Author: StepnAhead

It’s been a while. Seems that’s often the case. I’ve made some progress. Steps forward. Changes. Physical changes, spiritual changes, social changes, emotional changes. Some great successes, some struggles — but that is all life, isn’t it.

I’ll start with the physical stuff:

After years of working on accepting where I was at physically, and becoming okay with the discomfort of Lipedema (and secondary Lymphedema), which is had been told over and over again was not curable and “sorry we can’t do anything” (any treatment I might have had as an option was not going to work for me due to other complications). I was still quietly on a quest for better health. Something. Progress. Somehow.

I went to a new (to me) massage therapist, thinking at least getting a massage would be a bit pampering, but also helpful on both the emotional and the physical level (especially remembering the daily massages in Bali for three weeks in ‘17 that helped me relax enough that my grey hair disappeared and went back to blonde again!)

So, since my chiropractor had a massage therapist start renting a room in his office, I scheduled an appointment with her.

It wasn’t what I expected. This wasn’t your normal massage. She used several different modalities concurrently and immediately laser-focused on lymphatic drainage. Not the usual totally ineffective lymphatic drainage I had in the past, either. She honed in on lymph nodes and lymph lines and instantly targeted problem areas that were clogged or blocked to coax them open. I could actually actively feel what she was doing opening up the flow in my body.

The progress was slow at first, going only weekly. We decided to speed it up and in April, I began to go twice a week. By May the progress was visible. In June even more so. I looked like a different person. By late July, although the shape was similar to June, I looked younger!

The progress was most visible in my face and neck, but was also going on in my legs and arms. What was initially stuck, inflamed and swollen, began to move and the swelling went down. I have a more visible waistline from the back, not as much of a gut in the front, and the “shelf” hips I had developed are more sloped than they were, but still need more focused work. We are getting there. I am impatient, but learning to take it a step at a time.

One side is shifting more quickly than the other. I have decided to call one side the tortoise side and the other the hare side. One is slow and steady, the other goes in quick sprints and naps. 😆 They each have their strengths and weaknesses, but they’re both capable of achieving a great finish.

In November of ‘23, I had had to have something removed on my calf that required 16 stitches (8 internal, 8 external) and due to lipid and lymphatic inflammation in my legs, my skin was compromised and delicate and the stitches didn’t want to hold and tore and swelled and didn’t heal for four months!

Once it was finally closed and safe from infection, my usual six month check up was in late July. I had undergone the massage treatment and shape shifted so much that my skin was no longer taut and my stitches were not only healed but the angry purple/red scar was already fading. The dermatologist was astounded with my progress and the visible palpable change in the health of my skin. He said it was in the best condition he had ever seen it. A cursory exam indicated no red flags and I was given a clean bill of skin health with a full year before my next checkup.

I have not dieted. I have not exercised. In fact, I was told not to exercise while my system relearned how to properly function and move internally. I do not know how I look so different but have not lost any weight, but I am told the weight loss will come as I progress with treatment and I believe it.

One of the funny things about the shift has been learning to be okay with flab. Flabby, compared to Inflamed, is a GREAT thing, so at the moment, I am grateful for flab. The “wings” under my arms are sufficiently hanging to see my actual arm shape above them when I hold my arm out. This is an amazing evidence of progress! My legs are not stumps and are beginning to show similar leg shape and softness as the lymphatic – and lipid – sheets that were hardened and inflamed break down and begin to move. It is amazing.

I am encouraged with the visible progress. I still struggle with not seeing it in the numbers on the scale, but there is no denying the visual evidence of change.

I am off of *all* my prescription meds (anti-viral, blood pressure, anti-anxiety) except for thyroid which I will have to take for the rest of my life regardless (post radiation – I have no thyroid). I’m also off all my formerly-regular OTC meds (for heartburn and allergy) only taking holistic allergy meds on occasion and Excedrin as needed (still dealing with frequent migraines and chronic back pain).

I’m honest: I still keep the blood pressure, antiviral and anti-anxiety meds on standby, should anything unexpected flare up, but I am at present – cautiously successfully – finding other ways to try to meet those needs without medicating, and that’s exciting!

I’ve been given the green light to take up my Pilates again. I need to clear the room where my machine is, and begin to add that to my health routine, which now includes the regular use of herbal mallets, gua sha stones, and taking vitamin and herbal supplements, turmeric ginger tea, and daily electrolytes in plenty of water. And working on better sleep habits.

Still needing to accommodate my executive function issues, I’ve switched from Factor meals (which used to focus on organic and gluten free but no longer does) to My Metabolic Meals which still focuses on gluten-free, grass-fed and organic as much as possible. It’s been a good switch.

It is good to look younger, and be able do things I previously struggled with – like having better balance – and getting dressed without having to lean on something!

So – yay for progress! I am excited to see how far I can take it!

It’s really frustrating, to me, that I can’t seem to lose any weight. I’m eating between 800-1200 calories a day, mostly low carb, high fat/protein plenty of veggies, trying to drink enough water, supplementing vitamins, minerals and herbs for immunity as well as for adrenal support, and general “filling in the gaps” where food may not be sufficient. I’m not exercising because of knee and back pain and concerns of exacerbating those issues. So I’m hovering around within the same 10 lbs as ever (of late) … so annoying.

I have been contemplating, as so little is known about Lipedema other than “it’s incurable” and “it only gets worse” and “you can’t lose it” but I seem to be otherwise healthy — in fact (despite structural issues, allergies, Lipedema and lacking a thyroid) I am in many ways healthier than most people I know. I stay well. I rarely need to see a doctor – and have only gone because they won’t refill my thyroid meds without me coming in for a visit (which is irritating, as I think a phone call and a blood test should suffice, but that’s not the point I’m trying to make) Viral and bacterial infections, colds and flu’s seem to be kept at bay. I have been completely free of them for well over a decade since eating organic and more targeted supplementing.

Lipedema is not obesity, although someone with Lipedema (especially in more advanced stages) will appear to be obese. It is not caused by overeating or not exercising enough – and exercise and diet will not make it go away. Lipedema fat is NOT actually a part of the regular fat that makes up obesity which is known to create so many comorbid health issues.

I DO know that I do have regular fat to get rid of, but I can also tell that my Lipedema is spreading, as the familiar painful fat and lumpy nodules are now in my arms as well as my legs. I am always considered “morbidly obese”, but while I know I have excess regular fat I could lose, I wonder – is Lipedema fat heavier? Or lighter? The same weight? Would I be considered obese without the Lipedema fat? Or if I lose all the regular fat I can, would my Lipedema fat still make me rank as obese — and SHOULD it?

Lipedema fat is so different from regular fat. It doesn’t sit in the body the same way as regular fat does. If you do an image search of “Lipedema Fat vs Regular fat” you will see how regular/normal fat is all in a big hunk together, whereas Lipedema fat is more like blobs and globs and nodules of fat, strung together and completely tangled up in the lymphatics system, nerves and veins, capillaries etc. within the layers of muscle beneath the skin. (No wonder it’s painful and super sensitive to the slightest pressure!?!)

Here are a few photos I have found that help show the differences (these are not my photos but they are found in numerous places so I don’t know who the original credit belongs to)

This Lipedema fat that I cannot move does not mean I’m obese. I’m not not using it as an excuse to whine and say “it’s not my fault”. It’s the truth. People just don’t understand that. They assume otherwise, and are super quick to judge.

Maintaining a healthy diet and moving your body is never a bad thing, but it won’t necessarily make me much thinner than I already am. (And I’m NOT thin!)

I wonder if there is a way to know or actually differentiate how much of my weight is regular fat vs Lipedema fat, how much I can lose safely, and when it’s okay to say “I’m as healthy as I can be just the way that I am at the weight where I am” … especially taking into consideration how capably my immune system is resisting illness and infection.

Maybe I should be looking at things in that perspective more, and just concentrating on toning up the body I have, instead of being so desperate to melt off a fat that won’t burn. Maybe (beyond just being actively conscious and mindful of it) so much focus on diet and exercise trying to lose weight will do more harm than good for me when it’s already a known fact that it won’t take away the Lipedema Fat anyway, and

Lipedema is not Obesity.

It seems many of the moments, important or close relationships, or things I remember with great fondness or as “top memories” in my life that have involved other people, are often not even remembered by those other people at all …

It’s really awkward when I find that out. It rather harshly diminishes what I thought was special, and I wonder how my interpretations missed the boat so wildly… and then I don’t know what to do with the newly-shredded remnants of great feelings I had apparently erroneously attached to them.

I try to tell myself the memories and my feelings about them are personal and are still worthy even if they weren’t shared, but part of the greatness was the “shared” bit… that apparently wasn’t what I thought it had been. Sort of feels like having the joy slapped out of you. The slap is more memorable at that point than the joy was, and it all gets tangled together very messily.

Confusing and convoluted … and I think probably typical for autistics.

It’s so easy to get caught up in this human step of life and forget that, in the grand scheme of things, it’s just a step.

Life is infinite. Way more than the several decades of humanity that we experience.

I believe in reincarnation, but even more than that, I believe in spiritual beingness: The “isness” behind the thoughts.

The awareness watching the watcher or observer in the silent “in between” .

The infinite divinity of the indescribable “there” that is both everywhere … and nowhere — because It …isn’t it. It just … is.

I never thought of my self-sabotaging as an addiction. I don’t really have what one would describe as an addictive type personality.

But when it was clearly mentioned to me as I was discussing certain puzzling aspects of my behavior, it must have just been said at the right time to click.

I am addicted to self-sabotage!

It’s a different kind of addiction than what I am used to seeing. I have experience with people who have been addicted to smoking, food, drugs, or alcohol. Even people who were addicted self-mutilation. I have had times in my life when I’ve gotten drunk or smoked (cigarettes and pot) or binge-ate and vomited or didn’t eat for days on end or used cutting as a form of emotional self-expression… but they were pinpointed moments, not addictions.

An addiction to self-sabotage, covers an incredibly wide swath of behaviors, choices and thought patterns. Like … shockingly, pretty much anything that’s unhealthy!

I’ve been trying to be mindful of self-sabotaging choices and behaviors this past week, and the process has been both eye opening and really uplifting!

I went grocery shopping yesterday and caught myself thinking about purchasing unhealthy food – and chose not to sabotage myself.

I allowed two things: one bag (not two!) of blueberry bagels (and no loaf of fresh bakery bread), and some Hatch Chili Mac & Cheese (fresh deli, not packaged). Both of those have wheat/gluten. But I am not going to shoot myself for it because allowing an obsessive guilt trip over judgmentally perceived failures is also self-sabotaging.

Let me write that again: Allowing an obsessive guilt trip over judgmentally perceived failures is also self-sabotaging. Wow. That’s using self-sabotage to self-sabotage!! Talk about layering!

So today, I am going through my clean clothes. I am sorting what I want to keep from what I don’t want to keep. I am removing anything that is in any way uncomfortable. I will keep clothes that were comfortable when they fit because as I discontinue the self-sabotaging, I am sure they will fit again and at that time I can choose to keep them or to let them go, but a lot of stuff I find I may really like but don’t ever wear, or it just doesn’t fit me and never will, or I’m just “past that phase”.

I want room in my closet. I want everything hanging in it to be something I like so much I can hardly wait to put it on.

I want to look in my closet and not feel any stress or distress — just comfort and love, knowing anything I choose to wear will be something that my skin loves being in. 😁

Giving thought to my last couple of posts – It seems that I am addicted to self-sabotage, based firmly in PTSD and religious indoctrination that reinforced the belief that I have to fight – to hide – my own very being-ness, because it is a danger to me.

As I was pondering this, a Sunday School chorus quietly came to mind from my childhood and filled me with sadness as I realized how very differently I perceived it when I was a child.

“This little light of mine, I’m gonna let it shine …”

The second verse says “Hide it under a bushel – NO! I’m gonna let it shine” … and I always wanted to protect the candle…

When you yell “no” and yank the “bushel” away, the very motion of moving the bushel would suck the flame away from the wick and it wouldn’t shine anymore. But then I also feared the light would set fire to the bushel protecting it.

😢

I love the idea of people being lights and that light being let to shine. Children should shine and not have their brightness snuffed out.

I always wanted to sing the song softly and much more slowly. To cherish the light.

I never liked the verse about Satan blowing it out – it didn’t make sense to me.

Pulling the bushel away from the light would blow it out though. That was the sad thing. (Autistically, I took it very literally and it wasn’t a scientifically solid concept, so I dismissed it. Although now I imagine some might say Satan blew it out when I was raped).

I wanted to protect the light. If I was the light, I wanted to protect me. I have hauled that “bushel” around with me everywhere to protect the little light of mine.

It made me think of the little firefly that once hid under the straw hat in my room when I was a little girl …

This little light of mine.

I’m gonna let it shine.

The song always made me feel so sad. So protective, and so sad.

There’s so much more stuff loaded in this song, but this was my reaction to the first two verses when I was a kid. And part of how it plays into my sense of hiding myself.

Just to be safe.

Late the other night, I posted a “thumbnail sketch” of the bigger emotional and psychological things that are “feeding into my struggle with weight”

Autism. Sexual Abuse. C-PTSD, and all the tiny but super clingy tendrils and tentacles that branch out from those things … topped off by being a white girl being raised in a conservative evangelical (Protestant) Christian mission “bubble” within a Catholic Latin American country. I mean … what could go wrong?

What would those things have to do with weight? One would ask. They really don’t seem to have anything to do with each other.

But they do.

I may not be really succinct here. Conciseness isn’t my forte. I tend to pick through my thoughts as they flow past, grabbing the ones that insistently bob to the surface and hook my attention.

So let’s go back a moment, and try to put some of those pieces back together and see how the flow became tangled to begin with.

First off, I suppose, would be to acknowledge that from a very early age, I was not a trauma-free, neurotypical, mono-cultural, majority child, uninfluenced by the world of religion (and conversion.)

At the age of two, I moved with my family to South America. This was just four years after five young missionaries, compelled by their beliefs, reached out to befriend and convert an indigenous tribe in the Amazon, and were martyred on a small jungle beach. This shocking event deeply shook up the evangelical Christian church around the world.

My grandparents were missionaries in that country at the time, and my grandmother was with the martyr’s wives when they flew over the site of the murders.

Though four years had passed, this event was still very fresh on the minds of the church, and the local mission community when we moved there. Around the world, the wives and their families were on a pedestal of a sort, but fame is a strange and awkward thing, when you’re living in the middle of it.

But this “rubbing shoulders” and “growing up with” was the stuff of my life. These families were my neighbors and their kids and I went to the same school (although they were several years ahead of me in age). Post-trauma stress was inherited, to some extent.

All this to give some background to my upbringing.

~~~

It was a clear Spring evening, after I was raped, and I walked beside my bicycle because I found I couldn’t ride it. I was in so much pain and was so confused, I could do nothing but cry in hoarse, gasping sobs all the way home.

Upon my arrival home, late, my mom, heavily pregnant with my next sibling, was finishing making dinner. As I leaned my bicycle on the back stairs, still wracked in tears, she noted the blood on the seat and crossbar, and assumed – as any normal mother would have – that I had experienced a dreadfully painful accident on my bike, that resulted in somehow hitting my pelvic bone quite hard on the crossbar, likely causing considerable bruising as well as the bleeding. I was walking unaided, if understandably tenderly, but I appeared to be otherwise, physically “okay”.

Concerned, she lovingly rushed me into the bathroom, and gently seated me on the open toilet. Putting a washcloth under cold water, she lightly wrung it out, and instructed me to hold it where it hurt, in order to slow the bleeding and cool the inevitable bruising. She tried to reassure me I would be okay, but also had to get back to the kitchen, because dinner was on the stove and no one else could supervise it. (Dad had recently been in an accident and was bedridden in recovery.)

She came back in now and again to try to comfort me and rinse and cool the cloth in fresh cold water to give it back to me.

I had no idea how to explain what had happened. I had disassociated completely and didn’t understand anything beyond that I was in excruciating and incomprehensible pain.

~~~

I healed, physically. My baby sister was born the month before I turned seven and I was no longer the youngest of three, but a not-quite-in-the-middle of four. I loved my sister, but dealing with the events I had just experienced and then losing my “place” as the youngest and also feeling set aside due to the demanding needs of a baby, the adjustment was overwhelming.

I know in retrospect that had my parents had any idea what had happened to me, they would never have left me to handle what I went through alone, but at the time, they didn’t know, and I slipped through the cracks.

I began to wear underwear to bed, under my pajamas. For me, it felt like at least an added layer of protection. I would wedge myself tightly between my mattress and the wall at night.

This underwear to bed thing bothered my mom. She felt it was important for hygiene to allow the skin to breathe and avoid things like yeast or bladder infections, and one could do that with loose-fitting pajamas and night gowns, but not with underwear.

I couldn’t bear it. I think some of it was autistic sensory issues and a mass of confused feelings of typical age-related self-gratification combined with PTSD, but mostly it was feeling far too aware of myself “down there” when I wasn’t covered, and desperately wanting to self-protect – even from my own awareness. I would get up in the middle of the night and put underwear on under my pj’s, and just hope my older sister didn’t wake up or say anything if she did.

Time went on, and I learned to cope in whatever way worked best for me. Sometimes it was awkward (like the underwear to bed thing) and other times it manifested as an attempt to maintain control in other areas.

We would drive home from the city with all the groceries for a month in the back of the car, and as we bumped and jostled over cobbled or dirt roads, I could see between the door seals and the car, and I would worry about losing the groceries if they opened. My parents knew the doors were locked, albeit loosened by the constant jarring, but they were certain it would hold closed and keep things in. However, they didn’t know what else they could do to assuage my concerns, so they put me in charge of letting them know if the doors opened up. It helped me feel in control.

One weekend, and I have no context to couch it in, my mother was in the bedroom with my older sister and I. My sister was four years older than me, and my mother felt for whatever reason I don’t have the context of, it was time to talk with her about ladylike behavior, dress, and modesty.

I shouldn’t, probably, have been there for that conversation, but I was there, and I listened. And I took it far more personally than my mother ever imagined.

Of course, it’s been many decades since that lecture on modesty, but what I took from it clung to me then, and still clings to me now, even knowing where it originated and the twisted way in which I interpreted it backing it up with my own experience that nobody else knew of.

We were girls. Little ladies. And we should act like such. If we’re wearing a dress, we don’t play on or hang upside down on the monkey bars where others might see our underwear or under our clothes. We needed to sit with our knees together or legs appropriately crossed.

Of course this made sense to me. Crossed legs and protecting underwear-covered places! Why didn’t she understand why I wore underwear to bed?

But then my mom added the “why” … and it hit me like a bull in the chest. Because not only were we little girls, we were little white girls, and while my sister had brown hair like everyone else, she was fair-skinned and freckle-faced and had green eyes, and I was even worse because I had blonde-hair and my eyes changed between blue and green, and my skin was paler than pale.

We already got attention for just being who we were, without adding to it by not behaving in a ladylike manner.

My mind began racing. I stuck out no matter what I did or how I dressed, but now I had an added responsibility! I determined then and there that I would do my very best to hide myself: to be as invisible as possible.

But, in that same moment, I also deeply sensed that my own body – my very beingness – was a curse that betrayed me and sabotaged my safety.

And that is where it truly began.

What does this have to do with religion? It ties in … I’ll get there, but right now, I’m going to sit on this and process it a bit.

Over the past year or so, I have been becoming more aware of how my religious background has played into my weight struggle.

It’s really twisted.

First, though, I want to be clear that I don’t want to bash anyone. My struggle is mine and it is deeply intertwined with my own interpretation of what I was taught to believe while I was growing up.

I guess I have to start even earlier, though, because the religious teachings were also interpreted by a young mind that had already experienced what no child that age ever should: I was sexually molested by a group of young men over the course of four years, that finally ended when I was raped by one of them, at the tender age of six.

Clarifying again — It was NOT a family member or anyone I knew. It wasn’t anyone of the religious belief system under which I was raised. Nobody even knew it happened except the ones directly involved, and I had no way to explain it or tell anyone. It was far beyond the scope of my naive and innocent understanding.

….but

it really goes back even further than that, to an unknown diagnosis that didn’t come to light until I was in my fifties: I am autistic.

I also grew up a Caucasian minority female in a Latin American country where most everyone else’s skin was a beautiful tawny brown, they all had brown or black hair and brown eyes, but my skin was super pale – as white as could be. I had streaky blonde hair and my eyes changed color between green and blue. I stuck out like a beacon. (Or a target).

And the time frame was in the days when gaslighting and victim-blaming were the norm rather than the exception, and not even remotely understood to be as devastatingly harmful as they were, and it was a generation when people assumed children would forget trauma if it was swept under the rug.

There are many, many deep and sensitive layers at play in this whole twisted mess that has become enmeshed with my weight. Picking it apart is much like having to use a straight pin to tediously disentangle a drawerful of long and delicate – but incredibly jumbled up – necklaces.

Autism. Sexual Abuse. C-PTSD, and all the tiny but super clingy tendrils and tentacles that branch out from those things … topped off by a very conservative evangelical Christian missionary upbringing, with an extended family heritage made up of generations of missionaries, preachers, and religious teachers.

So … there’s the thumbnail history that fed (pardon the inadvertently appropriate pun) into my personal present-day weight issues.

It is late and this is already long.

To be continued ….

Do we use the things we can’t do anything about as an excuse to not do the things we can?

Everyone knows it is important to keep our focus on forward progress with those things we are capable of improving – but how do we remain positive, upbeat, and forward-moving when it comes to personal challenges we encounter that we cannot change? What then?

I do not have an answer. It is something I am exploring and puzzling over on a daily basis.

Maybe writing them out would help – like a list of pros and cons, but with the headers of

“I can do something about this” and

“I cannot do anything about this”

I CAN DO SOMETHING ABOUT THIS

I can be mindful of what and how I eat and drink: • Being sure I am consuming healthy, nutritious foods • paying attention to my food as I eat it (Not eating while I’m doing something else) • fully chewing and savoring each bite before swallowing it • hydrating adequately throughout the day.

I can move more: • standing more often than sitting • taking the dog for a walk instead of just letting her out to play in the back yard • creating a place to set up my Pilates equipment so it is always ready to be used instead of having it tucked away all the time, unused • scheduling a time to exercise in a way that I enjoy, every day

I can improve my sleep habits: • Having a good night time routine conducive to relaxation and sleep • going to bed at a reasonable hour • not getting up if I wake up during the night (unless to use the bathroom, obviously) • getting up at a reasonable hour • being active enough during the day to be tired enough to sleep at night • avoiding foods or drinks that will disrupt my sleep routine.

I can be more aware of self-sabotaging thoughts: compassionately exploring the source of those thoughts and demystifying them, thereby taking away their power • choosing not to dwell on thoughts that I know will derail what is in my best interest for my health • re-routing my self-talk toward positivity instead of sabotage.

I CANNOT DO ANYTHING ABOUT THIS (or have done everything I can about it but it will never go away)

Incurable Health Concerns that legitimately challenge my ability to lose weight: Graves Disease (Thyroid) • Lipedema (painful, immovable fat) • Arthritis (painful, no cartilage left) • Prescription Medications required by medical conditions that won’t go away, known to create weight problems (topical steroids, blood pressure meds*, thyroid meds) • Autism (executive function issues, information overload, anxiety, and overwhelm)

*if the weight drops it is possible the need for the blood pressure meds will also go away, so this is sort of both sides

I will explore this whole thing more … I think it’s important to be realistic and acknowledge the struggle and challenges. I don’t think we have to dwell on what we are unable to do.