthen weakened areas, regain confidence. Your body will be different, your sleep habits will be different, your priorities will be different, and your emotional state will be different, but you should not be unrecognizable. You do not have to succumb to the abyss of post-baby everything. You are not weak for asking for help. Typically, when we think about postpartum ailments, we're only thinking about depression, which is good. Postpartum depression is real, affects many, and needs to be better understood and treated. However, there are also physical and physiological remnants of childbearing that do not have to remain indefinitely.

Daddies, despite what you may see on television, there is no metaphor, similie, mental image, or weighted vest that can adequately convey all that a woman's body and mind go through during and after the 40 weeks of pregnancy. Trust, anticipate, and listen. Your partner is amazing! She is a warrior! She has gone through battle and has birthed a miracle. She needs a massage. She needs an opportunity to exercise. She may even need therapy or chiropractic care. She is not a wimp. She is not looking for attention. She needs for you to understand and advocate for her. The easier and more complete her recovery, the better she will be able to take care of your family... and the less resentful she will be toward you, for the rest of her life. There's nothing worse than grandma oversharing at Thanksgiving about how her body was completely destroyed 55 years earlier by childbirth and how it is all grandpa's fault. Women remember those BC (before children) bodies and capabilities like they do the days of the week. Find ways to help her get back to that.

Physicians can help too. By listening to new moms, asking thoughtful questions, re-sensitizing themselves to the wonder of each and every birth experience, and being aware of pregnancy and postpartum community resources, they can assist moms in adjusting to life on the other side, with minimal pain and without involuntary peeing. 

We often hear about how the care for postpartum mothers in this country is amongst the least desirable and least helpful in all of the world. Our bodies were not meant to create a life, birth it forth, stick an artificial nipple in its mouth and return to data entry 6 weeks later (or whatever amazing career we have). We simply were not designed that way.

We were designed to be nurtured by our tribe and to be nurturing to our children. After giving birth, we need rest and restoration. Facilitating this recovery is the reason that Blossom Health and Maternal Wellness is here today. 

When Breastfeeding Moms Receive Unexpected Support

My individual circle of breastfeeding support included my mother, two cousins, and a few friends who were advocates, but none of them lived near me. Early in my journey, I knew that I would have to reach out to breastfeeding moms in my local community. I joined our local La Leche League, as well as the Facebook group for breastfeeding moms in our area. These two groups, and several others along the way, have provided tremendous support for me, as well as, countless other moms throughout the world. 

Mother's rely on these (mostly private) breastfeeding groups for help with getting prepared, getting started, increasing milk supply, and alleviating nipple soreness. We vent about crazy in-laws, narrow-minded friends, and husbands who are anxious about putting the "fun bags" back to their proper use. We share success stories of husbands who finally get it, BOGO nursing bras, and employers who understand what it takes for a nursing mom to return to work. We intentionally go to these pages for support. We know that's it's available any time of the day or night... seriously, we NEVER sleep. It's so comforting and empowering to know that we can go to these virtual spaces to receive breastfeeding support. It's extra special when support comes from unexpected people, at unexpected times, and in unexpected ways. Last night, after putting my nursing tot back to sleep, I was making my nightly support group rounds to see who I could encourage, celebrate, or console, when I encountered a post that warmed my heart.

Not even 20 minutes later, I saw this one!

Two breastfeeding moms, in the same online support group, in the same town, whose paths may have crossed in posts before... or may not have. Either way, they are sure never to forget one another after this meeting. Without making even one verbal exchange about breastfeeding, without either one being topless, and without any big fuss about when or where to feed the baby, these two star-crossed nursing mamas supported each other with their generosity of word and deed. This is how we normalize breastfeeding. I hope that they become total BFFs now! Breastfeeding Friends Forever! 

In what unexpected ways have you been supported along your breastfeeding or parenting journey?

Blossom Mom

Blossom Health and Maternal Wellness