Despite Lupus

Lupus and Gut Health: Food Sensitivities Patterns Part 2

noreply@blogger.com (Sara Gorman) — Tue, 31 Mar 2026 12:00:00 +0000

Today, we're talking about the patterns that emerge, for better or worse, as we navigate our food sensitivities over in here at Gorman Headquarters. Have you ever changed your diet or modified your eating habits in order to improve your health? Was it doctor-directed? Or self-imposed? Did you learn anything from the experience?

Often times, we learn that the food eliminated isn't the culprit - it's actually something else altogether. While frustrating, this process of elimination technically gets you closer to the end you're seeking. But getting there can be so hard. Here are two other trends that we're seeing as all four of us are eliminating foods or beverages. I'll number them 3 and 4 since this is officially a part two!

3) Searching for answers stinks.

I wrote about this in a recent post, but I don't think it can be overstated. Searching for answers, trying to pinpoint a culprit, decoding our body's signals - they all take an inordinate combination of patience and determination. My daughter is about to start a topical for her skin, and we're just bracing ourselves for the rollercoaster that comes with these creams. Seven to ten days of reaction, another seven days to calm down and adjust, and then several weeks to see if it works. This two to six week process can be trying, but considering that she's tried a handful of other topicals before, enduring the same lengthy process, I can see why it's become a hopeless game of "wait and see". This can happen when we start any new treatment. Is this the one that will finally work? Will it make my symptoms worse? Or will it be a dud just like the others? All the unknowns, on repeat.

When you try treatment after treatment, you see the disheartening and frustrating pattern emerge. Is it possible for us to see it as a means to an end, or at least focus on the process? This leads me to #4...

4) What works for me might not work for you

This is always a tough one. It's tough to acknowledge, and it's difficult to understand. But bottom line -even if a medicine, supplement, or food regimen works beautifully for one person, it might not work for another. Even within our own family of four, we see different results, despite the same sensitivity. So instead of the treatment or accommodation itself, we try to focus on principles - whatever is being tried, give it time and attention. More specifically, focus on patience, awareness, and consistency, or PAC.

When you're patient, you allow the treatment to work its magic. Just as I mentioned above, sometimes it can take weeks before you see any results. Setting yourself up for the wait time is key.

I was super proud of my daughter, because as we were debating whether to start the topical mentioned above, she had calculated the seven to ten days of reaction time to coincide with her spring break. She was preparing to be patient, to allow the medicine to work, and had strategically factored in the time it would need. She would ride out the effects of the medication at home, during her break. Smart and patient!

Being aware is also key. When you're tuned in to the signals your body is sending, you can catch reactions, both positive and negative, fast. You can also assign blame easier - when you're watching for triggers and tuned into your symptoms, you don't miss what exacerbates them. Nor do you miss what makes them better.

For instance, I tried to ignore that stress at work was impacting my flares years ago. But after this one vacation abroad, I couldn't deny the connection. I remember boarding the plan to leave, hobbling and in pain, due to terrible joint pain and swelling. By the end of the third day of the trip, without a cell phone, without email, without any tether to work, my lupus symptoms had all but gone away. That was one piece of undeniable evidence, but here was the kicker. On the way home from vacation, I boarded the plane, feeling fantastic. I was sure the renewal would last. But by the time the plane touched down on the other end, after I had spent time outlining and planning for my return to the office the next day, all of my joint pain returned. It was like a flip switched in my body. I've never forgotten it all these years later.

Staying consistent is probably my favorite secret weapon when it comes to health and wellness. Whether you're testing a new medication or trying to avoid a food, if you're consistent, the results won't lie. Either you'll see benefits, or you won't. You won't be able to make excuses for the results you go or why the medicine isn't working. Consistency is the way to ensure a meaningful outcome. Even if the treatment isn't the answer, you can say that you gave it the necessary time and attention to work, and when it didn't, you can very confidently put it into that latter category.

Lupus and Gut Health: Food Sensitivity Patterns Part 1

noreply@blogger.com (Sara Gorman) — Mon, 30 Mar 2026 17:50:00 +0000

Since my family has turned our attention to food sensitivities, I've seen some patterns emerge. Some trends yield amazing results, others are just annoying - but all are providing a window into what makes our bodies function. If you're considering an elimination diet, or your doctor's recommended one, I'm here to vouch for them. Even if the results aren't what you want them to be, at least you'll start making sense of what's happening to your body and why.

Here are two of the patterns that we've seen play out:

1) After cutting out a food, like gluten, you may become more sensitive to it, rather than less.

This was kind of a bummer revelation for me. I think I'd assumed that if I eliminated a food from my diet for a significant period, over time, my body would no longer see it as a threat, and wouldn't react to it. This might have been based on my previous attempts to cut out foods or drinks - like decaf coffee, chocolate, gluten, or dairy. I'd give up a food, experience positive results while abstaining, and then after 6 weeks or so, if I had a cup of decaf or a scoop of ice cream, it wouldn't bother me. But gluten seems to be a different animal. For example, we were out of gluten free bread last week. Deirdre found alternative options - GF tortillas, rice, GF pitas - but I was stubborn. I didn't want to disrupt my routine of eating a piece of peanut butter toast every morning. So I went off script and used this delicious Italian loaf we get from Aldi. After three days, my skin was screaming at me to stop. Just one piece each day, and I had an internal revolt on my hands. (But then, as humans often do, I doubled down on gluten. I ate a few regular, gluten-filled waffles we baked to take to a friend's house, and then ate some gluten-rich cookies, and that's when my body said absolutely not, you need to eat gluten free.)

And, yes, while I pushed my gluten consumption beyond its limits, it was clear that just a few pieces of toast a couple days in a row were enough to set off my symptoms. Ugh.

I originally cut back on gluten as a sign of solidarity when my daughter was asked to go gluten free by her functional medicine doctor. I wasn't having any real side effects from gluten, but once we gave it up, my husband and I definitely felt better without it. Which leads me to my next point...

2) When you give up a food, you can see benefits almost immediately. Why can't you see the disadvantages while you're consuming it day after day?

Now, putting aside foods you are sensitive to, whenever I get a wild hair and decide to cut back on, say, sugar, the first to go is dessert. I just stop eating sweets, and almost overnight, I see benefits. Inflammation I didn't know I had goes down, my stomach gets flatter, my GI system runs better, and my skin gets less blotchy. But when I'm eating the dessert day after day, my body isn't calling out for help. It's not saying no thank you. It's not throwing up smoke signals. It doesn't really give me any indication that what I'm eating isn't a good idea (unless, like I said, there's a sensitivity.) It often takes weeks before I see the disadvantages of eating it. So here's my question - why doesn't our body send up bigger red flags?

Or are the red flags more like pink memos that are vying for our attention, but get lost in and among all the other signals our body is giving us? Or are we deliberately ignoring them? Questions for another post, for sure!

Patterns three and four revealed on the next blog!

Lupus and Medicaiton PRO TIP: Keep your pills where you can see them

noreply@blogger.com (Sara Gorman) — Fri, 27 Mar 2026 12:30:00 +0000

Out of Sight

Pills aren't pretty. Pill bottles, even uglier. That's why we tend to hide them in drawers or cabinets. But if you can't see it, you don't take it. This is why a pill organizer like the Pillfold works. It's easy on the eyes. It looks great on the counter, but stands out just enough so you remember to take your pills.

After 25 years of taking daily lupus medication, I can still forget my pills in the morning, if I don't see my pillfold on the bedside table. And by that afternoon, I can't be 100% sure that I even took my pills earlier in the day. Was that today? Or yesterday? It becomes so routine, I confuse one day with another.

The only way to know is to consult the pillfold.

Either the pills are still there, or they're gone. Question answered!

Lupus and Gut Health: The slow (but effective) process of Functional Medicine

noreply@blogger.com (Sara Gorman) — Thu, 26 Mar 2026 14:53:00 +0000

Searching for answers.

It's something I haven't had to do for myself in a long time.

I think the last time was when my hair was falling out, and I was researching reasons for my hair loss. It seems kind of funny now - because OF COURSE the cause was systemic lupus - but back then, I was just sure I was going to find a different way to approach it and be able to reverse it.

As an aside, I recently found one of my baby hair clips that I used once I'd lost a good portion of my hair, but hadn't cut it off yet. I still had literal strands to pull back, and the baby clips were perfect. Here's the post I wrote about them, but here's a pic from that old post. Man, were those clips small!

To think that the big ones in the picture used to barely hold my hair because I had so much, and then because I'd lost so much, one little baby clip could hold the remaining strands. Huh. That's significant hair loss.

However, focusing on improvement, I haven't lost my hair for almost 10 years. Now, it just keeps growing and thickening...and greying. I'm not grey YET...but the white, wiry strands are hiding everywhere! My current head of hair is proof that systemic lupus CAN improve and symptoms CAN subside. Never give up hope. (Note that discoid lupus can have different results, and never hesitate to consult a dermatologist about your hair loss. That was one of the best moves I made in my journey with lupus. It made all the difference to talk to a derm about my hair loss, rather than just a rheumatologist.)

Returning to the trying experience of "searching for answers", I think what I was really searching for back then were answers to what would help my hair loss and what hindered it.

And that's what I find we've been doing with my sweet Deirdre for the last two years. Searching for things that will help her symptoms and avoiding the things that hurt them.

Two years of searching is a long time.

Two years of food sensitivity tests, dietary changes, and lifestyle adjustments.

Two years of new supplements, different vitamins, and an ever-changing pill regimen.

Two years of blood work, lab tests, and GI lab kits.

Two years of specialty pharmacies, specialty supermarkets, and increased grocery bills.

Two years of tracking and tracing and trying.

Two years of doctor's appointments, skin treatments, and body treatments.

And still, we're not there yet.

I was diagnosed with lupus within 6 weeks of my symptoms. My sweet, wonderful, beautiful daughter continues to wake up every morning, put on a brave face, and searches yet another day for answers. And it makes me sad.

Has there been progress? Absolutely! We feel very much heard and taken care of by our functional medicine doctor. And there have been MAJOR strides made in many areas. Migraines have completely subsided, appetite-suppressing nausea and acid reflux are gone, energy is up, mood has improved, and the benefits of Deirdre's dietary changes surface daily. She is way more functional than she was when we began two years ago.

But it takes time to reverse the body from the inside out. It takes time to heal the gut, reduce inflammation, and fire up the body's detoxification system.

I'm so proud of my daughter for continuing on this journey and not giving up hope. She is proving what a strong character she has by facing these health challenges head on.

She's not running away. She's continuing to search for answers. She is on her health journey.

I heard a rendition of the song, "The Middle", on XM yesterday, and it reminded me of her:

"It just takes some time

Little girl, you're in the middle of the ride

Everything, everything'll be just fine

Everything, everything'll be alright, alright"

To those of you in the middle of the journey or searching for answers, we see you. 💗

Lupus and Medication PRO TIP: SAY NO TO SELF MEDICATION

noreply@blogger.com (Sara Gorman) — Wed, 25 Mar 2026 12:00:00 +0000

Skip or Double Up

Yup. We're talking self-medication here, and we're firmly Team "Don't Do It." Taking what you want when you want is the WORST advice, and yet you find it all over on the internet - patient "experts" saying why your doctor has it all wrong and influencers who tell you what to do instead.

TRY THIS:

Follow your doctor's order. Take notes on what works and what doesn't. Circle back and share your findings with your doctor so together you can put a medication regimen in place that works for you and keeps you symptom-free.

Want to read more about the dangers of self-medicating? Check out these posts here. A woman in our lupus support group used to change up her medication on her own, and she paid for it. Unfortunately, I learned from her mistakes, and witnessed the dangers of toying with doctor's orders. It's not worth it!

Lupus and Medication: Slowly weaning off Cellcept

noreply@blogger.com (Sara Gorman) — Tue, 24 Mar 2026 17:00:00 +0000

Happy Spring! It's been awhile, but here I am, attempting to return to my roots as a health blogger. Welcome to those who are just joining!

After 25 years of living with lupus, my health is good. I have less pain and more energy than ever. I still get tired every afternoon, but where a two hour nap was a must a couple of years back, now, I'm able to rest for just 45 min and feel good as new. A lot depends on getting eight to nine hours of sleep at night, which I continue to work toward. With two teenagers in the house, our nights run late and our mornings start early. So those eight to nine hours sometime come in the form of seven hours at night, plus an hour to two right after they leave for school. I can still get my day started before 9a, which works for me!

(And to those of you who have been here from the beginning - YES - Deirdre is 17 and Bernie is 15. Can you believe it??!! Here are the links to the posts I did when they were each born - Deirdre and Bernadette. Makes me tear up just thinking about it!)

By most accounts, I am healthier, more stable and stronger than I was back then. I can't believe how far I've come. In fact, I just recently reduced one of my main lupus drugs, Cellcept, to one pill every other day. Hooray! That is a HUGE accomplishment, as I've taken this medication every day since 2004, with a short break for each of the pregnancies. I've also swapped a few other prescriptions for vitamins or supplements, which feels fantastic. Iron, B12, and Vitamin D have become staples. I also try to fit in 4-5 days of pilates-like workouts a week, walk the dog daily, and watch my gluten and dairy. I continue to be symptom-free (aside from that mild fatigue in the afternoon) and hope every evening that my good health continues. It was not without effort, I assure you, but it was possible. Now I have a whole library of posts to account for the journey!

My latest medication change involves Cozaar, which I take for lupus nephritis to reduce proteinuria (protein in the urine) and to prevent further disease progression and damage. My doctor is reducing my dosage by half. She's thinking it may be contributing to my fatigue - perhaps because my blood pressure already runs low? I start the lower dose this week, and will now have to report back to her with periodic blood pressure results. When she told me that, I sighed. Turns out I have to report back, not two or three times a month, but two or three times a week! Just one more thing to add to the list. But if it's one step closer to weaning off the medication, let's do this.

While I am extremely thankful for my present wellness, our household's focus has migrated to my oldest daughter, who is still searching for answers on several health fronts. I shared that we started working with a functional medicine doctor awhile back, and thank goodness! We have come so far since we first showed up on her doorstep. But we are still looking to complete the whole picture. Over the next few weeks, I'd like to share more about the answers we're still searching for. I bet this community will have a lot to contribute!

Until next time...

Lupus and Cellcept: Slowly Tapering My Way Down

noreply@blogger.com (Sara Gorman) — Fri, 19 Sep 2025 12:00:00 +0000

Gosh - I've been delinquent in celebrating my medication victories over here!

Every step you make toward living well with lupus is worth rejoicing over - big or small. Even the ones where you are the only one to notice the impact.

I've celebrated baby hairs sprouting on my head after hair loss, rejoiced over swelling that's gone down just enough so that my wedding ring spins around again, and cried happy tears over favorable test results, improved labs, and insurance wins.

They're all worth noting.

Some victories give us the physical boost we need. Others, a financial victory that our pocketbook needs. Still others provide an emotional lift to our psyche that allows us to keep heading in a positive and constructive direction.

My latest victory - reducing Cellcept to one 500 mg pill every other day - feels like it's all three!

I've been on CellCept for almost 20 years. I've been as high as 3000mg a day, and as low as 1000mg a day, but never off of it completely.

With my doctor's blessing/coaxing, I started a slow taper off Cellcept in 2024. You can read about my hesitation, but ultimate willingness here.

We've reduced the dosage incrementally - starting with 1000mg one day/500 mg the next - and worked our way down from there. Every appointment, every reduction - neither of us assumes too much, or expects anything. We simply reassess and decide if we're going to keep going, pause, or return to a higher dose. It all just depends on how my body responds. I'm comfortable doing it this way, and I like having the security of knowing that no move is a forever decision. She's not set on having me off CellCept completely, and neither am I, but we both know how we plan to keep proceeding.

I like the lack of agenda, yet the structure of a plan, if you know what I mean. I love my doctor for her sensitive bedside manner, but also her willingness to nudge me when I need it.

Emotionally, I love the idea of being less dependent on medication. Financially, the prescription cost is less. And physically, I am a little less tired during the day. I'm fairly certain it's due to extra sleep in the morning and a daily B12 supplement, but my doctor did wonder if reducing Cellcept would give me more energy. She couldn't really explain why, she just thought it was a possibility. Medical mysteries that result in positive outcomes, we accept!

So there it is. I'm down to one Cellcept every other day.

It seems like a minor miracle when you think of how sick I've been, and how much the Cellcept has helped in the past.

Doing victory laps over here. Any minor miracles or baby steps you want to celebrate?

Lupus and Recovery: Making Days of Rest Count

noreply@blogger.com (Sara Gorman) — Thu, 18 Sep 2025 16:55:00 +0000

I play tennis.

Well, actually, I'm learning to play tennis.

I play about 5 days a week, mostly with my husband. He's much better than me, but seems to enjoy a good rally with his wife of 25 years...when I can keep one going.

I couldn't even return a ball when I started a few months ago. But I just kept wanting to get better. I've surprised myself how much I like this new sport, shocked by how much fun I have, despite being a novice. (Unless you count the one day of 4th grade summer camp when Brendan C. got hit in the head with a racquet and was rushed to the hospital. There was a lot of blood that day - not a lot of tennis playing. I don't think I went back.)

Now, I really do love the game. I love chasing down balls. I love the thrill of a perfect hit. I love watching my husband run to return a ball that I didn't really mean to hit cross court, but managed to to do so anyway.

Since I've been playing, though, I've let other things slide. Like blogging. And working. And baking.

No, strike that. Baking, I've done. I've been playing tennis and baking cookies.

But four days ago. I injured my arm. Technically, I did it playing tennis. The full story is slightly more complicated and perhaps worthy of another blog post, but the day I injured it, we had to end the match immediately. I wanted to just shake it off and keep going. But Johnny refused, saying something like when one cries out in pain and doubles over, you don't keep playing. Or some nonsense like that.

It's my right arm. My forehand. My serving arm. My secret weapon. (I can't even write that without laughing. If you saw me play tennis, you'd laugh, too.)

But for the last three days, I haven't been able to play. The first two days off, it rained. Poured, actually. I felt like the precipitation was sent to make sure I took the days off. The third day, today, Johnny has an all day golf tournament. I asked if he wanted to play later...he said I should take it as a sign that I need another day of rest.

He's right. My arm still hurts. I should keep resting it.

So I'm getting other stuff done. Like writing this blog post. And ordering new fabrics for pillfolds. And tidying up around the house.

I think we could all use three built-in days of rest - not only to listen to what our body really needs, but also to tend to those things that maybe aren't getting our full attention.

I was not very good at listening to what my body needed when I was first diagnosed with lupus. In fact, I thought I was supposed to ignore what it was telling me. That's how I thought you got through the worst of a chronic illness.

But it's not true. At least not for me. Rest is paramount. Listening to my body is essential. Finding other ways to feel productive is key.

So look at me. Being productive. Resting my arm. Not rushing the process.

Maybe I'll bake a batch of cookies next.

Lupus and Diet: Seeing the Results of a Sugar-Free Diet.

noreply@blogger.com (Sara Gorman) — Tue, 11 Mar 2025 18:28:00 +0000

Four days.

That's how long it takes for me to start seeing the benefits of a mostly dessert-free diet.

The first symptom to go? Persistent redness on my cheeks and nose. It's a glorious thing to wake up one morning, walk into the bathroom, and not see red. Like, it's startling how fair my complexion can be, when I pass on dessert for a few days.

The next thing I notice? I sleep through the night. I don't have many complaints about staying asleep. But when I'm high on a dessert-filled diet, I usually wake up around 4am, and toss and turn until my alarm goes off at 6a. But when I wake up for the first time just moments before my alarm, I know my dessert-less days are paying off.

Another benefit I see after a few more days? A reduction in inflammation. Ah, how beautiful to be able to visibly see those muscles I work so hard to tone and tighten. It's hard for them to shine through when dessert is part of the equation. But it's not only my muscles that benefit - my joints, too. Everything is less puffy. My rings and watch fit better. My jeans are looser, even though the scale (if I were to ever jump on one) hasn't changed. In some ways, I wish it weren't as simple a fix as cutting out dessert (because I LOVE dessert), but I know a simple fix to one's health is always better than a complicated one.

The last thing that happens, about ten days into a dessert-free diet, is that my stomach bloat goes away. Like, completely. I still have a middle-aged, birthed two kids, moderate exerciser body, but the lower tummy bloat just vanishes. It's so cool. And after a good two to three weeks, if I have dessert one night - the impromptu ice cream with the kids, a couple of cookies from a small batch I've made - the symptoms don't come back. It's like my body's reached a new level of understanding: There's no threat. Don't freak. It's a one-off.

Of course, other factors can affect any or all of the above: hormones, sun, heat, stress, dairy - among many other culprits. But I love the positive impact I can have on my body by abstaining from sweets.

I want it noted, of course, that those first four days - before I see these results - can be harrowing.

The first day is the hardest. I literally want nothing but sweets. I see them everywhere. And they all look scrumptious. Even dessert that doesn't normally appeal to me is enticing.

The second day is better, but not yet easy. It's like I know there are sweets lurking in places, and while I'm not craving them, I could still go for a cookie. In fact, on day two, I often find myself taking out a stick of butter to soften on the counter, convincing myself that a good deed is in order, that someone, somewhere is in need of a batch of cookies. But I hold myself off - usually by making a cup of tea - and return the softened butter to the fridge before the end of the day.

Day three is really the turning point. The longer I go without that taste of sugar, the less I want it. And then the benefits starting appearing on day four, and the motivation to keep up the dessert-less diet becomes apparent.

If I remember correctly, that's about how long it used to be for me to recover from overdoing it with lupus. I'd be fine - feeling decent and letting the medicine and a healthy lifestyle work their magic. But then something would happen - a late night, a stressful day, an afternoon in the sun, or a skipped nap combined with a poor diet - and I'd find myself in a mini flare: swollen fingers, increased fatigue, hair loss, achy joints. It would usually take four to five days of very careful living before I could reverse the flare's trajectory. And then it would be another few days to a week before I was back to my baseline. My lupus friends and I used to joke that if we scheduled a weekend trip, a night out, or a packed day, we might as well book a flare (and its required downtime) into the following week's schedule. After a while, you get pretty good at knowing what's going to set you off.

Ideally, you get even better at avoiding those things in the first place. Especially when you can.

Today, I know exactly what sets off red skin, 4am wake ups, and tummy bloat. I choose to avoid the culprits because I want to. But mostly because I can.

Who's with me?

Luus and Sleep: Focus on Increasing Restoration

noreply@blogger.com (Sara Gorman) — Tue, 17 Dec 2024 20:00:00 +0000

Any of you listen to or read Dr. Lisa Damour - parenting expert and teen psychologist extraordinaire? I loved two of her best selling books, Untangled and Under Pressure, recommended to me by my sister-in-law. Or did I recommend them to her? Now I can't remember!!

I also listen to Dr. Lisa's podcast "Ask Lisa" periodically. I always walk away with some tibit of useful information, no matter what subject she's covering. Usually the valuable nuggets are about parenting, but these little tips fit right in line with my journey with Lupus.

I talk a lot about sleep on this blog. Primarily because daily fatigue is something I've dealt with every day since I was diagnosed with lupus 24 years ago. It's the one symptom that has persisted, despite all the others that plagued my life for so long - the joint pain, joint swelling, rashes, hair loss, kidney and lung complications -subsiding over time.

Not fatigue. It continues, even to this day.

For now, my fatigue is managed with one or two short naps every day. The naps are relatively easy to fit in, being self-employed, and because they're not too long, as long as I don't get too uptight about my productivity from one day to the next, all goes smoothly. But the naps are non-negotiable. I have to take at least one, but usually two, every single day.

(Note: I am trying to increase my sleep at night by an hour to see if I can eliminate the short early nap. I will keep you posted!)

But whether we're talking about napping during the day, or getting extra hours of sleep at night, here's what Dr. Lisa has to say about sleep:

First, she says we need to prioritize sleep.

(Yes! I agree!)

Second, we can't feel guilty about the need for extra sleep, even if it appears to take away from our productivity at home or at work. Hint: it really doesn't.

(To all that, I say, yes, again!)

Third, instead of trying to reduce stress, we should focus on increasing restoration. (Yes, yes, yes!))

You can listen to the podcast where she talks about all of this here. It's titled, "Finding Balance in the New Year". It's actually from last year, but it definitely still applies!

If you want to read how my relationship with my nap(s) has evolved over the years, click here and here.

It's not always been easy, but today, I'm at peace with my need to restore and renew!

Lupus and Food: Cranberry and Pistachio Biscotti

noreply@blogger.com (Sara Gorman) — Tue, 17 Dec 2024 14:00:00 +0000

Time for the next recipe!

Here you'll find a recipe for Cranberry and Pistachio Biscotti. What better holiday treat than sweet biscuit cookies dotted with red and green!

I've been making biscotti since I was a kid. I was fascinated with anise flavoring and anise seeds, and took every opportunity to incorporate them into recipes - whether they belonged there or not! My college semester in France got me closer to biscotti perfection, as one of my flat mates introduced me to a great almond biscotti recipe that she had been making with her family for years.

Fast forward to the early days of my marriage, and my husband became my official biscotti taste tester. Some recipes were decent; others, not so much. There's no place to hide with bad biscotti. Either it's perfectly light and crisp with a touch of sweetness, or they're hard, tasteless rocks that are frankly inedible.

But not this recipe! My husband tasted my first batch, and immediately said, "Oh, these are actually good." A subtle snub to previous attempts, yes, but a glowing review of my current offering.

Sadly, neither of my daughters can eat these cookies - the flour and the pistachios rule out the GF diet and the tree nut allergy, respectively. When this recipe found its way into my news feed, my intention was to use it merely as inspiration to find a biscotti recipe using coconut flour and zero nuts. But I just couldn't help myself. We were heading to visit a friend who is a coffee drinker, and I thought these would be perfect as a small gift. They looked so cute packaged!

I did make a few, ahem, changes to this recipe. First the nuts - I put an open bag of shelled pistachios on the counter, along with a bag of craisins, just as a reminder to whip up the recipe later in the day. I definitely helped myself to a handful of pistachios a couple times throughout the day, but so did my husband. Before I knew it, the empty bag of pistachios indicated I needed to switch gears. So I used sliced almonds which I also had on hand, and they were fantastic!

I also used coconut oil in place of the olive oil the recipe called for. Remember, I intended to use coconut flour to make them GF, and thought the coconut oil would really enhance the coconut flavor. But then I changed my mind, and decided to use regular flour, but the coconut oil was already melted. 🤦‍♀️)

I also subbed in craisins for cranberries.

Recipe is below. I will write it as I made it, swapping the nuts, oil, and craisins.

Original recipe courtesy of All Recipes, which you can find here. Enjoy!

Delicious Cranberry and Nut Biscotti

¾ cup white sugar

¼ cup coconut oil, melted and cooled

2 teaspoons vanilla extract

2 large eggs

1 ¾ cups all-purpose flour

1 teaspoon baking powder

¼ teaspoon salt

1 ½ cups sliced almonds (to get the flecks of green advertised above, substitute pistachio nuts)

½ cup craisins

½ cup mini chocolate chips

Preheat the oven to 300 degrees F (150 degrees C). Line a cookie sheet with parchment paper or aluminum foil.

Using a large wooden spoon, mix sugar and melted oil together in a large bowl until well blended. Mix in vanilla extract, then beat in eggs with a fork. Mix in flour, baking powder, and salt until combined. Fold in nuts, craisins, and mini chips.

Divide dough in half. Form each piece into a 12x2-inch log on the prepared cookie sheet. Dough may be sticky; wet hands with cool water to handle dough more easily.

Bake in the preheated oven until logs are light brown, about 25 minutes. Remove from the oven.

Reduce oven temperature to 275 degrees F (135 degrees C).

Cut logs on the diagonal into 3/4-inch-thick slices. Lay cookies cut-side down on the cookie sheet, as shown in picture below.

Bake cookies until dry, no more than 5 minutes on each side.

Cool and enjoy!

Another tip that I just read, (because you know if you search "biscotti recipe" even once, Google will send you biscotti tidbits for weeks):

This is from a King Arthur Baking article titled, "Biscotti, the Most Unassuming Holiday Cookie, may also be the Best".

Happy baking!

Lupus and Doctors: Mammograms and Biopsies and Ultrasounds, Oh my!

noreply@blogger.com (Sara Gorman) — Wed, 11 Dec 2024 22:00:00 +0000

It's time to update you on those multiple appointments I had a couple of months back - all of which stemmed from my one annual gynecologist appointment.

Yup - I'm still harping on the "one doctor appointment that turns into three" phenomenon.

I'm experiencing it now myself, but I remember it happening when I was caring for my dear, sweet mom, as well, which you can read about here. I just knew each doctor's visit would yield at least two more appointments - a follow up, a referral, an order for labs or imaging, or all of the above.

While all of these appointments are important - they're exhausting. And time consuming. And sometimes worrisome.

I wasn't too worried after my annual gynecologist appointment. I've had mammograms for years now, many of which showed something irregular, which needed an immediate follow up mammogram.

Which was the case again this year.

But that follow up mammogram resulted in the need for further exploration in the way of a biopsy.

Okaaaaay.

It's not my first biopsy (first one was on a suspicious lymph node years ago that seems to come and go with lupus activity) - but still, not the best news. I prefer the "let's watch and repeat imaging in six months" plan, but that wasn't the way forward this time.

So I had my first breast biopsy.

And it came back with what I believe they call pre-cancer cancer. It's not cancer. But it's not nothing. There are abnormalities that are concerning, and we need to address them.

Based on the results of that biopsy, my doctors wanted to biopsy two more sites that exhibited the same patterns. I knew this was a possibility, so it wasn't shocking. But it meant more appointments - which I suppose was just fodder for this post right here!

I've since had the other two sites biopsied, and had a follow-up ultrasound with my breast surgeon whom I began seeing years ago when my mammos first started showing irregularities.

We've decided to excise one small section to remove additional cells from two of the biopsied sites. From there, we'll determine next steps, if any.

It's an outpatient procedure, requires no reconstructive surgery, and the surgeon claims that it will have fewer complications than my biopsies - one of which was not fun at all.

That said, I debated on sharing, as this isn't lupus related, and I figured I would wait until things developed further. But two things happened - one, I decided to write a post about one appointment morphing into three, and this was a perfect example. And two, a friend asked me for help with a carpool because she was a having a follow up mammogram with the possibility of the need for a biopsy. My exact predicament! We've since compared notes - each us having undergone our first breast biopsy - and I thought others might want to share, too.

So the floor is open. Email or comment, if you like!

Lupus and Skin: Learning not to Overdo begins with Light Exfoliation

noreply@blogger.com (Sara Gorman) — Wed, 11 Dec 2024 17:00:00 +0000

Raise your hand if you know what the consequences of over-exfoliating are?

Yeah. Well, now I know, too.

Before I explain, let me just say that I thought I was doing the right thing.

I was experiencing a stubborn acne flare (yes! At my age!) that can likely be attributed to hormonal changes. After about a week, it just wouldn't subside. So I asked my daughters (skin experts via YouTube) what they would do, and they suggested lightly exfoliating once a week.

I tried it once, and loved it. It instantly smoothed my skin, gave it a lovely glow (that I now know means I scrubbed too hard), and the acne seemed to go away overnight. Plus the exfoliating scrub I used has a menthol cooling element which felt a-maz-ing on my face.

It was awesome.

I waited a few days, and the acne came back.

So I used the scrub again.

Same lovely results as the first time.

So I used it the next night. And the next night, and the next.

Before too long, my glowing, smooth skin with a soft pink hue morphed into dry, flaky skin that had turned red and blotchy. It took on a rough texture, and the acne was back - maybe even worse than before. Argh.

When I was researching the results I was getting, I read this snippet of an article featuring the opinions of two dermatologists:

“Over-exfoliating is very common. If some is good, then more must be better, right? No!” says Dr. Gmyrek. In fact, too much exfoliating can strip the skin of its natural oils and lead to excessive dryness, which can — ironically — trigger the overproduction of oil and lead to breakouts, she notes. “Over-exfoliating damages the skin barrier, which helps keep the skin balanced, nourished and protected from environmental factors,” agrees Dr. Yadav."

But exfoliating feels sooooo good while you're doing it!!!! 😭😭😭😭

After reading enough articles to know that I had simply overdone it on the exfoliation, I set out to heal my temporarily damaged skin, which ironically takes much longer than it does to over exfoliate in the first place!

This is such a typical life lesson for me, as I tend to overdo.

I did it during my early days with Lupus, and there were definite consequences back then, too:

Fatigue, aching joints, brain fog, hair loss, pleural chest pain, swollen nodes on my elbows and feet, all symptoms that happened within mere hours of doing too much.

In fact, we used to say a single swollen joint, what my husband, sister and I used to call "a piggy" was the telltale sign that I was doing too much. The other symptoms mentioned almost always followed, unless I heeded the "piggy" warning and slowed down, rested more, and stressed less.

So here's your daily reminder not to overdo.

Your skin, body, and mind will thank you.

If you need more motivation to scale back and ease off the pedal, there's a whole library of previous posts under the search term "overdo" that you can read here.

See? I told you. This is not my first rodeo!

P.S. I made the same exfoliating mistake years ago and wrote about the baby steps I took to fix it here. If you're down on yourself for continuing to make the same missteps over and over again, don't despair. We all do it. Let's hope I can lick this misstep in two blog posts or less!

Lupus and Doctors: Asking Questions to Get the Answers you need

noreply@blogger.com (Sara Gorman) — Mon, 09 Dec 2024 22:23:00 +0000

I have an appointment with my rheumatologist coming up.

So, as I often do, I started making a list of the questions I have for her. It helps me get in "appointment-mode" by thinking about anything health related that's transpired since the last time I saw her. It also ensures that I fit in everything I want to in the short time I have.

One of my first questions was about hormonal imbalance. And yes, we are at that stage in my life where I'm talking hormonal imbalances. (You should have seen it coming with my mention of being of age for a colonoscopy!)

When I was thinking about how to pose the question. I planned to launch into a story about my daughter's softball tournament one weekend about two months ago. The event wasn't meant to be an all day affair. But it went from a 3 hour commitment to an eight hour commitment, which resulted in a skipped nap, fatigue, stress because of the fatigue, and a day of irregular meals and poor food choices. (Think chocolate cookies for breakfast and waffle fries for lunch. It went downhill from there!)

From that day forward until now, I have been experiencing new symptoms weekly that all point to a hormonal imbalance consistent with perimenopause.

And I'm wondering if a hormonal imbalance can be triggered like that. Can it happen overnight? Where one day I feel fine, and the next, my body starts rebelling?

But I realized, as captivating and enthralling as my story is (wink, wink), I should probably just lead with the question:

Can a hormonal imbalance be triggered?

From there, I can cite examples, if need be. But probably best to begin with a simple and straightforward question.

Don't get me wrong. I LOVE using examples to illustrate a point, or more specifically, to explain how severe or disruptive my symptoms are. My first rheumatologist (who I saw for over 20 years) learned quickly that I gauged my joint pain on whether or not I could use my cell phone or buckle a seat belt, and my chest pain by how difficult it was to walk up the stairs to my bedroom. And when I was caring for my dad, I remember citing examples for the oncologist to make sure we were on the same page with how severe my dad's confusion was following his resection. (Turns out the doctor had not understood fully, and he immediately made a medication change because of it. Read about how citing specific examples really helped here.)

So while examples do help, I think getting right to the point, without providing a backstory this time, will have its benefits. It'll give the doctor the chance to answer the question, without having to wade through the details of what I think could be contributing to the issue.

I'll keep you posted on the imbalance. But I'll tell you this - getting old is, well, getting old!

Lupus and Food: Coconut Flour Peanut Butter Cookies. Recipe inside! GF DF

noreply@blogger.com (Sara Gorman) — Fri, 22 Nov 2024 17:25:00 +0000

I'm thinking of starting a blog series called Monday Munchies. Or maybe Tuesday Treats. Or perhaps Wednesday Delights. Since I'm scouring the internet for good gluten free/dairy free recipes to accommodate my oldest daughter, I might as well share the winners that I come across here.

They won't just be GF and DF, mind you. Only 25% of the Gorman household is truly gluten free and dairy free, although another 25% of us (me!) could probably benefit from being GF, too.

As our household has refined our meal offerings to semi-accommodate the GF DF diet, my youngest daughter and I have both experienced the GI benefits from skimping on or skipping dairy altogether. Funny what becomes apparent when you start to pay attention!

Most of this focus on nutrition stems from working with a Functional Medicine doctor, which you can read about here. (I'll warn you. We are BIG fans.)

Whatever I name the blog series, I'm gonna kick things off with this one - Coconut Flour Peanut Butter Cookies. It's one of our favorites. We made them three times so far, and each time we've increased the batch size. They're THAT good! (And everyone's always blown away that they're DF/GF.

Credit goes to Arman Liew over at The Big Man's World for the original recipe, to which I've made some changes. Hope you make a batch this weekend!

Coconut Flour Peanut Butter Cookies (with Despite Lupus tweaks)

1/2 cup granulated sugar

1 egg

2 Tablespoons coconut flour*

1 cup peanut butter

1/2 teaspoon baking soda

1/2 teaspoon vanilla

1/2 cup dairy free chocolate chips**

Preheat oven to 350. Mix first 6 ingredients together with wooden spoon until well- blended. Mix in chocolate chips. Use cookie scoop to drop onto foil or parchment lined cookie sheet. Use fork to press cross lines into cookie balls for that traditional peanut butter cookie appearance!

Bake 10-12 minutes until set. Let cool 5 minutes. Makes 12-15 cookies. Enjoy!!

And yes, before you ask, the measurements are correct. Just 2 Tbs of coconut flour (it's known as a very adsorbent flour!), and a full cup of peanut butter.

*Many thanks to my cousin-in-law Caitlin Pio for suggesting we try Coconut Flour instead of the grainy GF flour or heavy Almond flour we were using. We also have a tree nut allergy in the house (epi pens are stashed everywhere), so finding a good alternative to anything almond has been a game changer!!

Available at Safeway

**We are LOVING Trader Joe's DF GF semi sweet chocolate chips. At just $3.49-$3.99 a bag, they taste delicious and don't break the bank!

Available at Trader Joe's

Will update this post with cookie photos the next time I make these. Making a batch of these yourself? Send us your photos and we'll post!!

And leave your favorite DF/GF recipes in the comments. When I post a non-DF/GF recipes, those recipes are welcome, too!!

Lupus and Support: the benefits of Sharing with others

noreply@blogger.com (Sara Gorman) — Fri, 25 Oct 2024 14:25:00 +0000

Let's talk colonoscopies.

Or rather, let's talk about the power of conversation.

As I mentioned in my last post, I'm old enough now that, at my most recent gynecologist appointment, my doctor wrote an order for me to get a colonoscopy.

Blah.

I've had an endoscopy for lupus before, which was unpleasant enough. But I know a colonoscopy is on a whole other level, one which I was really not looking forward to.

Which is why I mentioned it to my friends a few days later over coffee. We're all about the same age - colonoscopy eligible, if you will - so I thought we could commiserate together.

And one of my friends mentioned Cologuard. I'd never heard of it, but she explained it was an at-home colon screening test. To quote the website, it's a "non-invasive stool DNA test that screens for colon and rectal cancer and precancerous polyps." She said she and her husband had been doing them for several years as an alternative to the traditional colonoscopy.

Okay then. Sign me up. Any option that avoids that nasty prep/laxative potion and the procedure itself sounds good to me.

So I called my gynecologist's office to request an order for Cologuard. And they had no idea what I was talking about. Really?! No one there has knowledge of Cologuard? And you're handing out orders for colonoscopies?? They recommended I call my primary care physician if I wanted to look into it further, but the directive from their office was still to get the colonoscopy.

I DID want to look into it further. But I currently don't have a primary care physician that I see regularly. Between my team of specialists, I'm pretty well taken care of. So I planned to ask my rheumatologist at my next appointment scheduled about six weeks out.

But guess what happened first?

I got an email from my insurance company that said, at no cost to me, they would be sending both my husband and me colon cancer screening kits from Cologuard. I just had to accept or decline the offer. What!? Really?!

It was too good to be true. I accepted, and sure enough, a few weeks later, free of charge, two at-home kits arrived in the mail. They are simple, easy to use, and require zero prep. I understand there may come a time when the traditional procedure may be necessary. But until then, I'll take the free, simple, at-home option!

I'm so glad I opened up to my friends about my medical woes. I would have definitely disregarded the insurance email, or at the very least, called my doctor's office about it, and been dismissed. I would have made a costly and time consuming appointment for a colonoscopy, and put myself through the inconvenient and uncomfortable process of the prep and procedure of the test.

Given that I've been writing this blog for almost 20 years, I'm not particularly shy about sharing my medical trials and tribulations. But I figured out very early on in my diagnosis how beneficial it can be to talk to others about lupus. Attending support groups and talking with others not only allows them to shoulder some of the burden, it allows us to learn from the conversations we have.

In this case, Conversation, one. Colonoscopy, zero!

Lupus and Doctors: When one appointment equals four more!

noreply@blogger.com (Sara Gorman) — Tue, 22 Oct 2024 13:30:00 +0000

Anyone out there have a strategy for making annual doctor appointments? You know the ones - the once-a-year gynecologist, dentist, dermatologist, etc. appointments that sneak up on you year after year? You blink, and it's time to schedule another one. And before you know it, you're three (make that six) months overdue, and the doctor is booking another three months out.

I've heard of people scheduling appointments for the same day each year, like on their birthday, so they always know that they're scheduled. Or they make a point to call the first business day of the new year to book them all. I'll try anything - suggestions are welcome!

I don't think I struggled to remember the "annuals" until the pandemic. I think we all fell out of habits and routines during that time! But I was also overwhelmed with scheduling pressing medical needs for my parents that I let my maintenance appointments fall by the wayside.

But now I'm back in the habit, and I remember another reason why I may have unintentionally overlooked the annuals- because every appointment seems to yield three more!

I finally found time for my annual gynecologist appointment recently. I walked in, excited to mark this big annual off my list. But I failed to remember that I'd be assigned homework - in the form of booking a follow-up mammogram appointment. Right. Forgot about that one. Okay, that's one.

But I'd also forgotten that due to my complex tissue, I always have to book a second mammogram with a specialist three months after the first mammogram. That's two.

But this year, due to my age, my doctor ordered a colonoscopy. A colonoscopy!! How am I old enough to be talking colonoscopies??!! I was just helping my parents weigh the pros and cons of their colonoscopies not too long ago - and they were old!

When I started this blog years ago, discussing the details of life in my mid-twenties - I definitely did not see talk of colonoscopies in my future.

But here we are.

And here I go, off to three more appointments.

Update: I had the mammogram, and the plan to get a colonoscopy took a surprising turn. Will share all in an upcoming post!

Lupus and Lifestyle: Dealing with your Weak Spots

noreply@blogger.com (Sara Gorman) — Mon, 30 Sep 2024 22:49:00 +0000

The votes are in, and my greatest dessert weakness has been identified - good, old fashioned Magic Cookie Bars. Also known as 7 Layer Bars. Also known as Little Bites of Heaven.

That's right. Turns out, I can't resist them. Not even a little bit.

I now know this penchant for MCBs goes back to my childhood. But I didn't remember that until I made a batch recently, and my family and I devoured three quarters of them instantly.

Maybe it's because it was the first dessert my mom taught me to make.💓

Maybe it's the addictive combination of chocolate, coconut and sweetened condensed milk.

Or maybe it's just because they're so, so good.

I've always prided myself on my will power. It's just something that I'm good at exercising. But there's always a weak link. Count MCBs as a one of those links.

Even when I think back to my flare-filled days with lupus, I can definitely pick out my #1 weakness for dealing with active disease. It revealed itself at work and at home, with the kids or when out with friends, on weekends and on vacation. My weakness?

Overdoing it.

Every time.

My tendency to overdo manifested the most when my combination of meds would fully kick in, and I'd have a few pain-free, fatigue-free hours or days. I'd go bananas - trying to fit everything in that I'd missed out on when my joints were aching and swollen, and fatigue was at its worst.

Over time, I learned that managing this single weakness was the key to rebuilding a healthy life with lupus in tow.

I started scaling back. I created boundaries. I started each day anew - regardless of how I'd slipped up the day before - recommitting to putting my health first, and my agenda second.

But a mindset transformation doesn't happen overnight.

I remember the first day back to the office after being hospitalized and out of work for almost 3 weeks. My boss and I agreed that I should come in for only 4-6 hours instead of my normal 8-10 hours. He and I both agreed I needed to ease back into it. Allow my body to ramp up. Avoid setting off another debilitating flare.

My hours that first day? 8a to 8p. I literally couldn't make myself leave. My willpower was useless over my drive and determination to perform, catch up, and prove myself.

Having failed miserably the first day, my second day back, I started at 10a, with plans to leave at 4p. I stayed until after 8p again.

I'm sure adrenaline was involved. And excitement. And prednisone.

But I learned very quickly that I had to create boundaries for myself that would prevent me from overdoing it.

So on day three, I started my day at 2pm...and left a reasonable time later.

As I caught up with work, and started listening to my body, I realized I was most effective when I was rested. And healthy. And asymptomatic.

The boundaries worked.

So did starting each day with the intention to live better than the day before.

Journaling helped, too. I could keep myself accountable, and learn from my missteps.

The single most effective method to practicing restraint and staying healthy was to experience success. If I tried some version of scaling back, and it worked, I'd feel better. I'd be clear-headed enough to objectively identify what I'd done well. Then I'd replicate what was working. And I'd see a pattern of success emerge.

When you're flaring, it is sooo hard to think clearly. I know. I remember that dazed fog where you're just desperately trying to make it through. So it's much easier to establish boundaries ahead of time - stick to them, experience the results, and then see things as they really are.

And I subconsciously did this for the batch of MCBs I made.

Boundary: I only made a half of a batch - less to devour (though devour we did!)

Reset: On day two, I woke up, planning not to have any bars before 12pm. While that was a fail, I'd at least tried to restart the day with healthy expectations.

Pattern: When I saw the lack of restraint pattern emerge, I packed up the remaining bars and sent them off to school with my daughter to share at lunch.

Instant success. Instant learning opportunity.

Until the next time. I mean, look at how scrumptious those things are!

Lupus and Medication: This is your Reminder to stick to your regimen!

noreply@blogger.com (Sara Gorman) — Thu, 26 Sep 2024 22:00:00 +0000

This post is a reminder to take your medication.

Personally, I've been lax about taking my vitamin D over the last couple of months. Not completely negligent. Just not 100% consistent. And I ignored the doctor's suggestion to start taking a B12 vitamin for energy. In fairness, she said I didn't have to start the B12. Only if I felt like trying it.

And I didn't feel like trying it.

So I didn't.

But it turns out it's beneficial.

And both supplements help my fatigue and energy. Not so much that they eliminate the need for my nap (if only!), but they do make a difference.

This is not my first post about forgetting to take part of my over the counter pill regimen. You can read about my past run-ins with OTC medication here. I'm good about taking prescription meds - I don't stray at all. But when it comes to prescribed OTC treatment that I buy off the drugstore shelves? I don't know - I errantly think of it as optional. And less important. Which is a totally ridiculous way to view it, one that I don't condone at all.

So for anyone struggling to go pick up that OTC medication or supplement - just do it. Don't wait. Order it on Instacart. Add it to your Amazon Prime order. Make it happen.

Lupus and Skin: Welcome to Rosacea - another inflammatory condition

noreply@blogger.com (Sara Gorman) — Fri, 13 Sep 2024 14:48:00 +0000

It's not chocolate or coffee, per se - it's caffeine!

Okay, hold up. Let me provide some context.

Earlier this year, I was trying to determine if a food or beverage was causing the persistent, but not entirely constant, redness across my cheeks and nose. It had been present for about 6 months, and then escalated to include a breakout/rash. That rarely happens these days (thank you, old age, and vitamin c face oil), so I knew something was up. I did a mini elimination diet, which you can read about here, which was helpful, but not entirely conclusive. I also considered the possibility that it was a lupus rash, but the redness seemed to be influenced by what I ate or drank...at least most of the time.

So I headed to the dermatologist. The day of the appointment, I looked my absolute worst - I'd skipped my calm relief serum, avoided the temptation to dot concealer on the brightest spots, and hid my brush so I wouldn't dust with mineral powder, as I had been doing since the redness arrived. Plus, my face looked particularly red that morning, for reasons I couldn't explain - but I was happy that at least my symptoms hadn't subsided for the doc visit. Sometimes that happens!

He took a look at my skin, and while he narrowed it down to a couple of possibilities, was fairly confident it was rosacea, which, when left untreated, can also include an acne-like rash. Here's a great article about the symptoms of rosacea.

My doctor explained that rosacea is an inflammatory condition of the blood vessels, usually on the face. So anything that causes a rush of blood to the face - like caffeine, spicy food, exercise, hot drinks, or extreme heat or cold - is going to cause the rosacea to flare. That's why the chai tea I had had the afternoon before the appointment had left my face flushed. I had deliberately chosen tea over coffee, but it was the caffeine I needed to avoid!

You can read about the treatment options for rosacea here, but here's what I was prescribed:

1) Minocycline - Oral antibiotic: Because the acne rash had formed, we had to move beyond a topical, and go straight to an oral medication. When I say it worked within a week, I mean it. It took it twice a day for one week, and the acne was gone, and the redness vastly improved. I was happy. Like, no-concealer-or-face-powder happy. I continued the medication until the followup appointment (4 weeks), and doc and I were very pleased with the results.

2) Metronidazole - Topical antibiotic gel: This is for maintenance and upkeep, by decreasing inflammation in the blood vessels on my cheeks and nose. It's working beautifully, has caused zero side effects, and is easy to put on underneath my moisturizer or my nighttime facial oil.

3) Avoid foods, beverages, or routines that cause a flush to the face. Now that I know what I'm looking for, I can see that the spicy pepperoni from pizza exacerbates my redness, or that my face likes a splash of cool water more than my steaming hot shower. But I'm still adjusting to ALL of the things that cause my face to flush - sleeping on my stomach, even for just a few minutes; my beloved heating pad; the sun; hot wings. But I'm surviving. And I still drink my herbal tea every morning. I just wait until it it cools off a little.

Pretty sure it was the increase in caffeine over the last school year that brought on the chronic condition, as well as my predisposition to inflammation. But I am thrilled at quickly we got it under control and that I know how to maintain healthy skin going forward.

One more thought - I think gluten and dairy may cause my rosacea to flare, as well - which makes sense from an inflammatory perspective because they are naturally inflammatory foods. But I'm curious if any other Rosacea-ites out there agree. Let me know via email or in the comments!

Lupus and Sleep: 8 Things I Learned from Being Tired for a whole School Year

noreply@blogger.com (Sara Gorman) — Fri, 06 Sep 2024 16:41:00 +0000

Remember that extra level of fatigue I was fighting during the previous school year? Mostly due to getting up an hour earlier for my high schooler? It's back.

It was over. The moment school let out in June, my need for extra daytime sleep subsided. I had a summer to sleep, and it was glorious!

But now, school's back in session. And so are my 2-3 daily naps. Ugh.

But I vow not to get as frustrated as I did last year. Here's what I know from having gone through it once before. Hoping I can apply all I've learned to craft a new school year sleeping pattern!

1) Long naps (90 min or more) in the morning aren't sustainable.

- I miss too much of my morning. I feel unproductive and resentful afterward. And it makes it difficult to fit in an afternoon nap, which I desperately need to make it through the day.

2) Even if I wake up and am still sleepy from my morning rest, it's okay

- I thought waking up sleepy meant I wasn't allowing myself to get all the sleep I needed. Now I know that within about 10 minutes of waking up, I feel rested and recharged enough to get my morning underway.

3) My morning nap has to end before 9:15/9:30.

- It has to end early enough that my napping in the afternoon isn't thrown off. I'm not a pleasant person to be around if that happens, so just...yeah.

3) I can't skip an afternoon nap, no matter how long I've slept in the morning.

- This is really just me saying that trying to skate by with a tall cup of joe instead of a proper afternoon nap isn't an option. Coffee works, yes, but it's not ideal. And it has repercussions. See #4.

4) I cannot rely on caffeine to manage fatigue.

- I learned the hard way that consistent caffeine use (2-3 x week) has its side effects. At least for me. Remember that redness I was dealing with over the winter? My dermatologist diagnosed it as rosacea, most likely caused from my increased caffeine use. Argh. I promise to fill you in on the diagnosis in the next post. It involves medications and topicals! How exciting!

5) The extra fatigue is not a lupus flare.

- I REALLY worried about this last year. I just couldn't figure out why I couldn't adjust to the new schedule. Was I actually flaring? Were swollen joints just around the corner? When I was in the midst of it, it was hard to see the big picture - which was that on weekends, when I had an extra two hours of sleep at night, I only needed one nap. During extended breaks, I was back to normal, and needed even a shorter nap. It really was just the early mornings that did me in. I even tried to blame it on an iron deficiency for awhile, which, in truth, was mildly contributing to the issue...but not really. I just need sleep at night. And if I don't get it then, I need it during the day.

6) Two naps is not as ego-shattering as it sounds.

- Going into year two, I now realize that two naps is not a deal breaker. None of this is a deal breaker, in fact. I need what I need. If I go back to sleep between 8-9am, and sleep a little more between 1-2:30p, it's not a big deal. I'm not missing as much as I once thought I was. I can schedule my day creatively, and still get stuff done. My need for sleep does not define me. Thank you very much.

7) This is temporary.

- That really says it all. With one summer under my belt, I now know this need for sleep won't last forever. It's reassuring.

8) I am SUCH a better (INSERT ROLE HERE) when I am rested.

- This is what keeps me going. It's what makes me march upstairs in the morning to go back to bed, and it's what makes me shush the kids and their friends in the afternoon when I'm trying to sleep. It benefits everyone when I sleep. So I do it mainly for them. 🙂

Lupus and Medication: Tapering Cellcept

noreply@blogger.com (Sara Gorman) — Mon, 20 May 2024 16:01:00 +0000

In my quest to find the perfect chocolate chip cookie recipe, I tried another new recipe last week.

And it was a fail.

Not a complete fail. Just one that yielded flat, thin, cookies with heavy notes of caramel and not enough chocolate. They're not awful...but they were predicted to break the internet. So I mean, come on.

And they're definitely not as good as my chocolate chip cookies, which, if I don't mind saying, are mildly famous around these parts. Or used to be, back when they were highly requested at school pitch-ins and bake sales.

Compared to the Nestle Toll House Cookie recipe, I add a little extra flour, I don't pack the brown sugar, and I never skimp on chocolate. My cookies are big and fluffy and dense, all at the same time. Tate's thin and crispy, they are not. But to my sweet family, they are the most perfect cookie I've ever made.

Why I even think of messing with it, I don't know. After this latest batch, my youngest daughter made me pinky promise that I would only experiment with other types of cookies. She pleaded that if I make chocolate chip, they have to be my original recipe.

Don't mess with what works, I guess.

Which has always been my thinking on my dose of Cellcept. I have been on Cellcept for years now, flare free, healthy, and happy. My doctor for over 20 years believed that there was no reason to change what was working so beautifully. Having had lung, heart and kidney complications in the past, he and I both agreed we liked the status quo.

But when I started with my new doctor about a year and a half ago, she asked me to start considering the idea of a taper.

I told her I wasn't ready.

Because I wasn't.

She asked again about 9 months later. I still wasn't ready.

But when she asked about a month or so ago. I said let's do it. I was ready.

I think I was inspired by watching Deirdre overhaul her diet, accept new realities, and add supplements to her daily routine to address deficiencies that are making her feel crummy. I think there might be room for change in my routine, too, particularly since my doctor is advocating for it!

I know what I'm currently doing is working. And I definitely don't want to mess that up. But I'd like to see if I can do this living well thing on less medicine.

I've cleaned up my diet.

I've reduced my stress.

I limit my sun exposure.

I listen to my body and give it what it needs - which usually means extra sleep at often inconvenient times during the day.

I'm ready to move forward. I'm ready to mess with perfection.

I think my chocolate chip cookie recipe is safe for now. I found something else to tinker with in the meantime!

Lupus and Food: The Success of the Elimination Diet - Exploring Gluten Free and Dairy Free

noreply@blogger.com (Sara Gorman) — Fri, 10 May 2024 17:00:00 +0000

It's not chocolate!! Woohoo! 🍫🍫🍫 (Insert chocolate victory dance here.)

After a week of eliminating coffee and chocolate from my diet, I saw major improvements in my skin's tone and texture. Then, after about 10 days, I slowly added chocolate back in I waited a couple of days to call it, because I learned that sensitivities can take up to two days to appear. (This is opposed to an allergy, which would cause an immediate or fairly immediate reaction.) But now, I can confidently say that chocolate is not the primary cause of my skin redness. Woohoo!!!

I'm not ready to try coffee just yet. This is the second time in my life that coffee has disrupted my skin, so I think I'll hold off for a while. Plus, I've been reading about a ban on decaf coffee (or at least the decaffeination process), so I don't see any reason to rush back to a cup of joe until they get all that sorted.

In the meantime, I'll focus on helping Deirdre adjust to the food eliminations she's making, based upon the results of her comprehensive food sensitivity test you see here on the left:

*Severe Reactions to Gluten, Gliadin, and Whole Wheat

*High Reactions to Casein (protein in dairy), Sweet Potatoes, and Oranges

*Moderate Reaction to Cow's Milk, Lemon, Agave, Grapefruit, Pear, and Cow's Milk Whey.

It's been a fairly big adjustment, but we are very impressed with the results of eliminating these foods from her diet so far. And we're SUPER impressed with Deirdre's commitment to the elimination. She's discovering new foods and different combinations of old foods to eat the way her body needs. She's been an absolute rock star about it!

Here's what I want you to know about our experience with Food Sensitivity Testing:

1) We had a choice of three levels of testing - each one testing a larger, more comprehensive range of foods. We were torn - because we were pretty confident that the majority of foods that Deirdre ingested every week fell into the first tier of testing, which was also the cheapest.

But then we studied the list, and thought maybe the second tier would capture a few more foods that might be causing her discomfort. (The foods are color coded on the list to the right - and the key, though difficult to make out, is in the bottom right corner.)

We talked to friends and family who'd done the testing before, and they highly recommended the third, most comprehensive tier - just so no food was left untested. And we are so glad we went with that! I don't think the milk proteins would have shown up - so we might have mistaken her sensitivity for a lactose issue, which it is not. Read about that here.

2) This was not the first time we'd suspected foods might be an issue for her. I'd suggested cutting out dairy years ago - so Deirdre reluctantly cut out milk and cheese. It wasn't complete, nor did we cut out gluten, so she saw little to no improvement. So she stopped.

As well, we tried a period of cutting down on bread - to see if gluten was an issue. But while she was foregoing sandwiches and toast and cutting down on pasta, it wasn't a complete elimination. Plus, she wasn't cutting out dairy. So again - she saw little to no change. Now we understand that for a severe or high sensitivity like Deirdre's, it has to be complete to see results.

3) Having actual test results gave Johnny, Deirdre, and me common ground from which to work. It was no longer me against her - a so-called almond mom suggesting dietary restrictions on her kid (which I just hate to think about.) The suggestions I made were based on my own success in reducing lupus symptoms by cutting out certain foods, but she definitely didn't see it that way. Even though my intentions were good, and I was trying to problem-solve for her sake alone, she saw it as me limiting her diet and trying to change the way she ate.

But with lab results to prove it, she now understood that her body can't process certain foods, and that because of the inflammation and malabsorption they cause, those foods are like toxins in her body. We keep saying how sad we are that we were unknowingly poisoning her body for who knows how long - and I think she appreciates the fact that we accept partial responsibility while saying we just didn't know what we didn't know.

4) Mood swings, anxiety, depression, brain fog, moodiness, low energy - they can all be related to gut issues. Deirdre wasn't severely experiencing any of these, but enough that there were moments when we wondered, "Is this just typical teenage behavior, or something else?" Parenting is hard. And guessing is even harder. That's why we are so thankful for irrefutable results on both the food sensitivities and the vitamin deficiencies and imbalances we tested for. More on that later!

5) Lastly, but maybe most importantly, do we think we are reducing Deirdre's chances of developing a chronic, autoimmune disease like lupus by going through this whole process? Absolutely. We are thrilled to be taking steps today that could improve her health and wellness down the road.

Lupus and Medicine: Anemic? Don't skimp on your iron

noreply@blogger.com (Sara Gorman) — Thu, 02 May 2024 15:00:00 +0000

One little pill.

That's all it takes sometimes.

I've told you I've been fighting an extra level of fatigue recently.

I chalked it up to an earlier wake-up call because of Deirdre's new high school schedule. When I didn't adjust to getting up an hour earlier, I added a morning nap. You can read about me being resentful for the nap here, and learning to cope with it here. The path to living well with lupus is rarely a straight line!

I also thought maybe it was just time to join the rest of the world in needing a cup of coffee to get through the day. But my skin didn't appreciate the increase in lattes and macchiatos, so that wasn't going to be the solution.

But I never considered that the little iron pill I was taking (or some days, skipping) could be the culprit. When my doctor called to say my blood work showed I was anemic, I knew I'd been caught.

Granted, I've been anemic most of my adult life - needing a blood transfusion at one point - so I've always been good about taking my medicines as directed. But lately, I've been forgetting. And I took waaaay too long to pick up a new OTC bottle of iron at the drugstore when I ran out a month or so ago.

I know. It's awful.

My labs reflected it.

My pillfold revealed it. (The lack of black pill is so OBVIOUS, too!)

And my body felt it.

But I'm back at it - determined to go 7 for 7 every week of May with all my meds, including my daily dose of iron.

This isn't my first lapse in OTC medicine management. It's just so tricky to remember the meds that aren't automatically renewed by the pharmacy! I searched OTC on my blog, and here's another post about my difficulty remembering to pick up a bottle of baby aspirin.

It's a thing. But now it's going to be a success story:

Virginia Woman Turns Around Debilitating Fatigue with Iron Pill

(Subtitle: Never mind that she was already supposed to be taking it!

Lupus and Skin: Rosacea? Lupus Rash? Food? Finding the source of the redness

noreply@blogger.com (Sara Gorman) — Wed, 01 May 2024 15:04:00 +0000

Welcome to Day Four: No coffee or chocolate.

That's right. We're doing a mini food elimination diet over here. Be glad you're not around.

I have to admit, though - I am pleased with the results, even if I'm not super enthusiastic about cutting those two things out of my diet permanently. 🍫☕ Sigh.

Here's what led me to this experiment:

As September and October rolled around last year, I noticed that, on my face, the reddish sun-kissed look I'd had all summer wasn't fading.

Had I gotten too much sun over Labor Day?

Was I continuing to get too much sun exposure at the girls' softball games in October?

I found myself dabbing a little concealer on my nose almost daily, something I hadn't done since my prednisone days with flaring lupus. I decided I would up my SPF game, even as the weeks grew cooler.

Then winter came, and the redness continued. I read about the effects of cold temps on dry skin, the breakdown of the skin barrier as we age, and figured maybe it was actually dryness I needed to combat. So I increased my moisturizer routine, especially at night.

I tried a redness relief lotion first, followed by a hydro booster, then another couple of moisturizers targeted to redness relief. They all helped a little, but just temporarily, and some had unwanted side effects.

And the redness continued. And then it started getting worse - spreading to my cheeks right next to my nose. And then I started getting acne in those cheek areas. Like a teenager!

Was it the latest lotion? Was it that my Vitamin C ran out? Was I still getting too much sun?

Or was it food? Or Rosacea? Or a Lupus rash (which I've never had on my face before)? Or just my skin barrier gone crazy?

My skin care enthusiast daughter suggested I go back to the basics, so I went back to applying just my regular moisturizer morning and night, plus aloe. (I can't say enough about having an aloe plant in the house.)

Then my doctor called to say that my latest blood tests show that I'm anemic.

Which explains why I've been so tired. And possibly napping twice a day.

And why I've been drinking coffee at least three times a week to give me the boost I need.

And then...cue the lightbulb.

Coffee. Acne. Redness.

We've been here before.

Over a decade ago, I gave up coffee on a daily basis because I linked it to skin issues I was experiencing. I stopped the coffee, and they literally went away overnight.

But we forget, don't we?

And when I'm tired (and anemic), I REALLY forget.

So I'm cutting out coffee AND chocolate (another skin disruptor) to see if I can heal my skin. I'd love to avoid a visit to the dermatologist, but as we know, often the wisest thing is to seek the help of a medical professional.

First two days of the elimination were AMAZING. I saw immediate improvement.

Day Three, I experienced a little setback - see my list of possible culprits below - but today I'm back at it. Aloe is on. I am moisturized. And I'm not drinking a hot mocha latte. I will keep you posted!

Here's a list of possible culprits that might play a role in my skin health. Let me know if any of these affect you:

Coffee

Chocolate

Fried foods

Sun exposure

Dairy

Gluten

Hot Drinks

Other:

Makeup brushes

Eye mask that I wear at naptime

Based upon Day Three's setback, adding:

Pizza 🍕😢