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

Endometriosis Awareness Month: A Glimpse Into My Reality with Endo

It's endometriosis awareness month. 

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

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

A little personal history, for context.

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

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

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

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

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

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


And now, for the present.

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

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

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

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

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

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

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

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

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

Florence and the Machine - You Can Have It All

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

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.

Venting on a Flare Day

Today has been the perfect storm... 

I'm not okay.

My period is running late, but I've been in PMS for about 2 weeks. I've grown so weak from it, and my mood instability took over yesterday. Today the barometric pressure is contributing in its own exhausting way. Yesterday we shot off fireworks for Independence Day, and, well, the smoke played its huge role on how I'm feeling. POTS is roaring and telling me to stop trying to move. Not to mention the fact that I'm just overly tired from too much happening in my life. I've been running on empty for a while.

It's 3:30 now and I've been asleep 70% of the time since midnight last night. When I've been awake all I can do is tend to my nausea, bowels, vertigo, tinnitus, jello legs, cramping, and super bad mood. Why am I writing this with what little energy I have? Venting, of a sort. I have to talk about how I'm feeling somehow. I deal with it better when I can take it out of my internal self in some way.

This was me yesterday, putting on a face. I felt mean, exhausted, borderline ready to blow up in rage (if not for the exhaustion), and dealing with cramping and pain. I got dressed up for planned family photos. I tried so hard to hide it, and it ended up resulting in being very withdrawn with a few angry words that slipped out. Basically, I was faking being well. I'm so so so so sick of hearing "but you look good!" Yeah, I looked good on purpose. I'm not happy with my bangs, but whatever. It doesn't reflect how I felt. My head is twisted so you don't see my acne.




This is part of what's happening below the surface:




I use Clue, Period Tracker, and Fitbit to track my periods. Featured here is Clue. It's not the easiest to understand how to read these charts if you're not familiar. Those 2 red dots before the blue "fertility window" part of the cycle were when I was spotting during ovulation. The app keeps pushing up when I was in ovulation due to the length of time between my periods. I started PMS symptoms with ovulation, when I was spotting, I just forgot to track for a few days. All those colored dots in the last 12 days are PMS symptoms I'm experiencing (that I remembered to track.)

If you look at the calendar in the next photo, you can see how much of my time my menstrual cycle is affecting me. The blue times, or ovulation, always come with their own set of symptoms (even if I forget to track.)

This is all below my surface. Add to it MCS reactions, POTS, Chronic Fatigue, Chronic Pain, IBS issues... Seriously, I'm so over all this. I spend every freaking day dealing with all the crap in my body that I don't/ can't necessarily show on the surface.

I really didn't want to call in sick to work today. I try to reserve that for only the worst of the worst. I know I'm about to get even worse whenever I actually do start my period, so I wanted to save it for then. But I just had no strength to work with. Every time I got up to the bathroom I just saw spinning flying stuff around my head and my legs were wobbly. Eating made my symptoms worse. I couldn't stay awake. I kept falling asleep with my phone on my chest.

Getting sleepy and cross eyed trying to write this, but damn... if only I could scream and punch and curse and exorcise this demon out of my body. I need to talk about this. I need comfort. I need compassion. But it seems like most people in my life just want to tell me to suck it up and deal with it. I don't feel safe saying what I really think or feel to most people.

And tomorrow? Who knows. But I'm scheduled to work and my coworkers will be too short staffed without me. This is very stressful for me. It's not anyone's fault, but I can never know if I can be depended on when I'm late to start my period. The stress...…… grrrrr

Planning is Impossible

It's too early for my period to begin, about 10 days too early, but I'm in full blown PMS feeling like I'll begin the cycle at any moment. This is horrendous timing. If I'm this early this month, then I'll probably start my period while I'm traveling next month. It will ruin the entire *expensive* trip. Why did I schedule the trip so close to my period? I had no way to predict what would happen. I was very late the last two months. I had limited options of when I would be able to go due to my husband's schedule. I just had to guess on when would be a safe time to go.

Blood pressure is 89/57, pulse hovering around 100.

Sleep? I had nightmares all week when I was actually asleep. Last night I was finally exhausted enough that I got 9 hours of sleep, but I woke up feeling worse than every other day with poor sleep this week. My acupuncturist explained that my liver qi is rising, causing the nightmares.

I feel like I'm anemic - anemic on blood, life force, will to live... I'm just so weak today, physically and mentally.

I'm so tired of stressing over my body's problems lining up with my life plans. I can never stop worrying. I can never trust that I'll be able to participate in anything in my future.

In the words of Freddie Mercury, sometimes I wish I had never been born at all.
Why did God design our bodies so that we could suffer so often and to such a great amount? This is my cross to bear. I could be suffering just as badly in other ways. I could live in a war torn country learning to live with constant death all around me. Instead, I was born into a very stable loving situation. My suffering is just constant physical pain and exhaustion. But it's enough to drive me to insanity. To live with constant grief over missing out on my one and only chance to fully live life is enough to drive me to insanity.


Anyway, I really need to delay this period. I need to it at least start when it's supposed to. It simply cannot be early.

I'm going to try doubling my progesterone cream amount, and I'm going to take a Chinese herb blend (called Twin Sages) that is for stopping excessive bleeding. It has the type of ginseng in it that can help delay periods. We'll see if it works.

I'll probably end up getting stuck in this level of extreme fatigue and moodiness for the next 10 days if actually works. That's better than starting my period early next month while traveling.


I have the feeling that the best time of my life will be post-menopause. Then I'll give the middle finger to endometriosis and live spontaneously.

I am one of the most suppressed versions of myself. I wonder what kind of life I'm living in alternative realities where endometriosis, POTS, chemical and environmental sensitivities, chronic fatigue, anxiety, and depression don't control me? I wonder how many children I'd have, what kind of career I'd have, how many times I would have climbed Mt. Everest, how many books I would have written...

PMS is Torture

Extra long PMS

OMG



This was captured 2 days before my period started, so I had a 43 day cycle. I'm used to PMS being awful. I'm not used to PMS lasting 2.5 weeks, give or take a day or two because I think my symptoms began with what was actually ovulation. Ovulation just came late, so it was difficult for me to tell at the time.

It started with the mood change, cravings, and skin issues (acne, large pores, looking pale and malnourished.) The cramping set in after a week of that, then the bloating and heaviness in my gut. My mood issues came with feeling very withdrawn, not wanting to engage with people. After 1.5 weeks of this, thinking my period was due, I started to get the rest of my PMS symptoms. The breast tenderness, bowel pain, ovaries feeling like they're twisting and sending shooting stabbing pains down my legs to my knees, worsened insomnia with angry dreams, joint pain, fibromyalgia aches in all my muscles, disturbed vision, much weaker and more dizzy, very increased resting heart rate... it was like a 2nd PMS. That lasted for an additional week of torture.

The reason I'm reporting all of this is because it's so important to say how PMS can be just as bad as the period itself, if not worse. I actually dread PMS more than my period now. My mood was dark - so dark that I started to have suicidal thoughts (I wasn't planning anything, just thinking about how death would be an exit... this isn't abnormal, unfortunately.) I was too weak to accomplish anything, and too mentally blank and emotionless to enjoy anything. I spent about a week doing nothing - I couldn't do anything. I hated people, hated myself, didn't have a way to pass the time that made me happy, could hardly force myself to get anything like chores done... I was in this limbo, and I was ready to snap.

I do believe I have PMDD. Doctors have suggested it, but it's not officially diagnosed, I don't think. I'd have to read my charts to see if they put it down as an issue. PMDD is PMS on steroids, but it's classified as a psychological issue. PMDD is about the mood disorder that comes with PMS, mainly how the person so negatively relates to other people during PMS. It's not that I can't be nice or sincere, it's not that I'll be mean to you or blow up at you. It's that I seriously don't have the spirit to talk to anyone, listen to anyone, or even tolerate myself. I need interactions to be very short, very to the point, and almost mechanical - just do your business and be done with me.

You can't say I didn't try hard to manage this. I took my methylated vitamins, loaded up on vitamin D, my hormone balancing herbs, my bio identical progesterone cream, went to acupuncture and chiropractor each week, ate mostly blood building foods, exercised as I was capable, took lots of hot ginger baths, took my calming and cortisol suppressing herbs as needed, had a lot of alone time away from people... no one can say I didn't try hard.

My period *FINALLY* came last Saturday ALLELUIA! I had to call in sick to work... again. I have no control over this, which is why I chose to be very upfront and honest about this issue during my interview for this job.

My period was very painful, as expected. Remember how I had a laparoscopic surgery to diagnose and remove endometriosis? I'm not sure what it actually accomplished, aside from an official diagnosis. In fact, PMS has been worse than I'm used to since the surgery. I had 2 periods that were not very painful or heavy after the surgery, but then they went back to heavy and painful. The PMS, though? OMG.

But guess what? Yesterday, Sunday, the day after my period started, I felt SO MUCH RELIEF. I found myself wanting to talk to my husband. I messaged friends and laughed. I got some housework done. I shoveled the driveway! I didn't feel strong. I fought my POTS symptoms pretty hard a few times. But I mentally felt good. I wanted to be a part of my family again. I wanted to engage with people. I felt human! My period has become the remedy to PMS, when it used to be that my period was the scariest most dreaded part of my month.

From my Oura Ring.

(Note: The Oura is actually pretty bad at detecting when I wake up. I tend to lay in bed for an hour or longer after waking to find my strength and get up. It tends to show I get an hour or more of light or REM sleep than I do because of this. I need to learn to take it off once I'm awake to get better readings.)

This night was a week before my period started, but it's the best example I had from that week of what PMS was doing to my sleep. Most other nights had very choppy data, as if the ring couldn't read me for 30 min to an hour at a time during the night. Which tells me there's an issue... not sure if it's with the ring being unable to keep up with me, or if the ring wasn't tight enough because I was too cold.


And then my period started. Brachycardia! Whoa. The only time I see a heart rate below 60 is the night after my period starts. This has been consistent in all my recordings this year. Even my ZioPatch from my Neurologist showed the same thing. My Fitbit Alta 2 actually said I got down to 57, but I'm not expecting perfect accuracy from either device. I just get to see a general idea of my body's changes.



So to any of you women who tell me I focus way too much on my period and I need to learn to just push through it... well part of me really wants to get rude and nasty and tell you to **** off. But I'd rather just be understood, build empathy and compassion, and have your support.

And no, I refuse birth control. There is no way I'm going to take non-bio identical synthetic "hormones" that shuts down my production of real natural hormones and makes my body think it is pregnant long term. I don't want the very long list of side effects, especially the ones that will exacerbate my other conditions. It does not manage endometriosis very well - just ask the support groups I'm in with 20k women. The fact of the matter is that PMS has never been as bad as it has been since that surgery. Will synthetic hormones really fix that problem?

Anyway, now that I got this post off my chest, I want to go back to enjoying being myself! Hopefully for 3 weeks this time!

Day by day by day by day...

Oh to be me.

What is a like to be a 31 year old woman with chronic illness? Here are some snippets from my life lately:

Today I went to my local food co-op because the fridge was getting to be too empty. I felt tired, worn down, but thought I could handle a 40 minute round trip out of the house. I get the store, start shopping, the next thing I know I can't stand up in one spot without starting to see the blackness forming on the peripherals of my vision. My legs started to shake and tingle. I decided there was no sense in sitting down on the floor of the store, so I decided to just keep walking. That worked. I learned I could make it as long as I kept moving, so I couldn't stop to look at products, just had to grab as I walked by. I made about 3 laps around the store to shop this way. And guess what? They were completely out of the few things I needed most! A normal person might shrug it off and go to a different store before heading home. Me? My energy was spent. Had to go home without what I needed.

...That's a big reason why I shop online as much as I do. Except that I never received one of 3 boxes from my Vitacost order. I need to sort that out, but do I really have to put the energy into it? Seriously? Why can't it just sort itself out like magic and let me just sit here zoning out?

The cashier asked me how I was doing. I bluntly, with no tact or thought, said, "Not good, I didn't sleep last night." She asked if I was stressed and I said, "No, I just have a chronic illness and it decided to flare last night." She didn't have much else to say to me after that. lol. Poor cashier.

Why didn't I sleep last night? Oh, because PMS decided to start, and I was in full bitch mode. At 2 am. I wasn't upset about anything, nothing to be angry at. No person was irritating me. My mood just decided to be as aggressive and irritable as possible, which kept me up, tossing and turning. Then when I was sleeping here and there my dreams were very aggressive. I dreamed about my friend who attempted to commit suicide several months ago, which woke me up because I felt stressed out about it. I never really recovered from her telling me she failed her attempt.

I woke up to throbbing shoulder muscles, shooting and pins and needles pains in my legs, and adrenaline pounding through me.

And I realized how this is pretty much how every day goes for me, but it's so much worse during the winter. I'm never really sure if I'll sleep. I'm never really sure if I'll feel decently. I'm never really sure if I'll have the energy to be able to hold a conversation. I'm never really sure if my depression will let me actually care about what someone is telling me. I just have to figure out what I need to do with myself, moment by moment.

So what's the problem? Well I found a ton of mold growing on my new windows, for starters. Winter condensation that freezes when it's below zero outside causes it.  The outside temperature went from -6 degrees to 47 degrees within a day, and we all know how the barometric pressure messes me up. We did just shampoo the downstairs carpets with Biokleen shampoo, which I didn't react to while doing it, but later got a mild version the hives around my eyes that citrus essential oils tends to give me. Plus we disturbed all that dirt in the house. I also went to church. Perfume! And then my monthly cycle just hit the worst phase... and I've been spotting, so who knows, maybe I'm anemic or something. I seem to be very prone to Blood Deficiency.

You see, I just can't win, especially not in the winter. When I feel decently it's purely by chance.



So...

If I spent my entire day playing video games on my phone, so what? At least I'm engaging with people there. At least I feel like I'm accomplishing something, even if progress in that game doesn't affect my real life in any way. At least I'm mentally stimulated rather than just rotting away watching TV. I can't just watch TV, I need to be engaged with something, and video games work perfectly when I'm too tired to do anything else. I'm often pretty bad at the game because I don't have the mental energy to think through what I'm doing, but it is what it is.

I will work at my job, do chores, and contribute to society when I'm capable. I have days when I'm just not capable. A lot of days. I'm not lazy. It's not an addiction to video games. I just can't function normally. Believe me, I'd much rather be raising children, own my own business, going out with friends, working towards buying our own house. I have to deal with these desires every day. If I were lazy, I wouldn't want to be living my life fully. I'd be happy to just settle in to a fun addiction rather than working on progressing in life.

So let me leave you with this article about environmental toxicants causing depression, pain, and chronic fatigue.

Product Review: Fitbit Alta HR 2

 I have been extra unwell this month, but I have several things I want to write about before I forget to. After all, this blog is to help me chart my progress as much as it is to help you, my readers, find your own path based on my experiences.  

I decided to buy a few things for Black Friday, one of them being the Fitbit Alta HR 2. This review will look at it not for fitness or athletic reasons, but almost strictly for how well it helps keep track of heart rate issues.

The reason I, as a person diagnosed with POTS and Inappropriate Sinus Tachycardia, have been so hesitant to even bother investing in a tracking device is because they simply haven't been good enough. They're still not good enough. The new Apple watch might be good enough from what other people have told me, but I really don't want to buy any Apple phone or PCs or tablets to pair it to. What I mean by "good enough" is that they are not accurate enough measuring HR on the wrist (a chest strap is still the most accurate), but also that they don't record HR often enough and miss when the HR spikes. I also am getting really burned out on this whole chronic illness problem I have, so the constant reminder that I have problems isn't the best for my mental health. The problem is, I was constantly reminded I have health problems even without wearing a tracker, so is there really a difference if I wear one? Maybe it's more fun for me to see and track details about my problems as they come up?

I decided to go with the Alta HR 2 for one main reason (other than the major sale price): it will take continuous heart rate measurements. Most trackers only track while you're working out, if you put it in work out mode, and capture your heart rate every 5 minutes or so. This one will show me my current HR every time I look at the Fitbit itself. I did have to program it to be in "continuous" mode, it doesn't automatically do that, but it works fairly well.

I've used this for a couple of weeks now. It already revealed something that I've learned from my Oura Ring, except that the Oura only measures HR at night. This is measures through the day.



I was in PMS when I first started to wear the Fitbit. It showed that my average resting heart rate was around 80 during PMS. I started my period on Sunday, December 9th. See the difference after that day? My average resting HR went down to the lower to mid 70's. My Oura Ring is still much better for using HR to track my period because it's measuring HR only at night, when I'm still. Going to work having an active day doesn't factor in to affect my lowest heart rate. My Oura also gives other good tracking info for my period, like body temp and respiration rate changes. If you're looking for the better tool to track your period with, I'd recommend the Oura Ring over Fitbit.

The green in the HR chart is when my heart rate is normal. When my HR is above 94 bpm it turns yellow, which is the "fat burn zone." I have to laugh really hard at the fact that I'm often in "fat burn" for 5 or more hours every day... and I have fat to burn on my body! I'll show more details about this in the next photos. With this weekly chart view alone I can see that I have tachycardia problems. If I wanted to, I could change the fat burn zone to start at 100 bpm, and then all the yellow would only show when I'm in tachycardia. The medical definition is that a normal resting heart rate is 60-99 bpm. But if you're just sitting on the couch listening to relaxing music and your heart rate is 94-99, don't you think that's too high? That's why I'm leaving it set at the default 94 bpm. I definitely feel like my heart is working out at 94 bpm.

So, is this Fitbit helpful for POTS? (POTS being an increase of 30 bpm or more when going from sitting to standing.) I'll show you in photos why it's only mildly helpful, and why I wouldn't insist any POTS patient go out and buy one.

Here is a day when I was very symptomatic.



The problem is that each point on this chart is about 5 minutes apart. I watched as my screen on the Fitbit showed 150's and 160's, but those numbers don't show up here in the app. It's because when I peak, I only stay at that high HR for maybe a minute or two at the most. Not long enough for the Fitbit app to record it. It happened to catch that I was near 130 in the evening, but what if that peak was actually in the 150's? So yes, the app shows that something wacky is going on, but there are not nearly enough details to actually use the information. If I were to want to use this information medically, I could not. It might be enough to convince a doctor to prescribe a heart rate monitor, like the Zio Patch I already wore for 2 weeks.

But let me show you the day when I felt the most normal/ healthy since wearing my Fitbit.


I did not work on this day, and I was very restful all day. It's a big contrast to the last day I showed you where I was very symptomatic. The data can give a decent overview of which days are better than others, as long as you're not trying to rely on the finer, often more important, details.

What I'm finding is that the most helpful feature, by far, is being able to simply look at the screen and see my HR. I've compared its readings to my pulse oxygen meter's readings, and they're almost always the same.


Most of the time. When I'm symptomatic or my HR is changing too quickly it just shows me a few dash lines instead of a number. There have been plenty of times when I wanted to know where my HR was, but it couldn't read it. My pulse oxygen meter has the same problem - I can't trust that it will actually pick up a reading either.

As far as using the Fitbit for steps, food tracking, water logging, period tracking... that's not really what I'm using it for. I greatly prefer Clue for period tracking, and the feature on Fitbit is very irritating for someone who is not regular. I check my steps, but it really doesn't mean much to me. I learned what I wanted to from my steps with my Flex 2. At this point, the only thing step tracking is good for in my case is with the Achievemint app. If I were trying to get more physically fit I would use the feature, but I don't have the energy.  Food tracking and water logging? Hahaha, you really think I'm going to take the energy? I don't believe in counting calories. I believe in eating the right foods at the right times, and I'm already doing that.

As for sleep tracking? I'll analyze that against my Oura Ring later. I'm curious, but honestly I've been struggling way to much to have the energy to compare the two devices. This Fitbit does show all the same sleep stages that the Oura Ring does, but the technology is different, and I would be surprised if the Fitbit were accurate. The Oura Ring is only about 65% accurate (according to the Oura Ring user's group I joined on Facebook), and it specializes in sleep tracking.

One big problem I had right away, that I was able to change, was the band. The original silicone band that came with the Fitbit gave me eczema. This surprises me, because I used to wear a Fitbit Flex 2 for about 2 years. That silicone band did not cause a reaction with my skin. I went on Amazon and bought a pink genuine leather replacement band for $6. With my MCS issues you'd think that a dyed leather band would be more problematic for me, but nope, I've had no issues with it so far this week.

And if you're not concerned about the EMF radiation, the fact that I can read text messages on my Fitbit is pretty handy! I also like actually having a clock on my wrist too. It's a massive upgrade from the Flex 2 I was wearing. That said, I would prefer to keep my EMF exposure as limited as possible, while still actually using technology. I keep my Oura Ring in airplane mode for that reason. I could do the same for the Fitbit, but right now I'm using the "all day sync" feature.

In conclusion:

If you have the money to spend, yes, it's useful and might even be helpful, if you're not relying on accuracy. If you're tight on cash, don't worry. I don't think a monitoring device like this is essential for mild to moderate POTS patients.

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. :) 

Blood Deficiency (Chinese Medicine)

In Traditional Chinese Medicine there is a concept called "blood deficiency." It doesn't necessarily mean that a person is lacking actual physical blood. If you would like to learn what it is, I suggest this article. In western medicine it often presents as anemia or chronic fatigue, but other wise healthy people can experience it.

I regularly fight blood deficiency. It causes me to fall away into the core of who I am, living there, unable to really connect with the world around me. I become distant, irritable, very guarded, and often incoherent. My thoughts and emotions feel highly intense and heightened due to living in them, but I have no energy to express them. There's no strength with which to pour that emotional experience into art, conversation, or work. So I appear outwardly cold, uncaring, dazed and confused, and perhaps even unloving. The truth is that I love hard and fierce, but if you want me to show it you'll just have to watch for the finer details in how I do spend my energy. If you give me time to be alone, let me recharge, and be very selfishly focused on my own needs then you'll see me come out of my cocoon and wanting to invest in you again. Until I'm once again drained. When people take a little from me every day, I never recharge, and you won't see me turn into that butterfly that is who I really am when I have full strength.

So you must understand that I have to pick and choose who I give my energy to very very carefully. For years I tried to maintain this blog, be active in Facebook support groups, be an attentive wife and friend, and give my best efforts to my job. It wasn't working for me. People kept taking more from me than I had to give. I now have accepted that my body has decided to control who I can give any energy to. Don't misunderstand. If I were well, I would treat every person in my life as equally important. I'm not well.

I have two versions of being trapped in this state. One version is that I can't tolerate outside stimulation. I don't want TV, music, people, or other distractions. I just want to be in silence. In this version I tend to be calm and submissive in my dreams, where I live. I can't step into reality, my dreams are always in my vision. I just let my natural desires and instincts play out in these dreams, and normally I find I'm just giving up and giving in to anything.

The other version is the one I'm in now. I crave music that reflects my emotional state, to the point of playing the same few songs over and over and over. I want to be fed what I want to feel, not made to produce those feelings on my own. I want my food to comfort and warm me. I'll drink hot herbal tea constantly. I want to have deep basal desires met, maybe physical touch, emotional, spiritual... like I'm hurting for not having my cravings filled. I want a very deep conversation with a person online to connect my soul with someone else I fully trust (no small talk or work talk or I will scream), but not in person. It's easier to type than to speak, and I'm not burdened with the need to show facial expression or body language online. Thankfully I have made a couple of online friends who are the same wavelength as me most of the time. I don't need a selfish conversation - often I just want to ask question and listen to them, but this sort of connection is like food to me. I selfishly need it as fuel so I don't go crazy. 

Either way, you may see the trend that I just can't fully exist in reality. It wouldn't matter how good my life is, I wouldn't be able to engage with it. No matter how many times I say this, people don't know how to respond. Some people think they can just force reality on me. Others just act like I didn't ask them to leave me alone. Some try to help me - and I do not want it. Help means work, which drains and only makes me worse. It means I have to respond with gratitude, and that response can drain me. Think of me like a cocoon. I'll come out and engage with you when I'm ready. 

No matter the version I feel, my physical symptoms are often the same. Poor digestion, bloating, blurred strained vision, light sensitivity, worsened POTS, low blood pressure, painfully freezing purple toes, joint stiffness and aches, aching heart from being over worked, muscle tension and pain, swollen tongue and tight throat, feeling 100 pounds heavier than I am, pale lackluster skin with huge bags under my eyes... and this time, I've been bleeding very heavy for a week during the middle of my cycle. All that bleeding prevents me from healing and improving.

The acupuncture bed is my favorite place to be each week. Acupuncture is a fine art, the practitioner and skill level really does matter. I start with having cupping done, and the warmth it brings to my back is one of the best feelings in the world. It helps my muscle tension, but it also helps me take a deep satisfying breath. I often cough from the raw feeling of breathing air into the bottom of my lungs after cupping. Then come the needles. Sometimes my body fights the effect and my heart rate sky rockets - my qi moves quickly and can feel like anxiety flowing through me for a while until I finally deeply relax. Other times the needles kill all the anxiety in me, allowing me to fall deep into soul and stop feeling my body at all. I have the best imagination and dreams in this state. 30 minutes of deep pure relaxation and comfort that can't be replicated by any drug. I've had out-of-body experiences, and that feeling is more therapeutic than anything else in the world.

It's hard for me to write this. The person I am when I'm well and healthy would be embarrassed by this. I'm careful about how I present myself so that I can get along with everyone. I like to know who people are, and I like to show how much I care. When I'm healthy I guard any dark, anti-social, depressed feelings I have from others so I can just show them love and care. I'm a highly empathic person, but I've turned that empathy on myself and away from others. I'm studying myself like I'm another person desperately trying to connect with this person I see in me.

The best thing you can do is let me guard my energy. Don't take it personally. Taking it personally will tug at my empathetic nature and drain me. It's not about you. It's about me being hardly alive. I'm a flicker of myself. Don't put that light out. 

Laprascopic Surgery

Laparoscopy: putting a camera and lasers into your abdomen via your belly button to diagnose endometriosis and other organ issues.

It took me 5 years to finally agree to have it done, and in retrospect, I wish I just would have done it right away. That said, I think it took 5 years of trying to heal and improve through other methods to realize I just needed to get surgery. My periods did improve a lot through natural healing methods, but after 5 years I still had endometriosis to have removed. This is an expensive surgery that insurance might not cover for you, but I believe this is a surgery that you shouldn't put off if you are suffering from your periods.

A little background on me: Since I was 17 my periods have been living nightmares for me, some of them so horrendous that I'm fairly sure they gave me some mental trauma. I've had people roll their eyes at me when I've said this, but it's true: the trauma was real. I've been scared of each period as it comes, bracing myself for the extreme pain. I've had to plan my entire life around when my periods were due to start, and that hasn't always been easy because of their irregularity. The pain that came with the first day of my period was so extreme that taking 12 ibuprofen wasn't enough - I was counting carefully. Sometimes I had to knock myself out with Nyquil and sleep through the worst of it while wearing an adult diaper. 7-12 hours of laying in bed, screaming from the waves of pain that just moving a toe brought was trauma-inducing. Losing 7-8 ounces of blood on the first day alone was incredibly difficult to deal with. The pain and blood loss left me incredibly dizzy and sick in every possible way - imagine sitting on the toilet with extreme amounts of blood coming out of you while you're struggling to breathe and your vision is going in and out of being pure black. And then co-workers and past bosses have had the nerve to tell me I was just weak and should learn from other women who just deal with their periods.

I went to a gynecologist about 5 years ago who recommended having a laparoscopy done. She told me she was almost certain I had endometriosis, but needed to do the surgery to confirm it.  There is no other way to diagnose it. I didn't take her up on it at the time because my insurance wouldn't pay for it - my quality of life came down to insurance, yes. But I also started to see my Naturopathic doctor who told me he could probably improve my symptoms. He was right. It took a couple of years with his care to get enough relief, but he was able to reduce my flow from 7-8 ounces on the first day down to 7-8 ounces in 4-5 days time. The pain reduced about 50-75%. He made an herbal tincture for me that killed the remaining pain perfectly - it works a billion times better than any pain killer every did. So because what he was doing for me was helping over time, I didn't go back to my gynecologist.

But then about a year ago ovarian cysts started to give me pain throughout the whole month, and that pain has been growing harder and harder to deal with. I can't manage my periods without my tincture, which makes me very sleepy. I still can't go to work on the first day of my period - I couldn't even drive if I needed to. The problem is that even when the pain isn't that bad, I'm still fighting vertigo, diarrhea, air hunger, extreme fatigue and weakness, digestive issues, and depression on the days around my period. That is likely from POTS (Postural Orthostatic Tachycardia Syndrome.) I always assumed it was the period itself causing the problems. So when I went to the gynecologist a couple of months ago to finally have the surgery done to relieve the rest of my pain, I wasn't giving up on my natural healing methods, I just knew I needed an official diagnosis and more relief.

It took a couple of appointments and other testing done before my new doctor agreed to do the surgery, but she did agree that the laparoscopy was a reasonable next step.



My husband and I had to be at the hospital at 6:30 am for an 8:10 surgery time. I wasn't allowed to eat anything 8 hours prior, so as someone who fights hypoglycemia I was very thankful for a pre-breakfast surgery time. I was not asked to do a bowel prep, but I did it anyway. I am so glad that I did - if you're not asked to a bowel prep, just go to your local health food store and buy some magnesium citrate and drink it down the night before. You'll be thankful. I was asked to take a few showers with antibacterial soap, but I just used Dr. Bronner's tea tree bar soap (tea tree will kill anything). If you're MCS and cannot tolerate tea tree essential oil, I honestly think you'll be just fine with whatever soap you tolerate. I'm not in the habit of using tea tree unless I have to, but in small amounts I can tolerate it. They covered my belly in iodine before the surgery anyway. Yes, iodine, which was perfect for me.

I was not allowed to wear any jewelry, lotions, perfumes, etc. As it turned out, I didn't notice that any of my doctors or nurses smelling of perfume either. The only trouble I had with it was the scented bathroom soap, and I only used the bathroom once before the surgery to pee in a cup for a pregnancy test first, and I was able to use my own unscented soap that I brought with me. The bathroom still reeked of scented soap, and I was reacting and feeling unwell from it shortly before I went into shock. The shock wasn't just from the reaction, but it did contribute. I think that the hospital takes the operating room more seriously than any other outpatient service. So my MCS issues weren't a big deal for me personally until I had all the meds in me.

I waited with my husband in a pre-op area. I think it was obvious I was nervous because the nurse that was with me doing all the paperwork and official business with me on the computer asked another nurse to come stay with me. That nurse was amazing. She helped me get into this big gown full of pockets for hot or cold air to get hooked up to. She stayed and talked to me to help me stay calm, and she was the one to wheel me to the operating room. I went into shock while she was wheeling me - shaking, crying, shivering, hyperventilating... big adrenaline and blood sugar type crash. She made the decision to allow my husband to come with me to the operating bed, the place I was in before going into the operating room. I was still struggling while on the bed with shaking and breathing, but my husband was able to be there to help me. I talked to my gynecologist (who did the surgery) and the anesthesiologist there. My doctor is gentle and nice, radiates confidence, but isn't arrogant or dismissive of me at all. She had exactly the right attitude I needed in a doctor who was about to open me up, and made me feel at peace with having the surgery done.

They had read my cardiologist's report before hand and saw I was just diagnosed with POTS and put on the Metoprolol beta blocker. I told them that I wasn't comfortable with them giving me a beta blocker for the surgery since I hadn't tried the Metoprolol yet and didn't know if I would be reactive to it. They did give me beta blockers in my injections, though. What I'm not clear on is if they gave it to me preemptively, or if I was going into tachycardia and needed it. I wouldn't be one bit surprised if my heart rate was too high from reactions to the other meds - my MCS reactions sky rocket my heart rate. I was able to discuss my concerns with anesthesia with the doctor, and he listened well.

I remember being given a port for the IVs, but I don't remember being given the anesthesia. I woke up in the same place to hearing a doctor yelling at nurses. I heard, "You need to get your shit together! What if the patients saw you acting like this?" There was arguing for a while. I thought to myself, "Oh this is funny, I can't wait to share this with everyone." They probably assumed I wouldn't remember hearing that if they had known I was waking up, but I remember everything after waking up. Poor nurses.
I wasn't able to open my eyes very much at that point or move my body, but I was alert. It wasn't long before a nurse was helping me get into a wheel chair. I remember thinking it was so strange that only one nurse was needed to get me out of the bed into the wheel chair - that I was able to get up as if I didn't just have surgery. She wheeled me to a room where my husband was waiting for me, then we went into a post-op recovery area.

I felt great. I felt better than ever. No pain, no anxiety, no feelings. I was very relaxed. If that many pain killers can make me feel that good, what does that say about my day-to-day pain and anxiety?

Except that I could feel one thing: my throat. My throat was so incredibly dry, horse, and in pain. It was like they stuck sandpaper down it. What they actually did was put a breathing tube down my throat during the surgery. Part of the tube had cut the inside of my lip too, so I couldn't stop licking it. They gave me ice to suck on for my throat, and I ate applesauce and popsicles.

I went through one and a half IVs in that room, and I went though at least one during the surgery.  I couldn't feel that my bladder was very full and ready to burst. I was just numb. I just noticed an odd heaviness and questioned if I needed to go. The nurse had to walk me to the toilet. I was really weak.

My doctor came and told me that she did find scar tissue and endometriosis. She sent a sample of it to the lab, and burned the rest out. One of the spots of endo was on my ovary, so she couldn't remove it without damaging my ovary, but she did burn off what she was able to. She scraped at the scar tissue she found to loosen it up. The nurse and the doctor went over my care instructions for at home and how to take my pain killers. I was prescribed Percocet and prescription Ibuprofen. Not having taken pain killers for 5 years and remembering having trouble with them, I was so scared to start them. But I had no choice. They were necessary. More on this later.

I got dressed after peeing a bunch more, and they let me go home. I think we got home around 1:30 pm, so I was at the hospital for about 8 hours. I felt pretty good for a couple more hours, just laying in bed eating popsicles for my throat.




Note:

I've had this typed up and waiting to be finished for over a month. I didn't finish, but I just can't right now. So exhausted and my energy is going to more pressing issues. I can get into my recovery in another post, because that's about where I left off. :)