Switching Off Survival Mode

I'm currently in the stage of my cycle that causes my empathy and creativity to be in overdrive, but also heightens my feelings of deep sadness that fuel a compulsion to save the world from pain and suffering. It also causes me to feel immense fatigue at the thought of taking action, so all I can do is dream of solutions that quickly fizzle out in my brain.  This is the stage that takes places days before my period begins. Also, the pain probably influences my brain too... pain influences everything. 

Here's what I can't stop thinking about: 

I keep observing that people are living in "survival mode." We are a collective group of individuals all suffering independently because we've been trained that we must be 100% self-sufficient on our own without ever depending on anyone else. The reason this is so stressful is because it goes against human nature. We're a social and dependent species. It's in our DNA to need other humans for our survival. We're trying so hard to accomplish being totally independent, but as a result, we forgot how to be dependable for other people who we need in our lives. 

As a result, people are recognizing that they need healthy attention, but they don't know what healthy attention looks like, so they'll be satisfied with any attention. So they're settling for acting in unhealthy ways in order to attract unhealthy attention, because any attention feels better than no attention. It's like settling for eating a bowl of candy for a meal simply because you don't know how to find a meal of steak and veggies to eat. 

What all people really need is to meet their dependency needs. This looks like: respect for the soil we stand on and the natural environment of the earth that we live in, a reliable small community of people to belong to, a skill or value to contribute to people in our community, and a curiosity for each other that inspires us to care deeply about each other above anything in our lives. We need to care about our community more than our jobs, our money, and our ambitions. Our communities should create our jobs and the role we fill in our small local society. Our communities should meet our needs. 

Until we learn how to be people who serve each other, we're going to starve to death for healthy attention. We're going to keep making bad choices in our relationships, personal ambitions, goals, and our moral values. We're going to continue to view other people as "toxic" because they get in our ways of living our own personal lives according to our own personal standards. We're going to continue to teach each other to cut "toxic" people out of our lives, so that we can each do what we want with our lives. 

Don't we understand that we're creating "toxic" people by denying other people respect? The less respect we give to each other, the more these other people will ferment in their own self-pity and insecurities that causes them to develop poor coping mechanisms that lead them to acting to "toxic" ways. If we don't want to deal with toxic people, let's encourage each other to be better and lead by example, right? We need to develop a culture of respect.

We should reframe our minds to view other people and ourselves with curiosity. When you learn to wonder "why" you behave in certain ways, you'll start to observe your real needs. Your real needs are what you need to be mentally, emotionally, spiritually, and physically healthy person. Your real needs are NOT what you need to be a financially successful person. You will probably find that your real needs are in conflict with how we're forced to try and survive in society, because our economy treats us like robots and not as humans with real needs. When you know your real needs, you can communicate your needs to others. Then you can observe the real needs of other people and choose to help them meet their real needs. If you're really lucky, savvy, or financially blessed, then you can develop your financial security in ways that help you meet your real needs too. 

I know I'm being vague. This is mostly just stream of consciousness to see what comes out of me during this moment of creativity. Perhaps I'll write a more well thought-out book about this topic. 

My point is that we're in a collective health crisis because we're denying our "real needs" in order to survive in a society that is unsurvivable for most people. The ONLY way to move forward as a human race and stop living in "survival mode" is to learn how to live in small communities that care for each other again. We can't take on the weight of world, but we can help lift the burdens of our small local communities. We can do our part in our small ways, and that's all we're really capable of doing. We don't need to be global people. That's too huge of an ask for anyone. 

I am a firm believer that living in chronic "survival mode" is fueling our chronic illness pandemic. All the bad foods and poor diet, disconnection from nature, artificial lights, and modern problems are definitely huge contributors to our health crisis. I'm convinced that the stress of modern life is the primary root cause, before all the other factors. If I told you to reduce stress in your life, tell me how you would actually be able to do it? How can you reduce stress when you can't eliminate all the overwhelming problems of modern society from your life?

This just appeared on my Facebook feed, and I think it's a good simple example:

Think about how insane it is that we've normalized this extremely high-stress situation: DRIVING. When we're driving on these busy roads with high traffic, we must be on high alert, otherwise we can literally die or kill someone else. One mistake can be deadly. Yet this is NORMAL now. So we really need to trust each other to be on very high alert, right? And yet, people are past capacity in how much stress they can tolerate in their lives. Your mind wanders a lot while you're driving, right? You think about all your needs and problems while you're driving, right? Yet we expect other people to be fully focused on the roads too? Our day-to-day lives are similar to this. We're treating other people as being fully competent, not with the grace and forgiveness that they need because of their quiet internal suffering. Let's stop forcing people to live in high-alert, always ready to survive anything at any moment. 

I understand that many people are dangerous. I know that there are plenty of people who will try to rob me, harm me, take advantage of me, and abuse me. I know that I must stay "on guard." I know I can't simply trust people. I do know, however, that we really need to act with a lot more grace, understanding, and compassion towards others. If we want people to be better, we have to give them room to breathe and be better. The more we expect of other people, the more they'll act in "survival mode," which leads to lots of toxic survival behaviors. 

I can tell you one thing for certain: My body creates so much of its own stress from surviving all my health issues, that I really can't tolerate outside stress from the world. I shut down from a little too much stress. I actually saw a great video from a doctor about this in connection with endometriosis:

So I am not at all embarrassed by the fact that I'm a 38-year-old who chose to get divorced and move back in with my parents. This was very important for me on my healing journey. My marriage was not an environment I could heal in or reduce stress in (when it should have been my sanctuary where I could be safe and heal.) We had very different priorities in life, and his ambitions dominated the life path we took as a couple, which caused me immense stress that I couldn't handle and left me starving to have my "real needs" met. I'm not being negative about him, but I had to finally acknowledge that we were not compatible and could not meet each other's "real needs." This was a very important decision for me. Living with my parents relieves a huge amount of external stress for me. I prioritize a healthy relationship with them and they do the same with me. It's a great environment for me. If I didn't have a place to go where I could reduce stress and feel "safe," I honestly think I wouldn't be here right now. My level of stress was so high that it was doing irreversible damage to my body, heart, mind, and soul. He may have wondered why I didn't want to attend anything social with him, and I understand the answer now: my personal needs were not being met, and that was causing me so much stress that I really couldn't process other people. I didn't have the capacity left for handling even one word from another person. I was starving to meet my personal "real needs." And now that I've been living with my parents for nearly a year, I'm feeling my stress meter lowering slowly. I'm still not ready to be very social. I tried, and found out quickly that I'm not healed enough yet. But I'm improving a lot! 

I was really messed up from a bad marriage. I'm understanding it better and better as time goes on. I was seriously starving for healthy attention.

I'm still catching myself oversharing too easily, as a probe to see if I can trust people.

I'm starting to feel anger where I used to feel numb, and I'm allowing myself to feel that anger now, when I should have felt it years ago.

I'm uncovering more and more emotions that I couldn't tap into while I was only trying to survive, and now I'm slowly learning to feel myself instead of just taking quick action for fear of death or failure.

I'm learning how to breathe when I used to hold my breath - literally, I noticed that I stopped breathing when I had certain thoughts, and now I'm realizing it, so I'm teaching myself to breathe while I have those thoughts now. 

But I'm also recognizing my emotions and behaviors in other people. I see how many people are living in "survival mode." Society is abusing us by requiring us to meet unrealistically high expectations, and we are abusing each other just to try and survive and get ahead in life. We've learned to be in competition with each other instead of being team (community) that encourages each other. This pattern has to stop or the human race is going to kill itself off. As it is, we're unlearning how to be a strong race of people that can thrive, and we're shifting into being a race of people who only knows how to manage day-to-day with no regard for each other. 

We're losing our ability to care about each other because we're at capacity trying to care for only ourselves. 

What are some of my favorite ways to be more in-tune with my "real needs" and help myself meet them? 

- Gardening! Gardening puts me out in the sun, in nature, in the soil, and touching plants. I'm observing the life forms, studying their needs, taking care of them, and helping them thrive. In turn, I'm getting lots of zucchini, cucumber, tomatoes, and sugar snap peas to help sustain me! 

- Creating a routine of cleaning my space. Washing my dishes, picking up after myself, managing laundry... you know. It's how I'm showing myself that I can take care of myself in a healthy way without being overwhelmed. If I don't feel capable of doing chores, I don't stress myself about it. I simply do it when I'm feeling better. 

- Part-time work in a very positive environment where we all agree that it's important to take care of our health! We're a small team that cares about each other. That's worth SO MUCH. It's such a good environment and I really believe in our mission! How many people can say that?

- Going for walks with my parents and having good conversations to deeply connect with them. Family is super important, and doing healthy activities with each other is great motivation. 

- Gaming!!! Why? Because this allows me to have complete and total focus. It's training my brain to stop being hyper alert to outside things. It's training my brain to have longer attention spans. It's training my brain to problem solve without stress. You know what games are actually phenomenal for rebuilding attention spans? Older turn-based games like the original Pokémon games, Final Fantasy 1-12, Sim City, Zoo Planet, and so on. Age of Empires 2 random maps are like calm meditations for me. Octopath Traveler games are wonderful too. Very healthy for retraining my brain that's been trained to be hyper alert. 


The things that ARE NOT working for me:

- Meeting new people. It's too much. I tried. I need to be investing in the relationships I have with close people in my life. I keep accidently ignoring and ghosting people, and it's really not by choice. I think to myself, "I don't have the energy and focus now, I'll reply a little later." That turns into days, weeks, months... It's not intentional. I'm getting overwhelmed way too easily.  If I've done that to you, I'm sorry. Sincerely. I don't have the energy and it's not about you. I'm just not ready yet. 

- Spending time listening to people who just want to complain, talk about all the negative news, and talk about how much they hate people or groups of people. I'm someone who cares deeply about moral justice, but I don't want to waste energy on things I can't control or negative energy that doesn't help solve anything. If you're someone who has so much rage in you that you feel a need to release in through insults, bad attitudes, disrespecting others, constant complaining, whining, bitching, and moaning... then go talk to a therapist, not me. Please. Don't drain me with your negative energy. This is toxic behavior that will cause people to cut you out of their lives. Don't be toxic. Be a positive contribution to society instead. It's possible to be against something in positive ways. 

- Treating myself with food. It's just causing inflammation, weight gain, poor sleep, anxiety, and extra pain. Food can't be the way I reward myself. I need to be super disciplined with food. I must reward myself in other ways. I also have to be careful not to do it by spending money I don't have. My budget is pretty tight. 

- Not following a routine. I'm very much a person who listens to my feelings and does what they say, so thankfully I often feel a strong sense of responsibility, ha! I have to be really aware of the fact that if I do what I feel like, that I won't go to bed, I won't eat well, and I'll end up feeling so much worse. My anxiety will become a problem for me. I'll get overwhelmed by all the things I have to do and haven't done yet. I really need structure to keep my responsible for myself. 

Tom Odell - End Of Suffering

At the end of suffering there's a door There is nothing, and everything and more A sticker on the window saying something like You've got nowhere left to go, take a step inside At the end of suffering there's a room There's a child's crayon drawing of the moon I light my cigarette I lean against the wall I feel that resignation There's nowhere really left to fall Ooh At the end of suffering there's a home And the only way you get there's on your own I lay down on the sofa Turn on the TV Shut my tired eyes Hopelessly, I dream At the end of suffering there's a world At the end of suffering there's a world I stumble to the window Pull the curtains wide Spent so long in darkness, God, it's good to see the sun It shine Ooh Ooh

Upcoming Surgery

I now have 3 blogs that are almost finished, but I'm starting another new one. Why? Because this topic is overwhelming me, so I want to write about it now. 

I need another surgery for endometriosis. I am scheduled for an endo-specific MRI in 3 weeks, and then I'll schedule the surgery after that. My last surgery was in 2018. Now in 2026 my surgery will be more advanced. I learned a few things to share here:

1. The last time I had surgery, I had an ultrasound first. That ultrasound did show possible adenomyosis, but my doctor never talked to me about it. It's likely she wasn't trained in it. My new doctor told me about it after reading the notes. I also learned that my ovary was tied to my fallopian tube with endo adhesive, and it's possible that they are stuck together again. So I had another ultrasound a few weeks ago, and it still shows probable adenomyosis. I was becoming suspicious of adenomyosis on my own because 1-3 times per year I do tend to bleed heavily for more than a week during ovulation. Last month I bleed through 2 periods and two ovulations before it finally stopped. 

My ultrasound also showed free fluid in a place where I had endo removed before, so it's probably endo. It also showed that my right ovary is 3x larger than my left, and the cyst that was previously removed must have grown back. My last surgeon warned me that she couldn't remove all of the endo on my ovary without removing the ovary, and when endo isn't fully removed, it grows back. 

2. My doctor suggested this new type of MRI that's specific for finding endometriosis. It can't see it all, but it should help locate some of it before she does surgery. She said this helps her prepare, and possibly schedule a second doctor to help if the MRI shows it on my colon. Regular MRIs cannot see endometriosis, but this new version might. It might also help diagnose what type of adenomyosis I have, which could help me choose treatment plans. 

So what is adenomyosis? Basically, it's like endometriosis (it's not identical, it's more of a cousin), but growing inside of the uterus instead of outside of it. It cannot be seen during surgery. Modern imaging might be able to detect it. Apparently the only official way to diagnose it is by surgically removing the uterus and opening it up to see if it's in there. Adeno causes extremely heavy bleeding and increased pain with contractions (like during the period). It's also a known cause of chronic fatigue, like endo is.

3. After the MRI I'll have surgery, but I hope to delay it if possible. I'm going to attend a wedding and work my job for a couple of weeks because it's a busy time of year at work. Then I'll do the surgery, and I'm expecting I'll need at least 3 weeks of recovery time, maybe more. If they find something very urgent that needs to be surgically handled, then I suppose I can't wait. My pain really has increased too much and I know something is wrong, so we'll see what they find. But I have to wait weeks for the MRI anyway. 

My new doctor is much more advanced in endo surgery than my last (I'm not saying my last doctor was bad - she did as good of a job as possible in that situation), and she told me that if I choose to travel to one of the best surgeons that she will help refer me and get me in. I'm torn on this one, because she may be capable of doing a really good job for me and she's right here in town. I really don't want to have to travel. She was trained at Mayo and is using the latest techniques, and she gets all the continuing education available. She isn't an endo-specific surgeon, but she is much more focused on endo and more highly trained than the average gynecologist. The surgeon we choose is extremely important, because if the surgeon isn't capable of removing ALL of the endo, the endo will come back and we'll need more surgeries. That's what happened to me, and it's normal. The best surgeons reduce the risk of needing multiple surgeries. 

This doctor, if I choose her (and I probably will, depending on the MRI results,) will do a different surgical method than my previous surgery called a Peritonectomy, or Peritoneal Stripping. I understand that the recovery period is longer.  In this version, she will remove the top layer of my internal skin. That will help remove the roots of the endo that might be invisible to our eyes and cameras. The tissue will regenerate, but I understand it's going to be a slow and painful process. 

I can't find a good website to explain the peritonectomy surgery, just various studies about it which are not in lay-people terms. I did find this video that briefly explains why it should be done:

4. Treating the adenomyosis? This is what I'm really unsure about, especially since I've been trying to treat it naturally for so many years, and because of where I live I've lost access to treatments that were helping (like acupuncture!) I have 2 medical options: remove the uterus, or insert a progestin-only IUD like Mirena. I'm not willing to remove my uterus unless it's trying to kill me, and it's not that bad right now. I'm really uncomfortable with the idea of the IUD, but I understand it. I already use bioidentical progesterone, but it can't make it into the uterus where it's needed to treat the adenomyosis. An IUD is used because it can release Progestin inside the uterus where it can do its job. Natural progesterone can't be used because the half-life is too short. I would need to replace the IUD very frequently, which is unsustainable and very painful. Synthetic Progestin has a much longer half-life, so it makes the IUD sustainable. 

But am I willing to use Progestin? I really don't want to because I'm too familiar with the side effects, and I tend to be extra sensitive. I don't know for sure, but I think I prefer the heavy bleeding and pain over the change of personality from the Progestin. I don't like the increased risk of ovarian cysts from it too. I don't like how it changes our sense of smell and cause weight gain too. I'm not a fan of the risks. 

I have read that there are newer treatments for specific types of adeno, such as a new type of ultrasound machine that can help shed it off. I don't know what type mine is, and I don't know if anyone locally offers that treatment. I need the MRI results first. 

What can I do naturally? Well, maybe I need to stop eating goat cheese and be totally dairy-free again. Maybe I need to increase my fiber. Maybe I need to go totally carnivore. Maybe I need to reduce my sugar intake to zero again. Maybe I need glutathione IVs again. Maybe I need to drink more red raspberry leaf and hibiscus, except that my blood pressure already runs low. Maybe I need to do daily castor oil packs. Maybe I need to go back on my previous herbal blend pills. Maybe I need to travel for an acupuncturist who knows what they're doing. The thing is, I've done all this since 2013. I was able to improve about 50% at best (which is really good!) If I've slipped into some bad habits and that's why my symptoms are increasing, then I can fix that. But the fact is, I was never able to fully manage naturally. And I was working with excellent natural doctors. 

So, I'm undecided on what to do about the adenomyosis. My head is too tired, and I think I'd prefer to get the MRI results first anyway. 

There's more and more research about endo coming out - such as the estrogen and histamine link, the mast cell link, the new saliva biomarker, and so on. Maybe adeno will be similar and we'll find ways to help manage it soon. 

Alexia Evellyn - Hold On

Sometimes we just need power ballads to help us find our strength to continue being women,,, because this isn't easy. I'm numb to the emotions of the pain after all these years, but I still have to feel the pain. I just surrender to my period every month and don't try to live my life until the worst passes. I'm a veteran at this, but I'm so tired of it. I'm scheduling my whole life around my periods, and so I don't like to plan my future because I never know if I can really be available for it. 

I dreamed last night that I was locked in a prison cell with no way to manage my period, so I laid on the floor and let it all bleed out into a giant pond in my cell. It actually felt like a pretty good analogy for my life. And so, am I crazy to want to keep my uterus? What if I explored the idea of letting them remove it so I can be free? And then I'll never be able to have children... that's not the life I want. All I ever wanted in this life was a loving husband and children. I'm not ready to abandon that dream. Can you understand the distress this puts me under? It's enough to break a woman. And I think I did break a few times already. And yet, I don't stop dreaming of the life I wish I was living. A simple life full of love and family. Maybe, just maybe, after this surgery I can make it reality. 

Endometriosis Awareness Month: A Glimpse Into My Reality with Endo

It's endometriosis awareness month. 

First, here is an awesome Facebook post with some info about what Endo is and what it is not:

I'd like to write about my current cycle in honor of raising awareness. 

A little personal history, for context.

I've had extreme periods since I was 17. When I started to use menstrual cups, I counted how much I bled on the first day of period over years. I normally filled my size 2 Diva Cup 3-7 times full in the first day of my period. The average person fills their cup 1-2 times full through their entire period. Along with this heavy bleeding was excruciating pain. Full body pain. I could move a toe and feel it cramp up my leg and trigger pelvic pain that felt like someone stabbing me with a knife repeatedly. I also had relentless diarrhea, which was super painful. I could sit on the toilet and feel my heart rate skyrocket to the point where I was seeing stars, seeing my vision slowly go black, and I would gasp for air. All while my body purged itself beyond my control. Yes, I've fainted from all this. I took up to 12 ibuprofen on the first day of my period for years, and it didn't work well. I kept taking more hoping for any pain relief at all. I was like this for years and years. Finally, a doctor told me my liver was in poor condition, and I admitted taking all these painkillers (and a daily Allegra D) to him - he warned me to stop because that was causing a lot of damage to my liver. So I was left with no real option for managing my allergies and pain in the conventional way. (I always refused birth control as an option for religious reasons, but also because I read all the side effects and didn't want them. Doctors did drop me because I refused birth control.) 

In 2013 I started to work with a Naturopathic Doctor in New Hampshire. We did a lot of work to improve my health. By following his advice, over a few years my periods slowly became about 50% less intense. My bleeding reduced down to 1-3 full Diva cups on the first day (still heavy, but manageable.) My pain was still intense, but he made a tincture for me that actually worked. It blocked estrogen receptors, which did reduce my pain a ton, but it also knocks me out. So when I take it, I sleep for hours through the worst of my symptoms. He put me on natural progesterone and hormone-balancing herbs, which made a big difference over time too. He changed my diet, which made a big difference. My PMDD was not as long or severe, my cycles were more regular, I didn't bleed as heavily, I was more stable during my periods with less fainting issues, and my level of fatigue wasn't as strong anymore. But I stopped getting better. Everything improved about 50%, which was miraculous to me, but I stopped improving more. 

In 2018 I was first diagnosed with POTS, and the next week I had a $14,000 laparoscopic surgery to look for Endometriosis. My surgeon was a local gynecologist doing the Davinci Robotic surgery. She was sure she wouldn't find endo - in fact, she was doing the surgery just to help me stop feeling convinced that I had it. She told me it would be a 30-minute surgery. She was wrong. It was 3.5 hours long, and she did find endo. She took a biopsy and confirmed it in the report, but refused to give me a "diagnosis" in my chart. Why? I don't understand that part, seriously. So when doctors see my medical records they only see the surgery, but not the result. Anyway, she removed endo from my Pouch of Douglas / Cul-De-Sac, which was probably where the majority of my pain was coming from. She also found it on my uterus and ovary. She was unable to fully remove it from my ovary without removing the whole ovary. The problem with endo is that if you don't have it fully removed, it grows right back. She also found that my uterus was tilted backwards. In the year after the surgery, my periods were the lightest they had been in my life. My pain was a little better too. But the results didn't last longer than a year. 

After my surgery, I was still bloated from all the air they pumped into me and my scars were bruising. 

In the last few years, my periods have been slowly getting worse and worse again. My PMS has been turning back into PMDD again. My cycles are less regular. What has changed? Well, a lot of stress in my life. I've stopped using the herbs as regularly. My diet has loosened up a little. And I think, most importantly, I've been unable to have regular acupuncture treatments in the past 2.5 years. Acupuncture made a huge difference for me.

I've always had to call in sick on the first day of my period. I never improved enough to be able to work on the first day of my period. I had to miss very important events in my life because of it. And despite all the medical care I've been though, all the extremely strict diet and lifestyle changes I stuck to for years and years now, and all the praying and therapy I've tried, nothing helped enough to give me a "normal" first day of my period. It always made me so sick that was bedridden with major pain, fatigue, and vertigo for the day. 


And now, for the present.

So let me talk about my current cycle, to give a glimpse into the turmoil I live with every month. I use the Clue app on my phone, and I pair with my Oura Ring. I'm not good at tracking all my symptoms, but I am very good at recording the first day of my period. So let's look at Clue for this month:

Each dot represents a tracked symptom per day. The red phase was my last period, and I only tracked for 3 days of it before I forgot. I bed 5 days, I think. The days with 2 dots are because of information my Oura Ring automatically sends to Clue: sleep and body temperature. Then the blue phase, which is ovulation, you can see extra dots. That's because I bleed dark purple thicky sticky blood for 3 days during ovulation. Then, when the 3 dots appear again, is when I started to record my PMS symptoms. I had symptoms for a few days before I started to record. I had acne, bloating, mood changes, scalp tenderness/ sensitivity, and fatigue issues, but they were not bothering me enough to think to record it. So I've had about 10 days of PMS symptoms. What does that mean for me? It means gaining a pants size in bloat, relentless hunger (even eating high protein with some extra carbs), very sensitive mood that causes me to feel everything too deeply, moments of unprovoked anger, days of irritability, feeling super anti-social, withdrawn into my head and difficult time being in reality, random cystic acne around my mouth and on my chest, ringing in my ears, deep fatigue that caffeine can't cure, nights of insomnia and then nights when I sleep 13 hours, very achy deep throbbing pain down my legs, vertigo and dizziness that makes me really unbalanced, sharp throbbing cramping all over my pelvis, feeling a bowling ball growing in weight in my pelvis, unpredictable bowel movements, throbbing aching teeth, swollen tender breasts that hurt to touch, sharp nerve pain in my breasts, inability to completely empty my bladder, and I'm sure there are symptoms I'm forgetting. 

 My period is late. "Late." I've had years with my average cycle lasting 30 days, and years when it was 35 days on average. I've just been in a 30 day average cycle this year, so now this looks late. 

The problem with me being late is that I've had many days of symptoms that marked what should be the beginning of my bleeding: major cramping, vertigo, and fatigue followed by an improved mood. All the symptoms that tell me it's time to lay in bed with my heating pad and stop doing anything else. Except that my bleeding didn't start. I've been in this state for about 5 days now, feeling on the verge of starting my bleeding. I had two shifts at work that were difficult for me to endure, but I didn't get bad enough to have to go home sick. I was mainly concerned about fainting, so I drank lots and lots of salt and took licorice root pills to keep my blood pressure high enough. 

Since I can't read my symptoms reliably, thankfully my Oura Ring gives me a clue that I can almost rely on:

(I recorded my period start day one day earlier last month, so the apps don't agree. That's because I started bleeding a tiny bit the day before, but without all the symptoms of my first cycle day. So I recorded a different day in each app to help me predict my next period.)

Ok, look at the body temp graph. The line is my baseline average body temp. Each day marks if I was higher or lower than my average. I tend to increase by a half degree to a full degree in the last 5 or 6 days of my PMS, and when I see my body temp drop below average, I'm usually ready to start bleeding. So you can see why this month is confusing: 3 days ago my temp dropped, but not below average. Yesterday it did drop below average, and I had all the symptoms that said my bleeding should start (including my breast pain going away.) But I only bled a tiny little drop all day. Ok, so today my temp was below average again. I checked my Diva cup this morning and it had a small stream of very dark black blood on the edge. I haven't bled more since then. 

I called in sick to work today. I am only writing this blog because I drank enough green tea to help warm me up, and I hoped the caffeine would encourage bleeding. The reality is that I'm sitting very still at my computer to type this. I'm taking lot of breaks to breathe and rest. I'm getting really dizzy at moments. I'm getting immense pain for brief moments. There's no way I can stand up for 5 hours to do my job like this. And I won't improve until I bleed. I am in limbo. I'm unable to function until I bleed. 

This is a glimpse into my reality with endometriosis. When I say it dominates my life, you can see why. I get maybe 1-2 good weeks per month where it doesn't limit me or control me. 

Florence and the Machine - You Can Have It All

This album was about her ectopic pregnancy and miscarriage that nearly killed her. She wrote many songs about the grief and the reaction of her fans. It's an album that will make you cry. This song, although about miscarriage, reminds me a lot of my experience with endometriosis. "Am I a woman now?" Is this what it means to be a woman? The loss of a child/ inability to have a child. Being controlled by our bodies. How to exist in the circumstances of our bodies?

Entering 2026!

Out with the old year, in the with the new year!

The view outside my window Christmas day. The fog froze to the trees! So pretty.

But first, I'm sure that Facebook and Google collaborate to manage my Facebook feed for me. I told my Oura Ring, Clue App, and Fitbit that my period started. Now 50% of my feed is about endometriosis! It's not necessarily a bad thing, right? I get to learn all sorts of facts from surgeons and doctors making reels about it. But there really is no such thing as health privacy anymore. While I heavily rely on these apps to help me understand what is just PMS versus a sign that I'm actually about to start bleeding (therefore be sick in bed for most of a day), I also know that I'm a data mine that I'm paying to contribute to. I pick and choose my battles with technology. Do you all think it's worth using technology to monitor your health, knowing it's never going to be private? Oura probably helps me the most, but Clue's tracking is the best. Fitbit is almost useless, but I do it anyway. 

I should write an updated blog about my Oura Ring, since it's changed a lot over the years with all their updates. I do find it very helpful in some ways, and less helpful now in other ways.

It's the last day of 2025! I woke up in 2025 in Gaffney, South Carolina. In the middle of the year I said goodbye to the South. I will wake up tomorrow (2026) morning in Bismarck, North Dakota. 

Some observations from 2025:

❄ I feel less symptomatic in the cold weather. I know it seems backwards, because my body runs cold from poor circulation, but the heat triggers more symptoms for me. I can always warm up when it's cold. I can sit in front of the fireplace cuddling with a blanket. I can wear a big snuggly hoodie. I can drink hot tea. I can use my sauna or sit in the bath. When it's hot and humid, how do I cool down? I sweat very easily with pins and needles prickles all over my body from the heat, and my heart races like crazy. I sweat just from standing up and my heart starting to race. Cold water triggers symptoms for me, unlike warm water. Removing clothes makes me too cold from the temperature change, which causes my nerves to ache. The cold weather might make me shiver, but I can manage it. I can't manage heat. 

✌ The people I spend my days with have a HUGE impact on how I feel. This actually has more to do with me than them. I tend to unconsciously adjust my personality according to the people I'm around, but I also spend energy keeping a shield up to protect myself from energy I can't handle. Some people are full of anxiety, frantic high-strung vibrations, contagious depression, anger that poisons their every action, and other vibrations that I can feel, even if they don't say it. Negative energy tends to feed on my attention, which requires my energy and strength. I don't want to absorb the vibrations, but I do. I'm built that way. If I shield myself, I drain myself anyway. So it's extremely important for me to choose to be around people who are peaceful, respectful, loving, have good vibrations, and lift everyone around them. Choosing to be alone can be the healthiest thing for me too. I'm introverted, so I need that recovery time regardless of my chronic illnesses. But the right people don't drain me. The right people can help me live and enjoy being who I am, even when I'm in pain or feeling unwell. I have to choose my people very carefully. 

(I'm not saying that people are bad because I don't tolerate their energy well, and I'm not saying that people going through tough times are bad for me. It's all about how well a person can manage their emotions, because unmanaged emotions are what leak out and affect people around them. When a person who understands how to love and respect others is grieving or in pain, their energy doesn't sour and drain me. When someone hasn't worked on their emotional intelligence and is still emotionally immature, they tend to drain me no matter what their life experience is in the moment - it's not because they're bad, it's because I don't have the energy to be what they need me to be to support them.)

💸 The better I feel, the more of a sucker I am for advertisements for things I might be interested in buying. The worse I feel in the moment, the less I care. The internet is a dangerous place for me to be when I'm feeling some mental energy, because I will not use my energy well online. I might not actually buy anything, but I will window shop every sale and seriously consider some items. Then I regret spending my usable energy for the day that way. Totally wasted on being a sucker for social media ads. It's actually a big reason why I'm using Facebook less. I spend time in specific groups on Facebook, but I'm avoiding scrolling my newsfeed now. I do want to know about local businesses and events, but not at the cost at seeing loads of ads and celebrity gossip that I didn't ask for. So therefore, when I'm feeling well enough, I prefer to skip social media and go straight into gaming. If I'm going to spend my energy at my computer, gaming feels way better. If I feel well enough to do something more than sit at my computer, then I should actually physically do something like use the treadmill or clean or cook or fix something, or socialize. I've had more energy available to do things like this since moving back to ND! 

🎶 I love specific music at specific times, but silence is actually my favorite for regulating my nerves. Music stimulates or blocks my senses, which can be really helpful at times, especially while driving or cleaning. But the best way to preserve my energy is to be in silence, without the need to feel alert. I can't recover well unless I'm in silence. I used to use ambient music to help me rest, but mainly I did that to block out everything else I could hear so I could dull my senses. Silence is better. This isn't a negative comment about my husband, but it is just a fact: he always needed something playing in the background. Music, TV, radio, podcast, just anything to focus on. That was fine for him, but I needed a lot more silence in my life. I can get that here in ND.

🐔 I really loved my pet birds. I had 2 cockatiels (that's why I chose the chicken emoji, ha!) One was at least 30 years old, and I've had him since I was 7 years old. The other was 12 years old and she bonded to me. I had to give them to a new home (I don't want to explain, but I had no choice.) I loved them so much. But they were a lot of work, and I often didn't have the energy to take care of them properly. I felt a lot of guilt about how little attention and care I gave them sometimes. As much as it broke my heart to give them to a new home, I also felt some relief. They went to a home where they get more attention. I don't have to drain myself on cleaning their cages, which was a big ordeal! I don't have to run to them every time they call for help. I don't have to be on alert 24/7 for their sakes. I am my only responsibility now. Right now, this is therapeutic. I'm getting to have a break. Please understand that birds are like 3 year olds that never grow up, and I've been caring for them my entire life. They're not like children who have needs that evolve over the years. I'm happily accepting the rest from the responsibility right now. I lost my ability to be alert. I'm burned out. I do know that I'm going to be deeply sad about losing them once I recover though. I don't want a new pet as a rebound... I want a family. I want a husband and children. That's another story. I'm choosing not to feel guilty. My birds are with a good family now, and I'm where I need to be to heal. 

🛣 So many people say it's brave to choose to leave my marriage. I've been reflecting on that a lot, because I don't know if "brave" is the right adjective for me. He wasn't abusive, bad, mean, or anything of that nature. I wasn't completely dependent on him, because I was always able to come home to my parents, which is a great situation (not a last resort like for many people.) It wasn't brave, it was simply just difficult to leave because it required effort. It was easier to stay because it was familiar, and we didn't have problems getting along on a day-to-day basis because we're both nice people-pleasers. But South Carolina taught me that it wasn't actually easier to stay. He said my illness was like the 3rd person in the marriage, but I think his career was the 4th person in the marriage. His career was most important to him, and his career was not easy for me because it meant a lot of instability, uncertainty, and unnecessary stress. It costs a lot of money to move - SO much money. His career isn't stable enough and doesn't pay enough, so the risk of moving for jobs often is too high. He was sad that I didn't make more money than him so that he could afford his career, but the reality is that he always wanted a job that would require relocating to places that I didn't necessarily want to live. A job that is fading away with budget cuts. I couldn't continue living in a high-stress situation just so he could live out his dream, which wasn't my dream. I wanted him to be happy, but I wasn't, because I was only along for the rocky ride. Even if he switched careers, I knew I would be along for a very stressful and uncertain ride. It wasn't brave of me to leave, it was mostly just practical. I needed to realign myself with my own values, goals, and needs. And so as I enter into 2026, I look forward to planning for my own future!

🎇 So as I enter into 2026, I'm choosing gratitude. I'm not entering into the new year with fear, uncertainty, bad vibes, depression, anger, resentment, or anything negative. It's all in the past. This is my fresh start. The future isn't something to fear. The future doesn't need my past baggage. I'm hopeful! 

Another thought... 

As I read through what I wrote, I realize that I might sound neurodivergent. I talk a lot about stimulation, feeling alert, and trying to maintain calm nerves. I have never been tested for neurodivergence, but I've seen the changes in myself from before and after getting sick and know that this illness caused these sensory issues. I wasn't like this until I caught H1N1 in 2012. I've had to do a lot of work on myself over the years to tolerate sensory issues better. In the first few years, lights, noises, textures, temperature changes, and everything sensory really bothered me. Sometimes noises and changes in lights were really painful. I'm not as fatigued now as I was back then, and I have a higher tolerance now, but sensory issues can still trigger some pain for me. My primary issue now is that I'm always feeling "alert" and I need to be able to stop sensing everything so my nerves can calm down. It might be psychological - a defense mechanism, maybe. But I do know that my need to feel "alert" isn't within my control, and when something "alerts" me I get a lot of nerve pain and waves of freezing cold through my body. It's something I hope will calm down with time, now that I've parted ways with the majority of the stress in my life. 

Eivor - Let It Come

Sometimes

I overthink the most simple things

I go blind

I don't see the solutions in front of me

But today, the sky looks different

And I am wide awake, my heart is quivering

(Let it come, bring it on)

There is something in the air, it's liberating

I can feel it moving

This time, it's coming for me

Something I've been waiting for, I can't explain it

I can feel it moving

This time, I'm ready for it

It's time

To trust the voice in me

Synchronize

Every part of me to this moment

Today, the sky looks different

And I am wide awake, my heart is quivering

(Let it come, bring it on)

(Bring it on, bring it on)

(Bring it on, bring it on)

(Bring it on, bring it on)

(Let it come, bring it on)

There is something in the air, it's liberating

I can feel it moving

This time, it's coming for me

Something I've been waiting for, I can't explain it

But I know I'm changing

This time, I'm ready for it

Ready for it

This time, I'm ready

Let it come, bring it on

July 2024: What Happened To The Heart?

Despite what I'm about to say in this blog, I'm really grateful for the beauty that I'm surrounded by in my life. I bought this flower at a farmer's market a few weeks after moving here at this time last year, and look at it now. It's the most amazing flower I've ever grown in my life:

I'll be turning 37 in a few weeks. I still feel so young because I feel like too little has happened in my life, but I feel the weight of age on my shoulders. It's compounded by all the doomsday scenarios all over the news: climate change will cause us to fry or freeze until we're all extinct, women's health care will regress until I can't get any medical help at all, it's impossible to afford to raise children, we're running out of electricity, no one can buy homes anymore... You get the point. I feel like I missed my opportunity to live the "American Dream" before it became impossible. Now I wonder if we're all going to die soon anyway. (I doubt it and I won't plan on it, but I entertain the thoughts.)

Part of me is actually really thankful that the "American Dream" is dying, because it's a huge responsibility and not everyone is built to endure it, and it gives me relief to be able to let go of it. Those who are built to endure it are very lucky to have the opportunity to thrive in this country, and I'm incredibly grateful for them! They are the backbone of this country and I fully support their efforts. I thought I was one of those people, but now? It's only a burden of a dead dream for me now. Before I got sick I had a lot of ambition that was instilled onto me. I understood that every person had to have a career, and so I was creative about what I wanted my career to look like. I dreamed of opening my own business, being a published novel author, landing a job working for a company that was going to save the world from itself, and giving TED Talks about how ethics in business actually lead to better productivity. I was a highly idealistic and dreamy person. I was smart and I knew it, but I didn't understand my intelligence type. I fought my natural instincts in order to do the "successful person" things. Since getting sick, all that ambition is completely gone, and all that matters is the energy that arises from my natural instincts... which isn't exactly career-oriented. I'm a nurturer, and I was built to raise a family... something that's impossible to do without a two-career household these days. 

I thought getting married was the first step to doing the right thing with my life in order to live my "American Dream," so I got married very young. I thought that was going to motivate me to make money and get my life rolling. It took me a long time to figure out that I was delusional, because I was trying to do what I was supposed to instead of live according to how I naturally am. I was very ready to be completely in love and committed to a person - that wasn't the problem. I'm built to love very hard, and commitment is a huge blessing to me, not a source of fear. The problem was that I wanted to be married because I wanted a family - which is very natural, right? It killed my career instincts. Immediately I found myself putting myself aside to support my husband in all of his dreams. I stopped investing in myself. I took any job I could find, which never paid that much. I had a college degree, yes, but that never helped me earn a decent wage. I had 2 different jobs that required my degree, and both of them paid less than $10/hr. It was very clear to me that I was built to be moral support to my husband, and it was my job to help him fulfil his career dreams. And then I got sick. Goodbye Sarah and all her dreams... getting sick became my life. And you know what? I'm tired of my life being ruled by my physical abilities. 

Side story about being a slave to my body so you can understand how difficult it is for me to plan anything in my life:

We had tickets to go see a concert of a world famous jazz musician: Wynton Marsalis. We could choose between going on a Tuesday or Saturday since he was at the venue for a residency. My husband really wanted to go on the Tuesday, but I told him that was my period due date. My period is so extreme that I absolutely cannot do anything on the day of my period, but the PMS is also very intense. It's always better to schedule everything in my life for the week after my period. So I said Saturday was the better day to go. Well, Tuesday came and went and my period didn't come, although the pain was enough to make me believe it would come at any moment. But it didn't. I ended up being 6 days late, and why? It started overnight on Friday and caused me a ton of problems all Saturday morning. We had to leave by 3 pm to get to the concert on time. My husband had been calling around asking for anyone else to take my ticket and go with him, but it was too last minute and no one was able to. I made a last moment decision at 3 pm to go with him, because I was just getting past the worst and was entering the recovery phase. It meant 4 hours in the car, and somehow managing with difficult public bathrooms while there. But I was angry at my body and I was angry that money would go to waste. So I chose to go with him. I wore a dress so I could wear my overnight pad, because my menstrual cup can't contain it all, took some medication, and went with him. I delt with the poor public bathroom options. I was dizzy and wanted to lay down through the concert. But I really enjoyed the music, which lifted my spirits and helped me endure. If my period had started even an hour or two later I wouldn't have gone, so I got very lucky.  

Now I'm in South Carolina for his career... I'm not going to write freely about my entire experience here, not at this point in time. But I can say it's been highly unsettled, triggering depression like I've never known before. It's been very difficult for me to just go get any job I can, because it doesn't work that way here. I can't drive far safely - most of the time I can drive 10 minutes before I zone out too much, and there isn't much within 10 minutes. Most jobs here are manufacturing jobs, followed by fast food. Manufacturing jobs are never going to work for me because they'll never hire me part-time, and the jobs are highly physical and require more energy than I have. So many of them are essentially slave-labor too... I have been told many stories from locals here. Many of them only offer rotating shifts of 12 hour days, but the work is highly repetitive and causes repetitive stress injury. No, I can't survive in that environment in my physical condition. To be clear, it's because of the small town I'm living in. If I were in one of the cities I wouldn't be having such a problem... maybe. There's a lot of competition for jobs. South Carolina is growing rapidly. I feel extremely useless... like there's no reason to be alive. I could get into the climate, pollen, mold, poor infrastructure, and poverty issues too... I could write a lot about how inhospitable it is for my health condition, but I imagine I don't need to explain much. Extreme heat, pollen, and widespread mold problems says everything. I feel like I lost a battle with the culture of this state before I even took a swing at it. The standards of living are very low, and the expectation is that every person is able-bodied and can work like slaves. At least in the small town I'm in. Imagine me calling in sick for my period... it doesn't matter that I have endometriosis. I would get fired quickly. 

Aurora's new album, "What Happened to the Heart" has been a massive inspiration for me these past few weeks. I know I'm always sharing her music in this blog, but she always expresses what's in my heart and on my mind. It's very poetic and the themes align perfectly with all the weight on my own heart. She sings about what it means to be human in a disconnected world: tackling issues of AI, loss of independence and the desire to be free, inability to repair relationships due to selfishness, how to be remembered in a world that isn't paying attention, worshiping idols that don't love us back, and how necessary it is to love. I was already feeling all the themes very deeply, then she comes along with this album that expresses my heart perfectly. But I know we're all feeling these themes to some degree.

The Essence

In another life

Home feels like home

I've mourned you now

Longer than I've known you

As the trees cry their leaves

Vulnerable, just like me

Maybe, maybe it will be alright?

We all hurt sometimes

Maybe, maybe it will be alright?

We are running through the waves of time

And the truth can lie

In the arms of a fight

And I try, and I try

But it hurts so much

To be in touch

So I'd rather not

We make amends with the roads we cross

Like rivers flow

To be near your ground

Maybe, maybe it will be alright?

We all hurt sometimes

Maybe, maybe it will be alright?

We are running through the waves of time

And the truth can lie

In the arms of a fight

And I try, and I try

But it hurts so much

To be in touch

With the essence of us

A Soul With No King

I know you know me and you always will

Like a man with no wisdom and a soul with no king

A soul with no king, hmm

I know you fear me, your heart unfulfilled

Like a world with no mother and a home never built

But if this is what you want

Why speak of right and wrong?

You still go in for the kill

You speak of the devil

Like he's not your friend

When the world starts to burn

Give your water to him

(Call my name)

Call my name

Nothing will ever change, no guilt, no shame

Call out my name when you need me again

Nothing will ever change, no guilt, no shame

Call out my name when you need me again

If you know who I am, why won't you call my name?

Everything I do I do for Love - An ME/CFS Lament

Do you live with an "impending sense of doom" that nags at you every day?

I do.

I have since moving to South Carolina, but the feeling has grown stronger and stronger. Along with it, my health has declined more and more. 

There are rational reasons for feeling this way. This was not a move that offered security, but instead, amplified a lot of doubt about the future. Adding to the instability is fear of the economy. We're in stagflation now, some have called it a silent depression as well, and an official recession is looming. I don't feel like I'll survive if we carry on as we are right now. I worry the jobs and then the money will disappear. As someone in a reel on Instagram said, "There is no middle class now. You either have money or you don't. If you're making only $100k per year, you don't have money." 

The problem with ME/CFS is that the condition doesn't allow us the energy to worry. If we spend energy on worry, we won't have energy to do anything else. It makes it extremely challenging to plan complicated issues such as surviving a major economic crash, and if I do come up with a plan, it's even more difficult to find the energy to take action. If you have a spouse that doesn't agree with you, it's almost impossible to fight. 

This morning I was incredibly tired from days of mental gymnastics, trying to plan my future so I'll be ok. I'm still in a daze, but if I don't release these thoughts then they'll continue to drain me. I sat outside on the porch and watched the birds, soaked in the sun, and let my mind take a break. I just let myself feel tired. The problem was that the thoughts kept coming back as I observed the world around me. I thought about how I would love to be a bird, because their lives are simple: survive and procreate, but have fun flying too. Sure, they have all sorts of stress, such as being eaten by other animals, but their lives are not complicated by the societal expectations of other birds. And how humans can't just let humans live the way birds let each other live, we all have to compete for money and make ourselves useful to people with more power than us. I watched all the cars drive by on the road in front of my house. Many of them were business vehicles: pest control, heating and air, campus security (I live on the edge of the university), emergency service vehicles... how many of those people are going to earn enough money doing those jobs to keep a roof over their heads when the economy tanks? As it is, it's hard to afford food. It's hard to keep my mind from going right back to these overwhelming thoughts of worry. Maybe they already paid off their house, maybe their spouse makes a ton of money, maybe they have the ability to live on beans and rice without slowing down because of a bad diet... it must be nice to not need so much to manage your health and be able to focus on work. 

It must be so nice to be healthy enough to just focus on a job every day, and not have time to worry. Have a task to do to stay occupied. How nice it must be to go to work, do something physical like build a fence for a client, and then go home with money and the feeling of security. The problem with ME/CFS is that I don't have the endurance to just go do a job like that. Can you imagine me hammering nails when I can't even find the strength to cook breakfast (I have not eaten yet today...)? What do I have to keep me occupied, build my sense of security, and feel like I can rely on myself to survive? Nothing. I have nothing. Because I have to rely on my husband, and he's not making enough money to build up any savings. We're living paycheck to paycheck. Which, let's be honest, is totally absurd... he has a doctorate and works at a university. But the problem is that inflation is rising and wages are not - he has a great job for pre-pandemic times. I'm on disability, so I do contribute, but I feel like dead weight. He'd be okay in a smaller, cheaper rental without me... I can't help but think these thoughts.  

When people tell me I have so much to live for... well, it's funny, isn't it? If we saw a crippled deer in nature, we'd probably put it out of it's misery, or sit and watch while a predator eats it. When we see crippled humans, what do we do? Some have compassion, but in my experience, most tend to judge them for not contributing to society and making more money. So many people want disabled humans to be some sort of inspiration: "Peggy lives with chronic pain, but that doesn't stop her from being a billionaire, so what's your excuse you lazy bum???" The reality is that "Peggy" was probably born into a wealthy family and already had the means to grow wealth, and odds are she's able to afford the best medical care so that she can work. But no, in my experience, people are so caught up in the rat race that they can't understand anyone not racing hard along side them, no matter what handicaps they have. Why should I have to live to participate in the rat race? I don't want to race. I'd be happy to just exist and share all the love in my heart... but that doesn't make money. I mean, I can find ways to do very purposeful work that pays me some money. $100k per year, though? Even $50k per year? No... I don't have the energy or experience to meet those expectations in a job that would pay that. Money money money money money money money money money... if no one will pay me in money or support me with their money, what do I have to live for? Because it's not actually possible to live with poor health and without money. 

Sitting outside caused me to focus on some issues with my health too:

- My eyes can't focus well. They go in and out of seeing everything through a blur. I don't think it's a vision problem because I am able to see clearly when I have energy. 

- The pollen count is exceptionally high here, and everything is coated in a yellow layer. My allergies are causing me some issues. I've been dealing with rashes, bloody noses, runny nose, eye irritation, lots of coughing and sneezing... do you realize how much energy it takes to deal with allergy symptoms?

- Yesterday I sneezed and caused me to feel an intense stabbing pain near my ovary, and it throbbed for a while after. It made me scream and cry a little. I questioned if I had just ripped something and needed the ER... and how in the world can I afford the ER? That would bankrupt me. There's absolutely no way I could deal with a thousand dollar medical charge. It left me profoundly scared at the idea. I'm not really ok when I'm one medical emergency away from financial disaster. I wondered if it was smart of me to sit outside, which could induce another sneeze...

- I am hitting brick walls more and more often. What I mean is that I'll be doing a task or talking to someone, when suddenly I can't do it more. It's like my body's power supply shuts off and I go dark. There's basically nothing I can do to reboot and continue. I just turn off and wait for my body to recover. 

- Why was my period 6 days late? I had to endure PMDD torture for 6 extra days. Why do I have to live like this? I had 2.5 weeks of PMDD which caused me to hate being in my own skin, and challenged me to get anything done. I can't live like this. 

And so... I wonder... what is my life for? I just want to love and be loved by you. Nothing else really matters. Love is why I want to work. Love is why I want a family. Love is why I want to live my life. Who are the people who understand that the meaning of life is to love? That everything we do, we do for love? Where are you? Because I'm drowning in a culture that thinks how much money you make is more important than how well you love people, even though no job is willing or able to pay more... the wealthy don't work jobs. They were born into wealth and know how to invest it. People who live to earn money in jobs are the poor now. So even if I work to earn money, I'll still be poor. There's no digging myself out of this hole as long as I'm this sick, and if I miraculously heal and start working full time, I'll still be sitting next to the hole, always aware how easy it is fall back down into it. 

The people who I have confided in and care about me the most keep telling me exactly the lyrics of this song (actually, instead of "love yourself" they say "be selfish," but they mean the same thing):

The Boxer Rebellion - Love Yourself 

You told yourself
"I'd write a letter today"
Tell the world that you would hurt yourself
Can't look in a mirror much less anyone else

You try to move on from here
But you look like a ghost alive
You can't think always running in place
A lost soul that won't show his face

But I know you're just someone who's feeling all alone
You're just someone who doesn't seem to know which way to turn
If you just ask for help, if you just ask for help
First thing I'll say is you gotta love yourself

Find it hard to take
Hard to take even the best of praise
A pair of hands that became too tough
A growing armor for whatever they might touch

But I know you're just someone who's feeling all alone
You're just someone who doesn't seem to know which way to turn
If you just ask for help, if you just ask for help
First thing I'll say is you gotta love yourself

And while I completely agree with them.... what I'm feeling is this:

Simon and Garfunkel - El Condor Pasa (If I Could)

I'd rather be a sparrow than a snail
Yes, I would
If I could
I surely would, mmm hmm

I'd rather be a hammer than a nail
Yes, I would
If I only could
I surely would, mmm hmm

Away, I'd rather sail away
Like a swan that's here and gone
A man gets tied up to the ground
He gives the world its saddest sound
Its saddest sound

I'd rather be a forest than a street
Yes, I would
If I could
I surely would mmm, hmm

I'd rather feel the earth beneath my feet
Yes, I would
If I only could
I surely would

And what I'm seeing in the world today is this attitude... 

Tom Odell - money

(I hope it's understood that this song is a criticism, not an anthem)

Gotta make more, gotta make more
Gotta make more, gotta make more money
Gotta make more, gotta make more
Gotta make more, gotta make more money

Walk out the door
Thank the Lord for my Gucci and Dior
We're looking so great
We take, take, take
All we gotta do is

Take another picture of me
Take another picture of me
Take another hit and you'll see
That if you want it, you gotta get mean 'cause
We're just kids climbing up the trees
Just kids climbing up the trees

Walk out the door
Thank the Lord, ain't no time for being poor
We're looking so great
We take, take, take
All we gotta do is

Make more, gotta make more
Gotta make more, gotta make more money
Gotta make more, gotta make more
Gotta make more, gotta make more money

The Covid-19 Pandemic and Me and You

You might think that the Covid-19 pandemic would have led me to writing a blog about it sooner than this. I am finally feeling like I'm able to articulate my experience, concerns, and hopes. I have been working on this blog for several days. I have so much to say, but when I sit down at my computer and choose between working on this blog and playing a relaxing video game, the game keeps winning. No, not out of laziness and procrastination, but because this topic is stressing me out too much that it's not healthy. I finally trudged through it and found it helpful to not only organize my thoughts through a blog, but also to understand all my anxiety better by communicating it.

My experience has probably been different than what most people have experienced. My reality is that I've had it easy - very easy. I haven't had to worry about money, eviction, work, food, toilet paper, or anything essential to living. For this I am very grateful. I don't care to share my personal living details on this blog, but I can share more about where I live.

I am living in North Dakota, which has been one of the best states to live in during the pandemic due to being a rural state with a low population. We didn't need to go into a full lock-down and contact tracing has been our specialty. Our governor only closed certain businesses with high contact, such as movie theaters and salons. Most retailers were able to stay open. Online shopping, deliveries, and curbside pick up have been popular. The stores I buy my groceries at required their employees to wear masks, and they have been sanitizing carts and surfaces constantly. I have been able to stay home from work, and when I've had to go out to get food I've been able to get what I need as safely as possible. Thankfully I already had a stockpile of meat in my deep freezer before the pandemic started. My husband has been able to work and take classes entirely online, and there has been no concern about him interacting with people and bringing the virus home. The only income we've lost is mine, which is manageable for us since I only worked very part time.

Just because my experience has been easy doesn't mean it hasn't affected me. It has been very difficult to process my anxiety because the majority of my anxiety was not conscious, just irrational and reactionary anxiety, but a good portion of it was rational from thinking through the situation. The anxiety didn't hit me right away. About a week and a half into quarantine I noticed I was completely drained (on top of chronic fatigue), I broke out into hives, my sleep was very low quality with vivid stress dreams, my digestion was awful and at times hard to manage, and I felt extremely withdrawn. I may have been in social isolation from people physically, but I didn't want to engage with anyone online or over the phone. I wanted complete isolation. All news, social media, chats, etc were all too stimulating for me. In fact, I struggled with all noises, even music, radio, and TV. It wasn't a matter of fear, stupidity, or clashing opinions (that came later.) It was simply that reality was sucking my precious little energy dry and putting me into a state of constant recharging. The problem is that I wanted to stay updated on all the news, so I allowed myself to keep reading it even though I was feeling agitated by it. This anxiety fused with 1.5 weeks of strong PMS/ PMDD, which led to a few days of pain and exhaustion. I am just now coming out of that physical and emotional hurdle, finally feeling myself entering the post-anxiety stage of the pandemic. I am still socially exhausted, however, and still have little interest in interacting with people.

I have concerns about my health during this pandemic. I don't get sick with the common cold easily, but when I do catch something I get the worst version of it and it takes too long to recover. I've had too many examples of this in the past few years, especially with norovirus and "walking pneumonia." I don't want to get into details about that since that's what the rest of this blog is about, but I hope you understand that I have to protect myself and must take covid-19 seriously. I am not someone who should be taking risks. If I catch it I will be out sick for a very long time, I will get very sick, and since I have a long history of reacting strongly to most medications I've been given, I might not be able to take anything pharmaceutical to treat it. I'm being as cautious as I can be for my sake, but also for the sake of others who are like me.

I had H1N1 (Swine Flu) back in 2010. I was in my early 20's and was healthy enough to work out, work 2 physically active jobs, and hang out with friends. I have always had some health issues, but during that time nothing was holding me back except allergies (and I was taking Allegra-D every day for it) and endometriosis. I wasn't eating well back then, and I was living in a house full of black mold. Well guess what? It knocked me out very hard for 2 weeks, and it took a little while longer to feel healthy again. Very high fever (I didn't document it, but I remember seeing 103ºF for several days), extreme full body pain, extreme weakness and fatigue, lots of heart palpitations, unable to eat properly, and loads of bathroom issues. I remember questioning how it was possible to live if the symptoms continued to stay that strong. I was taking all the meds the doctors gave me and they didn't really help (if they did then imagine how much sicker I would have been without them), but apparently they were helpful for other people. I had to keep getting doctor's notes for work, because my employer's sick day policy didn't change during that pandemic. It was such an awful illness that when I finally recovered I felt like I had been to hell and back, and I was working with doctors. Well guess what? Covid-19 is worse than H1N1 because it is more contagious and causes more deaths.

The fact is that my health was never the same after I had H1N1. Doctors have suggested that it triggered my chronic fatigue, but there's no solid proof. Doctor's have also noted that I had very high levels of mycotoxins from mold in my body, also known to trigger chronic illnesses. I also have some genes that are not working in my favor, along with some family history. Nothing is certain in my case, but other people with H1N1 were studied and many people did develop chronic illnesses as the result of having H1N1. And... There is already research being done on Covid-19 leading to Chronic Fatigue/ ME.

I wouldn't wish my health challenges on anyone else. Chronic fatigue is no joke. It ruins lives. I am witnessing that most people are concerned about dying from covid-19, but one of my greatest concerns is surviving it and then being left too sick to ever function normally again. Are you successful in your full time career? Imagine never being able to perform well at work again because your body feels like sludge, you can't remember things accurately and get confused easily, you can't always find the strength to get out of bed, and doctors don't know how to help you. If that is the result of catching covid-19, would you try harder to avoid catching it and spreading it? But Covid-19 could cause problems beyond my experience too: permanent lung, kidney, nervous system, and brain damage. Any of these potential complications are too much for anyone!

Keeping in mind that this is just opinion based on my experience and perspective, this is why I'm skeptical of the idea to let covid-19 naturally spread through the population to build up herd immunity. Not only do I think it could create too much chronic illness and kill too many people until we have a treatment available for it, I also worry about the fact that we don't know if we can develop immunity to it. It seems very reckless to me to allow people to get sick with it when we may not develop long-term immunity, and it might become a new virus that circulates every year like the flu does. If we allow this virus to circulate around the world every year when we don't have any way of treating it, unlike the flu that has treatments available, are we doing too much harm to the global population? We don't know enough yet. While the lock downs do harm the economy and mental health, I think too many deaths and people with new chronic illnesses would also harm the economy and mental health. It's a balancing act, and no solution will come without harm to people. We simply need to keep people safe long enough to learn how to effectively treat patients with the virus. If this becomes a treatable virus that circulates around the world every year like the flu, then we can return to normal because it will be treatable. Right now it's not treatable.

The greatest problem with Covid-19 is the fact that we don't know how to treat it yet. All the drugs we have been testing have created too many side effects, and the drug was not better than the virus it was trying to treat. Science takes time! We can't rush the process of learning and studying, sorry. People are dying on ventilators. We do know that people are improving on vitamin C IVs, but is that enough for severe cases? Can we make enough vitamin C IVs? A few years ago there was a shortage. So what is the option to combat a deadly virus we can't treat? Try to prevent it from spreading. We know that wearing a breathable (so many are not due the fabric type used) cloth mask greatly reduces the risk that you will spread it to other people. We know that soap kills the virus, so wash your hands. Sanitizer does work if you can't wash your hands. The only sure way to avoid spreading it? No contact with other people outside of who you live with. I am in full support of shutting down the economy as much as necessary to prevent spreading this virus, because this allows essential businesses to remain open with less risk than if parts of the economy were not shutting down. Again, I know this hurts people. Every solution hurts people.

I have no hope in a vaccine. I'm not against spending the money on researching one, because I believe we have to try for every potential solution. I'm not putting any energy into hoping for one that will be effective, however, because I look at history. We haven't been able to develop an effective vaccine for other corona viruses. SARS did not get a vaccine before it died out. Covid-19 is mutating too quickly, how can we keep up? We struggle too much with guessing the flu strains every year, how can we guess covid strains when we know a lot less about it? If a vaccine ever is successful, it won't be any time soon, and it might come with complications. So what other solutions are available? Lockdowns or partial shut downs are still the best defense we have. Every solution that involves returning to the public is all based on theory that we don't have enough information to prove yet.

On the vaccine point, let me go back to the topic of herd immunity in order to drive this point home, because I believe this is the most important thing for people to understand. If the only way to control the virus is to develop herd immunity, then there are only two ways to do that: naturally or by vaccine. Rather than put this in my own words, let me quote this article from Johns Hopkins University:

What will it take to achieve herd immunity with SARS-CoV-2?

As the numbers above demonstrate, herd immunity is still a long way away. But in the long run, as with any other infection, there are two ways to achieve herd immunity: A large proportion of the population either gets infected or gets a protective vaccine. Based on early estimates of this virus's infectiousness, we will likely need at least 70% of the population to be immune to have herd protection. There are a few ways that might be achieved.

• In the worst case—for example, if we do not perform physical distancing or enact other measures to slow the spread of SARS-CoV-2—the virus can infect this many people in a matter of a few months. This would overwhelm our hospitals and lead to high death rates.
• In the best case, we maintain current levels of infection—or even reduce these levels—until a vaccine becomes available. This will take concerted effort on the part of the entire population, with some level of continued physical distancing for an extended period, likely a year or longer, before a highly effective vaccine can be developed, tested, mass produced, and administered.
• The most likely case is somewhere in the middle, where infection rates rise and fall over time. We may relax social distancing measures when numbers of infections fall, and then we may need to reimplement these measures as numbers increase again. Prolonged effort will be required to prevent major outbreaks until a vaccine is developed. Even then, SARS-CoV-2 could still infect children before they can be vaccinated or adults after their immunity wanes. But it is unlikely in the long term to have the explosive spread that we are seeing right now because we hope that much of the population will be immune in the future.

There will always be problems with the solutions. There is no perfect answer, all we can do is manage. But I do think it's worth explaining personal problems I have with the solutions I'm advocating for. I have Multiple Chemical Sensitivities, so when I breathe in fragrance and cleaners I "react." This means my body gives me lots of symptoms in response to something it didn't like in air I breathed: headache, sudden major fatigue, widespread muscle pain, heartburn, swollen tongue and throat, brainfog and stuttering, blurred vision and/or vertigo, digestive complaints, and more. I am more mild than most with MCS, but I am still impacted. So imagine having this condition and learning safe places to go in public over the years, but then suddenly every business that used to be fairly safe because they didn't use fragrances are now using harsh cleaners and fragranced hand sanitizer. Suddenly, there is no safe place to go because everyone is covered in very smelly hand sanitizer that triggers health problems. They are protecting me from the virus, but they are triggering health problems. This is a massive problem, because many types of people with other conditions are triggered by cleaners and fragrances too.

What helps so much is the fact that I now get to wear my filtered face mask in public without scaring other people. Before Covid-19, if I wore my mask to protect myself from fragrances people usually assumed I was sick and they avoided me. I wasn't sick, I just wanted to avoid getting sick. The mask filters out at least 50% of fragrances. It helps a little. It worked out that people avoided me though, because even if the filter was protecting me from breathing in the fragrances, they could still irritate my eyes and ears. The more distance between me and fragrances the better. I didn't like being the weird repulsive one, though. That didn't feel good and made me feel like some sort of monster.

The solution to these problems would be using fragrance-free hand sanitizer and soap. I can personally tolerate some essential oils, but not citrus oils. For my sake it would be fine if you used a natural brand like Dr. Bronner's Peppermint hand sanitizer. I do best with fragrance-free, but with low exposure to certain essential oils I am fine. For so many people with MCS, however, it's not fine, essential oils are just as damaging as synthetic fragrances. Essential oils do produce VOCs that trigger the reactions, and many people are much more sensitive than I am and will react to essential oils as if they're artificial fragrances. Just keep this in mind. If you have the option of using a fragrance free sanitizer, know it's by far the best choice for everyone on the planet.

Clean with non-chlorine bleach, which is just a concentrated form of hydrogen peroxide. It has been approved by the CDC to kill covid-19. (I linked to a news article about this, not the CDC's website, because the information pages from the CDC are actually very convoluted and it's difficult to find the straight answer.) It has no odor at all, and it's not full of cleaning chemicals that harm people's lungs. How stupid is it that people are being told to clean with synthetic harsh cleaners during a pandemic with a virus that damages our lungs, when they are known to damage the lungs?

Back to the issue of wearing masks in public. Keep in mind that there are people who are unable to wear masks because they have a condition that worsens when their air intake is limited. People who can wear masks should wear masks because they prevent you from spreading the virus to other people. Also, wear them for the people who are unable to wear masks. The more people wearing masks, the less it will spread. This is very much like how herd immunity works - a vast majority of people need to be immune to protect the population from the disease.


I would now like to go over my concerns about how lay people (citizens) are reacting to covid-19. Each of these points makes the exact same point, but I approach the point from different angles.

1. We don't know enough about the virus for non-experts to make demands about how other people should react. I understand why people want to develop strong opinions, but the fact of the matter is that we just don't know enough about it to form such strong opinions. Physical distancing, quarantine, and contact tracing have been useful. In hindsight we could see we over reacted, but we might also see that we didn't react quickly or strong enough. We must learn and adapt as we go, there is no choice. Preventing the spread of a virus we don't know much about and we don't know how to treat is prudent and we must make decisions based on current information. Since we don't know much about it, but we do know it's killing people and possibly causing permanent health problems in recovered people, we really have to listen to the experts who know the most about pandemics. We need to be united if we're going to get past this. We can't have some people obeying a lock down while others think it doesn't apply to them - we all need to unite under a plan of action for it to be effective. I don't care if you don't trust medical experts (you know I've had plenty of trust issues myself). We all need to obey the plan of action for it to have a chance of working, no one is exempt. The alternative is anarchy, which isn't organized enough to protect lives during a pandemic. 

2. Misinformation is spreading like wildfire, and people who are spreading the misinformation are extremely stubborn about it. Like I said in my last point, you're entitled to your opinion. That doesn't mean it's factual or up-to-date with current information. That doesn't mean your opinion is helpful. If you cannot back up your opinion with scientific facts and theories, statistics, or proven solutions then it's probably best not to post it on social media. If your opinion is politically driven, not science driven, then it's not helpful. If your opinion is only about how to help yourself, not your whole community, then it's not helpful. Spreading misinformation gives people a false sense of security, creates anxiety, causes people to make potentially bad decisions, and makes it so much harder for our experts to lead us. What you post on social media does influence people, and if you're influencing people to ignore our leader's efforts then you are creating anarchy. If people are not listening to and obeying our medical experts and scientists then we will not be united. Unity will protect lives and our economy. Unity now will mean we can safely reopen the country sooner.

I am, however, seeing that it's helpful to share facts. Facts often come with interpretation (this blog post is an example.) Interpretation can easily turn into misinformation full of logical fallacies. Just think about what you're saying, or at least make it clear that you're only offering interpretation that could be wrong. But people need to be exposed to facts in order to be educated, up-to-date, and less anxious. Facts, not opinions, will help us get through this pandemic.

3. You don't know other people's situations, and so we need empathy to guide us. A small business owner might be begging to reopen businesses so that their small business doesn't go bankrupt and permanently close, because they were unable to secure a small business loan before the funding ran out. That person isn't wrong to be worried. A mother and father might be begging to reopen schools because they're both essential workers who cannot get time off work to home school their children. These parents are not wrong to struggle. An immunocompromised person might be begging their governor to extend a lock down because they cannot trust people to not spread the virus. This person isn't wrong to fear for their life. A healthcare worker might be begging people to stay home because they can't keep up with all the patients in their hospital. This person isn't wrong to be anxious about their ability to treat everyone who needs treatment. People are not wrong to be in their situations, and what they need to make their situation ideal might be the opposite of what someone else needs to make their situation ideal. We have no choice but to compromise and be united under a plan that protects the most people. My opinion is that health and lives should be a priority over the economy, but I do think we need to protect the economy as much as possible so that poor quality of life doesn't lead to suicide, homelessness, hunger, and other poor health issues. This is extremely tricky. I don't have the answers, so I'm going to obey our science experts who are leading us through this. I have been very happy with North Dakota's leadership because we were able to keep most of the economy open while doing as much as we could to prevent the spread of covid-19. Yes, people were financially hurt, but there is no solution that won't involve people being hurt.






Now I want to address specific common comments I'm seeing on social media, the comments are copy-and-pasted in red quotes:


"Covid Deaths are Inflated"
"   Wording is very important. Not all of those deaths were caused by Covid. The health department and Burgum himself have announced quite a few as “dying with Covid” not “dying from Covid”.   "

"   dying with means you died from something else and you just tested positive for Covid. That should not count as a Covid death.   "

"   So 4 more have died you cannot assume it the virus! This is BS all older people, maybe it was their time. Every time you do this and count it as virus, we get closer to mandatory vaccination! I want to see real numbers! not everyone passed because of covid!   "

"   It's not deaths because of covid, it's deaths with covid folks, if you were dying from kidney failure, contract the disease and then die... Because if your kidney failure, you get added to the covid death total, covid might be speeding things up but it's not the cause if death, the news needs to do a better job of clarifying this, but facts don't make good news stories.....fear does  "

This infuriates me! This idea is that people with underlying conditions are going to die without covid anyway, so therefore we shouldn't count their deaths as from covid-19 because it inflates the numbers and creates fear mongering. I'm screaming "WTF!?" First of all, these people have no idea how medical coding works, and so their point about distinguishing "dying with covid" and "dying from covid" doesn't actually apply to medical codes. Primary cause of death will always be recorded as what caused the death. If a cancer patient dies from the flu, the primary cause of death was the flu since they would have lived longer with cancer if the flu didn't kill them. If someone with a flesh eating bacteria that was slowly eating them to death was struck and killed by lightning, lightning is the primary cause of death. Second, they're saying that a person with underlying conditions are not worth saving? They're saying that a person with underlying conditions should die? Having an underlying chronic illness doesn't mean that person will die soon. Many, if not most (need to look up the statistics depending on the type of chronic illness), people with chronic illnesses live full lives until old age. If they have covid-19 at their time of death, it was very unlikely they were going to die then without contracting covid-19. If a person's underlying condition is old age, that doesn't mean they're going to die anytime soon. A 90 year old person could still have 10 or more good years left to live. Who are you to decide? Stop treating old age as if it implies a low quality of life not worth living. If a person dies with covid-19 then it needs to be counted as a covid-19 death. This isn't fear mongering, it's data, statistics, and fact. This is a great example of how spreading your uninformed opinion causes harm. It's trying to teach people to value other people less!



"Stay At Home If You're Afraid"
"   Enjoy Freedom, Use common sense, If you don’t feel your ready STAY HOME... But some of us don’t have your feelings   "

"   This crap needs to stop. If your sick stay home. If your weak, stay home. Let the rest of us go to work!!   "

On the surface this way of thinking seems logical. If you're afraid to go out into the world, then stay at home and don't participate in the world. Until you really think about how this "solution" applies to reality. Unless these stay-at-home people can work full-time with benefits online from home, how do they manage their finances when the rest of the world has gone back to "normal"? What if they are an essential employee and their job does not make them feel safe because they have to work with customers who are not taking the pandemic seriously? It isn't exactly possible to keep participating in a world that returns to normal, but you don't return to normal. The stay-at-home people suddenly become like disabled people, who are ignored and forgotten since the rest of the world only looks at the "normal" they see around them.

I can paint you a picture of what this looks like. I have been avoiding most public places for about 7 years now because of how sick I can become in public. I have had to "stay home" because if I go into places like Target or Walmart I'll develop a nasty flare from reacting to all the fragrances, dirty air, artificial lights, and stimuli. I had to choose a job where I could be active enough to keep my blood pressure high enough to perform well, while limiting my exposure to artificial fragrances and dirty air, that also would work with my limited energy and allow me to work shorter shifts. I can't just go work any job like most people, I'm too disabled. When the rest of the world won't adjust its "normal" to be safe for most people, people like myself have to adjust our lives to stay healthy, which means being very cut-off from "normal." I understand that people with my illnesses are in too great of a minority to change the "normal" without years and years of science, advocacy, and government care. People who want to stay home to stay safe during this Covid-19 pandemic, however, may not be a minority, and if they are they are still a very large group of people. This many people staying at home will mean the economy won't just go back to normal - businesses will still have to work with many at-home customers.





Thank you for reading my long blog post. I feel the need to offer my perspective. Even if you do not agree with my concerns, I feel it is very important to understand each other. If I don't say what my concerns are, how can you understand me? I am actively reading other perspectives, which is what influenced me to write this post. Please feel free to comment with your blogs, or even share articles to help you express your perspective. I want to participate in a constructive educational conversation. I hope to contribute to a culture of critical, rational thinking that can create ideas to help manage this pandemic with the least sacrifices.