Product Review: Computer Glasses, Gamma Ray vs Gunnar

You may have heard about, or already using, blue light blocking computer glasses. They're glasses with an amber tint to the lens that filters the blue light from screens.

Why wear these? Blue light is what disrupts our melatonin production (making it hard to fall asleep at night), gives off the wrong circadian rhythm cycle messages in our eyes, and creates a lot of the eye strain from staring at screens. There are all sorts of studies on this, but Harvard has a good simple, fast article about it.

I can't use my phone or computer for long without wearing these glasses. It doesn't take more than a few minutes for me to start squinting, getting red eyes, tears start producing... and before I know it the dreaded screen headache. It was never that bad for me until recent years, after developing these illnesses. I used to stare at a computer for hours and hours during my teens and early 20's without much complaint. I'm a gamer, what can I say? But now I have to use screens in small doses or wear my computer glasses.

For a few years I've been wearing a pair made by Gamma-Ray, which I bought on Amazon. This particular pair isn't sold anymore, but the brand is pretty much the same, you just choose the frames you like.

They help a lot, and I've relied on them. They've served me well. But I was never entirely happy with how easily they smudge, and how hard it is to clean the lenses. I often just put up with feeling like I have a film on the lens. I've also been unhappy with how they're flat, letting light in from the sides. If I'm near LED lights (which also affect my vision like screens do, so be cautious about putting them into your home if you're light sensitive), the light from them hits my eyes from the sides. Most of the time this isn't a problem.

But I started to question if other brands really were making computer glasses better. There are a couple name brand companies that claim to do it best. Gunnar and TrueDark (Bulletproof's Dave Asprey supports the TrueDark brand) both are the elite brands, and both offer glasses with curved lenses to protect the sides of your eyes too.

I found a pair of Gunnar glasses on discount, so I decided to buy it and try it out. I bought the Blizzard Heroes of the Storm (video game) themed glasses, lol. Gunnar makes glasses for specific video games. Anyway, they have larger lenses than my other pair, and they are curved. Also, the frame is very thin, and my hope was that I wouldn't be looking at the frame in my peripheral vision like I do with my Gamma Ray glasses.



They're ugly as sin on me! 😀 lol

But that doesn't matter so much. For a pair of glasses that was originally around $80, I'm actually not impressed.

First of all, the frames feel cheap, like a toy. I worry that they'll be easy to break.

Secondly, yes, they are curved lenses, but not as much as I expected. They do offer a slight advantage in width over the Gamma Ray glasses, and I do get more eye protection. But not as much as I was hoping for. The problem is that the curvature makes me really dizzy! If I'm looking straight ahead at the screen there is no problem, but I cannot walk around with them on. They give me vertigo like nothing else does!

Thirdly, the lenses truly are better. There is a noticeable difference between the Gamma Ray lenses vs these Gunnar lenses. Gunnar is known for having the best lenses, and I understand why now. It's like I'm not looking through a lens at all. They're very clear, and I don't see the frames in my peripherals. They definitely block out the blue light. It doesn't look like there is an amber hue while I'm wearing them, but the screen looks very purple to me when I take them off. They simply do work better for me, even though the Gamma Ray glasses are more comfortable and don't make me dizzy.

Gunnar:


Gamma Ray:



Can you see the difference?

I was happy with the Gamma Ray for years. They do work, they significantly cut down on eye strain and redness. But the Gunnar filter better. I don't see the amber color when I'm wearing them, my screen still looks white. It just doesn't look as glaring, bright, and shiny.

Ideally I'd rather have a pair of Gunnar glasses that have all the features I like without the way the lenses are curved to make me so dizzy. I'd also love a pair that isn't black and has a more feminine shape. I'm asking for too much, aren't I? Sigh.  

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. :) 

Dear Christians,

Dear Christians,

Thank you for trying to care and spread love to all of God's creation, even those with chronic illnesses like myself.

But... I have something to say to you.

1. A lack of faith isn't why I suffer.
Why be condescending towards me? Is your faith strong than mine just because you don't have a chronic illness?

2. God doesn't necessarily want me to be "healed." 
Do you know God's will for me? Am I pre-destined to be healthy?

3.  Suffering doesn't make me a bad Christian. 
Living with depression and suffering from disabilities is not the same as living in sin. I don't need to be saved from the burden of physical limitations to reach salvation and find joy in God.

4. Do I need to be healthy to fulfil my life's purpose?

Are only the most physically and mentally qualified people allowed to do God's will, as if we're hired to do a job with prerequisites?

5. I'm still waiting for you to stop telling me what to do, how to feel, how to act, and what to be. I'm praying for you to seek to understand, not to be understood. All you have to do is let Jesus live through you, you don't need to be a dictator on how to have faith. To quote Bono, "Stop helping God across the road like a little old lady."

6. Laying your hand on me and praying for me in public is not always the best way to spread the Gospel. God blesses those who pray in silence when no one is watching. My faith is deeply personal, and I don't need you to put me on display. I respect and understand the need for a faith community, but while I'm on the clock at my job is not the time to prove your faith for me by forcing me into a few minutes of spoken prayer.

7. Faith is not an emotion. Let me say that again. Faith is not an emotion. If the Christian pop song on K-love doesn't melt my heart, make me stop what I'm doing to put my hands up in the air, and feel God's love it doesn't mean I'm lacking faith. I'm not charismatic in my faith. I don't need God to give me emotional highs to know He's present. I'm not falling away from God and into sin when I feel sad, depressed, lonely, or angry. I'm sorry if I don't look like I'm Christian just because this very new evangelical culture (as in it's not as old as the Church or the Bible) doesn't work for me, but I'm not trying to prove anything to you. I only have to prove my faith to God, and I can do that in silence where no one can see while I'm feeling depressed and angry. I don't want to be on display, fake or force emotions, or even feel guilty for not expressing my faith through emotion. I do not feel guilty for not being charismatic. But you might notice my faith through how I treat and care for people.

8. Consider that my suffering is actually a blessing to my soul, and that perhaps it's helping me serve God better. Is there not something to be learned from any experience? Should we not always grow as people? Can I not be formed into a strong faithful person through difficult times?

9. Stop telling me I'm not doing enough. You think I have to make an appointment with some stranger in some office building to have them pray over me for me to be healed? You think I have to fly to another state to meet with some special spiritual healer over 12 days in order to heal? You think my church community isn't good enough if they're letting me suffer? You think receiving the Sacrament of Anointing of the Sick is not effective and your special spiritual leader is the only one who can help? Have a little faith in me and my faith community.

10. I see that you're trying to make the world fit your worldview that you think encompasses God's will for all of his creation.Please never stop learning, updating your worldview, and seeking new understanding. Stick to your values and morals - you need them! But allow yourself to empathize with people. Sometimes life isn't as simple as following rules that fit your worldview.

11. Consider that I don't have the energy to have deep conversation about which denomination I am every time you see me.Consider that you might be driving me away from the Christian culture due to how exhausting it is to listen to you tell me how my denomination is wrong, my faith is incomplete, and I need to change my personality to fit how people with faith should be.


Thank you for listening. Have a conversation, in which we take turns listening to each other without giving each other orders, with me when I can handle it. Ask for a time when it won't drain me and make me suffer more. Just stop telling me I'm wrong because I'm sick. I'm too tired to keep being beaten down by your lofty standards for Christians. Stop bragging about your faith being why your life is so good and mine has problems.

Sincerely,

A Concerned Christian


Note:
Each of these points are referring to specific encounters with multiple, various people. Most of them were complete strangers. These are not arbitrary references. I've debated on writing this publicly for over a year now, and it's time that I released the pressure and finally just express myself. I am legitimately concerned about how a couple (out of several) Christian cultures is treating people with Chronic Illness, but I believe all Christians need to hear my letter.

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. 

Post-Surgical Depression

I really question if the laparoscopic surgery was worth it. I got a diagnosis, which is very helpful in communicating my needs with others. That alone is invaluable.

But I haven't been myself since the surgery. I've been emotionally dead too much of the time. It's not that I can't laugh and joke around with friends, but I have to be in the mood to now. I often see that my friends are having a good time and I could join in and have a ton of fun, but just don't want to laugh. I don't want to engage with them. I don't think it's just a lack of energy, it's definitely a mood issue. I feel myself going back and forth between feeling happy and engaged and completely emotionally cut off and distant. It's driving my crazy - as if I'm in PMS all the time. I'm not myself. I just can't find it in me to want to talk to people too much of the time. This all happened since the surgery.

I have had all sorts of physical issues too. My toes are almost always FREEZING icy cold, and now I have the first toe nail fungus infection I've ever had. I've gained weight and feel inflamed and puffy. My skin has broken out much more frequently and more intensely. My POTS symptoms have been worse. It's hard to stand up in one place for more than a minute. I have to lean on something or keep moving. It's exhausting to just stand still, and the blood pooling in my legs is more obvious. My feet turn purple. I've been more reactive to allergens again. Lots of sinus trouble with bloody noses this summer. My "fibromyalgia" has come back in waves. Muscle aches and cramps, tender skin, and pain with using muscles in slightly the wrong way. I have a ganglion cyst on my wrist under my thumb, and my thumb has hurt a lot. Can't squeeze anything without shooting stabbing pain. My finger and toe nails are peeling off the top layer again. My pupils are not the same size fairly often. I'm dizzy frequently. My energy level has been awfully low. My digestion is weak. I'm feeling low blood sugar before my stomach will accept food.

My husband keeps telling me I'm argumentative too. I sense he's getting frustrated with me. I'm trying. I really am. I just constantly feel like I'm at the end of my rope with energy for making decisions or tolerating changes. He's trying to get stuff done and accomplished and I just can't process it. When will I be able to handle it? I don't know. Probably in too much time to wait.

It feels like I've lost a lot of progress in my health.

I've been laying out on the back deck in the sun as much as possible. It's not been enough to warm up my freezing toes. The sun feels great, but it's not helping with the depression the way I was hoping.

Now I can't be outside easily. All the wildfires in the west are creating lots of smoke, and that smoke is heavy here now. We're in the red zone for air quality. The sky is just... gray.

I don't know what to do. It's hard to find motivation when all I want to do is lay in bed. But when I feel good enough I can log into my game and hang out with my guild mates and laugh and have a lot of fun. All from the comfort of bed. Great friends that don't require physical energy - it's a huge blessing. They don't need to know about my health issues. I can just be normal and myself with them. But as it turns out, many of them also have health issues - it seems many of us are attracted to the game for the same reasons. 

Music for Dark Moods

I want to do another post on the music I've been listening to that has been helping me deal with depression and exhaustion. Since the surgery my mood and depression has been really unstable. I've also had to spend too much energy on projects that have worn me down, making me need to pull away from people and just be inside myself. I often don't want to listen to music when I'm that tired because it's stimulating, but this time, with all my mood swings, music is helping me stay centered even when I don't want the stimulation.


1. Whole Album: Beck "Morning Phase."
Beck is an artist that I enjoy socially and in small doses on my own, but overall doesn't really fit who I am as a person as well as other artists do. This album is so tranquil though. It's so relaxed, so at peace with the world, and such a calm and optimistic way to start my day. It's about the morning - that wonderful feeling of waking up rested before starting the day. I don't experience the waking up rested part often, but this helps me feel like I know what it feels like. :) This album is free to stream on Amazon Prime.

2. Whole Album: Evanescence "Synthesis"
Evanescence is a band with a lot of songs I've always thought I would like if only they didn't have incredibly boring metal guitars in almost every song. Amy Lee writes powerful melodies and sings so beautifully, but the guitars sound the same in every song. Well, she decided to come back with this album. It's mostly rearranged songs from her previous albums, with a couple new songs. This time the songs are full of what I love about their music and none of what I disliked. She hired an orchestra and the band isn't focused on producing the metal sound. It's beautiful - orchestral to create a big full sound that portrays the power in the songs better than the metal guitarists could. It's a mature Evanescence, an evolution of the band I was always hoping for. I absolutely love every second of this album! If you have Amazon Prime the album is streaming for free.

If I can point out one song in particular on this album that I've been so drawn to. This comes from an older album, and the original version is just... blah. This version brings the song to life (pun intended for fans lol.) "End of the Dream"


Why must we fall apart to understand how to fly? I will find a way, even without wings.

"Imaginary"

Don't say I'm out of touch with this rampant chaos your reality. I know well what lies beyond my sleeping refuge. The nightmare I built my own world to escape. 

"Perfect Imperfection"

I want to lift you up into the light that you deserve. I want to take your pain into myself so that you won't hurt. Don't you dare surrender! Don't leave me here without you, because I could never replace your perfect imperfection.

"Lithium"


Lithium, don't want to lock me up inside. Lithium, don't want to forget how it feels without. Lithium, I want to stay in love with my sorrow.

"Hi-Lo"

(Can't link to music video...)

Don't you know we could be high or low, you'll never fall beneath me. And I gave up on you, but I never forgot you.

3. Darren Hayes, but not a particular album. You probably know him as the lead singer of Savage Garden. He has an extensive solo career, but it never exactly came to America because the record producers wanted nothing to do with him after he came out as gay. He has some bad music out there, such as the song "Creeping Up On You." Who writes a song about stalking someone? But the rest? Very heartfelt. He sings full of emotion and passion without compromising good pop vocal technique. Lyrically he gets into the heart of any matter with masterful writing. I don't normally listen to this type of pop music because it's usually far too simple and meaningless for my tastes, but he's special. What I like most about him is that he tackles depression head on. He doesn't sing about it for sympathy, to explain himself, or to give the world an excuse for being depressed. He sings about the reality of depression, exposing it for what it is, and learning to live positively with it. Most of his music is about relationship struggles, which I don't have in my life, but I can still relate to the rest.

"Darkness" (Honestly probably my favorite song at the moment. Can't stop listening.)

I am famous for my generosity, they say I am the kindest. It is easier to give than receive love, give than receive love.

"Taken by the Sea"

Fall, I took a fall, I took it easy. On the surface I was perfect, but down, way down below, I started believing I deserved it. Was I worthless? Sinking like a rescue boat washing right over me, vessel is struggling, waving both my hands in the air. Then the blindness of love, then your arms all around me...

"So Beautiful"

And if all the world was perfect I would only ever want to see your scars

"Stupid Mistake"

I made a stupid mistake and my world crashed down all around me. I made a stupid mistake and I threw it all away, threw it all away...




4. Florence and the Machine, whole album "How Big How Blue How Beautiful" and several songs off other albums. Florence Welch is a mixed bag full of wonderful song writing with a band that isn't always tight or perfect, and with a beautiful heavenly voice that isn't trained well enough to always sound its best. Somehow, even though my standards are high for quality pop and rock music, this doesn't bother me, because her songs aren't simple. Well, some of them are, but she makes them good in other ways. She is a woman who has dealt with addictions (including sex addiction that's prevalent in her lyrics, not something I relate to), and she knows how to tackle her mental health through song writing. I'm not like her in many ways, but she knows how to speak to my soul. She has music for when I'm stressed out, angry, burned out... and most importantly, when I'm trying to tackle my own issues. Here's a sampling of her songs that have helped me:

"Sky Full of Song"


Hold me down I'm so tired now, aim your arrow at the sky. Take me down, I'm too tired now. Leave me where I lie... 

"Shake It Out"


And it's hard to dance with a devil on your back, so shake him off!

"Falling"


Sometimes I wish for falling, wish for the release. Wish for falling through the air to give me some relief. Because falling's not the problem, when I'm falling I'm at peace. It's only when I hit the ground it causes all the grief.


"Blinding"

No more dreaming of the dead as if death itself has been undone... 

"Various Storms and Saints"

You'll find a rooftop to sing from, or find a hallway to dance. You don't need no edge to cling from. Your heart is there, it's in your hands. I know it seems like forever. I know it seems like an age. But one day this will be over. I swear it's not so far away. 


5. Emiliana Torrini. She's an Icelandic singer with a beautiful soft voice, and she knows how to write musical poetry. She can describe a scene like no one else. There is a different mood on each of her albums. Some of her songs get incredibly dark in subject matter (singing about a homicide, for instance), but some expose the simply beauty of the world and make it grand. I don't always connect with her when I'm in depressed dark place, but I like pretty much every song she's ever written.

"Blood Red"

I want a car in red, without a roof, blood red. Goes so fast my lipstick runs downriver. Instead I stay a while longer. So restricted. I know too much, I'm so affected, the winding hours belong to strangers. 

"Birds"


Lend me your wings and teach me how to fly. Show me when it rains, the place you go to hide.



6. Muse. I've talked about them before, don't need to repeat. But they have a brand new song out that is perfect for my mood. I love it so much.

"Something Human"
https://youtu.be/azAEHCQgcUI

Blogger won't let me embed the link to it, sadly and very annoyingly. But if you're into 80's stuff and fast cars and werewolves then you'll love the video. It's epic! And the song is so spot on about my need for escape.




There are other artists that I can connect with too, but I've talked about them before. U2, Muse, Jack White... I wanted to highlight that I've been listening to these artists a lot this summer. As if it's been winter.

Do you have suggestions for me? Let me know who helps you through dark times please. :)

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. :) 

Value of Life vs Medical Costs

I'm drinking Numi's Gunpowder Green Tea with Vital Protein's Coconut Collagen Creamer and Redmond Real Salt and doing some reflecting before heading to my post-operation appointment with my gynecologist.

What is the monetary value of quality of life for a person with chronic illness who lives in a first world country with access to excellent doctors? Is it worth paying $14,000 for a medical surgery that might give a ton of pain relief, may result in fewer sick days at work, possibly improve fertility, and has potential to make a person feel human again? $14,000 could buy a year of college, a good reliable car for the long-term, a down payment on a small starter home, or a new roof for your home that will last long-term. What if I told you this surgery might only benefit the person for a couple of years at a time? Is short term quality of life (that isn't guaranteed) worth $14,000, when that money could buy long term services or possessions that also give quality of life?

Yes, my laprascopic surgery for endometriosis and my cardiology visit added up to $14,000. That's before my uninsured discount and my cost-sharing program benefits. My next step, after I wake up and am thinking clearly enough, is to make some phone calls about this bill.

In 2 years I can give an answer to this question, because I've been told people with endometriosis can need surgery as often as every 2 years. It's too soon for me to say if it's benefited me at all yet, given the fact that I'm still healing and my period hasn't yet come. The problem is, I wasn't aware that I was gambling with this much money when I agreed to the surgery. I was told that surgery was around $2,000. That turned out to be true. What I wasn't told was that I would pay $750 for each of the 3 anesthesia treatments I needed during the surgery, $7,000 just to be in the operating room, and lots of other charges for the staff that helped me in different parts of the hospital. If I dug deeper I'm sure I'll find the charges for the multiple IVs I needed, the time I spent in the recovery room, etc. Had I known the cost before surgery, would I have opted to do it? Probably, yes. It's a gamble, a bigger one than I anticipated, but I believe one worth taking.

The older I get, the less confident I am. Endometriosis has definitely been holding me back from living my life. I didn't want to apply for certain jobs because I knew I couldn't get away with calling in sick for my period in that position. I have had to fight some bosses over my needs around my period for years, and this has lost me the chance to get scheduled for better shifts or in better positions. And due to all of my health issues, I've never been able to focus on a career. I'm 30 with a college degree and I'm still doing shift work. It's not below me. I have a lot of respect for us shift workers. I'm paid well, I like my job, I like my co-workers and boss. I'm not complaining. But if not for endometriosis and my other health issues, would I have a career going by now? And given the fact that I don't make a salary, am I worth a $14,000 surgery?

I received my GED at age 16, married at age 19, and graduated college at 20. I was set up so well for a life with a good career and children. 10 years later, none of that has happened. My husband and I are happy together, but we're both very stressed by money, careers, health issues, and living within our needs. His career is very difficult because it's facing budget cuts at every turn, and his Master's degree isn't enough, but a doctorate doesn't guarantee a job. So am I worth a $14,000 surgery when we have these huge struggles? Would I be financially better off not getting medical treatment at all, and therefore not working? I could save money by just being disabled at home, not contributing to the work force. But I would be miserable. Is being miserable financially smarter, and could it lead my husband to more happiness if he didn't have to work as hard to afford me, someone who can't work much?

Don't misinterpret this post -

I'm not degrading myself. I'm not putting myself down. I believe I made the right choice. If I were evaluating another person in my situation, I would say that we each only get one life to live and all life is equal. Everyone deserves to live life in the healthiest way they can so that they can participate in life the most fully. I might have self esteem and confidence issues, but I know my value is the same as any other person. I carefully considered the pros and cons of this surgery over years. I've talked to countless people who have had it done. I've discussed with multiple doctors. It was a carefully made decision.

But what upsets me isn't that I have to spend this kind of my money for my health, it's that many people simply cannot afford the surgery or treatment and have no choice but to suffer. Why do I get to have the surgery to help me when others might suffer worse than me and can't have the surgery? I accept that the medial system is the way it is in the USA - I am all for improving it, but I can't afford the stress to worry about it. So I'm not. It simply is what it is, and until something can be done to improve it, I just accept what it is. I'm thankful for the good the medical system can do me, and my doctors and all the staff and nurses were excellent and I really appreciate all they did for me. But in the end, what makes me special?

Just some of my thoughts, but I hope my experience helps some of you make the right decision for you. After this Post-Op appointment I'll write about the surgery experience itself. 

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. 

Surgery and Diagnoses... It's Official!

In the past few weeks I was officially diagnosed with POTS, Inappropriate Sinus Tachycardia, ovarian cysts, and Endometriosis. It only took 5 years to get medical proof that I'm suffering, but I have it.

Here's the thing: POTS, Endometriosis, and Mast Cell Activation Disorder (MCAD) tend to go hand-in-hand. I haven't tried seeing a doctor for MCAD, but I have obvious chemical sensitivities that my Naturopathic Doctor helped me figure out. It could easily be MCAD - in fact, given the fact that I have POTS and Endo too, it probably is. I'm uncertain at this point in time if there's any point in me getting my chemical sensitivities diagnosed as MCAD by an MD.

The POTS diagnosis story:

If you follow my blog then you know that last December I saw Dr. Jeffery Cohen, a neurologist in New Hampshire to have some autonomic testing done to rule POTS out. The testing equipment broke, however, and he tried to cancel the appointment on me the day before my flight out there. He was willing to see me and look at other test results, at least. I went to cardiology clinic first and had a Tilt Table Test performed and an Echocardiogram. I did not faint on the tilt table, so the nurses said the test was negative, but Dr. Cohen pointed out that my heart rate did go up over 30 bpm (the requirement for POTS). He put me on a Zio Patch heart monitor for more information. He wouldn't diagnose me without more info, and after seeing the results of the Zio Patch he said I needed to see a cardiologist. My plan was to travel again to see a cardiologist familiar with POTS. My POTS support group said they didn't like Dr. Cohen because he wouldn't diagnose them, but honestly, I really liked Dr. Cohen. He gave me the tests I needed for an accurate assessment, and he was careful and thoughtful. I'm not upset that he wouldn't diagnose me, because I have better information for the diagnosis from someone else because of what he did for me.

I ended up finding a Cardiologist here in Bismarck that is familiar with POTS. I was really surprised by him, and I'm fairly certain he's the only cardiologist locally that is familiar with POTS in adults. I did a lot of digging and asking around last year and couldn't find a doctor who was familiar, and I think this doctor might be new since my asking around. Dr. Stephen Boateng, D.O. at Sanford in Bismarck. I don't think he's an expert on dysautonomia, but he is a very good and careful doctor. I really like him. Dr. Boateng was able to look at all my testing and see the evidence of POTS. He was concerned with my high heart rates on the Zio Patch results, particularly one spike I had. He diagnosed me and had me try a beta blocker: Metoprolol ER 25 mg. In short, it both worked and made me worse at the same time, so he took me off it. I plan to explain this in another post (or this one will get too bulky.)

What is POTS? This explains:





Endometriosis story:

Before seeing him, I went to a gynecologist at Sanford to discuss all my menstrual issues. 2 months of bleeding heavy every day, abnormally long PMS, extra pain... you get the idea. This wasn't the first time I've tried gynecology. Last time, about 4 years ago, I went to a very experienced doctor that I really liked, but she retired just a couple of months ago and I wasn't able to return to her. I initially saw her because I had a MRSA abscess on my vulva - and before you freak out and wonder what I was doing to get it there I can explain. A family member had MRSA who I was taking care of. I probably didn't wash up often enough. Anyway, she helped me recover from the abscess, but did other gynecological tests while I was seeing her. She told me I needed to consider a laprascopy to look for endometriosis, but warned me about the cost. My insurance would not cover the cost, so I decided against doing it. In retrospect, I really wish I had done it then instead of waiting until now. Why? Because I was worse back then and I would really like to know just how much worse I was - I'm fairly certain my naturopathic doctor and acupuncturists have helped me recover from most of my endometriosis before I had the surgery. But the fact of the matter is that I still have endometriosis, and it's officially diagnosed now.

This new gynecologist I saw first had me get an ultrasound, and it showed a few cysts on my ovaries where I have complained about pain. She said a laparoscopy was a very reasonable next step, and so I finally decided it was time to just have it done. I think I'll write a different post about the surgery itself, because I think I can share a lot that will help those of you considering having it done. Especially those of you with chemical sensitivities. I had problems,  I went through 3-4 IVs, but I believe it was worth it. My doctor said she found a lot of scar tissue, probably evidence of past endometriosis. I had endo in a few places that she was able to burn out of me, but I had some on my ovary (the one causing me pain) and she couldn't remove all of it without damaging the ovary. She said she burned it though. I had to have 3 incisions, and now for 2 weeks I've been nursing my belly and trying to let it heal. I'll share photos in the next post where I go into detail. My post-op is in a few days, and we'll discuss treatment options. Endometriosis is a life long illness that will have to be managed.

What is Endometriosis? This video explains:
https://www.youtube.com/watch?v=yM88T1R8HD4

(Blogger doesn't let me embed all videos on youtube - so I had to link to this one.)

Between recovering from surgery and going on a beta blocker for 8 days that made me worse in some ways, it's been a difficult time for me. Very difficult. And our finances are scary bad now. But I'm glad I went through all of this. I'm glad to have official diagnoses, and I'm glad to have this on my record in case I need more medical help - especially in emergency situations. No more arguing with doctors, they can just look at my records and see I'm not a psychopathic hypochondriac. That alone is worth everything I've been through!

Norovirus is No Joke

Here's the short version:

I got Norovirus and it lasted for 5 days. It ranked in the top 3 worst pain experiences of my life. I'm too drained to recover easily. My stomach and gut are not back to normal and are very picky about what food and in what amount and when I eat it. I'm emotionally dead and deeply depressed. I finally had my appointment with my new local primary care doctor since I need an MD on my record, and she's sending me to a gynecologist and a cardiologist.

...I feel like this is just leading to a repeat of 2013 all over again. Lots of money getting thrown at doctors who likely will just tell me I'm normal and it's all in my head. I wonder why I bother, then I remember my disability case, and I remember that I'm supposed to be hounding lawyers until someone takes my case. Yeah, well, give me some magic pill to return me to good health if you want me to try harder to get a lawyer. If I want to ever get government assistance then I need MDs, not NDs, to diagnose me. But it's the ND that actually helps me.

Am I being too honest if I say I either want to be able to live without all these health problems or just die? Does that make you uncomfortable? Sorry, my filters are full and can't filter anything else. It's all I can think about. I can't enjoy the things that normally make me happy. I'm pushing my friends away because I don't have any energy at all for them. I'm just blank. I'm emotionally dead. My body feels like an empty shell. There's no energy or life in me. Norovirus took what I had left. 2 days of vomiting, diarrhea, and horrid skin aching and tenderness. 2 more days of just diarrhea and skin pain, Another day of just diarrhea. Any fuel or qi or life energy that I had left is gone. I'm not suicidal, I just don't want to take part in anything in life. Any appointment, commitment, phone call, email... it's too demanding. Wants too much of me. I can feel a pool of anger and resentment somewhere in me, and if that's the only emotion my body will give me then I really need to stay away from people.

I'm going to a gynecologist because I can't stop bleeding in heavy amounts. It's been 2 months of bleeding almost every day. I tried some herbs from my acupuncturist to stop the bleeding. One of them did reduce the bleeding without side effects. The other seemed to stop the bleeding for a few days, but gave me such low blood pressure that I spent the whole day trying to keep my head upside down to manage the headache and painful blurry vision. I know I'm very blood deficient. She gave me herbs to boil and drink to improve my blood, but I haven't yet because of Easter taking over and then getting Norovirus. But seriously, puking my stomach and flushing my guts out when I'm already blood deficient? Why does my body choose to live through these things? Why does it hold on to life? And why don't doctors see that I'm suffering so severely that I'm not able to actually live any sort of life? It's mind blowing. My ND sees it. My acupuncturist sees it. My chiropractor doesn't question it. The neurologist I saw seemed to believe me, but he's so far away and I think he did what he can do within his specialty.

Trying to eat is a major problem. My stomach and gut are so sensitive that I have to figure out exactly the right thing to feed them, and then when I do I can only manage a couple of bites before I get pain and feeling overly full. Yesterday eating a baked sweet potato with just olive oil and salt worked. Today sweet potato is cramping my stomach. Chicken broth the super soft canned chicken is working consistently, but only until my stomach can't take more liquid. It's being just as picky about water. I feel dehydrated, but water feels like a bowling ball in my stomach. Last night I wasn't able to eat for 5 hours before it was bedtime. I knew I'd get pain from hunger if I didn't eat, so I tried to eat some very soft non-greasy sausage. I managed about 3 bites before I got major pain in my stomach. My gut was so inflamed it was giving me a horrid headache. I had to just go to sleep and sleep it off. Enzymes are helping to a certain point. I know that if I could turn my digestive system back on that I might actually be able to get some energy again... I feel like I'm gaining a tiny bit back everyday, but it's not enough. I wouldn't be able to type this right now if not for the green tea I've been sipping on all morning and the tiny bit of energy I'm getting back each day.

I'm going to attempt to go to work today for 3 hours. I'm lucky that I was only scheduled for a 3 hour shift today before I knew this was going to happen. I've missed 3 or 4 shifts already, so I need to try.

Fight or Flight... I'm Taking the Flight

My stress level is up to there *points to roof of house.* I can't talk about it, I'm overwhelmed. Fight or flight is telling me to just run far far away and never look back. Short version: I'm in the process of trying to find a lawyer to take my disability case, but this is very difficult with chronic fatigue when all my energy is going to my part time job and looking for doctors.

So I want to write about some various musings I've been having to get them off my mind. I view this like trying to take flight in the "fight or flight" situation, but I can't fly when I have all these obstacles in the way that I need to clear out of my flight path. How do I have the energy to do this? Well I woke up this morning with itching, small hives, feeling highly fidgety, lots of anxiety, and muscle aches. I tried to calm my body down with calming stuff... didn't work. So I drank a cup of black tea. That worked! I'm much more calm, almost sleepy, but my brain is awake with unfocused random thoughts that I can't seem to focus in on. This is not the kind of energy I need to accomplish anything. I'm too irritated and scattered to get work done. And this isn't real energy, it's adrenaline. This is a therapy post. This post is what anxiety looks like in my brain.

1. Politics

How do people have the energy to be angry about politics all the time? What if people channeled that gift of energy into action that actually helps people? Instead of getting upset with people you'll never meet in person, why not make the world a better place for those around you? I know this doesn't sound like me - I've always been one to pay attention, have an opinion, and be idealistic. I know this sounds like I'm over simplifying.  I've always been annoyed with people who make statements like the one I'm making now. I think that's what exhaustion does to a person like me - helps them simplify stressful situations down to what's most important. And what's most important? Stop alienating people around you with your anger about politics, and start listening to what people around you need to make their world a better place. Help one person at a time get what they need to be a good person for our society.


2. Violence

Since when has the world ever been a peaceful place? What is different about our world now that we should expect it to be a peaceful place? Did the Roman Empire have violent video games? Did the Crusaders watch violent movies? Did the Vikings have assault rifles? So why do we blame video games, movies, books, sports, and other violent entertainment on creating violent people? Is violence only a learned behavior? What are we doing to help people not want to be violent?


3. Negativity vs Positivity

Why is this even an argument? Negativity is not inherently a bad thing. Positivity is not inherently a good thing. Too much of either is just living in denial. Feeling and thinking negativity in some cases can be a healthy way to protect ourselves from things we don't need in our lives. I'm negative about toxins, poor finances, low quality food, video games getting released before they're finished, books I love getting turned into bad movies, too much snow... what's wrong with feeling negatively about these things? No, they shouldn't be my main focus, but I'm allowed to feel negatively about them. For instance, if I say, "I'll never be athletic enough to be a Ninja Warrior, but I know I can achieve this job promotion!" then the positivity I tagged onto the end doesn't actually change the negativity in the first part of the statement. What's wrong with feeling the disappointment that I'll never be a Ninja Warrior? What's wrong with letting myself focus on the grief of letting go of my dream of being a Ninja Warrior? Distracting myself with the positivity about the job promotion doesn't allow me to process what I need to feel about never becoming a Ninja Warrior. Once I process those feelings I can focus on the positive feelings of the job promotion without feeling like it's not what I really want for myself. Negativity does have a place, and it's not always bad. If someone is stuck on a negative thought, don't automatically shoot it down and assume they're a negative person. Maybe help them process that negativity? Listen to them. They might have a legit point about something that needs solving, and if it can't be solved, they might need help processing that grief. And don't just focus on the positive - that's really annoying and can amply negativity. It's repulsive. When I'm feeling negatively about something I don't want people telling me positive things to focus on because I don't want the distraction - replacing with positive thoughts doesn't solve the negativity. I want to work out my negative feelings so I can grow and move on. It only is a problem if I'm only ever negative. If I'm never feeling positive, that's dangerous and unhealthy... but it would mean I need therapy, not positive thoughts to distract me from working out the negativity.

I know that positivity does greatly affect our mood, our thinking, and our energy levels. It's best to work out the negativity so we can let the positive guide us instead. I don't need to write about why positivity is a wonderful thing. We see words of affirmation, acts of service and support, and people trying to bring positivity into the world everywhere we go. It's beautiful and I'm grateful for the positivity. I need to write about why negativity is not always a bad thing, because I'm getting sick and tired of all the negativity shaming.


4. Friends

I don't think I can express this enough. Just because I don't have the energy to invest in you doesn't mean I don't care about you. I've had to take a major step back from Facebook, especially Facebook Messenger. I've met so many people who want to connect with me since we have similar health experiences. I understand - I want the connection too. I want to know I'm not alone. The problem is, I'm burned out. I know I'm not alone the point that the chronic health issue epidemic is overwhelming me. I care deeply about every person I meet who suffers with a chronic illness. I really do. This epidemic has become my life passion. But I can't be friends with everyone. I don't have the energy, and when I do try to keep up with my friends I get so drained so quickly that I have to walk away. It isn't that my friends are needy. It's just that they're people. People take energy. I don't have energy. I feel badly about all the friend requests that go unaccepted and all the messages that go unanswered. It isn't my desire to ignore people - I really would rather not come across like I'm ignoring anyone. It's not you. It's me. I don't have the energy.

I've found a social outlet that's surprisingly very helpful: Final Fantasy XV A New Empire. It's a mobile war game. It's not even a good game. In fact, it's often a pretty lousy game. But I've been very surprised by the guild I joined. I've been playing it for about a year, and we've grown so close that we call each other a family. My guild is full of amazing people from all over the world and we have so much fun just being a family. I can play the game when I want to, and I can avoid it when I want to. I can choose to be social if I want to, or I can just work on building my empire as I want to. There's no pressure. It's only ever fun. I can be myself without ever talking about my problem. There is no reason to talk about my life problems in the game - it's a place I can go to leave all my problems behind, with people who are tons of fun and very caring. The game doesn't take a lot of effort or energy to play. It's all in real time, so there are deadlines and timing issues if I choose to engage in them. But I can play as passively and as slowly as I want to, and I don't have to participate in anything I don't want to. It helps me feel a lot of accomplishments too.


5. Let Me Be Me

I'm a woman. I'm passionate about certain video games, manga and comics, TV series, and other nerdy entertainment. I'm passionate about health through nutrition and lifestyle. I'm passionate about social economic issues, such as choosing to buy products made by people who are fairly and humanly employed. I'm passionate about learning about who other people are and how other cultures work. I'm passionate about my faith in God and how my religion serves God.

I don't care if you don't like me. I wasn't born to be liked by everyone. But don't tell me I'm wrong to be who I am. I'm not a useless leech of a person because I play video games. I'm not immature because of my taste in entertainment. I'm not an unrelatable person or a party pooper because I take charge of my medical needs and take my health very seriously. I'm not a judgmental negative hypocrite because I try to live in modern society while making the most humane choices on what I buy. I'm not out of touch or a freak because of my faith in God. I'm not a fake person because I love learning about the world when I can't afford to travel.

What this thought boils down to is this: I'm tired of the positivity pushers criticizing me and my friends for not living up to their idealistic opinions on how people should be. I'm getting annoyed by the people who think they know what is best for others telling me my habits are not habits of good useful people.

Actual things people have said to me:

"Video games waste your time. Try meditating instead if you're looking to feel good about yourself through something else."

No. Video games and meditation do not serve the same purpose, and video games have tons of mental and emotional benefits. There's nothing wrong with enjoying myself in my free time. Is it worse than going out partying, drinking, doing drugs, joining a gang..? Maybe I'd play more board games if I knew people who enjoyed them - are board games a problem? And who says I don't meditate and pray?

"Why do you read children's comics? Try a biography to help you learn more about the world."

I'm reading children's comics? Do you even know anything about manga and graphic novels? I'm pretty sure this story about arranged marriage in nomadic times in Turkey wouldn't interest children, but okay. And maybe I need my fantasy because I need a break from the world? Who are you to judge how I entertain myself?

"If you don't change your views on abortion we can't be friends."

Okay bye. I guess all the other things we had in common and all the fun times we shared mean nothing because I value life, families, sexual morality, and the innocent. That's not my problem. Don't like my views? Don't talk about abortion with me. Problem solved. My other friends handle this really well, why can't you?
"You didn't go to that psychic fair I told you about. Don't you want to get better?"

I don't want to pay money to get "help"  from a "psychic." How does that show that I don't want to heal? If I'm wrong not to go, don't judge me for being skeptical. Educate me. Don't have the energy or knowledge to educate me? Then accept my choice.
"You don't love God enough. He will heal you if you love Him more!"

Okay... but God made us with the ability to learn how to heal each other. Doesn't He work through doctors, scientists, herbalists, farmers, and other people who look after our health? Maybe It's actually God's will that I experience all these health issues so that I can help other people ? Have a little faith in my faith! Sheesh. Faith is not an emotion. Faith is something we do through the struggles in life. Faith isn't about getting what you want from God, as if He's your sugar daddy.
"Your diet is wrong, all that meat will make your body acidic and make you worse, and you really need to take this supplement even though your doctor told you not to."

Want to see my labs from before this diet and compare them to my labs now? It's working for me. Doesn't mean it will work for you. And that supplement gave me neuropathy, so.... why don't you just shut up? I'd be open to hearing about how it worked for you, but no, you're just telling me what to do without getting to know me.




...I think I've typed out enough of my cluttered thoughts now. Now they're out of my head. :)