It’s especially important to take precautions when you live with an autoimmune disease and must seek constant medical advice from providers and professionals.
1. Know the hospital you will go to for emergencies.
Are they familiar with your autoimmune disease? Do they know your rheumatologist and other specialists you see? Do they have all your medical records on file? Make sure the hospital has this information or at least access to it. Know where you’re going in the event of an emergency before it happens. Have the easiest, shortest traffic route memorized. Know how long it will take you at any time of day to get there, regardless if it’s lunchtime or rush hour.
2. Speak up and ask lots of questions.
If any procedure makes you uncomfortable at any time, whether that’s getting a catheter or a medication you’re not familiar with, tell the medical provider. If they insist on treating you with said procedure, at the very least they owe you an explanation of the pros and cons of what you’re getting.
3. Pay attention to symptoms and keep a journal.
It’s helpful to note anything that feels abnormal to you. If you’ve noticed pain, experienced more flare ups, or find yourself reacting poorly to certain foods, write it down. It’s helpful to have the data readily available when you meet with your providers so you can help them find the root cause.
4. Get the test results before you start any new medications or prescriptions.
Know what you’re dealing with before you accept treatment. Is there a culture present in your urine sample? Do you know for sure that you have a bacterial infection? Follow up and ask for a copy of the lab report.
5. Seek out a second (or third) opinion.
Not sure about someone’s first evaluation of your problem? If it’s not an emergency, find and consult with a new specialist. Consider a second or third opinion. Have a team in place for care that YOU TRUST. I once asked for a second opinion because the advice offered directly conflicted with my rheumatologist’s recommendations for treatment.
6. Research and know the ins and outs of your insurance plan.
This one can probably go without saying, but it is very important. Research what your plan covers before accepting any new procedures, appointments, or treatments. Likewise, you may be surprised to discover you can receive a prescription for massages simply for having musculoskeletal issues.
DISCLAIMER: I am not being endorsed to write about any of these products. Thoughts and opinions expressed are my own.
As my son turned 1, I couldn’t help but reflect on the past year. I understand why they say days are long, but years are short. In the moment, many days feel like they’ll never end. I remember endless cuddles and feedings and such tiny feet curled up on my chest. I now look at my son who can no longer fit in my arms. He has transformed into a busy toddler, climbing the furniture, standing up to grab his Munchkin cup off the kitchen table, and already stashing Cheerios in his pants’ pockets.
Traveling has gotten much easier with him. We’ve made trips both locally and across the country, in the first year. Each time and, at every stage of development, we learn something new to improve the journey. We’ve learned to pack a silicone mat for eating at restaurants and that if the hotel doesn’t have a fridge in the room, you can fill the ice bucket to keep the milk chilled. If you can, take the bus. It will save you money and you don’t have to bring the dreadfully heavy car seat.
As I’ve mentioned before, I’m not being paid to share products with you on my blog. I have found that some baby gear enables my husband and me to save time and enjoy our lives more. I can’t help but share my knowledge. Because, frankly, it doesn’t have to feel like survival mode every day in the first year.
Our favorite baby products at home and on the go
- Fridababy Windi: My husband lovingly refers to this product as the “butt straw.” Our son struggled with gas in the early months. It would disrupt his sleep every night until we found the Windi, which was a total gamechanger for him. On particularly challenging nights, we’d use the Windi. It helped him pass the gas more quickly so we could all get back to sleeping.
- Fridababy SnotSucker: Another gamechanger and amazing product from Fridababy, the SnotSucker does exactly what it says. It pulls all the congestion out of your baby’s nose so he or she can rest and recover from a cold more quickly. Apply after you’ve misted baby’s nose with a little saline spray and you’ll be amazed at just how much snot you can suck.
- SnoofyBee: Words cannot express how much I genuinely love the SnoofyBee. I buy it for every new mom and dad when they have their baby shower. It’s one of those products parents don’t even realize they need until they’re out and about somewhere. It makes diaper changes on the go so much easier! Bonus: you can stop your baby from putting their hands in the poo by distracting them with toys.
- MAM bottles: I first found out about MAM pacifiers because stores like Destination Maternity and Motherhood will stock you up when you’re shopping for maternity clothes. And we loved these pacifiers so much we decided to try the MAM bottles. Believe me when I say these are the best! We’d tried Medela, Dr. Brown’s, Phillips, and the Infant Comotomo bottles. These are my absolute favorite because they’re anti-colic AND you can microwave them to sterilize them. It makes the cleaning process so much easier. You don’t have to worry about forgetting about a boiling pot of water on the stove. Let’s be real: no sleep deprived parent has time or energy for boiling and sterilizing baby bottle parts.
- Baby Bjorn bibs: Who uses cloth bibs when you can have BPA-free plastic ones that are easy to clean? We got these bibs as a hand-me-down and I am grateful for them every day. When our son started feeding himself at the table, these would catch quite a few pieces of avocado, salmon, and Cheerios. While they didn’t prevent me from sweeping the floor, they made clean up a lot easier for both of us. He didn’t have to change clothes and I could simply wash off the bib in the sink and hang it up to dry.
- MiniMEis: For the first 6 months, my husband and I used the Lumiere Baby 360 Ergonomic carrier to run errands, walk the dog, or cook and clean at home. At 6 months, our son weighed 18 lbs and it became no longer feasible for me to do kangaroo care around the clock. My husband found the MiniMEis, a carrier designed with dads in mind. We’ve used it in place of the ergonomic carrier as he has continued to grow. It is honestly one of the best purchases we’ve ever made. New parents constantly stop us on the street and ask where we found it. I can’t recommend it enough if you’re traveling anywhere with your baby. Bonus: give baby the best view while giving mom’s body a break!
- Summer Infant portable high chair: We have the Summer Infant 3Dlite Convenience Stroller (an umbrella stroller that easily folds up and is super lightweight). It’s the only stroller we’ve ever used and we love it so much that we decided to look into other Summer Infant products. Their portable high chair folds and packs up so easily for weekend getaways and flights away from home. If you don’t want to use high chairs at restaurants, it also comes in handy.
- Graco Pack ‘n Play: With how often we brew beer and like to travel, we needed a portable crib. To get the most use out of it, we used the Pack ‘n Play initially as a bassinet (it has the option) before our son transitioned to the crib in his own room. Around 4-6 months, I invested in a mattress for the Pack ‘n Play to make his naps more comfortable. It’s another (larger) item to load in the car on trips, but worth it when you want your baby to get some quality shuteye.
- Lovevery toys: I’ll be the first to admit that I’ve always found baby toys a little daunting. I don’t like clutter and the thought of piles of children’s toys thrown everywhere stresses me out. As you can imagine, I’m learning to live with the mess. Parenting will make you grow as a person if you’re open to changing. When we took our son to his first developmental assessment at 2 months, I realized we needed some amount of toys to help him grow. I did some research and found Lovevery. I don’t know what I’d do without our Lovevery subscription. These toys are truly made for helping babies as they go through leaps and developmental milestones throughout the first year. There’s even a guide book for parents to help them engage in enriching play and instructions on how/when to introduce each toy for new learning opportunities. I’m so happy that Lovevery recently created toddler kits for play from 13-24 months. Our son loves exploring and engaging with these toys so much that we’re going to purchase the toddler kits for him.
- Fridababy Windi: My husband lovingly refers to this product as the “butt straw.” Our son struggled with gas in the early months. It would disrupt his sleep every night until we found the Windi, which was a total gamechanger for him. On particularly challenging nights, we’d use the Windi. It helped him pass the gas more quickly so we could all get back to sleeping.
I don’t have a lot of time on my hands this week, so I’m sharing a recipe. When I’m sticking to my paleo diet, I like to make this side dish. It’s my favorite way to make cauliflower rice. I recommend trying it, if you’re not sick of cauliflower already.
I usually chop cauliflower in my Vitamix or food processor. For moms who don’t even have time for that, buy riced cauliflower. If you happen to live near a Trader Joe’s, I highly recommend their riced cauliflower options.
What you’ll need:
12 oz of riced cauliflower or 1 medium-ish sized head of cauliflower
1 tbsp coconut oil
Bunch of fresh cilantro
1 lime for freshly squeezed juice, halved
1/4 tsp salt
1/4 tsp cayenne (or black pepper or both)
Once you have the riced cauliflower, chop some cilantro. I prefer about 1/4 or 1/3 cup minced.
Heat 1 tablespoon of coconut oil in a skillet over medium heat. I use this brand of coconut oil for nearly everything: cooking, lotion, diaper cream, pink eye… just not from the same container, of course. 😂
Add the riced cauliflower to the skillet and work in batches, if needed. Sauté for 3-5 minutes, until the cauliflower is heated through completely. Add salt and pepper and the cilantro. Squeeze the lime halves directly over the skillet and mix.
Please keep in mind that sometimes I’m moving so fast I never measure anything (outside of my salt intake, because Sjogren’s). You may need to adjust the amount of salt, cayenne, coconut oil, and lime juice to your liking. Experiment until you get the flavor profile you want. I prefer mine with cayenne, but I have also prepared it with black pepper.
Being a parent is hard work. Being a parent with an autoimmune disease can feel like tackling an impossible job. So I’m going to be completely honest with you and share what it’s actually like sometimes.
Managing several viruses and infections in the first year of parenthood
They say you get sick a lot in the first two years of a child’s life. I’m not sure what will happen when our son joins a daycare program, but I do know it’s been a rough year for my health.
The first year postpartum has been SO hard on my body. I’ve had 3 UTIs, several kidney stones, a dislocated knee, and now I’ve been prescribed another round of antibiotics. This will be the third time since giving birth to my son that I have been on antibiotics, making it a total of 7 times in ONE year. I spent the past summer fighting off recurring cold viruses. Despite being regimented with my diet, it took me 3 months to fully recover.
With any of these illnesses, you obviously need sleep to recover. A baby that is in some stage of sleep regression doesn’t help. I’m not sure that I believe sleep regression is just once at 4 months, 8 months, and then 11 months. You never know what baby you’ll get. They’re all different. And sleep varies.
Cleaning is the last thing I prioritize these days. I work a full-time job with two days in the office and three days at home. Sometimes I’m better about cleaning, but mostly I just focus on what needs to be done: cooking, bathing, caring for the pets, or doing laundry. Some days I only accomplish two of those things in addition to my job. Some days that is all I can manage as a working mom with Sjögren’s.
Dealing with sleep regression and deprivation when you already have daily fatigue
Our son has never been a sleeper. And by ‘sleeper,’ I mean a baby who sleeps through the night every night. When he was 3 months old, we were able to get 5-6 hours of uninterrupted sleep at most. By 6 months, he weighed 18 lbs. We just couldn’t feed him enough because of how much he was growing. Night feedings were a regular occurrence for us.
At 8 months, he started crawling and had 6 teeth come in at once, both of which affected his sleep. Our pediatrician joked he’s a linebacker. I think he just doesn’t know how to slow down once he gets started.
My husband is the real MVP this first year because he has gotten up every night and fed our son. Sometimes the sleep deprivation makes him unapologetically an asshole, but he knows how much I need the rest and he stands by me as a partner ready to do the hard work.
After recovering sometime in the fourth trimester, I was able to help more with night and early morning feeds. The struggle with sleep deprivation is real, even if you don’t suffer from daily fatigue. I suspect my fatigue only makes me feel it more intensely. And so much that I accidentally scraped the side of our car trying to back up into our narrow garage space one morning.
I’d also be lying if I didn’t admit that I’d sleep during both of my son’s naps. If I found myself in dire need of a shower, I’d put him in the bouncer near me and play ‘peek a boo’ from behind the curtain while I hurried.
I’ve had mornings, too, where I’ve admittedly overslept because of my fatigue or an illness. My son either plays quietly in his crib or he falls back asleep until I am awake to get him. I sometimes feel guilty about not being able to keep his morning routine the same every day, but his naps are regular and he goes to bed at the same time every night.
Being ill when your child is also ill and co-sleeping
Our first flight with our son to Chicago resulted in one of the worst colds we’ve ever had and we shared it as a family. We co-slept with him during our last night in town — if we had co-slept before, I don’t remember it. He just couldn’t get comfortable in the Pack N’ Play. We tried alternating positions with him until he finally fell asleep on my husband’s chest. My poor husband sat up all night with him in our hotel bed, eventually falling asleep in that position.
Our flight back only made the congestion worse and it took us awhile to recover. Our son wasn’t eating or sleeping much, so I took him to see his pediatrician. She recommended this helpful tip: propping him up on his boppy in the crib with a towel rolled under his legs to help him sleep upright. It worked and he let us sleep through the night.
Being ill when your child is not ill (and moving up naptime)
This weekend I was writhing in pain trying to pee and my son knew something was up because he kept crawling after me to the bathroom and trying to stand beside me. As I write this, I’m amazed we even made it out the door to the hospital. I know we couldn’t have done it without my husband being there.
When I dislocated my knee, I was trying to get up from a chair so I could pick up my son from his high chair. I’m amazed I didn’t pass out. I did fall to the floor while my son watched. The knee stopped locking and eventually went back into position on its own. The swelling was awful. I had to sit on the couch with frozen vegetables on my knee and watch my son play on the floor while I waited for his dad to come home from golfing.
When I had my first migraine this year, it was debilitating. My son was sitting next to me on the bathroom floor watching me vomit into the toilet. I pulled the curtains to darken the living room and put a blanket and pillows on the floor so we could cuddle and play. He seemed to know something was off and willingly lied down next to me on the floor. It only entertained him for so long before I had to put him in his crib so I could rest. He knew it wasn’t quite yet naptime, but he adjusted.
My best advice for autoimmune moms: Adjust and adapt as needed.
We did not get a sleeper, but we have a very adaptable and easygoing child. Perhaps he is the baby I needed as a parent. He seems to handle my chronic illness with grace… or at least some sense of patience I didn’t know an infant could possess. I learn so much by caring for my son.
I know I wouldn’t have survived the first year as a single parent. Together, we are stronger. We have learned how to adapt and meet our son’s needs while doing our best to not forget about our own. Parenthood is hard work, but we also love it.
And let’s be real: I’m so grateful to have a partner I can depend on for some sleep.
Warning: this post is devoted entirely to baby poop.
They say nothing can prepare you for that first poopy diaper which is filled with meconium. (If you lost your lunch Googling that, I’m sorry and you’re welcome.)
Frankly, I don’t think anything can prepare a new mom for the sheer amount of poop, let alone where it ends up… the tub, your hair, the back of your arm, the stuffed animals, that $200 rug from Costco. My husband is great at taking care of our son, too, but he hasn’t seen or felt nearly as much poop as I have.
Then there’s the actual state of the poop. As a new mom, you get really good at identifying problematic poops. I’ve kept a log of metaphors for nearly every type of poop my son has had this year. And here it is, for all the world to see. Perhaps, somewhere, some new mom’s sense of humor is just as infantile as mine so she’ll appreciate this post.
The poop that never ends (Yes, it goes on and on, my friends)
I’ll always remember this poop. My husband and I signed up to take the Gottman Institute’s Bringing Baby Home Workshop, which consists of two days of classes over a weekend. We were supposed to complete the workshop in November, but our son decided he needed to make an appearance instead. So by the time we took the class, our son was 2 and a half months old. We were one of the few non-pregnant couples with a young infant.
Naturally, when we went to change his diaper mid-class in the back of the room, our son wouldn’t stop pooping. Poop just kept coming out onto the table. Like lava gushing from a volcano. At least two or three diapers were used in an effort to contain the poop that wouldn’t stop emerging. We eventually ran out of wipes. And all my husband and I could do is start singing “This is the poop that never ends, yes it goes on and on my friends” much to everyone’s chagrin.
Thankfully, the store next to us had a travel size pack of 8 wipes so we could buy a few to clean up the mess. We still laugh about this one.
It smells like microwave popcorn
I will always remember this poop. About 5 months postpartum, my son was drinking a 50/50 combination of breastmilk and HiPP formula around the clock. His diapers were a mustard yellow and sometimes smelled sweet like yeast dough. (I warned you there would be metaphors.) Well, one night it smelled like microwaveable butter popcorn. I couldn’t help pointing it out to my husband. He took a whiff and swore off microwave popcorn. The man hasn’t touched it since.
Soft serve on the changing table
My son caught me off-guard one afternoon. He had pooped (surprise, surprise) and, thinking nothing out of the ordinary, I went to change the diaper. I put the new diaper in place and got the wipes ready. I pulled the diaper down. He grunted, pushing out what only can be described as soft serve. It just sort of oozed out. But instead of catching it in a Froyo cup, I quickly had to react and put the diaper back up while laughing uproariously at the circumstances.
Split pea soup will never be the same again
Unfortunately for my husband again, our son’s poop once resembled split pea soup. Mind you, I’ve never been fond of the soup. Looking back on my notes, this one seems a bit more watery than it should have been. It isn’t cause for concern now. As a good rule of thumb, baby poop should generally resemble the texture of hummus and, Lord knows, we certainly see a lot of that now.
*For the first 3 months of his life, I jokingly referred to my son as the Poop Shooter. He would poop mid-feed and I could hear it shoot right out of him, like a gurgle.
As someone who is required to visit the dentist 4 times a year, I’m always learning more about the importance of dental health and how to practice good dental habits. These same habits still apply when you become a mom.
Fun fact: many moms neglect their dental health after having a baby. It makes sense. You’re preoccupied with around the clock feedings and running on empty thanks to all those sleepless nights. Frankly, it’s never a good idea to stop brushing or flossing your teeth when you become a parent. And, unfortunately, if you’re a mom with Sjögren’s syndrome who already is at high risk of tooth decay, you really can’t afford to neglect your teeth.
Pregnancy really does wreak havoc on a woman’s body, even if you don’t have an autoimmune disorder. During the first trimester, if you’re nauseated and vomiting around the clock, the acid can gnaw away at the enamel of your teeth, resulting in tooth decay. It’s important to constantly rinse your mouth with water.
Unfortunately, during pregnancy the hormones can also negatively affect your saliva production. They can stop the saliva from regulating the bacteria in your mouth, resulting in gingivitis. They can also decrease your saliva.
Women who don’t suffer from Sjögren’s may suddenly find themselves experiencing the negative effects of a dry mouth.
If you are suffering from dry mouth, I highly recommend trying these lozenges, Slippery Elm bark tea (the tea is more effective than the capsule or a lozenge), and using this brand of mouthwash. I’ve used them to manage my own dry mouth night and day. To me, they’re the best on the market right now. You can also drink water infused with lemons throughout the day to help increase saliva.
Make it a priority to visit your dentist during pregnancy and within the first 3 months postpartum. I was able to take my son with me to the dentist so it made it easier to keep my appointments. You also might want to switch to high fluoride toothpaste for a time. While I have a prescription for it, most dentists’ offices do carry it.
And please consult your physician or dentist before trying any of my unsolicited advice. 😊
Infographic Credit: Jefferson Dental
Get to know the MELT Method: Bodywork to reduce stress, improve connective tissue, and find pain relief.
For those new to or not familiar with the practice, bodywork is a form of alternative medicine to improve the mind-body connection. Bodywork techniques can range from energy work and yoga to manual therapy performed by physical therapists.
I think of the mind-body connection as being in tune to how you physically feel. For me, this can manifest itself in two ways.
It’s understanding how something feels when I’m engaged in movement and being able to adapt my body if I don’t get that same sensation. It’s also knowing when there is pain or illness in my body and finding the exact location.
The MELT Method has personally helped me with joint stability. It has also helped me find pain relief and release stress, especially after a long day of caring for a baby. After I do an assessment, I’m much more relaxed. I think it’s great for self-care and times when you have trouble sleeping.
As I currently manage kneecap issues and have been working on strengthening other muscle groups to support my knee, I use the MELT Method to regularly massage my quads after every pilates workout.
The MELT Method is also great for pregnancy. Whether you’re suffering from pelvic pain, sciatic nerve pain, or just having trouble sleeping, MELT can help.
Assessment with your foam roller
Start by lying on the floor with your palms facing up, eyes closed, and sensing where you might be off balance in your body.
Ask yourself: Does one side of the body feel heavier than the other? Is your back flat on the floor or do you feel adduction with your shoulder blades? Do you notice more or less tension in your neck? Are you experiencing lower back pain? Try to pinpoint where and what you feel.
Then lie down on your foam roller in this position:
Start by doing pelvic tilts on the foam roller.
Practice marching or lifting one leg up at a time so that the knee is bent at a 90 degree angle.
With your arms lifted in the air, bring down one at a time to your side and then alternate. You can also do circles with your arms on the roller.
The goal is to warm up the body and relax. Do whatever movement feels good and natural to you. Then return to lying flat on the floor, eyes closed, and palms facing up. Do you notice a difference? Do you feel more balanced on both sides of your body? Have you relaxed in any areas? Are you still feeling tense — if so, where? Are you still experiencing lower back pain? Or have new issues presented themselves?
Now that you’ve assessed, it’s time to massage with the MELT Method.
The MELT Method
I could take pictures and walk you through this step-by-step, but I’d rather leave it to the expert. She has so many great videos to introduce you to the MELT Method. For a professional example of what this process looks like, watch Sue’s video on releasing neck tension:
If interested in learning more, you can find a MELT instructor near you. I’m fortunate to have access to a pilates instructor who also specializes in the MELT Method. It’s been life-changing in helping me manage my connective tissue disease and the daily stress that is part of being a mom.
I first learned about cupping therapy from my physical therapist after my c-section. With my doctors’ approval, I had looked into massage to re-mobilize my scar tissue and bring back sensation to my lower abdomen. You can obviously do this yourself at home, but I figured I’d leave it to the professionals.
I won’t lie. The first few visits were very painful and I nearly cried on the table. But I stuck with it. In a matter of weeks, the therapist suggested that we try cupping — an equally painful procedure that could help my fascia accelerate healing.
Cupping therapy is a technique that uses suction cups to encourage blood flow to your connective tissue and increase circulation. It can help reduce inflammation and pain as well as increase your range of motion.
Initially, when I tried cupping therapy on my c-section scar, the procedure was painful. After two sessions, I found that it was easier to manage. It actually started to alleviate the pain and increase physical sensation when I touched my lower abdomen. The therapist showed me how to do it, so I could buy the cups and continue treatment at home. Let’s be real: it’s more cost-effective and easier to do yourself when you have a baby to care for.
If you’re willing to try cupping therapy at home on your c-section scar tissue, only keep the cups on for 5-10 minutes. That’s 10 minutes at most. Do what makes you comfortable, even if that means working up to 5 minutes gradually during each cupping session. You only need to practice cupping therapy 1-2 times a week to see results.
I also recommend starting with smaller cups, as they are more effective for a c-section scar. If you’re applying cups to the c-section scar, place them directly on the line to help mobilize the tissue. Experiment with how much tissue you “vacuum” each time. You may find you only need a small amount to get the blood flowing.
Even if you’re suffering from chronic joint pain due to rheumatoid arthritis, a connective tissue disease like Sjogren’s, or fibromyalgia, I highly recommend trying cupping therapy. It can be especially helpful for problematic areas like your back and hips, not just your abdomen.
It’s a controversial subject now, but I used organic European formula to supplement and, later, feed our son entirely when I was no longer able to breastfeed because of kidney stones. It’s mostly because European infant formulas are free from additives, preservatives, and GMOs. After I joined the Facebook group Holle and HiPP Formula Discussion, I was surprised to see at the time that were only 10k members. To date, there are 12.5k members. Formula is the best it has ever been, with brands like Holle and HiPP and now LouLouka that are accessible through the internet, and yet, only 12,577 parents are talking about them on Facebook?
I know Holle and HiPP formulas to be superior to mainstream ones like Similac or Enfamil because I’ve used them all and I’ve seen differences in my son’s diapers. It’s no joke. His poop after drinking HiPP or Holle looked and smelled just like poop from breastmilk. I never saw that effect with Similac.
I initially chose to use Holle because of the ingredients on the label but quickly switched to using HiPP. Our son experienced some problems with constipation and acid reflux early on. We found HiPP to be much gentler on his stomach and we also liked it because it contains probiotics. Even though more research needs to be done, studies are starting to show that probiotics can help babies who are born by c-sections.
Nutrition is very important to me and I know that I wouldn’t be able to manage my disease without it. My nephrologist swears that my diet has been helpful in keeping some of my levels where they need to be. So why wouldn’t I apply this same logic to feeding my son? Shouldn’t he also have the best possible nutrition, especially at a vulnerable age when his brain is developing?
And if you won’t take my non-endorsed word for it, you should consult with the Baby Formula Expert, a mom who is also a doctor and expert in infant nutrition. She’s on a mission to educate parents about infant formulas. If you’re curious and want to learn more about what’s in European formulas and how they compare, I highly recommend reading this post and looking for her brand breakdown.
Sure, it’s challenging to discover you can only buy these formulas online. The price point can also be challenging because it’s more cost-effective to buy the formula in bulk. But the knowledge of giving my child the best possible nourishment when I was unable to breastfeed? Priceless.
What’s even better is that HiPP now makes a ready-made bottle. It is a more expensive option, but it’s one of those products that gives parents “control and convenience,” as my husband likes to say. The ready-to-feed bottles don’t just save me time when we’re on the go or on vacation. As a mom who is often fatigued, I’m able to squeeze in one more power nap when I’m not forced to boil more water or sanitize another bottle. Or you know, for those times when I sublux a joint and need to rest with some frozen vegetables on my kneecap.
You’ll find I occasionally write about products that save me time and energy because, frankly, I wouldn’t be able to manage my autoimmune disorder and be a mom without them.
Today officially marks one year since my best friend’s passing. Truth be told, this has been the hardest year of my life and mostly because she’s not here anymore. I want to believe that when someone you love dies, they’re never really gone from your life. But the truth is, I feel her absence so strongly.
She was one of the few people in my life who simply “got it” and understood me so easily. She consistently showed up for me, not just for the big life moments, but so many of the little mundane ones too. She never judged or criticized me or my decision-making. She loved me despite all my faults. If I’ve learned anything from losing her, it’s what friendship really means. It’s those friends who can sit and be present with you in joy, suffering, or complete silence throughout life’s circumstances that you must hold onto with both hands.
So today, in tribute to Amanda and the legacy she left behind, I’d like to share what she taught me.
Your best advocate is always yourself.
I grew up with Amanda and, for most of her young adult life, she was quiet and kept to herself. Of all my friends, she probably had the most solid foundation. She was stable and strong-willed and knew what she wanted to do in life (and conversely, not do). As a fellow introvert who was constantly striving for more learning and varied experiences, I appreciated these qualities in her.
I had the privilege of watching her grow over the years into an even stronger woman: someone loud and outspoken, particularly about her health. I felt immense pride in being her friend. She wasn’t afraid to fight for herself or what she believed in, even if it meant being vulnerable or if it made others feel uncomfortable or unsure of how to respond. She would stand in her power and tell the doctors how she wanted to be treated. She wasn’t afraid to be herself. She used her voice for good and to inspire goodness in others.
Get crystal clear about what you want and pursue it.
Whether it was her husband, Education degree, or dedication to caring for preschoolers, Amanda always knew what she wanted.
When I visited the Mayo Clinic in February 2017 with Amanda and we received some discouraging news about her rare chrondoblastic osteosarcoma, I realized I needed to follow her example. That year, I stopped being afraid of putting myself out there. I applied for a high-level job on a community college board. I approached dating like job hunting. Admittedly, I faced plenty of rejection in the process and I never got the job, but that same winter, I met my husband.
Make a decision and stick with it.
Amanda decided to pursue many clinical trials after that Mayo Clinic visit. I know she hoped that one would eventually lead to a cure. I’m certain that her faith is what kept her alive so long, as sarcoma is generally a death sentence.
Amanda didn’t look back after making the decision to pursue clinical trials, regardless of what other patients or her peers said. I often joked that she would go down in history books for being a guinea pig to science. I have no doubt that her participation in research and trials has improved other patients’ experiences and expanded awareness of sarcoma.
I am sad that she didn’t live long enough to see me become a mother or meet my son. But I know I wouldn’t be on this path of advocacy without learning these hard lessons in the process of losing her.
Welcome to Mama’s Wellness Blog. I’m making some much-needed changes to the site in 2022.
Why did I take a year-long hiatus from writing? Last year, I made the decision to run for office in my district. I was also serving as a caregiver for my family through some serious health issues and working full-time in hospital administration. Blogging was the last thing I wanted to do.
Thank you for your patience and please check back for updates.
I anticipated having some response to the COVID-19 vaccine (Moderna). Even when I get the flu vaccine, I generally feel ill during the first 24-48 hours. The COVID-19 vaccine was no exception for me.
Day #1 of side effects
The first day my arm swelled and was super sore at the injection site, similar to reactions I’ve had with the tetanus shot. It was so painful I was unable to do certain activities, like picking up my son. Later in the day, I had a moderate headache. After two hours of suffering, I decided to take Tylenol.
Day #2 of side effects
The following morning I woke up with my usual fatigue. My arm still hurt like hell. By the afternoon, I felt like I had developed a mild cold. My throat was a bit sore, I felt achy, and I just wanted to nap on the couch. I cursed myself for having gotten the vaccine so close to New Year’s Eve, as I didn’t feel up to celebrating. Each day, I reported my symptoms back to the CDC through their v safe tool.
Day #3 with no side effects
It has now been a few days since my first dose of the COVID-19 vaccine and I’m happy to report that I’m feeling much better. I have worked out on the Reformer, taken a long walk around the neighborhood with my son, and carved some time out in my day to write this post. I also feel a sense of relief mentally that comes from knowing I have an additional layer of protection against COVID-19 now.
Why wearing a mask and social distancing is still important
It’s a new year, but this is still the same virus. It’s important to continue wearing a mask and practicing social distancing, even after you get the COVID-19 vaccine. And here’s why:
- 95% efficacy from the vaccine is not achieved until after a couple weeks after your second dose.
- There are currently no antibody titer tests to determine if you are fully immune after getting the COVID-19 vaccine.
- We do not know exactly how long immunity may last. And with new strains of COVID-19 on the horizon, it is important to continue relying on all safety measures and doing our part to protect each other.
The winter months of this pandemic may be the hardest we have faced yet. #MaskUp and stay safe, everyone.
It’s been a wild ride since I moved to work in healthcare at the end of March. I never imagined I would get the COVID-19 vaccine before New Year’s Eve.
Skepticism among my friends about the COVID-19 vaccine
I understand why many of my friends are skeptical of getting the COVID-19 vaccine. The autoimmune community is so often neglected in healthcare. There are no cures, let alone roadmaps for how symptoms will develop or change over a long period of time.
It’s hard to constantly triage your own care, look for specialists, and find the latest treatment options. When you have countless negative encounters with medical providers who often don’t believe you, it’s easy to give up hope and swear off the system.
No safety data for the COVID-19 vaccine in autoimmune patients
We aren’t a population that is frequently studied or even considered. According to the CDC, there is no safety data on the COVID-19 vaccine in people with autoimmune diseases.
When I was first notified that I was eligible to receive the COVID-19 vaccine, I thought about what I would be getting myself into. Nothing is without its risks.
But then I thought of my son. Even if I am good about staying home during this pandemic, he sees other people when he goes to daycare, and there’s no telling what those people do or where they go.
With Sjogren’s in my kidneys, I didn’t want to risk the possibility of becoming severely ill with COVID-19 and experiencing kidney failure at 32 or, worse, dying on a ventilator and leaving my son to grow up without his mother.
Being the change I want to see in a world in crisis
Then I thought of all the people who benefit from me getting the COVID-19 vaccine and sharing my data with the CDC. The 4 million people living with Sjogren’s in the United States. An estimated 20,000 people living with distal renal tubular acidosis like I do.
I can help bring attention to this population and how the COVID-19 vaccine, and hopefully future vaccinations, affects those of us with autoimmune diseases.
I know months have passed since my last post. As a working mom with a toddler who is more often at home than preschool, this year has been especially challenging for our family. I wanted to let you know that I’m still here and I’m still fighting for the autoimmune community and Sjogren’s during this pandemic.
I’m participating in our Sjogren’s 5k walk and asking everyone to please donate to the cause. These are hard times, but the change you can spare will improve the lives of others like me. Sjogren’s is receiving more visibility and research, especially as new manifestations are discussed in medicine.
If COVID-19 has exposed anything for the autoimmune and Sjogren’s community, it’s that we need better options than Plaquenil or Hydroxychloroquine. Research shows it may not be as helpful for primary Sjogren’s and risks can outweigh the benefits. As more patients share their stories, we gain more traction. I think this article in the New Yorker adequately explains to outsiders what it’s like to live with these diseases.
What I’ve learned from being a part of the autoimmune and chronic illness community
It’s been 6 months since I was put on medication to help manage my kidney stones and 9 months since I changed my diet completely. Since my last renal panel and scans, it looks like both are working for me. My labs have never looked better to my nephrologist.
That said… if I have learned anything on this journey with Sjogren’s and from my support group, it’s that there isn’t a one-size-fits-all approach. The disease doesn’t affect everyone the same, so treatment isn’t going to be the same. Not even the autoimmune paleo or AIP diet works for every Sjogren’s patient. Exercises do help, but it won’t stop the fatigue completely.
You have to find what works for you. Don’t feel guilty about giving up something you’ve tried that others swear by or exploring an alternate path.
There are some days I still feel so incredibly alone, as my rheumatologist likes to remind me that my renal condition with Sjogren’s is rare. While I’ve grown tired of trying to explain to my family and friends why I feel the way I do, I take comfort in my local support group that I found through the Sjogren’s Foundation.
I continue to learn so much from talking to other Sjogren’s patients, including those who are suffering from chronic kidney disease and other underdiagnosed complications. It gives me hope that, together, we can change both the narrative and outcome of this disease.
This post goes out to all those bad mama jamas who are caring for babies while trying to break the glass ceiling. I see you, I applaud you, and I’m right there with you in the challenge that is working from home.
I have a full-time job that sometimes requires me to work 12 hour days. My husband also works on a COVID-19 response team. To say we’re busy during the week is an understatement. We also have a toddler to manage while working from home.
We’re able to have part-time child care during the week, but I know how hard it is to manage without that help. I’ve been working from home since my son was born. Tuesdays and Fridays have always been my hardest days of the week because I was completely on my own. When the pandemic began my husband finally understood why I was so desperate for him to get off work early.
And our son didn’t have screen time until he was almost 17 months old. I was hoping to make it to his second birthday before he knew what a TV was, but being quarantined forced my hand.
Here are some non-screen time strategies during the day that help me manage both jobs when I’m working from home.
Tip #1: Invest in Bluetooth earbuds with a built-in microphone for working from home
It’s best to be hands-free for conference calls when working from home. These earbuds were my saving grace, especially in the early days. It was easier to be on mute and pick my son up if he suddenly started crying. Or if I needed to put him down for a nap at the beginning of a call, I could still listen to what was said without disrupting my coworkers.
Tip #2: Schedule calls during naps or block time to complete tasks during naps
This all depends on your child, your workload, and the day. Your child may not be a good napper. You might not have regularly scheduled meetings. If you can get into a routine of putting your child down at the same time every day, it’s easy to use naptime for taking calls or working from home. It’s easier to prioritize what tasks need to be completed so you can tackle them in order.
When my son took two naps a day, I’d use his morning nap for calls and his afternoon nap for whiteboarding or completing any number of tasks. Once you become a parent, you’d be shocked at how much you can accomplish in just 2-3 hours. You work more efficiently because you’re working against the clock, even if you’re home.
Tip #3: Pull out a bag or box of novelty toys that only makes an appearance when you’re preoccupied
For this tip, you’ll need to hide a bag or box of toys of your choice. Think novelty items. These are only toys that make an appearance when you absolutely need them because they will distract your child and encourage independent play. It might buy you half an hour for that impromptu meeting. In your case, maybe you’re lucky if you get just 15 minutes of independent play, but I can assure you it works for working from home.
Tip #4: Sensory play in the highchair or at the kitchen table
It’s easier to work near an infant or young toddler when you give them a task they can do. Sometimes this includes taping sketchbook sheets to the table and handing them ergonomic crayons to encourage them to make scribbles. Sometimes it’s as simple as providing them with a box of beans with a measuring cup. Let your child’s interests guide you.
Alternatively, if you have space outside your home, you might set up a sand or water table. If you use it inside, you can fill it with rocks, beans, or rice for sensory play.
Now that our son is so interested in rocks, he can will play for an entire hour with just a box of rocks. He takes them out of the box, inspects them, puts them in groups, etc. It keeps him busy while I’m working from home.
Tip #5: Working from home includes the bathroom
They say you should always switch the room you’re in to increase productivity when you’re working from home. I’m half-joking, but you’d be surprised at how easily you can manage your work calls when you sit on the toilet next to your child in the bathtub and let them play with their toys.
I’m not suggesting you attempt to bathe your child while working on a task. However, if the tub is dry and they’re interested in playing with the bath toys, take advantage of it. It will keep them distracted long enough for you to take notes on your call or send some emails.
It can be hard to focus on the positive outcomes when you’re confronted with the COVID-19 data everyday. You can see Tableau’s Data Resource Hub for Coronavirus (COVID-19) below, which is updated daily.
The truth is there’s no going back after COVID-19. Our lives will be permanently changed from this pandemic.
Here are 3 benefits to come out of the COVID-19 crisis for the autoimmune and chronic illness community.
1. Telehealth and virtual care visits
In the past few weeks I’ve had my first virtual care visits with my rheumatologist and urologist. I love it! I don’t lose precious work time or struggle to find child care at the last minute for multiple doctors’ appointments. Instead of driving at least half an hour one way, I can talk to my specialists face-to-face at home.
While telehealth isn’t necessarily new in healthcare, it wasn’t being fully utilized before COVID-19. Now that it’s being used by more providers and facilities, I’m sure we’ll see more incentives for the widespread use of telehealth.
2. More tests and lab work from home
As testing for COVID-19 becomes available to the general public, I suspect we’ll see more tests you can take at home. These tests won’t just be for COVID-19, either.
As an example, I currently use the Litholink test at home. They send me all the packaging and items I need to complete the test and then ship it directly from home. FedEx picks it up from my doorstep. This test is helpful for determining if I’m at higher risk for producing kidney stones based on my dietary intake. It’s how I discovered I have distal renal tubular acidosis caused by Sjögren’s.
3. Greater awareness of drugs to treat autoimmune diseases
It sucks that the autoimmune community is currently facing medication shortages. It also sucks that hydroxychloroquine and other autoimmune drugs like Plaquenil are not actually helpful in treating COVID-19. We need to find a way to successfully treat COVID-19 and fast. That said, I think the media’s attention on these drugs is only making a stronger case for greater support in our community. Perhaps it will lead to more research on similar pharmaceutical ingredients and more treatment options for rheumatoid arthritis, lupus, Sjögren’s, and more.
You can read more about the awesome technology and healthcare initiatives that are happening right now as we tackle the COVID-19 crisis. I think these innovations will be able to improve healthcare for everyone in the long-term, especially those of us who suffer from chronic illness and autoimmune diseases.
April is Sjögren’s Awareness Month. Every year, the #ThisisSjögrens campaign takes off and I find myself speaking out in the hopes that someday our world might start to take this disease more seriously.
Symptoms I’ve learned to live with
Sjögren’s is not a cookie cutter disease. It’s not just a “dry eyes and mouth” disease. Sjögren’s affects everyone differently and there is no roadmap for any individual, even as it attacks the joints, lungs, kidneys, blood vessels, digestive organs, nerves, and more. Since I was diagnosed in early 2017 with Sjögren’s, I have developed distal renal tubular acidosis (a rare kidney disease) and interstitial cystitis. Both are very painful conditions to live with.
If you’ve ever suffered from a UTI, then you know what interstitial cystitis feels like. An episode can last anywhere from 3-14 days when you experience a flare up. Some folks choose not to work or simply cannot work during this time because the symptoms can be so debilitating.
Kidney stones are equally painful and can cause many symptoms, ranging from extreme flank pain with nausea and vomiting to more “simple” symptoms like bladder inflammation and irritation. I keep a strainer under our bathroom sink just to pan for gold and see if I can differentiate what I’m experiencing (UTI, kidney stone, or just bladder inflammation) on any given day. I now have a slew of cups for urine samples to drop off at the lab every time I feel the onset of my symptoms.
Staying home even when you don’t want to
In the midst of a pandemic with a toddler, I don’t feel as stir crazy as some. For the last 6 years, I’ve mostly worked from home. In the last year and half, I’ve seen many of my best laid social plans fall apart because I’ve struggled with managing my symptoms. Frankly, it’s hard to go anywhere or do anything if you’re stuck on the toilet in pain all day.
Life with Sjögren’s makes you appreciate the days you do feel comfortable or pain-free when you’re at home.
Hoping for the best, preparing for the worst
There is no cure for Sjögren’s. There is no end in sight for my symptoms. The best I can do is speak up to my doctors when problems present themselves and ask for help.
Being a mom with an autoimmune disorder really has its challenges. Sometimes I just have to say, “this sucks” aloud and angry cry until it stops hurting on the inside. I never thought life would be like this in my 30s. It’s another Saturday that I’m stuck at home in pain instead of enjoying the symphony with my son.
As my urologist suspected, I now live with interstitial cystitis, which is apparently common when you’ve got an autoimmune disorder like Sjogren’s. It explains all of the flares I had in the past year and why none of the antibiotics worked.
Distal renal tubular acidosis, the paleo diet, and kidney stones
Did you know that long-term use of the paleo diet can cause kidney stones? It’s interesting to me because it’s the first diet recommended for those suffering from autoimmune disorders. Going paleo may help with your inflammation in the short-term, but I think it’s important to know that it can have consequences on your health.
With distal renal tubular acidosis in Sjogren’s Syndrome, I already have a propensity to make stones. My nephrologist wants to keep me off meds and my urologist’s goal is to keep me out of surgery. They recommend I change my diet altogether. I started researching low oxalate and low protein anti-inflammatory diets. Not surprisingly, there’s not much information out there and a lot of the research seems to be in conflict.
With my scholarly approach to research, I’m going to share the best of what I’ve found with you today. That said, I think it’s important to take all diet recommendations with a grain of salt (just one grain for all you Sjogren’s patients watching your salt intake).
Resources I’ve found to help manage interstitial cystitis and kidney stones
- The University of Chicago did a great write up on how to eat a low oxalate diet (based on Harvard’s list). It’s been helpful for knowing which foods to avoid and which ones to combine with calcium when you eat them in moderation.
I especially like their documentation of 177 high oxalate foods, charts, and the breakdown of information (which foods you should avoid vs which foods you should limit). For example: 1 serving of almonds (only 11 almonds, people) contains 122 mg of oxalate.
- This is the most extensive food list I’ve seen for managing interstitial cystitis. The table I’ve copied below is only the beginning, folks. Note: lemon is one of the most bothersome foods for the bladder. Lemon is also one of the few foods to actually help with kidney stones. It is hard when you are managing two conditions that can conflict with each other. Again, take it with a grain of salt and find what works for you.
Recipes and nutrition guides for managing interstitial cystitis and kidney stones
- This is the one helpful Low Oxalate, Anti-Inflammatory cookbook I’ve found. What I appreciate most about her book is the breakdown of low oxalate bread, grains, flours, condiments, spices, and nuts (yes, you can eat nuts on a low oxalate diet!) It’s amazing for meal planning and grocery shopping.
A fair warning that many of her recipes contain coconut flour, but she does recommend using Bob’s Red Mill 1:1 Gluten-Free Flour — which I happen to already like and use for baking. While I appreciate coconut, I don’t like everything tasting like coconut.
- The Stopping Kidney Disease Food Guide has lots of recipes and nutritional information. It’s helpful to see alternative ways of preparing recipes I love, like ginger garlic vegetable ramen and Mexican street corn. I also really appreciate his recommendation for non-dairy milk substitutes for kidney patients. When you have to give up the oat milk, it can be hard to find new alternatives that don’t contain added calcium as a supplement.
- Supplements like Prerelief and Javacid to reduce the amount of acid in my coffee (low oxalate, y’all), tomato basil soup, and other foods I like to enjoy in moderation.
- The University of Chicago did a great write up on how to eat a low oxalate diet (based on Harvard’s list). It’s been helpful for knowing which foods to avoid and which ones to combine with calcium when you eat them in moderation.
I’ve been asked by some of my readers about my eye care and makeup routine. As part of managing my dry eyes and Sjogren’s, I follow a strict regimen outside of seeing a trustworthy optometrist and ophthalmologist every 4 months. I only use certain products on my face on a daily basis.
My daily eye and face care routine for dry eyes and skin
Surprisingly, I don’t wash my face that often. If I do, I only use Dr. Bronner’s unscented baby soap. When I need to moisturize, I use a tiny amount of coconut oil. To remove my eye makeup, I use unscented Micellar wipes with argan oil. For sunscreen, I now use Proven skincare or Vanicream, which you can find at just about any drugstore.
The power of RESTASIS for dry eyes
About 4 years ago, I was really struggling with chronic blepharitis. If you’ve experienced eyelid inflammation then you know how debilitating it is. You can’t open your eyes to see anything and you’ll find yourself writhing in pain and tears all day. It took at least 6 months to a year before I noticed positive results with using RESTASIS daily. If you were to examine my eyes now, you wouldn’t even know that I suffered from dry eye thanks to RESTASIS. It’s made THAT much of an improvement in my life. I no longer have to take a variety of steroids or allergy medications to stop blepharitis. I’m also no longer afraid to travel to arid climates for short periods of time.
If you’re going to wear makeup, invest in high quality brands
While I don’t wear foundation, I have always loved eye makeup. I don’t put cheap makeup near my eyes anymore. If I’m using a pencil eyeliner, I use Jones Road or W3LL PEOPLE’s. I avoid applying eyeliner to my waterline. Instead, I draw the line through my bottom lashes and smudge it for effect.
I only wear Jones Road or Jane Iredale eyeshadow on a daily basis. I try to avoid anything that’s marketed as “waterproof.” It only dries out my eyes.
If you get an infection, dispose of any current makeup products
Get into the habit of washing your makeup brushes after applying makeup. This makes it easier for you to use them the next day. That way, you know they’re clean and there’s less chance of irritants getting in your eyes.
If at any point you suffer from an eye infection, it’s best to discard your current products and replace your makeup. Sterilize any brushes for future use.
ASK: Is this really hurting me?
I wish I’d gotten this advice years ago when I was trying different diets in an effort to find out what would help me manage my symptoms and flare-ups. How do you find out? You try an actual elimination diet.
That doesn’t mean going cold turkey or suddenly throwing out everything you love from your cabinets or pantry. It doesn’t mean trying an absolutely restricted diet. It means temporarily removing a certain food or foods from your diet. After you’ve removed it/them (and this varies by individual) for at least 3-4 weeks, you can slowly bring back one food at a time and watch how your body reacts. Are you struggling with peppers and spicy foods? Is it dairy that’s contributing to your inflammation? It’s much easier when you can isolate them.
ASK: What do I need to feel satiated and happy when I eat?
You are what you eat, but there is also an element of eating that is pleasurable and meant to be enjoyed. Food should taste good. Now I’m not suggesting that you use this question as an excuse to respond with binge eating your favorite foods. Rather, if you’re following a regimented diet and still feeling hungry, you might need to eat more of what you enjoy that fills your belly in that diet.
I remember when I first tried Whole 30. I didn’t intend to eat so few carbs or deprive myself of dessert. Yet I found myself desperately making raw chocolate in my kitchen and scarfing down flax seeds and strawberries late one night to kill the hunger pains. It didn’t work. I quickly realized that in order to meet my needs with Whole 30, I needed a lot more carbs and, for me, that was a variety of potatoes.
ASK: Are there different ways I can prepare this food? What research do I need to do?
Let’s be real. When you’re limited to eating certain foods over and over again, it gets boring. You have to change it up, especially if you’re going to stick with a restricted diet for life. This means seeking out different recipes and actively looking through relevant cookbooks.
Tips for autoimmune mamas on a stricter diet
Now if you’re a mom, I know you don’t have time to look through cookbooks. I find it helpful to follow chefs and food channels like @autoimmunepaleo and @halfbakedharvest on social media. If something looks appetizing and interesting, I save the recipe.
Sometimes this means finding super delicious recipes that aren’t paleo and substituting ingredients I know I have that will work, like coconut oil or ghee in place of butter. Or coconut aminos in place of soy sauce. With Sjogren’s, I try to limit my salt intake, so I generally use no more than 1/4 tsp in any recipe. If I’m baking, I’ll use coconut palm sugar or maple syrup (the closest to what was formerly known as grade B) in place of cane sugar. I’ll also subsitute with medjool dates, like when I make Buckeyes at Christmas. Frankly, you can’t tell a difference.
In desperate times, I rely on my paperback copy of Mediterranean Paleo Cooking and my hardcover Cooking from Scratch and lately One Pan, Whole Family. You’re probably wondering when I even have time to make paleo food from scratch with my full-time job and a baby that’s almost 10 months old. I’d like to practice weekly food prep on Sundays, but most Sundays I’m resting, so… sometimes I impress myself and get fresh ingredients during the week to cook on the fly, mostly with grocery delivery or pickup through Instacart (yes, I’m that parennial). But mostly, I rely heavily on using frozen vegetables or fruits in easy Vitamix recipes and Crock Pot recipes.
I also freeze what we won’t be using or eating in a week’s time for future meal planning: homemade bone broth, apple butter, tomato sauce, or other leftovers.
Another thing I do is toss everything I need to eat in a bowl and mix it. Often I’ll just throw our leftovers into a bowl with some greens, a little bit of this dressing, and some probiotic pickled carrots.
And here’s another tip. If you can afford to outsource it occasionally, do it. Before I found local delivery service Methodology, I’d order Sunbasket once or twice a month. It made it easier on us with a newborn, even if I still had to prepare and cook the meals myself. Admittedly, most of the time I would alter Sunbasket’s recipes. I wouldn’t use their recommended salt intake and I wouldn’t pan fry it or use oil like most recipes “require” from Sunbasket. I’d bake or broil most items. Occasionally we’d grill them.
Full disclosure: I’m not perfect
I don’t want to sound like I’m preaching with my methods. I’m going to be straight with you. I’m not perfect at following my paleo diet 100% of the time. It’s not just because I’m a new mom and life is generally chaotic. Part of the struggle is I’ve always been a foodie, even before my diagnosis. I believe that part of living means experiencing what brings you joy. Part of that joy for me has always come from food.
As with any autoimmune disorder, I have my good days and bad days. I can go a solid month without drinking alcohol simply because I’m dealing with too much inflammation. Sometimes I’ll go two months without dairy, especially if I’m fighting off multiple viruses… And then sometimes when I’m feeling somewhere close to normal-ish I’ll cheat and eat pizza without feeling guilty about it. Even if it means I have to take probiotics and deal with the effects on my gut. To me, it’s just part of managing my autoimmune disease. I don’t chastise myself for falling off the bandwagon and not being as strict with my diet all of the time. As far as I’m concerned, life is too short to not occasionally indulge and eat that cake.
And the truth is I have seen many specialists over the last three years for a variety of health issues. Each one always seems to have an opinion on what I should or shouldn’t be eating and they’re all in conflict with each other. I’ve also seen different levels fluctuate in my bloodwork after being on stricter diets for 3-6 months. There never seems to be an easy answer for me.
Living with an autoimmune disease is a balancing act. When I’ve overdone it or noticed that a particular food has negatively affected me, I have the discipline to rein myself back in and do what it takes to feel better. And that’s ultimately what matters most.
What people don’t realize is there isn’t a cure. And even if there was one, it wouldn’t work for those of us already affected. Once the damage is done to your glands or organs with Sjögren’s, it doesn’t go away. Inevitably you must find a way to live with it and still enjoy living your life to your best ability.
My son has been on some amount of formula since the day he was born. It wasn’t a part of our “plan.” I remember coming home from the hospital with the urge to just set the “plan” on fire. I tore the papers to shreds furiously while my husband laughed.
Breastfeeding turned out not to be the magical, life changing act I believed it to be. I had an atypical and emergency c-section. Because I had lost so much blood during surgery, my milk wasn’t able to come in for 12 days. I remember pumping around the clock every 2 hours, even at night, feeling udderly hopeless and frustrated. Puns aside, I wish someone would have told me it might be like this.
So our son survived on mostly formula for the first two weeks of his life. And it wasn’t the good stuff. We’re talking Similac, the crap they give everyone in the hospital that has unnecessary ingredients like maltodextrin and corn syrup and, when compared to European baby formulas, too much sugar for a baby.
I felt so defeated. I had all these aspirations as a new mother. I intended to deliver naturally, to nourish him on my own, and to not give him a Binky ‘till we had established that beautiful, amazing breastfeeding relationship my husband swore to protect.
But, as you’ll find with caring for children, nothing ever goes according to plan.
The experience was far from what they taught us in our childbirth education classes. My water broke with a gush — like a scene from the movies where the woman is in complete shock because she’s flooded the precious hardwood floors she had just Swiffered and the husband comedically retorts “oh, you must have just pissed yourself” only to walk around the bed and realize the predicament. Of course, he then fumbled to find the paper towels and clean up the mess before we left for the hospital.
It was 27 hours of labor with 3 hours of pushing and no sleep for 48 hours. It was not the delivery every woman wants. I never saw my son being born. I didn’t get to hold him first or witness the crawl that a baby makes on its mother’s chest during the “golden hour.” I was unconscious.
And yet, the moment I laid eyes on my son, all those details ceased to matter. Loving him and being his mother was simply enough for me.
If I could rewrite the birth plan today, it would read “in the event of any complications, feel free to completely disregard how anal-retentive I sound, focus on feeding my child, and let me recover.” I think all mothers deserve such grace and compassion after the ridiculously hard process that is labor and delivery.
Truthfully, the experience never goes quite like you hope it will.