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

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?

Permanent Toe Nail Removal Surgery

Ha - I discovered this unfinished post as a draft. I'll publish it unfinished, nearly a year after the event. I should write an update on this situation, as my toe has not healed yet... 

The post:



Ooooookkkkkkkkk..... this is not a pleasant one. Permanent toenail removal. 

I'm NOT going to share photos of the wound. Unlike other bloggers... I didn't want to see their photos.

It would make you squeamish. I want to share my story to be helpful, and I know that gross photos will scare people away. I am going to share a few photos of bandages, shoes, and how my toenail used to be. These shouldn't be too much for anyone. 

PART 1: The Story

I had my left big toenails (yes plural) removed on October 18th. The damage began in 2018. The nail broke off the cuticle, a new nail grew in under it and pushed the original dead nail up. Then that new nail would break off and the cycle would repeat. I had 3 nails on my toe ever since, until this surgery. The nails were curling more and more as the years went on, and the pinching feeling was becoming unbearable at times. I didn't have a choice. It had to be done. 

Why did this happen? Well a Pulmonologist and Neurologist both thought that it was a side effect from taking Metaprolol to manage my tachycardia from POTS. Metaprolol did help lower my tachycardia, but it worsened my already poor circulation. My feet are normally icy and purple, but Metaprolol amplified the problem. I was going numb from cold, and my fatigue intensified too much. I had to stop taking it. These doctors said I probably cut off oxygen to my toes and I'm very lucky I only damaged the big toenail. I have had streaks on my other nails ever since, but I didn't lose them. 

My surgery was a horrible experience. Be warned, this story is something of a nightmare!

It wasn't exactly planned - my appointment got moved up a few weeks early, and I only wanted him to trim the sides down to reduce the pinching. I thought I could hold off on the surgery for another year, at least. Nope, he took a look and said I can't wait. So I had to get mentally prepared VERY quickly. I agreed to it, I knew it was coming eventually and already accepted the fate of my toe, but I didn't know it was going to be right then and there. 

The podiatrist has good bedside manner and has been good with me since I started working with him in 2018. I thought he was a good doctor. The trouble is that he works as quickly as possible, and he leaves the room quickly every time he isn't needed to do something for me immediately. He injected the numbing serum, I waited 10 minutes, then he came in and immediately started to put the tool under my nail. I could feel it! He didn't test my toe before starting the operation. He injected more numbing serum in a few spots closer to the nail until I was numb. Then he asked me to explain what POTS was. I looked away while talking, and in what was probably less than 2 minutes he said he was done. The top two nails came off very easily, almost without effort from him. That could have been a problem for me if I hadn't gone in for the surgery. And then he was gone and I never saw him again. 

His nurse is incredibly kind and friendly, gave me the attention I needed to pull myself together, and I loved her, but... and I don't know how much of this is her or the fault of the hospital being stingy...

She sprayed the wound with cold alcohol, then put gauze directly on the wound then wrapped it tight. Gauze absorbs blood and the blood will stick and dry to it. I'll follow up on this point soon. Then she did not give me a post-op shoe. She stuffed my sock back on my foot, then stuffed my foot into the boot I came in wearing. Which is a tad narrow because my feet at are a tad narrow, but they were no longer a tad narrow after swelling up my toe and putting a thick bandage on me. My big swollen toe was STUFFED into my tight shoe. Was as tight as possible. And I wasn't given a mobility aid. I walked myself to my car. I drove myself, not expecting this surgery. 

I was not prescribed antibiotics or anti-inflammatories, which I later learned is the gold standard of this surgery. No mobility aids. I was given bandages with padding smaller than the size of my nail bed. And told to go home and soak in epsom salt water. She told me to take aspirin or ibuprofen as needed... and let me tell you, I WISH I was given something stronger. I needed a lot over 3 weeks, which is so bad for my liver.

I made it home, pulled my boot off with a very uncomfortable tug, rested, and the numbing serum slowly wore off. I needed extra of it and it wore off within about 1.5 hours. I was told it could take up to the rest of the day to wear off, but no, that's not how my body is.  

Then it was time to change the bandage and soak in a foot bath. The gauze was glued to my wound, and I didn't know how bad it was going to be. She did put a thin amount of antibiotic gel over the cuticle, so it should have prevented the sticking, right? No, because the worst wound was up higher where the dead nail was attached. So I pulled at it a little. OUCH. I definitely swore loudly. So, not knowing what else to do, I sprayed it down with water until it detached. I was bleeding, but I did exactly what my instructions told me to do: put my foot into a foot bath with SALT. Epsom salt. To reduce swelling and clean it. An open wound on the most sensitive area of the body. In epsom salt. I screamed so loudly that I'm sure the entire block could hear me. I shook so hard from the shock of the pain that my husband had to hold me still. OUCH. OUCH. OUCH. No swear words were strong enough for that situation. 

But I continued to follow my instructions, and I put gauze on the wound and bandaged it. Guess what happened when I had to change that bandage? Yep. Screaming and crying.

So... the wound kept getting ripped open, despite my soaking the wrappings to peel them off. The wound couldn't heal. 

That's when I sought advice from friends who are medical professionals and got creative with the supplies I had.

My husband bought me whatever he could find at CVS. I couldn't do the foot baths for the first week, even without adding epsom salt. I tried and it had me in tears every time. So instead I sprayed iodine liberally all over my foot and the wound. I let it soak in, then I sprayed an antibiotic with lidocaine mix. I used witch hazel soaked pads with alcohol in them to clean all around the wound, but I couldn't touch the wound itself. Way too painful. Cleaning the wound with any pressure was going to have me in tears. 

I used extra large bandages and tented it over the nail bed, so that the pad could not touch the wound. That was the only method that was working for me. The trouble was when I accidently moved my toe in such a way that the padding did touch the wound, which was still bleeding after more than a week, and the padding stuck the wound... then rippped at it. There went any healing progress! I tried a different method of bandaging the wound with smaller bandages, and the adhesive touched the wound just enough that I couldn't rip it off.  The only way I could get the bandages off in both situations was to soak my whole foot in a foot bath. It stung like crazy! But eventually, after about 10 minutes each time, the bandages released and popped off into the water. And that's when I realized I was able to tolerate the foot baths well enough to do them to clean my toe out. But not with epsom salt. I used colloidal silver in the water instead. 

So I thought through it. I decided to put antibiotic gel directly only the pad of the bandages, and I painted it with a sterile pad to coat the entire pad. That worked to prevent the pad from sticking to the wound. That is what I should have been doing the whole time, and I never should have attempted a smaller bandage. 

But then... about 2 weeks into this nightmare, I started to get a lot of pus. White, not yellow, but a lot. Everyone told me it was time to see a doctor - a different doctor. I mailed my podiatrist photos of my pus covered toe on a Thursday evening, thinking I would get a response the next day. At 11 am the next day the message showed it was read, but I never got a reply (at all - not even by today.).

So by Friday afternoon I decided to go to the walk-in clinic, and it was a very good thing I did! The doctor was an ER doctor and the nurse had podiatry experience. Both excellent! I told them how I was I treated - I mean, not treated. They couldn't say much, but they did tell me how to take care of myself correctly. The nurse swabbed my toe bed to do a culture - OUCH OUCH OUCH. Holy @#$%^. And then the doctor put me on antibiotics. She attempted to put me on an anti-inflammatory, but I was allergic to all of them. She wrote me a note to prevent me from going to work and told me to get off my feet no matter what! The nurse taught me how to bandage properly, and even gave me scissors to cut bandages exactly right. Then she told me where to go to buy a proper pair of shoes to recover in (I'll get into the shoe issue in the next part of my blog.)

That was exactly 1 week ago. I took my antibiotics, got my proper shoes, bandaged correctly, got off my feet as much as possible, let it breathe more, was able to clean it in foot baths, and elevated it more often. In the last 48 hours I have FINALLY started to heal. I was at a 8-10/10 level of pain managed only with ibprofen for 2.5 weeks. In the last 48 hours the pain level went down gradually, and I haven't taken pain killers in this time. I now am at a 2-3/10 level of pain when resting, and it goes up to a 5/10 when touched or walking too much. The tenderness on the nail bed is 50% reduced. 


PART II: Complications and Solutions

Shoes:
MAKE SURE YOU GET A POST-OP SHOE BEFORE THIS SURGERY. Don't rely on your doctor to give you mobility aids. And trust me, you will need it. Think through this: you have to put all your body weight on your foot to walk, which increases pressure on the wound, which is on the most sensitive part of your body. Consider using a cane too. You're not being a baby. Keep weight off that toe if you want to heal!

I couldn't find a post-op shoe in town. I spent a week looking and asking around, and it meant I was hobbling around on the side of my foot without a shoe, which lead to ankle pain. All I could find were expensive boots for ankle recovery. I tried all the shoes I own. The ONLY shoe that I could make work was a Teva sandal, and it wasn't comfortable at all, but it was all I had. I went to work wearing that sandal and it was borderline not acceptable for all the walking I had to do. 

The nurse at the walk-in clinic sent me to The Uniform Center on 3rd street in Bismarck. Their new shoe store, Happy Soles, was phenomenal. The lady who helped me has been through the surgery too, and her daughter has POTS. She understood!! She was able to fit me in an open-toed slipper that's been saving me. It has a thick sole that isn't flexible, so it's keeping me stable, and I don't feel the ground. It has Velcro straps on top so that I don't have to slide in and out. I strap it on. It was a game changer for my recovery!!! The velcro is very impotent: I couldn't slide into slippers because of the size of the bandage and the pressure. I needed straps that come fully open so I could simply step onto the sole and then strap in. 

POTS: 
Okay - this really really really complicated issues. I wasn't prepared for the biggest issue at all: blood pooling in my feet. 

Blood Pooling!

Do you all want to see a picture of my feet during a flare?

You're welcome.

Okay okay, I'll explain a few things.

First of all, my toe nail? I've been working on growing a new healthy one since November of 2018. First it turned black, then it slowly started to peel away, then a new nail started to grow and push the old one up. I'm letting it run its course. The old nail will fall off when the new nail has finished growing it. I have no clue what caused it - doctors have shrugged it off after a round of antibiotics didn't work. I think it's getting really close to coming off! Just in time for summer, I hope!

Yes, my toes are very purple. Yes, they feel cold as ice with deep pain in the bones. This is not unusual for me. One of the visible signs of my invisible illnesses.

Yes, my feet are pink. Blood pooling! Very common symptom of POTS. Blood pools in my feet because my nerves don't appropriately tell my leg muscles to constrict in order to keep blood circulating like it's supposed to. So instead of circulation, I collect blood in my feet. It's kind of fun to draw on my feet when they're like this because I can draw white streaks all over them.

Wearing compression socks helps a lot when I'm moving on my feet. I really like the Sockwell brand because they're made with mostly wool, and I seem to do okay with the nylon content in them because they're breathable enough.

I don't like wearing compression socks when I'm resting. They make my feet much colder.

But I do need socks on, like... all the time. My feet are always icy. I love hot foot baths or full baths. I love sunbathing my feet.

When I tried Metaprolol (beta blocker) for my POTS, it made my feet like this 24/7, but colder and more purple. It did reduce my heart rate, which felt good and reduced my heart soreness, but it also increased my fatigue and made my feet intolerable. I'm so happy that works well for many people with POTS, but it wasn't for me.



This image has been floating around on Facebook (I got it off of the Millions Missing page) and I really like it. It's missing the blood pooling text, but shows it in the legs. It's also missing chronic fatigue as a major symptom. I get all of these symptoms, except that I don't vomit or faint (well, fainting has been super rare.) I don't get the facial flushing anymore, but I did get it frequently before I started to work with my doctor. I still get rashes, but not as often anymore. 

The Mushy Mush

I'm pure mush. Scattered unfocused thoughts, body feels and moves like jelly, highly creative dream like state with zero energy or care to apply it to anything, and a stagnated digestive system that doesn't know what it wants. I keep trying to find something to do with myself today, but after about 30 seconds of anything I turn into sludge and feel sleepy. This is PMS - it's more than just mood issues, pain, nerve issues, cravings, and acne.

I don't really like watching much TV alone because it's not interactive enough for me and I get restless, even when I'm overcome with fatigue. I like certain shows or movies when I'm watching with my husband or friends, but it's never a first choice when I'm alone. But watching Carmen Sandiego (new Netflix series) has been the only thing I've been able to enjoy today.

I don't really feel like talking to people, playing my game, sleeping, cleaning, cuddling with my pet birds, reading, working on my Spanish skills with Duolingo, sewing, drawing, listening to music... I'm just existing and being useless.

If I was forced to overcome this and go to work at a job how would I do? Well, it would require caffeine, licorice root, more adrenal complex, eating properly, and a whole lot of motivation. There's no way I'd perform well and I'd just prevent recovery by pushing myself. I'm overspent from pushing myself too hard yesterday to perform well at work. There is a point where my body will simply refuse to function well despite what I take to help it. I'd end up spacing out, forgetting things, stuttering and slurring my speech, dropping things, and finding myself unable to find mental energy problem solve.

Mush. Just pure mushy mush with stabbing pain thrown in here and here, even though occasional nerve ache in my leg.

Flu then Pnumonia then "Recovery"

First my husband came home with the flu and he was absolutley miserable. Then he had a week where he felt well enough, and I developed the flu. Then I started to feel slightly recovered and he developed Pneumonia. I had a week where I felt slightly ok, but had an extra painful endometresosis couple of days. Then a week later I got Pneumonia. X-rays and doctor confirmed Pnumonea. It looked like I had spider webs in my lungs. I was so incredibly sick, unable to lay down to sleep, that I willingly took the antibiotics. It turns out I'm allergic to amoxicillin, so then I had a few days of rashes and hives that left me in tears. I had to take antihistamines and lay in a baking soda bath for hours to feel even slightly comfortable again.

About 2 months of this is way more than I can handle. I'm still coughing up big wads of green from my lungs, and my ears often won't pop. Add to it severe negative windchills (as in we got below -40f several times), followed by a massive snow storm of 10 inches, and now tonight we're due for the next massive snow storm. We're in blizzard warnings right now.

I'm stuck inside of a house that I don't have the strength to clean, and I can't open the windows to air it out.

If I've been very grumpy, distant, selfish, unresponsive, or unsupportive... well I'm not sorry! I have not been well - no, I have not been ok!

My body is weak to begin with, so when put through the flu and Pneumonia back-to-back, you should not expect me to simply recover and get back to my life. My POTS has been strong, my fatigue intense, my sleep is a major chore... but more than anything, talking to people is the worst. I can't break out of my own head, and it's not even a choice - I simply can't listen. I'm trapped in a prison in my own head and everything you say bounces off those prison walls. I can't handle myself, so I cannot take you on.

I've pushed away my friends both online and in person. It got to the point where I almost felt like I resented them, almost hated them. I didn't want to talk, and I didn't want to listen. I hate that I ever felt that way, because I love my friends. But even now I still don't enjoy talking to them because I don't have the energy to engage. I don't even like TV shows because I don't want to listen to the character's problems. I can't take anything else on. I just need to recover myself.

I might need another few days. I might need a few more months. 

Getting sick on top of a chronic illness is very challenging. Pneumonia is no joke. People often get hospitalized from it. People die from it. I wish I was hospitalized. I really wish I had a machine attached to me to help me breathe, a port for regular IVs to keep me stable, a vacuum to go into my lungs and suck it out... at the very least, having trained medical professionals there to help at a moment's notice. That would seriously have been very helpful. But no. I suffered through it from bed without much help since my husband was so busy. I very inefficiently coughed way too much, slept way too little, sweated too much (I was up to 103f fever and the fever lasted just over a week), and ate poorly. Why? Because I was afraid of the cost of seeing a doctor, I didn't want to go on their drugs, I didn't have the energy to explain all my medical issues to them (that they still won't understand because they've never been trained on my issues), and I honestly felt like I didn't care of I died.

And now the most help I've had for my recovery has been acupuncture, but due to the weather I've only been able to go once. Acupuncture helped get more out of my lungs than anything else has, and gave me the strength I needed to rest properly. I'm going back for another appointment in a few hours - hopefully before the blizzard begins!

All I'm trying to say in this blog is that it's critically necessary to be patient with people who are sick on top of having chronic illnesses.

Thank you. 

Ableism

This post is not directed at anyone personally, it's actually inspired by a different blog I just read. I wanted to share my point of view on the topic. Some might think it's directed at them given how much I've struggled this week, but I promise it's not directed at anyone.

I want to talk about this other "-ism." The one that the media, "tolerant" people, and society in general doesn't talk about very often.

"Ableism"

Ableism is a concept like sexism, but in the case of ableism, it's an idea that disabled people can do what able bodied people can do. It seems obvious: a disabled person is not able to do everything a healthy able bodied person is able to do. It's obvious when you see someone with a broken leg. You would automatically understand that that person cannot run a 10k, because running requires both legs to be working properly. It is not obvious, however, in the case of people disabled by invisible illnesses. Do you assume that a person is fully able bodied just because you don't see obvious signs of disability, such a broken bones?

Ableism is a perspective rooted in misunderstanding, a lack of empathy, and often times just simply naivety. I'm not using the word ignorance here, because being ignorant implies that a person chooses to ignore the facts and wisdom about something. Ableism typically is not rooted in ignorance, because it's typically rooted in people who have never been presented with facts and wisdom to be able to ignore it. Ableism is due to a lack of advocacy and communication.

I normally get annoyed by the "-ism" talk, as I find that it's often over simplified as a means to be negative about someone or something. In the case of "ableism," however, I'm annoyed by the lack of talk about it at all! So I want to discuss my point of view on it.

I am disabled, but it's not obvious. My illnesses are not always invisible, but I don't let you see me when they are visible. When you do see me, it's because I have enough control over my body to act like a normal healthy person. This probably creates an assumption that I am actually healthy enough to do what any other healthy person can do.

You may assume that just because I occasionally drive a car that I can always drive a car. On the contrary, I often choose not to drive my car and will cancel my plans to avoid driving. If I drive when I'm not feeling capable it could be life threatening to myself and others. When I'm fatigued and weak my reaction time is very slow, both physically and mentally. When I'm fighting dizziness or vertigo it would be like drunk driving. When I'm in a pain flare I would be too distracted to focus on the road. The reality is that I don't drive very often, and when I do, I've prepped myself with my supplements, the right meal, and enough sleep first.

You may assume that just because you see me on my feet running around at work or the grocery store that I'm always able to be on my feet running around whenever I want to. Just like with my ability to drive, I have to prepare myself for these occasions with the right supplements and food first. I only work part time because I'm not capable of keeping my body in a state where I can be on my feet running around more than part time. I have to make choices, such as if I go to that outdoor autumn festival today, will I have the ability to work my shift tomorrow?

You may assume that just because I occasionally lift weights for exercise that I could do a graded exercise program to get better at lifting weights over time. Except every time I try to improve at some form of physical fitness my chronic fatigue gets worse. I only do what I feel I'm able to as I'm able to. I try to do enough exercise to burn off the high protein diet I eat, but not so much that it drains my strength for more important things, like going to work. Most importantly, just because one day I do 2 sets of 10 reps on my weight machine one day, does not mean I'll be able to carry that 25 pound box from FedEx up my stairs the next day. My strength ebbs and flows, it's not constant or predictable. My ability or inability to exercise in any given moment also determines how well I function in general.

You may assume that just because you see me in public talking to people like it's no problem, does not mean I'm able to talk on the phone at home any time. I can't tell you how many people have suggested I also work from home at an "easy" job like taking McDonald's orders over the phone. Do you realize how much energy talking takes? Especially in a fast paced job? It's difficult for me to keep up mentally, I start to stutter, sometimes my voice goes out on me, my voice gets rough and growls, I say the wrong words without realizing it, I can't say the words I'm reading because my brain won't translate what my eyes sees to my mouth... talking is like a sport to me! It's exhausting! Again, talking is a skill I reserve for times when I need to.

You may assume that because I'm a human being and I need to eat food to survive, that I should be able to order take out so that I can eat when I'm feeling too weak to cook for myself. Sorry, nope. I have yet to find a single restaurant in all of the city I live in that serves a dish I can safely eat for a price that I can afford. I'm not going to pay $40 for a 6 oz grass fed steak from a place that normally butters their steaks. I seem to be allergic to dairy, and I've learned that telling a server about my allergies doesn't mean my meal will be allergen free. Chefs make mistakes very often, or they simply don't know that an ingredient they always use would contain the food I'm allergic to. I MUST reserve enough energy to prepare my own food - this is a necessity for me. There's no other option. I can't live on convenience anymore, sadly, even though I need convenience more now than ever due to my fatigue.

You may assume that I can stand up as needed, such as during church or during the Pledge of Allegiance. I have a condition called POTS. I think it's fairly mild compared to many other people I've talked to with POTS, but 2 doctors have told me I have it. It means that when I go from sitting to standing that I experience pre-syncope - the feeling that I'm going to faint. My vision gets weak, sometimes black, I get very dizzy, I see random colors spinning around me, I can forget to breathe, my stomach and bladder sink, and I feel like I need to collapse. I'm not prone to fainting, so I often will stand up and deal with feeling all of these symptoms until my body finally adjusts and I stabilize. But what if that time is the one time I do faint and I hit my head on something on the way down? You can't see everything I feel when I stand up, but I experience it almost every time. I do my best when I slowly stand up, then stay on my feet and moving. I can't stay standing in one spot long, I must keep my circulation up.

You may assume that I can manage my periods just like any other woman has to manage them. Except that not many women have endometriosis, POTS, chronic pain, and chronic fatigue like me. There is no cure for endometriosis. There's hardly even ways to manage it. There's no cure for POTS, and no official FDA approved drug to treat it. When you put endometriosis and POTS together, you get this disastrous combination of extreme pain with extreme weakness. PMS can mean exhaustion to the point of being out of breath just trying to get to the bathroom. The period itself can mean I'm so dizzy that everything spins around me while I'm laying in bed with my eyes closed.  Not to mention all the other symptoms. For about 12 years now I've been completely incapable of doing anything other than laying in bed and sitting on the toilet for the first day of my period. Surgery didn't help. At all. Healthy women with a normal period and some "normal" cramping can take a pain killer (if they even need it) and go on with their day like they're just a little extra tired. That sounds like a miracle to me. For years I took 12 ibuprofen on the first day of my period to manage the pain. It wasn't enough, but nothing else I tried worked better.

You may assume that just because my hair is clean that it wasn't a struggle to wash it. 50% of the time I shower I'm sitting on the floor of the shower while I wash. It's because it's exhausting to hold my arms up and stand up at the same time. My heart rate skyrockets and I get out of breath. I always wait to shower until times when I'm feeling strong enough. When I have to shower, but I'm not feeling strong enough, I'll often choose to not wash my hair and go out with dirty hair.


I could go on with many many more examples of how I'm not able-bodied. My disability judge and a few doctors agree. (Yes, I won my disability case after 3.5 years - but more on that some other time.) I'm disabled in many ways. But I look healthy. I do my make up, put decent clothes on, wash my hair, don't wear any casts or medical devices, I avoid engaging with people when I'm struggling cognitively... odds are, I won't give you much reason to assume I'm disabled when you actually do see me in public.

What do I need from you? Why do you need to understand all of this?

I need you to believe me. If I say no, I'm not capable. If I say no, I'm not up to it. If I ask you for help, please help. Don't argue. Just believe me. Don't shame me. Just trust me. 

I'm a highly independent person who likes to do as much as I can for myself. I've always thought that I need to do things myself to make sure they're done how I want them done. When put a knife through my thumb and couldn't use it for a few weeks, I taught myself how to put my bra on without that thumb. When I couldn't use my right hand due to major wrist problems and was in a brace, I bought a mouse I could use with my left hand and taught myself to write with my left hand. I get creative so I can stay independent. I avoid asking for help. So getting to be this sick has been a challenge for me, because I've had to swallow my pride and learn to ask for help. I've had to accept that I can't perform to my personal standards. It's very humiliating to me. So when I ask for help or say no, and you reply with a lecture or a snarky comment, you just add to humiliation I already personally feel about myself. If you need to say no to me, just say no. Don't attack me in the process.

Ableism. The idea that you assume someone is able to do what you are able to do.

Thanks for listening. :) 

Metaprolol Experience

In this post I explained that I was diagnosed with POTS and put on a beta blocker to manage it. I'll go into some detail on this post about what it did for me and to me.

I was prescribed Metoprolol Extended Release 25 mg. I was not allergic to any ingredients in this option, but the regular non-extended release version contained lactose. I don't know how a small amount of lactose in the pill would affect me, but I do not do well with dairy at all. The advantage of the extended release version is that I only take one pill a day, but the disadvantage is being unable to cut the pill in half if the dose is too high. I think I would have been better off with the regular version, taking a couple a day, because I think I would have responded better if I had been able to cut the pills in half and work my dosage up. In the end, however, my doctor and I decided it's not the right drug for me.

Beta Blockers lower your heart rate, so it made perfect sense to try it. What I didn't know at first was that it also lowers blood pressure. If you have low blood pressure then I'm warning you against Metoprolol.


I decided to take it at night since it makes me sleepy. The first night I took it I had vivid terrible nightmares. When I woke up I felt all the symptoms of low blood pressure: eye pressure, headache, weak, freezing cold, and out of breath. I took my blood pressure. I can't remember specifics, but I remember it was in the upper 80's over lower 50's. My heart rate wasn't any lower. Through the day my blood pressure ran low, but slowly improved until it was back to my average 100/60 in the evening.


The second night I didn't have the nightmares, but it started to make me feel slightly more depressed and darker than usual. I did wake up, again, with low blood pressure, and once again my heart rate wasn't any better. My toes were dark purple and icy most of the day. I was starting to feel even worse going from sitting or laying to standing. Normally I feel POTS symptoms about 50% of the time when I get up, but it was turning into 100% of the time with increased symptoms (mainly extra dizziness with bright light colors spinning around me longer than normal.)

By the 4th day my blood pressure wasn't quite as bad, but still around 92/55 most of the day (that was one measurement I have recorded.) My heart rate, however, was down to the 50's at rest. My average resting heart rate is 88, so that's a big drop for me. Upon standing it was going up to the 80's to 110 range. So even though my resting heart rate was lower, it didn't fix the POTS. By the 5th and 6th days the deep purple and ice cold in my toes had overtaken my feet and shins. By the 6th day my resting heart rate was back up into the 70's and 80's most of the time with a few periods of it being in the 50's. It wasn't consistent. That isn't so bad, but I was going into the 120's and 130's when standing up. The other issue is that my fibromyalgia was coming back in a big way. My leg muscles and shoulders were getting achy, tender, and felt like acid. I lost my ability to control the muscle pain.

I took it for 8 days total, and I never improved more than that. I asked my cardiologist his thoughts on this and he said it wasn't doing what it needed to, and the side effects were not worth it. So he told me to stop. He said I might be better off being untreated based on how I reacted to it. There are other options I could try, like Calcium Channel Blockers, but he didn't suggest it. He said because my heart itself isn't in danger and it's working well, I should be okay without treatment. I'm also not a fainter. If I were a fainter it might be important to try something else. But for me POTS is a cause of fatigue, pain, discomfort, and exercise intolerance. It's annoying and draining, but not damaging... we think. I'm not sure I'm ready to try the next thing anyway... exhausted from all the changes to my body!

Metoprolol was a teaching experience. Without it I feel fatigued all the time from being too revved up all the time. On it, I felt the same level of fatigue from not being able to rev up at all. It felt different. It might have been better for my body to be more calm on it, but it made it just as hard for me to function. I think I had less adrenaline to help me function while on it too.

So I'm going to do what I have been doing that seems to help: extra salt, electrolytes added in all water and tea I drink, licorice root as needed for low blood pressure, green tea as needed to cut down on fatigue (other sources of caffeine make me worse, but green tea does help), and going for walks as often as I can tolerate. I may want to try other prescriptions in the future, but I have a feeling I don't tolerate any prescriptions well due to my chemical sensitivities. I haven't had lucky on any so far for any condition...


Best part of getting off Metoprolol? My feet can feel the sun again and it feels good! They were so ice cold not even the sun would warm them up! They still turn purple from blood pooling, which is helped by elevating my feet, but not the dark purple and numbness that Metoprolol caused. 

Sugar = Depression

People don't want to talk about depression and suicide. I don't blame them. I always feel so powerless when my friends bring it up to me. I know trying to cheer them up will just push them away. I know that when I'm feeling depressed I'm too zoned out to even talk about it. It's such a tough issue.

I'm currently wearing a heart monitor, a Zio XT Patch. I have a lot to write about to explain what's going on it, but I don't have the energy right now. To make my point, I do need to explain that I'm relaxing a little (not a lot) on my strict diet because we want the heart monitor to record what I'm like without all the medical aids, including my diet.

This has meant I've let myself eat sugar. I bought the SO Delicious chocolate covered coconut milk ice cream bars because the only thing in them that's not allowed on my diet is sugar. They were a safe sugary option for me. They're super good! So I ate too many over the last week. Each time I eat one, I'm noticing what happens a few hours later: I get very depressed. Not sad. Just mentally everything goes black and the only emotion that comes through is a mild current of anger. The "everything is stupid" type of anger, like I'm a teenager again. It comes along with a headache. It's awful. I lose sight of myself in this blackness. Then eventually it turns into hunger and total weakness - probably low blood sugar. I'm saying this now because the feeling is starting again... because I ate the ice cream a few hours ago. It's hitting me.

I still get depressed without the sugar, but it's really blowing my mind that sugar has this profound of an effect on me. It has a direct correlation with serious depression episodes. I'm not entirely sure what to do to get out of it - the past several days this week with the sugar depression I just had to go to sleep and sleep it off. Of course sleep doesn't come easily. I'm not supposed to take any sleep aids either, but I've had to take some magnesium to calm the anxiety in my body from the sugar so it was possible to sleep. I'm afraid of how I'd be with both sugar and a lack of sleep.

I also ate a muffin made from flax and oats, no other grains. The oats alone were enough to know what happens to me when I eat grains: fibromyalgia flare. It hurt. My skin, especially  my legs, got really tender to the touch. Waves of achiness went through my muscles. And I hate to say it, but it's true... taking the Eucharist has Mass has done the same thing to a much lesser degree. Grains are truly my enemy.

But why did I also mention suicide? Because I just binged on an anime on Crunchyroll called "Orange." If you're feeling depressed, go watch it. It's powerful. It's about a girl who sends a letter to her past self to coach her through her social anxiety issues in order to get her to save the life of a friend who will end up committing suicide. She has to overcome her own social fears to be strong for him, and he has to want her help - all the while he hides his deep depression from her. I won't spoil anything. It was really hard to watch, but also really inspiring and beautiful. It had a lot to say about the value of good communication skills.

Back to my heart monitor...
It hurts. All my doctor's supplements for me really have done a lot of good for me. I've been off of them for a month now, maybe longer? I'm not clear on the time frame at the moment. I've gained 10-15 pounds (the scale is different each day), I'm weak and totally drained, adrenaline takes over when I need to work and the adrenaline feels gross and dominating, I can't sleep well, my hair stopped growing much, bruises are taking weeks to heal, I'm dizzy really often, vertigo almost daily, my gut is screaming at me often, my heart is palpating and fluttering too often, I'm often panting for air, I'm dehydrated and can't seem to drink enough water... I'm going downhill fast. I'm so looking forward to going back on my supplements. They're a hassle to take. They're expensive. But they're all I've got that's working. I function so much better on them. Not perfectly well, not even close, but so much better.

I'll write about everything else later.

Vent About My Pain and Breathing Troubles

If I had the energy, I think I'd be screaming right now.

I had a very hard time falling asleep last night because of throbbing aching upper back and shoulder pain. This morning I have the same pain continuing on along with a tight aching chest. My heart feels so tired and sore. I feel like I can't breathe well enough because my lungs are too tired. I have to consciously breathe deeply enough because the automatic breathing system isn't doing a good enough job. And then that same spot in my gut is now constantly in pain instead of just in certain positions.

I've been sitting here for an hour, mostly still, and my pulse is 104 with blood pressure of 106/58. Systolic is higher than my normal for being at rest, and I'm always symptomatic when my diastolic is below 60.

I'm itchy and fidgety, as if I had a bunch of sugar, but I didn't. My skin is tender in certain areas, like I have the flu, but I don't.

I really want to be back on my supplements. This is so uncomfortable. 2 more weeks until testing. Can I handle 2 weeks of this? Can I handle the planes to travel to the doctors in this condition?

Whenever I try to gently stretch my back and shoulder muscles to release the throbbing tension the pain shoots to my brain and makes me feel so weak that I might pass out. When I try to massage it I feel like I'm going to break my fingers. I bruised my neck from massaging it last night, now I can't work on that spot.

I kind of wish I had a machine to breathe for me right now. Remembering to breathe is exhausting. Why won't my body just do it well without me thinking about it?

I'm wishing my last acupuncturist was here to do dry needling on these muscles. It was the only therapy I've ever had done to fully release the tension. If it were simple enough to just go to Arizona to see him I would. I don't know of anyone else in my area that does it. My new acupuncturist is excellent - she's incredible, but she doesn't do dry needling. She does cupping, which does help a lot, but does not fully release the tension. The cupping tends to open up my lungs though. It makes me cough for a bit before I can take a full satisfying deep breathe, which is an amazing feeling.

That's making me think my breathing troubles right now are probably directly tied to my extreme shoulder tension. If I can find a way to loosen the tension without taking my pills, will I be able to breathe normally again?

I can't think of ANYTHING but my pain this morning. I want to rest and relax, but I can't. All I can do is sit here and manage my breathing.

If I needed a doctor in town right now, who would I even go see? My acupuncturist would probably help the most, but she's very difficult to get into. I'm not allowed to see my chiropractor again until after the testing. He would probably help though. Every time I try to stretch I can feel several bones pulling and popping with the motion.

My heart is just so dang sore. It feels like it might give out from exhaustion.

I need some sort of stand that can hold my phone directly above my head while I'm laying down so I could watch a show on it without using my arms. If I just lay there on my acupressure mat my mind wanders to bad places that prevents me from relaxing. I need the distraction.

Oh great, now I'm bleeding where I've been massaging. Uggghhhh.

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.  

Menstrual Details and Vent

It's days like today, when I'm stuck in bed, that make me wonder why it's impossible to win disability. The stress caused by trying to keep my job and stay in good graces with coworkers at my job when combating multiple chronic illnesses is just too much.

I've been proud of myself for how little I've called in sick in the past 2 years at my job. Through fibromyalgia flares, POTS flares, period pain, mental health episodes, fatigue both mild and heavy, and more I've worn my best face at work. I always strived to do a good job regardless of how I'm feeling. I'm so proud of myself for doing as well as I have at this job considering all my problems. I only reserve calling in sick for when it's impossible to drive. If I'm not safe to drive, work is out of the question.

The main reason I call in sick? The first day of my period. My boss was understanding of this situation when she hired me, which gave me so much relief. I was very concerned with finding a job that would work with my debilitating periods. I'm only part time a few days a week, so it's not every month that I need to call in sick for it. Yes, I've been quite happy with how little I've had to call in sick considering I'm chronically ill and didn't work for a year and a half due to illness.

I had to call in sick today. Not because I was planning to or want to, as my brain was very much in gear for what I was going to accomplish at work today. But because my period is 3 days early.

I feel that I need to publicly explain what the first day of my period is like, because I'm constantly met with so little understanding.

It starts with a terrible week of PMS. Cramping, strong mood issues, depersonalization (feel like reality is a dream and I'm not actually present in it), extreme bloating, very painful heavy breasts that don't fit in my bras during that week, and big fluctuations in blood sugar and blood pressure... The PMS is bad enough on its own.

Then the first day comes, sometimes over night, sometimes in the middle of the day. Lately it's been a slow build up to the explosion of problems, but I used to wake up to the extremes without warning. Lately it starts with vertigo that slowly increases, and that's my warning to check my Diva Cup to see if I've started bleeding. It doesn't take long for the diarrhea to kick in. All that bloating from the week of PMS? It saves up for the first day, no matter how good my bowel movements are that week. Vertigo + diarrhea + morning hunger = very unstable. Low blood sugar, low blood pressure, terrible circulation, freezing cold shivering... I sometimes end up crawling to the toilet.

Then, after the preliminary problems, comes the pain. Now I've had some periods this year with very little pain. Acupuncture, colonics, and my herbs do make a huge difference. But I never know if I'll have a bad first day or a not so bad first day (only in terms of pain.) When I have pain, the pain can be so horrendous that I'm screaming and crying. Moving any muscle, even a toe, can send waves of pure pain through my whole body. When I can't stop shaking/ shivering from the adrenaline rush the pain gives me the pain only amplifies. I've been in this situation enough times that I'm sure I have legit PTSD from my periods. It's traumatic. Think I'm exaggerating?  Well I can't prove it to you, but just ask my husband or mom. I am always on high alert with my periods always prepared to go to the ER if necessary... Except that when I'm in that much pain I can't move, and going to the ER requires moving.

For several years I relied in ibuprofen to manage the pain. The first time I was clued into how abnormal my periods really were was when a therapist I was the secretary for couldn't belive I had already taken 12 ibprofen that day and I was still in obvious pain. She told me she's never needed more than 2 or 3 to totally manage the pain. A doctor gave me opiods for it. They didn't quite work, just made my vertigo way more intense. This is why I think I have liver problems. My naturopath now has me on a tincture for pain that actually works exceptionally well, but leaves me feeling loopy and very fatigued. It doesn't help me go to work, but it lets me rest in bed without extreme pain. 

The next problem is that I can't rest in bed not moving for long. The amount of blood I bleed is crazy. The average woman looses 2 ounces of blood per period. A Diva Cup holds 1 ounce. For the first few years of using my Diva Cup I was emptying it every couple of hours when it was over flowing. On average I lost around 12-15 ounces per period, 3/4ths of it on the first day. In the blood would often be clots. Some clots were the size of a quarter, some the size of a golf ball. With all the medical help I've been getting in the last few years I've reduced down to losing about 6-9 oz per period. The clotting is more rare now, and generally smaller.

Have you ever sat on the toilet with extreme heaviness, constant diarrhea that gives exreme waves of pain through the whole body, hardly able to breathe from a heart rate so high that it feels like your heart will puncture a hole in your ribs? I've sat on the toilet thinking that was how I was going to die. I'm not prone to fainting, but I've sat there seeing spinning colors and dark tunnels in my vision.

Women, do you know what it's like to bleed this heavy? I've heard from some women that their periods are light enough at times that they don't need to wear any hygiene products. I've never experienced anything that light before. I don't know what it's like to have a "normal" period that doesn't really disrupt life much.

My gyno was convinced I have endometriosis: extreme pain, extreme bleeding, large clots in my blood, and what she saw during a pap smear. She wanted to do surgery: a laproscopy. The problem was it's $2,000 and insurance doesn't cover it. So I never ended up having it done to confirm the endometreosis, but other doctors I saw also said they were highly suspicious of endometresis. The biggest problem is that what if there's more than endo? What if I have cysts or fibroids? Without that surgery we won't know. But the fact that I'm slowly improving every year under my naturopath is giving me hope.

When I call in sick because of my period, this is what I'm actually calling in sick for. My period is pure hell. It's not just a few extra bathroom trips or a little extra pain. I so wish and pray my periods were that easy and manageable.

And so I lay here. The dizziness isn't bad as long as I'm still, but the cramping is starting. I'm wondering how to get up and make it to the bathroom. I'm wondering if I'll make it to the kitchen for food and my tincture. I have an awesome husband who takes care of me, but when he can't be home I need to manage on my own.

Don't ever assume I'm faking or using my period as an excuse. I have to plan my entire life around my period. I have to go on trips to my doctor based on when I'm going to start my period. I have to miss important events or family matters over my period. I can't plan big events more than a few months out because I have to make plans around when I'll be on my period. We can't make vacation plans when my husband has very rare time off if I'm on my period then. My whole life revolves around my period, and yes, it's a big deal. My period is the other thing I share my life with. It's my physically and mentally abusive soul mate. It's my jail cell. Don't ever assume I use it as an excuse, because I would much rather live my life without it being in control. When I say no because of my period it's sincere and honest.

Between this, mold toxicity and environmental allergies, and chemical sensitivities can you understand why I'm such a control freak that developed adrenal issues bad enough to cause POTS?

I need a psychologist. I know it. But I can't afford all the help I need. I'm just trying to live somewhat normally by working part time.

So please, work with me. Have mercy on me. I'm in a constant battle with my body. The stress of living after my body problems is too much for me.

Tachycardia is so Pleasant (sarcasm)

Oh how I so enjoy the tachycardia. :P

I love shivering when I'm not cold, struggling to remember to breathe, feeling my heart rate skyrocket and punch my throat in slight stress, feeling my heart rate skyrocket from just laying down, having purple mottled legs, heart burn from a digestive tract that freezes up on me when blood isn't moving well, bloating that never ends, falling over because I'm too weak to keep standing, seeing spinning colors when I stand up, saving up all my energy and strength for only the hours I go to work and ending up collapsing at home...

Yeah, I've been suspicious of POTS for years. I didn't bring up my suspicion to my doctor, but he tested my heart rate and blood pressure long enough and careful enough to find POTS symptoms.

Right now I've been laying on my back for 2 hours, talking on the phone for some of that time (talking always winds me up because it takes energy - I don't like to sit and talk anymore, too draining), and I counted my resting heart rate a few times. 92, 96, 105. Laying down!

I think I've had symptoms for years, but in the last 6 months or so symptoms have been most obvious and exagerrated. I was complaining to my doctor about how sore and achey my heart was. It hurt a lot! I wasn't used to that kind of heart pain.

I was born with a heart murmur: pulmenory stenosis. It never went away. I still have it. Cardiologists have needed me to get echocardiograms every couple of years my whole life. Every one I've seen has always been startled and confused by how loud my heart is and the gurgling noises it apparent makes. My heart has always been in good health according to the tests, but the fact that the murmur never went away and it makes weird noises worries cardiologists. After reading up on POTS I found that it's fairly common for POTS patients to have a murmur too. I have not decided what this means yet, but it's interesting.

I'm writing this on my phone out of anxiety and chest pain. Really not feeling well. I'll consider going into more depth on the subject later. 

Source of Mold - My Reaction

I'm sorry that I haven't posted in a while. I have two draft posts that I'm struggling to finish. I'm not well. I'm actually really struggling a lot. In a way I think I'm too overwhelmed to really write about health issues. What's going on? Mold.

We're having the siding on our house replaced. It had some visible damage and probable water damage, so it was time. The damage was so much worse than we anticipated! Let me just show you in pictures:


(Blogger issue: this image is saved in the correct orientation, but always uploads upside down, and I can't rotate the image on Blogger... sigh.)














I promise you: these problems were not obvious before the siding was removed!

There were a couple of problems: no Tyvek under the siding, and some of the flashing was installed incorrectly, letting water pour behind it and along the plywood on the house. The deck area is another issue - it was installed poorly. It wasn't even anchored to the house, it was only nailed to the house. There was no flashing installed on the deck, so water sat between the siding and the deck and rotted away the siding, leaving black mold and white mold. The back door that goes out onto the deck sticks out from the house, and the bottom of the door area that sticks out just had foil. FOIL. Water was sitting on the foil, soaking into the plywood, and mold was everywhere. Thankfully, the crew we hired is drying out soaked areas, replacing as much Buffalo Board as needed, taking off the rot from the frame of the house, and killing the mold. They're doing a good job!

When my parents bought this house about 10 years ago they did have inspections done. None of this was caught.

We're having the siding company install Tyvek under the new siding. This is one use of plastic I can support! If the house had Tyvek installed in the first place (and installed the flashing correctly) we might not have any of this mold damage.

Yes, these couple of weeks have been ROUGH. Oh the inflammation, aches, brain fog, severe fatigue, painful stomach cramps and bloating, skin rashes, and eye pain! The eye pain!!! The scary part is that I've basically lost my sense of smell. I can hardly even detect smells that should alert me to toxicity in the air, which I'm using hyper alert to.

Why am I living in this house while all this mold is getting kicked up? First and foremost, I didn't think it would get into the house since it's all on the outside of the house. That ended up being not true. They found evidence that mold was getting into the house through electrical outlets. The vapor barrier on the backside of the drywall was not sealed around the electrical outlets around the entire house, so any mold sitting in the frame of the house or the insulation got behind the vapor barrier a bit around the outlet boxes, and then into the house. Scary. So all that mold is being kicked up as they've been sealing up the vapor barrier around the outlets. The other reason is that I don't have anywhere else to go that's safe for me. I'd be no better off staying with other people I know, as the use scented things, Lysol, chlorine, etc.

I'll write a lot more later, because there's much to be said, but I'm hurting too much. My fingers are even throbbing a bit in the joints.

Oh, and in case you live in my area and need house repairs done, we're using Fettig Millwork and Windows. He and his crew are doing a fantastic job!