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

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

Stop Watering the Fake Plastic Trees

I moved back home to North Dakota. I'm 38, living with my parents in their basement, and went back to my former job that I loved. I came home without my husband. I'm happier than ever. Purging the stress of my life has been incredibly healing for me. It's not curing me of my diseases, but my ability to live with disease is improving immensely. 

The phoenix of the Northern Lights directly over my house! I have never seen it with my own eyes until now, and I'm treating it as a sign that I can finally see my life clearly.

My priority in life is building peace, meaning reducing stress.

What motivates you to carry on in life? In my experience, people tend to answer status, wealth, skills, education, building an empire, or anything that gives people pride and a sense of accomplishment. These things are not my primary motivators in life. I'm not saying they're not important and that they don't motivate me at all, but I have learned that I don't wake up daily with motivation to keep advancing in these areas until I have my other basic need met. My basic need is peace in my personal life. What motivates me above all else is building a life of peace.

What peace means to me is having a consistent, stable, secure relationship with my loved ones. Peace means putting energy into building meaningful connections with people I love and care for and having it reciprocated. It also means not living with daily stress over things I have to accomplish, but instead flip it around so that the daily things I have to accomplish come from love and joy. I want my peace to come from a healthy marriage, because I'm built for marriage. I'm highly motivated to do work, chores, or tasks, or whatever for those I love. When it's for love, it's not stressful, it's purposeful. I'm quick to give my time, energy, and money for those I love. Because this is my nature, I need to be very careful about only choosing to love those who love me back without draining me. My perception of my marriage was that it was based on managing stress and avoiding conflict, not about building peace together. I did my part of the daily work to keep the peace, not out of love and joy. I need to build peace through deep connection without resistance, meeting each other's needs, and creating joy with each other. That's why living with my parents is working out brilliantly for me now. I love my parents, they love me, they are always consistent, and I feel very at peace here with them. Peace gives me security, and peace and security together are the foundation of what I need to be happy. Being happy because I have peace and security means I feel open and available to pursue my other goals in life without stress. I'm not unusual, especially for women, but I'm spelling it out like this because I think it needs to be said so plainly. So many people like me are trapped by looking for satisfaction through their work and status, not by looking for peace and security by loving relationships. My satisfaction in my work means nothing to me if I don't have peace at home with those I love.

My relationships have been in poor health for years due to my high stress level and lack of peace. My stress level was so high because my basic needs were not being met, and all the stress caused me to freeze up while waiting for my needs to be met. Years went by in which I felt frozen, in waiting, starving for love and connection, but feeling trapped and unable to build love and connection. My relationships with my friends and family all suffered because I felt too frozen up and unable to act. I also acted very defensive, dismissive, uncaring, rude, and distant because of it. My stress was so high that I couldn't give any of myself to anyone. I didn't like who I was or how I was acting, and I knew the stress was ruining me. I needed to end the stress and find peace again so that I could start to love again. I had to move home and live with my parents to end the stress. And over the past few months I've felt myself enjoying the company of people again. I've been able to be patient with people again, instead of defensive and dismissive. I really need peace in the foundation of my life, and I really needed to free myself from people and situations that drain my peace and caused me stress. 

It's not just unresolved relationship stress that destroys my peace. I've been learning how everything artificial degrades my peace. I've known for years to avoid artificial fabrics in my clothes and artificial ingredients in my food, because they make me feel sick. I'm finding it's also the same with artificial relationships, artificial information, artificial intelligence, artificial art, and so on. All the fake information, half-truths, synthetic images and videos, and misguided propaganda on social media and news media is enough to make me sick. The trouble is, it's making everyone around me sick too, and it's poisoning my relationships with real people. It's difficult to hold conversations with people when they think they are educated because of everything they absorb from social media, but aren't interested in hearing other information or points of view. I really value the scientific process and critical thinking skills so we can find the truth on any matter. I want to live in truth. I really enjoy speculation, theory, and creative fictions when they're properly labeled as such. What I can't stand, however, are lies that are told as if they are the truth. Living in these times that are dominated by lies makes it difficult to safeguard my peace, but I can do it as long as I live an honest life at home with my loved ones. (I'm not leaving social media, because there's still so much good it does, but I learned to stop engaging with lies. I unfollow, and move on. I love to learn about the local community through facebook. I enjoy following my friends. I like to learn from trusted people. I like the private support groups. There is a lot of good on social media, but it's getting overrun with a lot of artificial and misinformation.)

So instead of wasting time scrolling through all the deception and energy-draining propaganda on TV and social media, I'm choosing to use my personal time on playing single-player video games, reading books, drawing, listening to music, stretching, going for walks, doing chores that keep my space organized and clean, cooking new things, reading scientific articles (I love National Geographic), and so on. I'm trying to choose peace over anything that amplifies my stress. I'm choosing activities that require focus, not contribute to my brain rot. I'm choosing to spend time with people who can hold a conversation without distraction or looking at their phones, talk honestly and from their hearts, and also want connection instead of just to use me. 

I need PEACE. I don't need to live a life constantly on-guard against lies, manipulation, expectations that don't align with me, and indulging in junk entertainment and junk food. 

So all that said... 

Did I make the right choice to leave my stressful life behind so that I could work on my peace? Is it helping me manage my health issues? Is my health improving at all?

I wrote in my last post that yes, I'm seeing improvement in some areas with my health. I'm not profoundly better, but I'm not crashing as hard when I spend energy. I'm working harder at work than I have in years, and I do come home and have a crash, but they're not as serious as they used to be. I'm able to find the strength to get up and prepare a meal for myself and eat. My heart rate is still jumping up really high when I get up too fast, I'm still experiencing vertigo very easily, I'm still sweating like crazy at random times, my finger tips still go numb randomly, I'm still having adrenaline attacks at night that wake me up violently, and so on. I did really well for a couple of months when I first moved back here, but I think that was my body letting down and relaxing. Now that I'm working again and trying to keep up more of a routine, I'm having more symptoms. But I can see that I'm a lot more resilient because I'm not spending energy I don't have on stress or people. 

Another factor is that my anxiety is gone. I'm calm. I'm not worried about anything. I'm rational, focused on each moment, and not drowning in thoughts. I'm feeling a lot more creative, curious, patient, and interested. I'm not on the defense anymore. I'm not trying to always prove myself. I'm just me, in this moment, calm and collected. 

Something that concerns me very much, however, is the intense gut pain I keep having in the same area. Sometimes it's the pain of lasers cutting through me, sometimes it's sharp razor blades, and sometimes it's a giant sword through my entire gut. I don't know if it's endometriosis, actual gut problems, scar tissue, or something else. It's been intense enough and frequent enough to make me consider seeing a specialist. We'll see. My new Medicare plan begins in January. 


On another note, I found a tea mug that I really love! As you might know, I drink tea all day long.
Amazon.com: DOPUDO Glass Tea Cup with Infuser and Lid, 17.6oz/520ml Large Borosilicate Teacup,Tea Glass, Clear Mug for Loose Leaf Tea, Blooming Tea, Microwave & Dishwasher Safe - Tea Maker Gift for Birthday : Home & Kitchen

I've been trying to avoid using metal in my loose leaf tea, because metal can deactivate some herbal properties. My acupuncturist taught me that, thankfully. I got a little frustrated with the Rishi paper bags for tea, so this pure glass solution is solving all of my tea problems. 

(All ingredients listed below are organic and from Frontier Co-op unless otherwise stated. I buy them from my work place, where we have a huge wall of bulk herbs that I can buy by the weight. So I usually buy $2 or less of each at a time. I don't use exact measurements either, usually just a large pinch of each.)

My favorite winter-time tea has been: 

Cut and sifted ginger

Cloves

Ceylon Cinnamon

Mt. Capra Mineral Whey Powder (I add this to the mug, not the strainer)

  

And my favorite evening-time tea has been:

Blue lotus flower (Anima Mundi brand)

Butterfly Pea Flower

Lemon balm

Damiana 
Mt. Capra Mineral Whey Powder (I add this to the mug, not the strainer)

But right now I need some caffeine and I'm cold, so I made:

Indian green tea

Cut and sifted ginger

Cloves

Coconut flakes

Redmond Real Salt 

Rhodes - Be The Bird

'Cause you can fly

Be the bird

 Fly away

 See the world

 You'll be the news everybody heard

You'll never lose anything you've learnt

 Just promise me you'll keep going

 Just keep going and I'll keep telling you you're flying

(Radiohead Cover) Gin Blossoms - Fake Plastic Trees

Her green plastic watering can

For her fake Chinese rubber plant

In the fake plastic earth

That she bought from a rubber man

In a town full of rubber plans

To get rid of itself

It wears her out

"What A Day, What a Life, Ahhhh"

Oh, just think about how much I could be writing about! What a year. What a drain. Energy vampires around every corner. They suck me dry of the desire to write about it. I do have a desire to share this with you all though.

I know I have written about music many times here. Music is incredibly important to my mental, emotional, and spiritual health. There are several artists who speak to me that I love and adore, but London Grammar is the one band that produces the sounds that speaks about me. They are the sound I would produce if my body was a musical instrument. Want to understand how I'm feeling on the inside? There's always a London Grammar song for that. Have you seen those devices that amplify the energy that plants emit, and it sounds like ambient music? Well, London Grammar is that device for my body.

"What A Day" in particular right now.

I want to break this down for you, because I think this is a great way to explain what I feel like most of the time.

It starts with Hannah's higher head voice breaking down into a low vocal fry soft scream, which she uses to state the mood. Then the slow driving beat of the piano, and her low voice slowly erupts into a type of subtle scream with her "ahhhh." Slowly the drums carry the driving beat forward while the piano sounds more erratic if you pay attention to it.

The textures of the various beats from the piano, drums, and later the guitar perfectly fit my heart beat and adrenaline. They mingle together like they're at odds with each other. They express the current that keeps flowing in my body to keep me going. Do you hear how they sound unsettled, never quite resolving into a comfortable sound? I have that type of forced drive always coursing through me. But even though the tempo is not slow, do you hear how her vocals sound slow, dissociated, and not matching the beat? How her vocals are a different current on top of the foundation? That's my inner voice. Very low energy, despite that drive below the surface, and what I express comes out as a soft wandering frantic anxiety. It takes the majority of the song before she sings an actual melody with coherent phrases, and then it's short lived before she breaks her vocals down again into the pleading soft screams. Do you hear how this song expresses the evening at the end of a long hard day, when cortisol levels should be dropping so you can wind down, but you just can't let go to actually rest? That's the state I live in 90% of the time. I'd like to see you function like a normal human being when this is your best energy level.

December Doctor Appointments Part 2

Part 2 about how my doctor visits from December went... I haven't been able to even consider writing this until now.

I got thrown so off balance from that trip that it's nearly March and I'm still trying to reclaim my balance and stability. Going off all my supplements and cheating a bit on my diet really upset my body. It's been a roller coaster ride of extra long PMS (about half the month), mood swings including total lethargy/ apathy and depression, weight gain, fibromyalgia flares like I used to get before going to see my doctor for the first time, inflammation and sore joints, lots of gut irritability, extra dry peeling skin, increased sensitivity to light and sound, feeling jumpy and easily startled, continued palpations...

But honestly, the worst of all has been my temperature issues. I've been freezing to the point of shaking while sitting in an extra hot bath or in front of the space heater. My skin will turn red or swear, but I still feel hypothermic internally. I can't even feel the heat on my skin sometimes. Other times I'll feel like I'm running a fever, but if I let my skin be exposed to the air my skin will freeze. It's torture - I can't feel comfortable!

In the last few weeks I've started to have what I think are increasing histamine issues. Any food I eat is leaving my skin itchy with occasional small hives or welts, but worse than that is it leaves me fidgety. I can't sit still without feeling the need to squirm, like ants crawling in my blood stream.

Over the past week I've been fighting low blood pressure too, to the point that even salt and licorice aren't helping enough. Exercise raises my systolic about 5 points, but not my diastolic. I question the accuracy of my blood pressure machine a little bit, but it hasn't given me a reading over 95/55. The thing is... the readings feel accurate. I never feel truly sleepy - "tired" to me feels like I'm overspent but still have to burn off a chocolate bar before I can fall asleep (I don't eat sugar.) This week I've been feeling so sleepy often, and caffeine is making it worse. I'm fairly confident I crashed my adrenals. Again.

I'm fighting to regain stability. My body was really relying on my supplements and diet, and now I'm afraid to even consider stopping them again.

So was it worth it? The not taking my supplements and cheating on my diet for weeks so I could see a neurologist?

Well... I don't know yet. Dr. Cohen was great to work with, I really respect him. I don't have conclusive results from the testing yet, though. Based on the Zio Patch results he wants me to go see a cardiologist. I'm going to go, but I can't afford to go quiet yet. I also want winter to be over before I do more traveling. I've seen lots of cardiologists in my life for my Pulmonary Stenosis, and I'm tired of hearing the same thing from each one: "Not quite normal, but you're okay, I think, so just come back in a year to redo the tests." I think it's finally time to see a specialist - a cardiologist who is Dysautonomia literate. A cardiologist who can explain my heart rate issues. Someone who can actually tell me what's not quite normal and what to do about it.

I think what was worth it was getting the Zio Patch test done so that a cardiologist can worth with me right away rather than just doing more testing. My Zio Patch showed some issues. But I also have some issues with it.




The problem is that I clicked the button to record a symptom way more than it says. I was told on the phone that I didn't click the button during some of my heart's biggest results, therefore it wasn't considered to be problematic on my test results. The problem is, I'm fairly sure the Zio Patch only recorded about half of my button presses, so I'm willing to bet I did actually press the button during those times. It infuriates me. Their diary log for why I pressed buttons wasn't large enough, so I included a note page full of why I pressed the button. That note page was clearly ignored. But the results I do have do show problems. I just don't know if these results are concerning enough to get a cardiologist to take me seriously.

So no, I'm not sure if it was worth it yet. Either way, the Zio Patch left me a horribly itchy nasty rash for 2 weeks after I took it off, and that was tormenting at times. The rash crawled up into my neck and arm pits, so it wasn't possible to just ignore. So I need the results to be worth it to make up for that rash! :)

As for my other tests...
Lyme testing showed a past mycoplasma infection and one or two bands positive for Lyme - can't remember and can't find results. Either way, 3 bands are needed for a Lyme diagnoses. Yes, I did do the Quest testing, not the Igenix. It's very possible this test wasn't sensitive enough, I know. I chose to do the Quest testing knowing all this due to cost and availability. I knew it might only be a starting point.

The echo? Well no one ever contacted me to give me results. My doctor said he was told the results didn't show some other disease. The nurse that performed the echo was the only person to tell me he saw the valve with the Pulmonary Stenosis. So I know it's still there, at least. I'm hoping that the cardiologist I see can review the results for me.


Up next is my hearing with the judge for my disability case. 2.5 years of appeals are leading to this hearing. I don't have much conclusive evidence to present to them, just lots of doctor visits and labs. I know people who have won with less diagnoses than I have, but I highly doubt I'll win - at least not here in North Dakota. They don't normally give disability to people under age 50 because they say "young people are resilient." I'm not totally bedridden or in a coma, so therefore I can do some type of work. They have no understanding of how disabling chronic fatigue is, and it's been very obvious through the whole case. I keep arguing about the fatigue (and I am officially diagnosed with it), but they kept denying me saying the fatigue isn't "severe enough." They don't have a clue, and they're not trying to listen to my doctors or look at me themselves. I'm ready for it to be over. The stress the case has caused me has not helped at all. I often wish I never applied at all. I felt pressured into trying to do something for our financial situation, but this case has been more work than I've been able to handle.

Anyway, I'll update this blog when I have a plan for the cardiologist... yay... I'm so exhausted. I just want my life back. I don't want my life to be about my health anymore. Tired of this. I just want to be a person that can work towards life goals and dreams again. I want kids, I want to own a house, I want to be able to brag about achievements in my career... I want a career... yeah. I'm tired of this.

December 2017 Doctor Vists and Tests Part 1

I have a lot to explain, and for the first time in months I might have what it takes to sit down and type it out. I finally took my supplements this morning, and they're helping! :)

For a little over a year there has been this lingering question mark over my head asking if I have Postural Orthostatic Tachycardia Syndrome, or POTS for short, a form of Dysautonomia. I had a couple medical practitioners say that they suspected POTS. POTS is defined as your pulse going up at least 30 bpm when you stand up then sustaining a high pulse for a little while (but the length of sustaining is what confuses me.)

I got myself a pulse oxygen meter that clips onto my finger in order to see what happens to my pulse when I stand up. About half of the time my pulse does shoot up at least 30 bpm, often way more than that. Sometimes it stays that high for a minute or two, but normally what happens is my pulse shoots up, then goes down, then goes up again, then goes down again, then goes up again... it's a roller coaster. I took some videos of this happening and sent them to a Neurologist in New Hampshire who is an expert in Dysautonomia that my primary doctor referred me to. He took me on as a patient, which was a huge relief to me since he's very difficult to get into.

Why not see someone locally in North Dakota? Because POTS isn't well understood, and it takes a doctor with training in dysautonomia to be able to diagnose it. There isn't anyone in ND except for one pediatric doctor that diagnoses, and I'm not a child. There doesn't even appear to be a Tilt Table in ND. If I went through the local hospital for a referral they would have sent me to Mayo in Rochester, MN. It's an 8 hour drive from here, and very expensive. Too expensive compared to flying somewhere to see a highly rated dysautonomia specialist.

On the trip to NH I also scheduled a Tilt Table Test, a Echocardiogram, Lyme Disease testing, a visit with the Neurologist, and a visit with my primary doctor (my Naturopathic doctor.) It was a very full trip. In preparation for the visits I had to be off all my supplements for a few weeks prior. I posted a bit about that experience, but in short, I didn't do quite as badly as I expected without the supplements, but I did get worse. High adrenaline and crashing during the day, high adrenaline and interrupted poor sleep at night. My digestion became poor and my joints and muscles ached. I ended up gaining between 10-15 lbs (lots of fluctuation day-to-day.) My mood deteriorated rapidly, and my periods became irregular. My stress level was through the roof and I couldn't control it, even while relaxing.

On the first day of the trip I went to Elliot Cardiology in Manchester, NH. I started with the Tilt Table Test. I had to fast at least 4 hours before the test to make sure I didn't vomit during the test and end up choking on it. As someone who has to eat every 2 hours to stay strong enough to function, that was hard, and then the test took about an hour. After the test my blood sugar was 72, which was barely above hypoglycemic, so I was actually impressed with my body that it didn't get hypoglycemic after all that, but I was very shaky.

The test was... not really what I was expecting. I was strapped down to the bed. It took 3 nurses to find a vein in my arm to put an IV into - the IV was to raise my blood volume back up with saline in case my blood pressure dropped too low. They almost gave up on using my arms for the IV, but the last nurse they called in wasn't afraid to dig a little deeper and she managed to get the needle into my vein. They hooked me up to an EKG machine, and took my blood pressure. I was expecting that they would let me lay calmly for a while to get my body down to baseline, but next thing I knew, I was being tilted upright on the bed. I definitely was feeling nervous and high strung, definitely not at my baseline before they tilted me. I started to get upset because I didn't feel like they were doing the test right, but the tilting made me feel so weak that all I could do was focus on surviving the tilt. In that moment I understood why POTS patients say the TTT can be really painful and difficult to endure. During the tilt I felt this deep pressure moving downward in my body, my vision narrowed towards black, and I started crying. Tons of tears just poured out and they had to give me tissues. It was horrible - but a feeling I was familiar with. I've felt like that before when standing up too quickly, but this was the most extreme. I'm not a fainter, my body always fights the feelings like I'm about to faint. If I was a fainter, that's when I would have fainted and I would have passed that test criteria. I couldn't communicate well, Thoughts were not working well, so when the nurses asked how I was doing, I just got out the words "weak, I can't stop crying." But then I was standing there strapped to this bed at an 80º tilt. Within about 5 minutes I felt better. My body was recovering. I didn't understand what to do - I felt well supported by this bed, so my body wasn't working to stay upright. I had no idea if I was supposed to relax all my muscles and stop supporting myself or if I was to stay there, legs locked upright. I had waves of hot flashes, waves of weakness, but never fainted. One nurse told me, "You're not quite normal," and I never had a chance to ask her what the meant. After the test she had to run before I could question her.

After 30 minutes they laid me back down flat. This is the part that's as bad as the tilt itself. I was able to stand up, but was very weak and shaky. I was trembling. I talked to the nurses for about 30 seconds, then I tried to take a step. I couldn't. My leg muscles gave out and I had to fall back down on the bed. I was crying hard again, shaking almost violently, freezing cold, and felt so weak. The nurses argued a bit about if it was an anxiety attack, hypoglycemia, or adrenal issues. The one nurse was sure it was adrenal, but they're not allowed to diagnose. That's when they took my blood sugar and found I was borderline hypoglycemic. On this note, I was disappointed that they did not do the version of the TTT in which they infused adrenaline through an IV if I didn't faint, and then do blood labs to see how my adrenals react to the IV. This part of the test often makes people faint, and then they know the syncope is from adrenal issues. I know I have adrenal issues, so I wanted that part of the test done and didn't get it.

I couldn't walk on my own, so they put me in a wheelchair and delivered me to the echocardiogram room. I needed the echo to check on the status of my Pulmonary Stenosis, which I've had since birth and it never went away. It's still there. That's about all I learned from the test. I'm thinking of sending all my past echos to a cardiologist there and having them do some comparisons.

That was the end of the first day of testing. I was weak and low energy the rest of the day.

The next day I saw my Neurologist at Dartmouth-Hitchcock Medical Center. But let me back up a bit: I almost didn't a couple of times. I got a phone call from his office the day before our flight out there saying that he wanted to cancel my appointment because the Autonomic Nervous System testing equipment broke and he couldn't test me. I had to beg to keep the appointment, even just a consult, and they agreed because I was traveling. The day of, I had two major strikes against me going: I started my period that day (I have to roll my eyes at my body choosing the worst times), and the weather was horrific. 3 inches of snow in a few hours time, icy roads, and near whiteout conditions. An hour and 20 min drive took us 2 hours, and I ended up getting there 10 minutes late. 5 more minutes and he wouldn't have seen me. Or so the receptionist said, but the doctor was forgiving and spent a good amount of time with me. I didn't have time to go to the bathroom before seeing him, so I was cramping badly and was uncomfortable. My blood pressure was 120 something over 63 and my pulse was over 100, if I remember correctly, which showed just how stressed out I was about my bathroom needs, getting to see this doctor finally, and being so rushed in bad weather to get there.

He sat me down and let me talk - he had me tell him my history and all my symptoms. He gave me a good amount of time and really listened, which blew my mind. He was amazing. He took me seriously, didn't try brushing off anything I said. He even knew about the damage vitamin b6 toxicity can do and understood what I went through with my nerve pain. He had me to do some nerve conduction testing, which turned out normal. He also showed me the results of the TTT:


I went up over 30 bpm, the criteria for POTS. But it doesn't say if it was sustained. It could also be POTS symptoms caused by something else. So he needs more information.We decided that since he wasn't able to do the autonomic nervous system testing that he would have me wear a heart monitor for 14 days - a Zio XT Patch...


...Which meant not being able to go back on my supplements. My doctor and I agreed that we need to measure my heart without the medical aids to show how I am without support. Today marked 14 days, so I ripped the monitor off and took a hot shower and my supplements. The patch was itchy the whole time and it left me this pretty rash:


I'll tell the rest of the story in Part 2, as I have to go to work now. :)

Upcoming Medical Appointments and Symptom List

It upsets me that I have so much I really want to write about in this blog, but I just can't find the energy. I've been very surprised and humbled by how many views my posts are getting. Thank you so much for the support, and I very much hope that what I'm sharing helps you!

I just can't find the energy to reply to people I really care about on Facebook messenger. I'm too brain dead. I rarely watch TV on my own because I'd rather be doing something, and so video games help me relax while being interactive, but lately I've found myself watching more and more because it allows me to just lay on the couch and zone out. My games are calling to me to be played, but I know I can't think well enough to enjoy them. So please understand that I'm not ignoring anyone - I'm just trying to make it day by day, waiting for a time when I feel up to replying to messages or writing a blog post. I'm not even up to blogging right now, but people are asking about me, so I wanted to explain.

I'm tapering off all my pills again for some doctor appointments next month. I'm going to see a Cardiologist for a Tilt Table test to officially test for POTS and an Echocardiogram to monitor my Pulmonary Stenosis (heart murmur I was born with that never "went away.") Then I'm seeing a Neurologist for POTS and Chronic Fatigue, and he's going to run a nerve conduction test. Then I'm going to see my Naturopathic doctor (Dr. Bier at HumanNatureNaturalHealth.com) for an exam and treatments. I have to be at my worst for the Tilt Table test, which means I need to taper off my pills that help me manage my day-to-day life. It also means I need to stop seeing the Chiropractor since adjustments do help my symptoms subside for a little while.

Needless to say, this is leaving me exhausted: the stress of planning the trip to New Hampshire to see these doctors alone is too much stress. Finding an AirBNB that is fragrance-free, finding plane tickets, figuring out how to pack light for a trip in the winter... my parents have done most of the work and it's still too much stress for me. Oh, and how could I forget how difficult and time consuming it was to get the appointments scheduled? I felt bad for how much work I put my doctor through to get me these appointments. Now I have to call Disability to move my hearing, which is going to be a giant headache... and I honestly haven't had it in me to make the phone call yet. My appointments only worked out on the day that my hearing is scheduled for. I'm planning on making that phone call after my tea kicks in. Or why couldn't I just do it over Skype? My hearing is set to be a teleconference over a TV anyway...

In the midst of all this, the motor and pump on our dishwasher broke, and it was out of commission for almost 2 weeks. Thankfully the warranty covered the repair!

I'm also trying to manage at work through all of this - my goal has been to not lose any shifts. This is challenging. As long as my matcha powder in my water keeps giving me the strength to work, I can work. When the caffeine isn't enough, I can't do it. And I'm getting more and more vertigo without taking my b12. I took one b12 the other day because the vertigo was too strong for me to be able to drive myself to work. The b12 killed the vertigo - it worked. But I'm not supposed to be taking it. So I'm getting really nervous about working, but I can't afford not to. I have to save ALL of my strength and energy for work, which means chores at home are not getting done. My mom was really helpful and very nice and came to stay with us twice so she could do chores for me. My husband works so much that he shouldn't have to do any, and I don't want him to lose his health from overworking.

I'm really struggling - if only I stopped having things I had to do. If work was my only obligation I could make it. But things I have to do keep coming on, one thing after the other. Why can't I just rest? Why is everything full of phone calls and paperwork? Every day I have to accomplish SOMETHING... it's always SOMETHING. I'm not well enough to do all of this. I wish I had a disability lawyer hired to handle it all for me... but the work of getting a lawyer is way too overwhelming. Even if I get diagnosed, I don't think I'll win disability. North Dakota doesn't like to give it to people under age 50 because, and I quote, "Young people are resilient." You have no idea how angry this makes me. When I finally figure out how to recover and improve my health I'm going to fight this notion in our local government and strive to educate our judges. If I was resilient then I wouldn't have a health problem worth asking for disability over now would I? I'm asking for disability BECAUSE I'm not NOT resilient enough. And that's not my fault. I didn't choose to be this sick.

I'm honestly tempted to drop my case entirely, move to another state, and try again there. North Dakota is a difficult place to live if you have medical needs, and not just because of the rough extreme weather. The weather alone makes it difficult, and healthy people just don't understand that. When you're very sensitive to pressure changes, temperature changes, and extreme temperatures, but you also have to deal with shoveling and driving in sometimes large amounts of snow and ice... it's difficult. You have to be a resilient and rugged person to live here. I used to be. But it takes energy to be, energy I no longer have. I get so much crap from people here when I get upset over several inches or more of snow - they say things like, "Suck it up, Buttercup!" or "You'll get used to it." or "The rest of us deal with it, so you can too." There was a time when I was used to it and could handle it, but dealing with it takes energy. They all have the energy, and they don't know what it's like to not have the energy. It's very insulting to me to hear things like this because I used to take pride in being able to handle the rough situations. I used to not get anxiety over a little extra hardship. They didn't know me back then, when I was healthy and could take on the world. Back when a challenge was just an opportunity to succeed. I can't think that way anymore without getting sicker.




I've been getting asked what my symptoms are that have led me to getting these tests done. Here's a non-comprehensive list:

- Dizzy and short of breath when standing up. I'll see colors spinning all around me for several seconds before things come back into focus.

- Heart pounds so hard that it makes my teeth chatter with each beat. Sometimes it feels like my heart will pop out of my neck.

- Heart palpitations, especially when laying down.

- When I measure my heart rate from laying or sitting to standing up, it often (but not always) goes up 40 or more beats per minute. Sometimes it doesn't change at all, despite feeling very weak. It also jumps all over the place when I'm laying still - it's jumped around 30 bpm when I was laying perfectly still except for breathing. It would go up and down and up and down within 30 bpm.

- Normal blood pressure is typically about 100/60, but have been down to 90/50 frequently enough. Licorice does raise it back up temporarily. After exercising my systolic tends to rise a lot, but diastolic doesn't change much.

- Sharp shooting pains in my chest. Sometimes my whole chest will feel sore like I worked out the muscles too hard.

- Vertigo that comes and goes.

- Blurred vision or very tired vision, making it so that I end up squinting when trying to keep eye contact with someone

- Constant neck and shoulder tension, sometimes so tense that it gives me an earache or toothache. I get regular muscle work done and it's not enough.

- Headache at the top of my neck that comes and goes.

- Tinnitus in my ears that frequently changes in terms of severity

- Periods of derelization and depersonalization, where reality feels like a dream that I'm not actively involved in. Like I'm viewing reality on a TV and I'm not actually in it, but have to act like I am in it... because I am.

- Adrenaline rushes and crashes. I can shake and run around like a crazy person during the adrenaline rushes, and when I crash I crash so hard that I quite honestly can't get up. I often wake up with these adrenaline rushes in the middle of the night. Very similar to anxiety attacks, but it's not anxiety.

- Legs and arms can suddenly feel like jello. They can lose strength and feel wobbly.

- Never ending bloating issues, with sharp stabbing gut pains.

- Icy cold arms and legs while my torso is sweating as though it's in a sauna.

- Sweating when I feel cold, or being freezing cold when others are comfortable in t-shirts.

- Inability to determine if temperature is safe, like when I'm doing the dishes or taking a bath I can pour water that's way too hot and not realize I'm burning until my heart rate skyrockets, my skin is bright red, and I'm sweating like crazy. Other times the water will feel way too hot and I'll sweat like crazy when it's actually colder than I normally like it.

- Pale flushed skin, sometimes associated with my skin being very tender to touch, the way skin feels when you have the flu.

- I never feel hydrated, even when I drink so much electrolyte water that my stomach wants to vomit from being over filled with water. I'm always feeling dry. Sometimes I have a problem of needing to go to the bathroom every 5 minutes, other times I'm wondering why I can't go to the bathroom more often when I feel like I'm flooding myself.

- Energy so low that it can be exhausting to just grill a steak for myself.

- Energy so low that it's difficult to hold a conversation with someone because I can't focus on listening or forming replies.

- Slurring my speech and/ or stuttering.

- Joint pain that comes and goes

- Falling asleep is really very extremely difficult, even when I'm exhausted.

- Sleep is not restful. I either wake up feeling high adrenaline that gets me moving quickly, and I crash very hard once I eat breakfast, or I take until 11 or noon to get out of bed because I'm feeling so incredibly tired.

- My tongue sometimes swells up so much it doesn't fit in my teeth.

- I can't sit with my feet on the floor without getting overly tired and weak, so I sit on chairs with them curled up towards my chest.

- I can't lay still long without getting fidgety, my body needing to move.

- I can't just sit and talk to someone over tea. I HAVE to be doing something, even if it's just playing with something in my hands, but if you want to talk to me I should be doing the dishes or cleaning something while we're talking. If I'm not moving, I crash hard and can't focus. But if I move too much I get exhausted and need to go lay down where it's quiet. So in other words, being social is draining. I like the idea of having friends, but not always the reality of spending time with friends.

- Reactive to fragrances and other synthetics, meaning: widespread muscle pain, gut cramping, heart burn, vision loss, emotional instability issues, headaches, sinus aches (I got a sinus infection from going into a very smelly Staples once), heart pounding and palpations, rashes...

- Very reactive to foods, making it so I can't cheat on my diet without paying hard for it. Hives, rashes, adrenaline surge, nervous ticks, severe anger, stomach and gut pain, very high painful heart rate, bowel and bladder control issues, muscle pain...

- Mold is my worst enemy. It his me harder than anything else. Typically with nose bleeds, chest tightness, emotional instability to the extreme, unable to breath deeply enough, widespread pain, a major sense of fear and dread washes over me...

- ALL of my symptoms get MUCH worse during PMS and my period. My periods are very very heavy and painful. Very difficult to manage.

- I can't have a slightly confrontational talk with someone without shivering and sweating, and it feels like helium fills up my head. I avoid confrontation in person. If I has to be done I prefer to say most of it through text (email or whatever) and then finish talking about it in person when the shock is over.


Here's some video evidence of my heart rate issues. I uploaded my video to youtube and would rather link to it than embed it since blogger gives me too many issues with embedding videos:
https://www.youtube.com/watch?v=L5uUA-Qydps


...I'm sure I'm forgetting some important symptoms, but this should give you a pretty good idea of what it's like to be me. My supplements help most of these symptoms to be mild and manageable as long as I don't over tax myself, but I'm also paying about $600/ month for them. They're working much better than anything else I've tried, but I've stopped improving and they're just maintaining me.

I need to have an MD determine if I have POTS or something else, because I need to be able to either accept that I can't improve more than this or that I can try something else to improve. I can't plan my life out around the not knowing if I can improve or not. And unfortunately, only an MD has the credentials to make that determination. No employer or assistance programs will accept anything other than the right type of MD's diagnosis. I'm not going because my Naturopathic doctor isn't helping (he's been the most helpful person I've ever worked with), I'm going because I need to go the conventional accepted route to get what I need to manage life.

And it's oh so stressful.

Don't Tell Me, "Just Exercise!"

I get pretty upset when people tell me, "Just exercise more! Exercise cures everything!" It shows they have no understanding of my illness. It also shows that they don't notice how much exercise I do get and how proud I am about it. I lift weights at home, use my Pilates ring, go on 1-2 mile walks a couple times a week, and work at a job in which I'm on my feet the whole time. I also do 50-100 jumping jacks at a time when I have adrenaline rushes to burn off, and that's almost daily. To you this might sound like a joke, but to me it's more than I was able to do a couple of years ago and I'm very proud of my progress.

On a day like today I can't simply just get up and exercise to fix my symptoms. My head feels like a hot air balloon, like it might float away. It's making me dizzy, and when I get up the POTS symptoms kick in. I instantly get clammy with sweat, my heart rate skyrockets, my heart palpitates, I see colors spinning all around me and my vision blurs, and my muscles loose strength. It's as though I'm on the verge of fainting, but I don't faint easily. PMS made me faint once, but I'm not PMSing right now. I must let myself sit down or drop to the floor until my heart calms down and my vision returns. Then when I stand back up again I have to do it very slowly, and I might start feeling the symptoms again if I start walking too soon. As long as I'm still I feel okay, but I can't stay still for too long without my blood pressure getting too low and I crash.

I'm not feeling like this every day. I don't feel the POTS symptoms every day. Other days I can just have fatigue so strong that even walking around the house makes the fatigue worse. On days like that I have to do nothing. My body is begging for time to rest and repair, and if I dare try to exert myself it's going to give me the equivalent of the Blue Screen of Death (the worst error message your computer can give you.) On days like this I don't necessary get dizzy with high heart rate when getting up. I just have to force my muscles to move, because they really really don't want to. It's more than just willpower to move my legs, it's necessity. If I don't walk to the kitchen I won't eat. If I don't eat I'll get hypoglycemic again. If I get hypoglycemic I might be so far gone that I'll go into a coma. Of course I get terribly anxiety on these days, so I can't just lay in bed resting. I have to somehow shut off my brain with homeopathic pellets and pills. They can leave my brain too numb to enjoy anything, but not let me just fall asleep.

Some days I think I'm having a good enough day and I do go out for that long walk, only to come home and measure my blood sugar in the 60's or so. I get symptomatic when my blood sugar falls below 85 - and before you argue that's a healthy number, you need to understand that my body can't handle being below 85 even if your body feels best at that number. When I'm at about 85 I start to feel the tremors and shakes, the low dull headache, the mild tunnel vision, and the deep cold start to settle into my body. We all have different bodies with different needs.

I'm not getting low blood sugar quite as easily these days, but my diet is so careful and I still take my chromium with pancreas glandular. I'm also having fewer days with the severe chronic fatigue that forces me to do nothing all day. I'm recovering faster from over excretion, and I'm finding that I have more days where going for that long walk doesn't make me crash. I never come home from that long walk feeling better than before I went, it does take a lot of energy for me, but I'm finding I crash less often after my walks. That said, what if I over exercise to try to improve my health and end up going backwards by overspending myself? I don't want to lose any progress I've made with my health. I need to be careful with how I spend my energy.

...But I am having more and more days when I go to work not feeling rested enough to handle the shift without some sort of boost. I used to only add matcha to my water bottle on days when I really needed the caffeine, but it's turned into needing that matcha every shift, 4 days a week. I haven't had a shift in a few months in which I've felt able to work without the caffeine. So I can feel myself sliding backwards from over extending myself. Ideally, I'd take a few weeks off of work to let my body fully rest, but financially I cannot afford to do that. It also wouldn't be fair to my co-workers. And that job is physical. It is exercise for me. Being on my feet for 4 hours, walking around the store all day, lifting heavy boxes, going up and down from bottom shelf to top shelf... I feel my best in jobs like this. My blood needs to keep moving to feel well. I'd do so much worse at a desk job. But it's very draining. I do so little at home because I save up all my energy and strength for being at work.

I'm getting so sick of hearing, "Just exercise!" If you're able to say that to me, you clearly have never experienced this level of fatigue. Don't argue with me. Arguing makes me angry and drains me way too quickly. Anger doesn't settle down for hours in my body. My body can't processes strong emotions well. My adrenals can't keep up with the energy strong emotions take. All I'm asking is that if you want to give me a suggestion then please don't give it to me as a demand. Don't tell me what to do. Respect my needs. I'm very open to suggestions when they're given to me in a gentle non-judgmental manor after I've been listened to. But don't come on strong barking orders at me when you haven't listened to what I'm going through. I'm likely to shut you out of my life and ignore you as a defense.  

Mental Health Part 2

I won't apologize for my last post in which I worried some of you. Thank you to those of you who reached out and expressed concern. I believe the post was important to write because I needed to express how much I was suffering. The way my illnesses affect my mental health is important to solving my illnesses, and hopefully helps others make sense of their illnesses.

Last month I flew out to see my doctor again. It was a long overdue much needed appointment. I believe the therapies I had done in the clinic stirred up some toxins in my body, which probably contributed to that bought of severe depression I just went through. It certainly made a difference in my body - I can feel less of a toxic body burden weighing me down. But I did stir up toxicity nonetheless.

I'm doing better again. Anxiety attacks have calmed down, and the brain fog has lifted enough that I no longer am stuck in depression. I don't know if it's due to my body calming down after the therapies, or perhaps it's because the sun finally came out. Suddenly, literally over night, the temps went from 60's to 90's. It's been in the 90's all week. The sun feels AMAZING. What's interesting about that is that my lab test results came back, and it said my vitamin D level is at 88. 88!!! It's taken 3 years to raise my level to where it's almost supposed to be (I should be in the 90's according to my doctor.) 3 years of 15,000iu a day!! The reason the sun helps me so much must not be the vitamin D it gives me. It must be something else. I believe I have Seasonal Affective Disorder, and winter is like a slow mild poison to my mental health. Mix that with stirring up toxins in my body and it's a disaster.

But there's also the other elephant in the room: stress! Stress is constant. Stress prevents recovery and rest. Stress makes me spend energy I don't have, wearing me out further. Stress puts my body into depression. The worse my adrenals, the worse my mental health. I lose the ability to spend energy on thinking. Memory recall, planning, dreaming/brainstorming, problem solving, learning... yep, it all shuts down. The more stressed I am, the less brain power I have. Stress is pure poison to me, and I get so frustrated and angry when people don't respect this fact. When people give me more problems, tasks to accomplish, or worries to worry about it actually makes my brain work less well and diminishes my ability to do what they tell me to do. The anger at others not understanding this problem stresses me further. I shut down. I ignore problems and tasks. It's fight or flight, but flight is the only option because there's no energy to fight. I simply cannot tolerate stress. Yes, I really do need to live in a bubble, and people don't understand this need either. Give me enough time to rest in my bubble and my body will recharge and I'll have energy to spend on working through stress again. But I'm burn out mode. I have NOTHING to give. So naturally, my husband wanting me to look for lodging that will work for me so we can go on a 10 year anniversary trip... sigh, stress.

I appreciate those of you who reached out to me and told me I can talk about my depression with you. It's very kind of you, and I need to know I have that kind of love and support in my life. This might sound backwards to you, but this is the truth: There's nothing to talk about. It's not a depression due to problems. It's a depression due to lack of energy and brain power. So talking would make it worse. It would use up energy I need to rest with. I know that some types of depression are solved with friend therapy and support from others, but mine is the type that requires me to be alone. I'm not entering further into the darkness through isolation. I'm letting myself recharge. Once a phone's battery is down to 10%, trying to use it only drains the battery faster, and the only solution is to stop using it and plug it in. I'm that phone at 10%. Well, I was. I'm probably at 25 % now. I'm no longer in "battery saving mode," but I'm on the verge of it. Let me charge more. :)

I know there's a lot to update you all on in this blog. I need to finish my mattress part 3 post, write about the new organic hemp sleeping bag I bought, talk about my new lab results, and go into a blood pressure and heart rate issue I have. I want to talk about some other product reviews too. I'll probably write about it all eventually, if I'm up to it. I can't take the pressure, so if it happens it happens. I only write in this blog when I need the therapy that comes from writing, so bear with me. :)