Thursday, October 24, 2024

I Finally Caught Covid...

Hurricane Helene... then... Went to Washington DC, and then COVID happened... Yes, I finally caught the dreaded covid. I'm on day 12 of dealing with it right now. I'm going to skip talking about Helene in this post, but it was bad here.

Anyone who knows me knows I thought I was immune to covid, and maybe I was up until now. I never caught it during the pandemic, and I thought it was because of my blood type or genetics or something. They also know that I was afraid to catch covid because it is known to cause POTS, which I already have and I absolutely do not want to make it worse. So when I tested positive I was naturally very scared. Turns out covid has mutated enough, so if I had any naturally immunity before, covid learned how to bypass it. 

Let me back up. Why did I go to Washington DC? My husband was invited to present at a conference in West Virginia, and we decided to stay with a friend who lives in DC so that we could see DC since it was so close. This is how he is. His ambition is so strong that he doesn't expect (or he simply ignores) the reality of his plans to fulfil his ambitions. I'll say a few things about the trip to help you understand my exhaustion: 

It was supposed to be a 6.5 hour drive to DC. That's like driving from Bismarck, ND to Minneapolis, MN, which we did several times. Except that on the east coast you should always add a couple of hours to driving time due to traffic. About 8.5 hours later, after a lot of stop-and-go on the interstate and the need to exit the interstate and drive through towns to avoid crashes on the interstate, we arrived in Harper's Ferry, WV. We stayed in a great little mostly fragrance-free Airbnb. The next morning we wanted to spend 1 or 2 hours being tourists and seeing the sights of this tourist town, but what we quickly discovered was that it was impossible to park anywhere near the attractions unless we paid $20, and we were not going to be there long enough. Also, he was in his dress suit. So we drove through the town, and later a friend told us we honestly saw it all just by driving through, so I don't feel so badly. It was quaint, but just a historical village with a good view of the rivers. 

So we drove to Sheppardstown, WV and I dropped him off at the college where he was presenting. I took my licorice pills with enough green tea that I felt strong enough to go exploring a little on my own. Well, I tried to follow GPS to a park along the river and I ended up going over the bridge and into Maryland. Then I made my way back and had lunch, then went shopping downtown. It was a cute downtown with an herbal shop, a sustainable living farm store, a really cool bookstore, a natural fiber only women's clothing store, a small new apothecary that focused on soaps and salves, a fantasy figurine store... lots of really interesting places. But after all that I was tired, and it was time to go pick up the husband. The trouble was that the husband was feeling sick and not well enough to drive, so I needed to drive us most of the way to DC. He was thankfully able to finish the drive. It was supposed to be 1.5 hours, but it took us about 2. We arrived at the restaurant and met our friends, had a great meal, explored Alexandria and found grass-fed organic gelato, then went back to their place for the night. 

I was too overly stimulated from doing too much, so it was hard to sleep well. My husband slept maybe 2 hours, but he has insomnia issues. But this day was the big DC day! This was the day we needed our energy for! 

Thankfully our friend works in DC, knows how to get around, and was our tour guide. He drove us everywhere (except the two times we needed an uber) and saved us A TON of time and energy. We toured the US Capital building, went to the Library of Congress, went to the Smithsonian Natural History and American History Museums, went to the monument, went to the Cheesecake Factory, went to the Vietnam and Korean war memorials, went to the Abe Lincoln memorial, and then went to the Thomas Jefferson memorial. We arrived back at 11 pm, totally exhausted. I think my experience of this day deserves a blog post because I felt like I was on a pilgrimage and I felt really enlightened by many things I saw. The problem with this day was that I was around so many people from all over the world - the crowds of people (especially in the Natural History Museum) were so thick that it was almost intolerable because it was hard to see much through all the people. 

So you can image all the opportunities I had to catch covid, on top of being worn out and exhausted. And weak from reacting to fragrances and fumes.  

Sunday, the drive home. I woke up with a strong sore throat, but I thought it was just my ME/CFS and I was crashing. I wasn't well. I barely had the energy to load the car with my things. We went out to breakfast and I was able to eat well. I chose to drink coffee knowing I needed the push to help me survive the day. Coffee normally affects me badly because it's too strong and hurts my heart... this barely did much for me. We drove for a while and arrived at Whole Foods midway through the day. I should have been really hungry, but my stomach did not want food. I bought a super light meal of fish and force fed myself, but my throat hurt and my stomach was not happy. Okay, I still thought it's just ME/CFS. Shopping was annoying and difficult. I didn't have it in me to think through much, but we had to buy groceries to stock our fridge with. (Hurricane Helene caused a lot damage and made grocery shopping a major difficulty, so we had to shop in Charlotte the week prior and then chose to shop out-of-town again on the way home.)

We get home, and Monday and Tuesday I felt sick with a sore throat. I wasn't well, but I kept thinking it was just a sore throat and cough from ME/CFS. I went to work at my new job (this will be another new post) on Wednesday, but I wasn't ok. If it were any other job I would have called in sick, but this is a new start-up business with very very few customers so far, so I sat there for 5 hours without talking to anyone. While I was at work I started to get body aches and a fever developed. I was so uncomfortable that I realized it was worse than my normal "feeling sick with ME/CFS" crap. So after work I bought a Covid test kit. Within a few minutes the kit showed a strong line for Covid. After 15 minutes the line was even stronger. 

My symptoms were out of order. I started with the sore throat and cough for 3 days, then developed the body aches and fever (stayed around 100.5, didn't get hotter) for 2 days, then I finally developed the congestion and "head cold" stage which has lasted 7 days so far. I'm still sick right now, but it's just manageable congestion now. I wasn't able to sleep without taking this (it's a clean version of Nyquil made by Genexa) because otherwise it wasn't possible to breathe and my coughing wouldn't stop.  I lost my sense of smell and taste, but not completely. I could taste 20-30% of anything I ate, and mainly just the bitter parts. I had a burger patty and I could only detect the texture of it, I really couldn't taste it. I had horseradish to try and drain my sinuses, and I could feel the heat but I couldn't taste it. I haven't really experienced that before, so it was alarming. 

Covid wasn't as intense as other illnesses I had (H1N1 that caused my POTS is still the worst I've had), but one thing it did do to me that I have not experienced from other illnesses was keep my heart rate up over 100 bpm for 3 days straight. Even at night, my heart rate remained high. My Fitbit and Oura Ring were both giving me a lot of warnings of tachycardia while at rest. This was abnormal for me, even with POTS. I'm used to my HR going down to the 80's while I'm resting, or even crashing low into 50's when I put my feet up. When I'm on my feet I'm usually above 100, yes, but not at rest. So this showed me how hard my body was working to fight Covid, and it does give me some concern. 

My high heart rate was why I wanted to see a doctor for a saline IV. The problem was, Hurricane Helene destroyed the plant in North Carolina that makes the IVs. So the doctors said no, the best thing I can do is drink electrolytes and stay home and rest. 

I got covid really quickly. My husband, on the other hand, didn't develop covid symptoms until 5 days after I started having symptoms. He progressed through it faster than I did. It only knocked him out for 6 days, and I'm on day 12 still with symptoms. 

It's too early to tell how covid is going to affect me long-term. I'm weak and exhausted, I still can't taste much, and I'm still symptomatic. 

Wednesday, September 11, 2024

Health Requires a Moral Compass to Achieve


I'll start with a recipe for relaxing sun tea:
Fill a tea sachet with equal parts lemon balm, hibiscus, and orange peel until full. 
Put it in a mason jar and fill with filtered water. 
Add allulose to taste. (Optional - sweeteners are not necessary.)
Put it in the sun for several hours. 
Drink it warm from the sun, or put it in the fridge and enjoy iced tea! 

Note: Hibiscus is a very potent flower, and it's not healthy for everyone. It lowers blood pressure and has the power to delay a period or make you bleed extra. I drink it only at the beginning of my cycles away from my periods, otherwise it does mess with my delicate hormones. I cannot drink it when my blood pressure is low, which is frequently. The issue is that I LOVE the flavor! Ha! 



Now onto the post... this one is more philosophical. 

Health is something determined by the mind, body, and soul all working together in unison. If the mind isn't healthy, the soul will be stunted, and the body will not be able to thrive. If the body is not healthy, the soul will ache for the ability to use the body to grow, and the mind will be stunted and held back by physical limitations. If the soul isn't healthy, the mind and body will not find meaning in existence and will stunt the growth of both. All three want to grow in unison. If the mind isn't healthy, the body and soul will strive to get the mind back on track. If the body isn't healthy, the mind and soul pour all their energy into regaining physical health. If the soul isn't healthy, the mind and body both ache and strive for meaning and purpose to feed the soul back to health. 

This is why health is not determined only by things such as your blood pressure, psych eval, or if you go to church. But it is why finding a community that brings your soul peace can lower your blood pressure and encourage a better mental attitude. 

This is why health starts with a good upbringing in a stable family, receiving a quality education, having the opportunity to learn and practice skills, and being loved unconditionally. 

This is why relationships in adulthood either grow our health or poison our health. If you choose a partner that grows with you in love and purpose, your mind, body, and soul all have the fuel they need to be healthy. If you choose a partner that always questions you, discourages you, takes from you instead of giving to you, and abuses your love or commitment then your mind, body, and soul stay stagnate and cannot grow. Health cannot be stagnated, because it must stay in motion along with the process of aging. 

This is why it's necessary to learn how to maintain our health. We must learn the skills of love, empathy, emotional intelligence, spiritual servitude to all of creation, and integrity in order to live a healthy life and inspire health in others. We must learn to be physically active in creation in order to fulfil our purpose and create the connection to creation that our souls rely on. Our bodies need food, sun, water, and fresh air to be healthy. Our minds will wander without direction unless we are connected to healthy communities of people and living in harmony with creation. 

We cannot be individuals. Not really. We own our minds, bodies, and souls, yes. We own our choices, yes. But our existence depends on each other, and our health is determined by each other. If you own land, you impact the health of the surrounding land other people live on. If you drive a car, you impact the air other people breathe in. If you eat food, you poop it out and that impacts the soil or waterways (for better or worse, ha!) If you lose weight, it evaporates into the air other people breathe. You really cannot fully isolate yourself from others, and your actions have an impact on everyone else. 

That's why there are always ripple effects from your choices. Make the ripple a good vibration that helps others live their best lives too. 

This is why we build strong moral compasses: we recognize the impact of our actions on other people, and in turn how our actions affect our own health. 

Life is difficult. It really is. None of this is easy. It's really difficult to live in harmony with ourselves, others, and all of creation. We develop ambitions that blind us to the needs of others. We don't grow past childhood, when all that mattered was living to be happy and carefree. We hold onto anger against people who caused injustice, and we confuse passion for retaliation with that spiritual purpose we all need for healthy growth. We learn not to trust each other, so we close ourselves off to the connection with others that helps our souls to grow. We learn to focus on meeting our own needs to survive, meaning we never develop the skill of love for others, meaning we fail our relationships, and in turn fail our children. Our children are not born into environments where they learn what it means to be healthy, nor given the skills to achieve health in the mind, body, and soul. Life is very very difficult. 

What I see in our current post-modern civilization is a globalized world led by people who learned how to achieve ambitions, but have not learned the skills needed to be a loving and connected person. How can our leaders be mentally or spiritual healthy when they lost sight of how to connect with others? How can a person in poor mental and spiritual health led others?

I believe this is why we have so many broken families. I believe this is why we created an economy that relies on every individual person working full-time, instead of focusing on building families that raise our children. I believe this is why we created a society that has no problem with slave labor, keeping people in poverty, and feeding everyone very low-quality unhealthy food. As a result, the birth rate is plummeting. The health of people, especially those in the USA, is dramatically plummeting. Haven't we learned that humans only thrive in communities? If we don't take care of each other and instead we continue to exploit each other, then we're not going to be able to maintain the civilization we built because there won't be enough humans left to do it. 

But it's not easy. It's not something we can simply fix. 

The most powerful thing you can do to help restore the health of fellow humans is to be healthy yourself. Make a commitment to your own health. Start with the foundation: love your family by always encouraging the best for them, choose healthy foods and time in nature for your own body, and stop losing your mind to all the distractions that don't help it grow. Be the change you want to see the in the world. Humans thrive on community, but it takes healthy individuals to create community. 

I know, without a doubt, that my physical illnesses are impacted by the people I choose to invest in. Yes, I get tired and need to rest after laughing with people I love, but it feeds my soul and I feel at peace while I recover. When I'm instead drained by poor interactions, such as arguments or listening to complaints from unhealthy people, I have to protect my mind and soul from the corruption while I recover, which leaves me more tired and takes me longer to recover from. When I feel attacked and disrespected, I feel myself growing very icy cold, my fingers and toes get numb, my throat grows hoarse, my vision blurs and I get tunnel vision (literally in my sight, not in my thoughts), my teeth clench and it's very hard to open them to speak, my gut gives me really sharp pains, and more. All my physical health issues intensify, and then I have to recover for a long time from that. This is why I'm extremely careful about who I choose to spend time with. This is why I give my energy to people really carefully. But when I'm with my people and I'm feeling connected and happy, it's so much easier to endure my chronic illnesses. Seriously, it's really incredible. 

We have to love each other. We have to develop moral compasses. We have to make choices that only feed the health of all of creation. We have to learn about each other and how nature works. We have to make educated choices to make moral choices. If we don't collectively do this as a society, we're going to fail each other. 

I know I'm guilty of complaining a lot based on my anger that people don't choose to be better. I have to learn how to be better, that's where I need all of you to teach me too. We all have to be the change we want to see in the world. We have to put out the vibrations other people need to grow on, because we're going to vibrate simply just by existing. Choose healthy growth for everyone over preventing others from healthy growth to feed your own ambition or emotions. 

I really love people, and it really hurts me to see people ruin each other because they don't know how to be healthy. I don't want to live behind a bubble to protect myself. I want to be a part of this world reclaiming health, love, families, and true joy from the connection with creation. 

Now I'm quite tired, but I'm going to go sit in my sauna because I feel my blood stagnating too much. Then I'll relax and recover for the rest of the day. 



Inhaler - If You're Gonna Break My Heart 

(This is Bono's son, Eli Hewson. This is his band. He looks like Bono and occasionally sounds really similar to Bono. This brings me a lot of joy, haha.) 


We woke up faded
From the shape of the night
Couldn't find the words
Couldn't find the light
We got caught in the tide
And the shore was on the other side
There's no other way around up or down
When the sun shines on my insides

If you're gonna break my heart
Smash it to pieces
'Cause I'm not gonna need it
As much as I do right now
Right now, ooh

I showed you mercy
You gave me murder
I got your ten tonne monkey
Jumpin' up on my back
We got caught in the ride
Of bein' young and alive
There's no other way around up or down
But some nights, yeah, that's alright

If you're gonna break my heart
Smash it to pieces
'Cause I'm not gonna need it
As much as I do right now

Say what you're gonna say anyway
Nothing really means as much as you do
I should be on my way but I can't help
Waitin' for you

Thursday, September 5, 2024

One Year and 2 Months Since Moving Here Update

I have a list of things I feel are worth blogging about, but I sit down to write and I can't find the energy to pull them from my head and type them into words. I want to write about how I discovered a new food that I can eat and benefit from. I want to write about how to buy meat, especially when it's difficult to find quality meat where you live. I want to write about how the culture of your local community affects personal health, and the ripple effect that poor health has (this is a story about a stray dog.) I want to write about my new Fitbit and faucet, both of which make my life easier! I want to write about my thoughts on the movie Common Ground, the sequel to Kiss The Ground

The reality is that I'm feeling stuck in perpetual exhaustion. Each day I'm striving to just keep up with the emotional turmoil in my head, the physical demands of my weak body, and the chores around the house. I feel like I'm constantly waiting, so I can't start a project or do anything because I just have to wait, but what am I waiting for? I have no idea. The problem is, when I'm doing things, I feel like I have to rush and do them as fast as possible. I'm sure my adrenals are shot again. I think it would help to have a job so I could have some sort of routine or rhythm in my life to help me pace. Searching for a job has been a nightmare here - my options are all physically demanding for very low pay. I've been applying for jobs, but I've never been invited for an interview. Maybe it's because I'm asking for more than $9/hr and only part-time hours? There is a serious lack of part-time jobs here - the work culture here is very "all or nothing." Work-life balance? That isn't a concept here. I also think I'm judged for being from the north. There's a strong dislike of all the northerners and Californians moving in, and my accent gives me away. 

There is a war inside my head that is seriously taxing me. I have major life decision fatigue, and my inability to take action to fix my life is making me feel worthless. Half of me believes I need to snap out of this slump, pull myself together, and go work any job I can get just like other people do. The other half of me knows my health is too poor to actually do that, and it won't solve my problems because not being healthy enough to do the work will make me feel even worse about myself. This half of me keeps coming up with philosophical reasons why all people, even sick people, have value and shouldn't be expected to be worker bees when they're not able to be. This side of me keeps finding peace with my situation, but then my husband comes home from work and we talk about how tight our money is, and I start to spiral back into the guilt of not helping to earn money. I don't know how to enjoy being me if I feel like I'm not contributing, and he makes a lot of comments about how I'm not earing money. And I spiral back down the whirlpool of despair. How can I be at peace? 

I am on disability, so I am contributing. But is it enough? I do the laundry. I clean the house. I wash all the dishes every day. I run the small errands in town. I cook most dinners. I work myself to exhaustion every day just by trying to keep up with chores. But is it enough? Am I enough? Am I loveable when this is the best I can do? If I'm only loved for what I can do, then I feel like I'll always be a disappointment. I want to be loved for who I am, how I love, and how much better I make life. 

If I felt settled down, I would honestly consider starting a hobby farm with goats and chickens. I like people, but I don't meet the crazy high demands of people. I used to be able to before I got sick. It's not because I'm lazy - I used to thrive from doing physically demanding jobs for long hours. I enjoyed the work too. I miss feeling and actually being CAPABLE. Life would be so much better if I could just use my body and work! But, I have to deal with my reality: my body can't make enough energy, and I get dizzy and weak from using the energy I do make. And I'm not settled down at all. I do not expect to have a long-term situation here in South Carolina. 

I feel like these blog posts are becoming very repetitive, but my head is very repetitive. I'm stuck. I need to get broken out of this cycle of despair. 

I do have positive things to write about, I promise! I'll try. But not right now. I need to lay down. 

I hope that these blogs serve as some sort of record of how awful life is for those of us with ME/CFS. Let this help someone somewhere feel less alone... 

Thursday, July 11, 2024

Product Reviews Due to Changes or Supply Issues

First, let's talk about Fitbit... No, I won't replace it since I have years of history in the app, but it's something I want everyone to understand about Fitbit, especially if you have POTS too. 

Earlier I opened my app to look at my heart rate, and I saw the bpm in real time. I can also see this on my Fitbit screen, but I cannot read my screen outdoors because I have an Inspire 2... and it's impossible to read outside. 


When I went to see my heart rate through the day, however, it doesn't show the 157 bpm. This is because Fitbit only shows an average of every 5 minutes, so it misses my peaks. 



There's an app called Cardiogram that will show you every single BPM reading the Fitbit took. I used to use it when it was free, and it was really enlightening to see how often my heart rate spikes high. Then they started to charge a yearly subscription that was over my budget, so I stopped using it. I feel a little blind by only relying on Fitbit now, but thankfully I've been monitoring for enough years to have learned how my heart is. 



And now let's talk about products I've recommended that have changed or are no longer available... 


1. Starting with Vital Proteins Collagen Creamer, my favorite part of every morning, and the reason my nails have been surviving thyroid issues! 


I have heavily recommended this product for years, but Vital Proteins decided to change the ingredients BEFORE changing the product description on any store front. Their own website, Amazon, Vitacost, and other stores all show the old ingredients, but they're shipping the "new and improved" product instead, which has different ingredients. They removed the silica, but also added stevia (it was good without the stevia, why add it?) Unfortunately, the new product contains Maltodextrin now, which is often made from corn (I'm allergic to corn.) I wrote Vital Proteins to ask if it's made from corn, and they said:
Thank you for reaching out to us!  Our Collagen Creamers have indeed undergone a recent reformulation- this change was made to improve the mixing experience. As this is our new formulation for this product, we will no longer continue to offer the previous version. Our team is working to update the product page to reflect the new formulation. The Maltodextrin used in our product is a combination of corn and tapioca. Based on the information you shared with us we recommend to not consume the product. 

Yes, corn. Thankfully I didn't consume it without looking at the ingredients for changes! Allergies aren't the only problem with this situation. Even if I was not allergic to corn I would never willingly buy and consume something with maltodextrin in it due to how it spikes blood sugar in the body (click the sentence for a link.) I'm too sensitive to blood sugar changes and I can't handle ingredients like this.

At the bottom of that email I noticed something:

In Health,
Team Vital

Customer Care Team
Nestlé Health Science U.S. - VITAL PROTEINS

How long as Nestle owned them? Here's the thing about Nestle: I think they do very evil things and I will not support them until they change their terrible habits, but when they bought Garden of Life they didn't change anything about the quality of the product as far as I could tell. I've read that they do tend to take a hands-off approach to companies they buy. So is this terrible business with their collagen creamer a problem of Nestle? Not sure.. but for the sake of having a scapegoat, I will happily blame Nestle! 

So I switched to Primal Kitchen Collagen Fuel. I don't like it as well, but it's good enough. No bad ingredients, but it also doesn't say grass-fed cows... normally I'd keep looking for something grass-fed, but all the other brands that make collagen creamers add ingredients like maltodextrin to help it mix better in coffee. This is the only option on the market right now without maltodextrin. By the way, Primal Kitchen was bought by Kraft Heinz in 2018. It is what it is. It's hard to avoid these megacorporations in this world unless I live completely on food I grow myself and farmer's markets. It's more possible to do that here in South Carolina than anywhere else I've lived... but I want my collagen!


2. Dickinson's Witch Hazel Wipes, individually wrapped. These have been "out of stock" for a very long time, and they have introduced a new package with multiple sheets per package instead. I'm all for less packaging, but that defeats the purpose. These were a perfect fragrance-free option for cleaning up while traveling. I used them on my hands, face, and body. They were small and fit into my purse or pocket, so I could keep them with me. I have not yet found an alternative that's fragrance-free at a reasonable price point. I bought out the last of the other TN Dickinon's witch hazel brand individual wipes for now, so I'll look for an alternative later when I need to buy something. 


3. Biokleen laundry powder... Now this one has me the most upset of all. I can't link to it because it no longer exists. I prefer powder because it significantly reduces plastic waste, it's pure soap and not mostly water, and it's easier to work with. The problem with powder is they normally require warm to hot water to work. At first, they made their laundry powder with hydrogen peroxide and enzymes, which meant it cleaned and dissolved in cold water really well. I also liked it because it contained zeolite, which binds to mold spores. It helped me decontaminate my clothes. Then they changed their formula and removed the hydrogen peroxide and enzymes. They switched to using citrus as the cleaning agent. I wasn't happy, but it's been working well enough for me. They also offered a fragrance-free version, which normally I would prefer, but I wanted the grapefruit seed oil to help break down biofilms on my clothes and that was only in the citrus version. Now they no longer make it at all. 

Instead, Biokleen started to make laundry sheets. 🚩🚩🚩 Red flag alert!! Let me make something very clear: Laundry sheets are TERRIBLE in every possible way. They claim to be better for the environment because they don't use plastic packaging, but what they don't tell you is that every sheet contains plastic: polyvinyl alcohol. You're literally washing your clothes in plastic if you use these, and no, the plastic does not "magically dissolve." Read this study about how 75% of it ends up in water ways. But it's worse than that: these sheets don't work well. They don't dissolve in cold water, but most natural fibers require cold water. They end up clogging up pipes because they don't dissolve. Look... there's nothing good about laundry sheets. Fine idea for reducing plastic, but wrong execution. I'm really upset that Biokleen went this direction instead of continuing to make their enzyme-based laundry powder. I would have paid more for it if I need to, because it worked... 

So I switched to Dirty Labs. It's liquid, it uses enzymes, it's fragrance-free, works great in cold water, and contains no plastic at all. Honestly, it's a great product. I really like how well it cleans. I like that it's super concentrated, so I'm not buying water. My complaint, unfortunately, is how messy it is. It's very thick and goopy, so it's slow to pour. It's hard to measure the right amount because not all of it will pour out. They made a dispenser bottle, but based on the reviews it's problematic and needs to get perfected before I spend money on it. 


4. ....Oh!! It's back in stock!! I don't have to lament about how my favorite product is out of stock anymore! Lauren Brooke Cosmetiques pressed powder foundation. Yay!!!!!!! This product is very clean, and it works brilliantly. It gives my skin life and a glow, but it doesn't look heavy like foundation. It's breathable and stays in place when I sweat. It's amazing. I frequently wear it without any other make up just because it makes me look normal and healthy.  


Aurora - The Seed

Wednesday, July 10, 2024

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?

Thursday, June 20, 2024

Things I Do at Home

I've been spending all my energy just managing this house... Energy for blogging? Hasn't really existed, but I have the desire to share some things I've been doing. I've also been feeling the return of wrist pain, and my muscles have been really stiff in my arms. Typing isn't flowing like normal, I have to work harder to do it.


1. Grating Frozen Beef Fat:

Yes, I've discovered this trick and it works brilliantly. We bought a quarter cow last year, but the beef was unfortunately 90% lean, so we asked for beef fat to add into the burgers. I'm not a fan of lean burger because they're so dry and unpleasant, but also because the beef fat is very healthy. It fuels my poor brain!  I can write about my experience with healthy vs unhealthy fats in a later post, but beef fat is one of the best for me since I can't have dairy. Anyway, the burgers grill so much better and taste so much richer because of the beef fat! I also use it for seasoning my cast irons, and I'll cook with it occasionally. I'd use it exclusively, but it's a real (excuse me..) bitch to clean up out of my ceramic pans. I go through too many paper towels... so I use it in my cast iron pans, which I only use on the grill or in the oven. 

What I do is.... well, look at the photos:


Yep, I grate that block of FROZEN beef fat like it's cheese. The shavings are light as air, and they do not get sticky as long as they stay frozen. So they key here is to grate it frozen, then put it in the freezer for storage. As long as it's FROZEN it is very easy to work with. 

Cleaning up isn't as terrible as it looks as long as the shavings are still cold. I like to rub it on my skin as a lotion! 


2. Car Wash, Naturally! 

South Carolina pollen is INSANE, so it seems pointless to wash my car, right? But all the bugs and spiders that love to live in my car need to go away. Normal people would drive through an automatic car wash, but I'm really not a fan of them. They can cause damage, they're horrible for the environment, and the soap stinks. So if I can do it at home with fragrance-free soap, why wouldn't I? All I'm missing is a power washer... that would save me a lot of strength and energy. I just used the hose, a giant sponge, and this fragrance-free plant-based car wash:




My car is black, not yellow (pollen)!! Who would have known? This soap worked really well. It's very concentrated, lathered very well, and didn't leave the worst sunspots I've ever seen. The best part? NO SMELL. I bought it on Amazon (click this sentence.) 

Guess how many spiders I found on my car while I washed it? 3... shudder... thankfully I have never seen one inside my car, but they sure love to build webs all over the outside. It's totally unacceptable. 


3. Making Popsicles


Normally I don't like ice in my water, or even cold water. I always drink room temperature or hot liquids. Cold "hurts" my stomach, if that makes sense. It feels like it puts out the fire in my stomach, and I need that fire. That said... It's SO HOT HERE. After I've been outside for a while, especially for a walk, I'm usually sweating and really need to cool down or I'll pass out. So instead of reaching for coconut ice cream (Cosmic Bliss...mmmm....)... I decided to make these instead. 

The pink ones are Ultima Electrolytes in water. It didn't work very well. The powder settled to the bottom of the mold, and I ended up with half of it being a very lightly flavored ice cube. No bueno.
 
The white ones were supposed to be more like an ice cream replacement, and they were pretty good. I used coconut milk, allulose, vanilla, and ground orange peel. I didn't measure, sorry. I kept adding and mixing to taste. I think I watered down the coconut milk too much because it was like licking an ice cube, but the flavor was good! 

4. Sticky Bug Traps! 

I bought them and tried them... and I'm happy to report that these work!! Living in SC means waging a constant battle against bugs, and I refuse to spray pesticides inside the house. I won't argue why in this post - I shouldn't have to explain why I don't want a neurotoxin around my pet birds and I. 


The Max-Catch slides under countertops, the cockroaches get stuck on them, and they can't get off. Brilliant! 

The Safter Plug-In is really effective for all the small flies. It emits a blue UV light that attracts the flies, and then they land on it and can't get off. Brilliant! 

I do see dead roaches, and I have to assume it's because they ate the boric acid tablets I put around the house. I have to assume boric acid works too. I put a layer of diatomaceous earth around the house too, and I've seen lots of dead ants in it.   


Okay, that's all for not folks. More to come in future posts. My hands hurt and I'm way too tired. 

Wednesday, May 1, 2024

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