Progress Not Perfection

Years ago, (I feel like I was naive back then, maybe I still am, lol), I really tried to examine what would be the first steps on the path to regain. I felt like there was a range of pounds regained on the scale that specifically—yes—that would define that path.

Seems pretty obvious to me now, but numbers on the scale are just the result of walking down a path of my behaviors, focusing on the numbers without addressing the behaviors that caused the numbers.

For me, I realize it is truly not a new higher number on the scale, it is the behaviors that precedes that new number. In fact, certain behaviors and choices (to overeat emotionally) and then NOT seeing the scale go up to a new number (at least, temporarily, or after just one time off plan) used to lead me to think I somehow “got away with it,” (the overeating behavior, that is).

For me, I believe that to achieve long term maintenance, I must NOT allow the behaviors. Period.

What is going to work for me long term is planning what I eat, and eating what I plan, no random unplanned food to stuff down my discomfort. Simple. I can plan dessert. I can plan larger holiday meals. I just CANNOT randomly (without a plan) overeat dessert-type foods to stuff my emotions.

And for me personally, I do not think there is any amount of regained weight that is acceptable for me, IF that weight gain is caused by a return to old behaviors in overeating, especially based in the desire to stuff down discomfort (emotional, or even physical). And especially allowing the old behaviors on a regular basis, and then restricting to lose regained weight.

Thankfully, this post is not about regained weight. I currently weigh 122.8 pounds. But January was a rocky month, compounded by a multi-week-long attack of intense immune memory-driven recall dermatitis (external part of the reaction), followed by days of worse than usual digestive problems (internal part of the reaction). Apparently “recall dermatitis is notorious for being slow to fully resolve once it’s activated,” and I have been living that reality. (Sunday, February 1, I still woke up with one itchy pink circle that needed medication. Two other spots were itchy also, but invisible to the eye, not pink). I still feel a tingling “itch” in those spots, as we speak.

My body is unpredictable. Therefore, that can affect the stability of my weight, which is fine just as long as it’s NOT because I made unplanned food choices.

I saw problematic behavioral choices before the systemic immune attack that I do not want to continue, but thankfully, I did not succumb to during. That was a pattern I had of soothing in the past, not just the soothing of emotional discomfort, but sometimes of physical discomfort. Seeking relief. But those behaviors, overeating and/or restricting afterwards, they do NOT/will NOT serve me in a positive way.

I have a habit of assigning meaning to random dates, (meaningless to anyone but me). It can be a bad habit, because healthy routines should not need “special” reminder dates, or special restart dates. Today, right now, is the only date I need to pay attention to.

My heathy routines should just be my daily normal. And they are. Until they aren’t.

Today, I find myself looking back at the past (and past dates) because in the present moment, I find myself concerned. Could I end up returning to my past food behaviors? I definitely thought about it when I struggled with the discomfort of the immune/allergy reaction. I am aware that I carry my past wherever I go. I have discussions with my past. I know that does not sound good. I can (and should) let my past go, and I definitely do NOT want to use my past as an excuse for something I choose to do today. And my future is not yet written, so I can simply choose to live in the moment, and surround all my moments with good choices.

On the other hand, he who forgets the past is doomed to repeat it. That is good advice too.

January 12, 1999: That was a really big date in my past, the anniversary of which was a few weeks ago. It was the first time I ever saw 200 pounds, (204, to be exact), on the scale. After that, I lost quite a bit of weight in 1999.

Then, after making a big geographical move and regaining weight, I also saw 207.5 and 204 pounds, in the years 2003 and 2004.

I have never seen weights as high as those ever since. The closest I have come, I saw 193.5 and 192.9 pounds. The first of those 2 weights was in 2011, and after that weight, in 2012, I went gluten free and lost quite a bit of weight. I saw the second of those 2 weights in 2023, again after another big geographical move, before my recent consistency and determination brought me to where I am today. I have not seen 200 pounds or over on the scale in the more than two decades since 2004. But I spent decades of my life losing and then regaining significant amounts of weight, getting close to some of those 5 high weights I listed. What a waste of my time, losing to only regain, (totaling over 500 pounds! that I wrote about here), over and over again.

Very recently, 5 other dates have been really significant:

1)Dec.21/25

2)Dec.25/25

3)Dec.31/25

4)Jan.5/26

5)Jan.11/26

On all 5 of those days I overate excess food that I did not plan to eat.

I did not have the recall dermatitis attack until January 20, but maybe I had started something smoldering ahead of time with less than perfect food choices, and/or those 5 different days (that I succumbed to old soothing food behaviors) was because the immune attack was already percolating (and depleting my willpower) ever since wearing the adhesive pads for 24 hours on December 9th to 10th. I will never know for sure.

I personally know people that are right now, in these first weeks of 2026, working hard to reclaim their health. And yet on these 5 different dates, my behavior was the opposite, (whether or not I had a possible excuse physically—something effecting my immune system—does not matter, because there will be always be available excuses to “give in” and eat “whatever,” and I canNOT let “I feel bad” emotionally or physically to be one of them). Those dates are representative of me essentially throwing my health away, certainly not holding on to it. The health I have now is health that I have worked my whole life to achieve, (unpredictable reactions aside). I am at a healthy body weight, with the ability to go for walks, go skating, and play on the floor with my grandson. My current health is the culmination of me about to turn 55 year old, having worked consistently to make good choices for the last 2.5 years. Yet, the choices I made on each of these 5 dates…Where am I going to be if I return to that behavior??

What is the number 1 thing on this list of “5 Pillars”? = Health.

1)Health

2)Financial security

3)Routine/peaceful life to calm your nervous system

4)A few true friends

5)Emotional resilience to weather storms and keep moving forward, set boundaries and say yes only to things that support you

After I copied this list, I spent the last few weeks leaning into all 5 of these:

1)I went back to my routine healthy food and exercise choices

2)I worked on our year-end financials, to get/keep our financial ducks in a row

3)I leaned into planning and scheduling my daily routine

4)I went skating and enjoyed the company of other people

5)I proved to myself that I am resilient enough to weather a recent storm

This is a much better list of 5, than my list of those 5 dates of bad choices.

I did have a thought. 2.5 years of discipline and consistency, where I do NOT overeat. There were a few times I did have a little more food than I planned, I am not perfect, but those were an isolated incidents, where I was back the very next day to eating what I planned, (without rapidly following reoccurrences). Then I started HRT on December 15, and after that, I have 5 different days over the course of 3 weeks where I choose to overeat, just like I used to, and I struggled to stop?? Is this a physical response to the HRT? Or am I just comforting something emotional in a way that I have not indulged in for over 2.5 years?? No, I don’t think it was the HRT. More likely it was a depletion of my resources (that I did not know was happening, except I did mention extra fatigue here) that could have been a factor, while my immune system went into overdrive.

It feels like I have turned a corner, and I am still taking HRT. And because no date on the calendar will ever compare in meaning to waking up today, at 122.8 pounds, I am once again feeling resilient. I have made it through my recent “storm” of old behavior, and “storm” of immune reactions, to the other side, where thoughts about turning to excess food as a comfort have gone quiet.

This is not perfection, but progress.

P.S. Something that just tickled my slightly neurodivergent love of patterns, is that despite this being 2026, I think this is my year of 5’s. I just made a list of 5 years where I struggled at my highest weights. I just made a list of 5 dates where I struggled with unplanned overeating. I just made a list of the 5 pillars of health, and I am posting this on the 5th. And I am 5 foot 5.5 inches tall, and I am about to turn 55 years old.

Cannot Forget the Wild Card – Celiac

Sigh. What a month January was for me. Just when I thought nothing “new” would happen, we had a truck accident that I mentioned here, where a solid sheet of ice from the top of a passing cube van slid off and hit us amidst a notorious corner of Highway 1, while we were driving into town, resulting in my husband going 3 weeks without his truck. And then I had (still having) a crazy immune response to something I had been exposed to December, triggered by something I probably ate in January.

I say probably, because I will never know.

What I do know is that MCAS is related to hEDS, but the immune nature of this reaction (including swollen lymph node or nodes, hard to tell) started me thinking about the fact that long before any of the diagnoses I received in 2025, I was told by a doctor in 2011 that I was probably Celiac.

There’s that word probably again.

At the time, the only way to prove Celiac disease was to get an intestinal biopsy, which the doctor said would take at least 3 months to have scheduled, all the while I had to keep eating gluten, otherwise I could get a false negative. The thing was, I was sitting in the doctor’s office, very ill, having already waited 3 months for the referral to an allergist for my non-responsive-to-allergy-medication reactions. When I finally got to see the allergist, she said, “This looks like your immune system is excited about something, not just regular allergies,” and had ordered the following blood tests:

(Written in typical medical hieroglyphics that requires some Googling, lol)

We did not have a My Chart (or equivalent) back then, so I do not have a copy of those results, (but I wish I did, darn!). All I know is the doctor that sent me for the allergist referral in the first place, looked at the results, then called me in for an appointment. Then he told me he was pretty sure I was Celiac, and that a strict gluten-free diet would help. (Then he told me about the biopsy, and the at least 3 month wait, etc.).

He had me at “gluten-free.”

Going gluten-free was life changing. We never scheduled the biopsy. I had break-through reactions, but still felt good, but then I was fairly ill again 2016-2019. Lots of tests ordered during that period of time, abdominal ultrasounds, tests for infections, tests for Lupus, as well as the lung function test in January of 2020, for the shortness of breath that started in 2018, (which was actually my heart mitral valve). The results from all these tests did not give me any answers. (It was a list of all those historical tests that I took with me to my doctor in July of 2025, which finally led to a referral to a rheumatologist—a referral which had been refused in 2020–an echocardiogram, a proper bone scan, and finally all my diagnoses).

In 2019, in addition to gluten-free, I went grain-free, then I went as ultra processed food-free as I could, and once again, I felt so much better! Life changing again. (This is why I think maybe it was the processed package of taco spice that was my recent problem. But maybe not, like I said, I will never know).

Anyhow, I recently joined a Facebook group about Celiac, and they posted this morning something that resonated with me. Although lately I have been framing almost everything through the lens of hEDS and MCAS, it is very validating to not forget I am a Celiac too, and this will always add a layer of complexity to any and all immune responses I experience:

“Day 3 of my series on living with celiac disease.

It’s the “what ifs” that make celiac disease hard.

Is this GI distress from gluten—or something else?

Is the peanut butter contaminated because someone used a gluten-covered knife?

Is this product actually gluten free, even though it doesn’t list gluten-containing ingredients?

Did my friend accidentally add a gluten ingredient to this “safe” meal?

Did I pass this on to my children?

Why did I get this when my sibling has the same genetic markers and didn’t?

How long am I going to have to wait for a cure?

And underneath all of it:

Is my diet gluten free enough?

Living with celiac disease isn’t just about avoiding gluten. It’s about living in a constant state of assessment. Every symptom becomes a question mark. Every meal comes with a quiet audit. Every off day sends you replaying what you ate, what you touched, what you trusted.

People think celiac is “simple” because the treatment sounds simple. But gluten hides. Labels change. Cross-contact happens. Bodies don’t always give immediate feedback.

So you stay vigilant.

You second-guess yourself.

So much of it lives in your head — in the calculations, the vigilance, the what ifs you carry silently. That’s what makes it hard.

Work hard and stay safe out there. I see you and there is a whole community here that sees you too.”

This Allergic Reaction Surprised Even Me

Warning: This post contains pictures of hives!

When I wrote this post on Monday, it was inspired by having eaten with my husband the night before. He felt like eating tacos, and instead of making myself something completely different, in a completely different pan, I decided to “join” him, and eat some taco meat (that I had prepared myself) on a bed of lettuce, while he ate tacos in shells with all the fixings. Because eating “together” is fun.

But I didn’t feel very good the next day. It was a reminder to me that my stomach generally prefers no surprises.

The Old El Paso Mild Taco Spice packet looked reasonably “safe”:

“Corn Starch, Salt, Spices (including chili pepper), Maltodextrin, Onion Powder, Sugar, Vegetable Oil (canola/soybean), Silicon Dioxide, and Natural Flavor.”

Apparently, for me, maybe it was not safe?

What happened next…I almost do not believe it myself.

Exactly 6 weeks ago, on December 9th and 10th, I wore a 24-hour heart monitor.

Of course, once I pulled off the 5 sticky patches, I had a rash under each spot. I treated the rash for a few days with my eczema cream, and it went away.

Fast forward to Sunday, January 18. I ate 139 grams of taco meat (yes, I weighed it) on lettuce, with a few grape tomatoes (which I literally eat every single day with my pickles, at lunchtime) and some cheddar cheese I grated myself and sour cream, (both of which which I eat often and without issue).

Monday, January 19, I did not feel all that well, and I was very gassy, (slow protein digestion). And I had a sore lymph node under my arm. I thought, well, that’s unsettling, (no one likes to feel a sore lymph node=alarm bell), I will have to keep an eye on that. I decided, just as long as the lymph node shrinks in a few days, it will have been nothing. I decided to blog about my upcoming dinner out for valentine’s, because with my upset stomach, it was reminding me I dislike eating out, but I must remember to think positively.

Tuesday morning, January 20, I tell my husband, wow, this lymph node under my arm is still sore. Then he says, what’s that red spot on your ribs? I go look in the mirror…

EVERY single one of the 5 spots (4 out of 5 are visible in the picture, but trust me, it’s all 5 of them, and no where else) that had become a rash after pealing up that adhesive in December…is once again flared up into a rash…but this is 6 weeks later!!

Could it have really just been the taco meat?? That is the only thing I can think that it could have been.

Anyhow, this helps:

But last night, 8 hours after taking a 12 hour dose, it wore off and these 2 in particular felt EXACTLY like I had been stung by a wasp !

Thankfully, after about an hour, the Allegra worked again, and I have vowed to take it every 6 to 7 hours (stay ahead of it) until these hives disappear.

I guess I want to document this MCAS reaction because I have experienced a certain amount of skepticism when I declare, even to my doctor recently about my hormone therapy, “Oh, I don’t think I could tolerate a subcutaneous patch, my skin is really sensitive.” Yes, I seem dramatic, but it is because this reaction was…dramatic, and a bit traumatic too. It was painful, like wasp stings, and right now my skin feels itchy and bruised, (and the spots are still red and inflamed, even though they are no longer burning like a sting). And the tendons in my ankles have stiffened up (inflammation in a “weak” spot where I have had previous/reoccurring issues). Generally, I feel like I’ve been hit by a truck. 😦

Update: I did go see my family doctor (PCP), and then talked with Chat GTP, “Although uncommon, delayed reactivation of prior adhesive-induced dermatitis is a recognized immune phenomenon. The precise reappearance at identical circular sites strongly supports immune memory–driven recall dermatitis, likely amplified by mast cell activation from a systemic trigger.” Just another interesting thing to add to my hEDS/MCAS/POTS list. My doctor checked my swollen lymph node, noted my file accordingly, and prescribed a strong steroid cream for the burning and itching. 👍