December 2017 Doctor Vists and Tests Part 1

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

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

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

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

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

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

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

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

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

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

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

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


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


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


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

U2

On chronic illness support groups a common topic is music that helps people get through the difficulty with the illness. One of the most frequently mentioned artists for this is Lady Gaga. For me? I think it's obvious to anyone who knows me: U2.

It's Christmas Eve. I'm exhausted, just relaxing while the roast is baking. I'm listening to U2's new album, "Songs of Experience." As the song "Landlady" came on I had an epiphany. I was thinking through how many years U2's music has helped me stay strong, find reasons to be happy, learn to love myself better, and appreciate the people in my life. I started to wonder what it specifically that has touched me the most about their music. As Bono sang in "Landlady" about how much he truly respects and appreciates all his wife has done for him, it struck me. I love U2 so much because I'm very attracted to people who deeply love. Thinking through all my favorite people in my life, they've all been people who have a deep passion for something that makes people better. They have a true love and respect for humanity, and while they recognize and admit to the darkness and cruelty in people and this world, they still have this rich passion of loving people. I can't connect with people who don't recognize the darkness and despair in life and push it away. I connect with people who know the darkness like a close sibling, but always point to the light. That's my husband. That's my best friends. That's my parents. That's my heroes, some of whom I have met and some of whom I have not. That's U2, not just specifically Bono. But Bono is my greatest hero in the world today. U2's music is full of passion and love - they want nothing more than to make the world a better place. And they do. They make my world a better place so that I can make other's worlds better places.

What U2's music does for me is helps me not focus on my problems as a negative working against me, but instead their music helps me find my place in the world despite my problems and the world's problems. Yes, their music is very political. It's very personal. They very rarely write songs about romantic love. They can't write a simple fun tune, all their songs are heavy ("Lemon" might be the ONE song that isn't heavy, ha!) That's a turn off to many people, and I understand that. Many people think Bono's incredibly arrogant and claim to hate him because of it, but I don't think they're actually listening to him. But to me, music that doesn't have anything to say is boring. I'd rather have an arrogant insecure Irish man tell me how beautiful American's political system is than  have most Americans telling me how it's ruining our freedoms and liberties. I'm sick of American's views on America. Most pop music bores me to tears. U2's songs have so much to say that they always keep me pondering the meaning of my life in this world, and I thank them for keeping me focused on my purpose in this crazy world. Political or not, they keep me focused on love through this crazy mess of a world.

As "Landlady" came on, I was brought to tears by listening to how much Bono loves his wife. I have so much respect for Bono and Ali. They've only ever been married to each other, never any divorce. They show the world what marriage is all about. "I would win and call it losing if the prize is not for you."

My chronic illnesses can't take over my life and get me down when I have U2 singing about love and passion for all that is right and just in this world. My life isn't about me. I have value, no matter how much I'm hurting and held back. I have a place, no matter how broken and distant I'm feeling. I have a purpose, no matter how empty and drained I am. Their messages cut through my depression and anger and remind me who I am, who I was made to be, and how I can always keep growing despite my situation. I'm not defined by what I can't do, but by what I can. My health isn't my enemy. It isn't what's to blame for me not being the best version of myself.

So to Bono, Edge, Larry, and Adam: Thank you! 

Sugar = Depression

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

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

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

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

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

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

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

I'll write about everything else later.

Vent About My Pain and Breathing Troubles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Upcoming Medical Appointments and Symptom List

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

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

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

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

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

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

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

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




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

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

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

- Heart palpitations, especially when laying down.

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

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

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

- Vertigo that comes and goes.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

- Slurring my speech and/ or stuttering.

- Joint pain that comes and goes

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

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

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

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

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

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

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

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

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

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

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


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


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

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

And it's oh so stressful.

To the Skeptics Who Want Me Off My Supplements...

It's amazing how quickly the mental and brain symptoms come back when I don't take my supplements. I've only been taking my supplements on days I work so that I can manage my job, but I'm trying to keep off of them as much as possible so I'm prepared for doctor visits (whenever they finish reviewing my referral.) This is only the second day without taking my pills, and the negativity is strong within me. Anger, doubt, depression, apathy, dismissiveness, hopelessness... that dark grey cloud is moving back in.

It makes it so hard to think clearly about my situation or make plans. Right now I just want to quit everything and throw my hands up in the air, giving up. Giving in. But I know if I used my progesterone, took my lithium, and drank my inositol powder that I'd have a different attitude on the matter. That it would be worth continuing to fight.

And the brain fog! Did I just go to the bathroom? I'm not sure. Do I feel like I need to go? I thought I did need to earlier... so maybe I did go? Yes, these are the thoughts I have about many parts of life.

Cravings for carbs and sugars are coming back in a big way too. I'm not as stable with my diet. I'm not supposed to have any starches and I know it's true because I don't feel well after I eat them. But I'm craving starches now. Some need in my body has been met by something in one of my supplements, just not sure what that need is.

I hate this limbo. I really need my appointments to get scheduled so that I can have less anxiety about not taking my supplements. I'm also kind of irritated that they work this well, because it means I'll still have to take them all for a while longer. I'm getting pill fatigue. Why is my body refusing to heal more than it has? I'm investing so much into regaining my health, but my body is saying, "Nope." Ugh.

I'm getting very impatient about finding out what I need to do to continue improving or coming to accept that I can't get better. That this is the best I'll be. I'm getting annoyed by having hope and perseverance. I just want a final answer.

What A Night of Sleep Looks Like During MCS Reaction

I'm not keeping up with this blog, so long story short, I've been using an Oura Ring since August. I want to give some detailed attention to this at some point, but I can't right now. Way too exhausted. In short, it is a highly advanced sleep tracker that has generally received good ratings as far as accuracy goes, but I'll dig into that topic later. It's not like a Fit Bit or other trackers - it uses different technology and can read a lot more. 

I want to show you what a night after a chemical exposure looks like for me. I came home from work feeling angry, fidgety, uncomfortable, and wanting to beat something up and smash it to pieces. I'm not totally sure what I was reacting to - normally I know right away if something is causing me reactivity, then will get a the worst reaction later on (delayed.) The fact that I was off my pills for 1.5 weeks and had only taken bare minimum to get by at work in the past 4 days has meant more reactions and reacting to lower exposures. Regardless, I was definitely reacting and was very uncomfortable. I went to bed with a resting heart rate jumping constantly between 95-120 while just laying still in bed.


https://drive.google.com/file/d/1olRRgWgc-rXaF2KlDJ6Zi238W9sXiQ-zeA/view?usp=sharing

You will need to click the link below the photo to see it full size to be able to read it. Blogger has some serious formatting limitations and will not allow me to turn the image into a link unless I feel like coding it in HTML, but their HTML is one wall of text, not formatted so that I can easily find where to edit. I'm feeling way too lazy to deal with that.

First problem: 4 hours of REM sleep!? I've read that high REM can mean high stress levels on the body. More than 2 hours tends to be high, from what I've read. I'll link to the articles when I have the energy.

Second problem: Heart rate. Okay, my resting heart rate tends to be high anyway (and I'm getting officially tested for POTS soon, but a few medical practitioners have told me they've seen it when reading my pulse), but this is a bit absurd. During the first two weeks of my menstrual cycle my lowest heart rate of the night tends to be in the upper 60's to low 70's, with average in the 70's, sometimes low 80's. My lowest last night was 86 BPM. Average was 95 BPM. Highest was just below 110 (I wish it would give an exact number.) My body managed to lower my resting heart rate during sleep, but it still stayed too high. And I took pills that should calm my heart rate down - I did need herbs to fall asleep last night.

Third problem: My heart rate variability is super LOW. The higher the number, the better off you are. In my Oura Ring user group many people are reporting that they are generally in the 70's - 90's for average HRV. I have never been above 30 for as long as I've been recording, but 11!? My body was clearly very stressed.

The ring also showed me that my average respiration rate was 18.0, which is high, but I'm usually that high. And it told me that my body temp dropped half a degree Celsius last night, but my body temp is different every night. My temp is up and down and all over the place.


To compare, here's a couple more average nights when I wasn't feeling abnormally terrible:


https://drive.google.com/file/d/1H1-ljVIHp1_0d0Ay58z0qUjQkC8yI5LIcA/view?usp=sharing

https://drive.google.com/file/d/1KChhS7TcjuJ5GWrrGPXEU8rTp4xMiCgX4w/view?usp=sharing

Something to keep in mind with REM: it's not restful. It's called Rapid Eye Movement because the body is working to repair and reset during that time. The more you need, the more your body is trying to repair. That's how it was explained to me. So when I have these nights with high REM, even though I got 9 hours of sleep, it was not restful sleep. If I can at least get and hour of deep sleep I do okay, regardless of REM. So I'm exhausted. I couldn't bring myself out of bed until 11 am. I just wanted to lay there. But eventually I started to shiver and I realized I needed food really badly, so I forced myself up.

Beef Bacon is amazing, by the way. I'm sick of turkey bacon (had it too often), and I can't have pork. I actually hate pork, so I don't mind not being able to have it. But a local grass-fed (mostly) beef company makes beef bacon with just beef and sea salt. It's amazing. So incredibly delicious. 

Power of Doing Your Face

I just went through a rather long and particularly symptomatic PMS. Normally at this time I start to feel a ton of relief from all that, but I didn't take my pills for 1.5 weeks and I'm only taking the bare minimum to get by for the last 3 days. My face has become a total disaster through this. Very dry acne ridden skin with mild rashes, and total lack of color. It's still that way, even though it should be recovering well by this point, but I'm still just as dehydrated and exhausted from my lack of pills.

Want to see a cool trick?



I painted concealer on one eye and not the other, can you tell which one?

My camera doesn't do the best job with capturing details, so I look better here than the mirror showed me. But you can see what I'm talking about.

That's the power of make up. I do this every time I need to go out so that people treat me normally. I don't want people to think, "Oh, she's not looking her best." or "Is she on something?" I've learned that people treat you with less esteem when you look like you're not feeling well. They can treat you like you need extra care, that you're not as high functioning as other "normal" people, or like you're someone who does drugs and they show less trust in you. I've experienced it. When I wear my make up people treat me normally, like they don't need to treat me any differently from the next high functioning person. I'm not accusing everyone of doing this, but many do.

So I wear make up. I did it quickly without much detail work, put on a thin layer, skipped the lip products so I could eat, and used copper eye shadow to blend in the redness if it starts to show through:



Just think about how you treat people based on how well they took care of their face that day. Thanks. :)

Video Update/ Disability Process

I have needed to talk about or write about a lot that I've experienced in the last few months, but have been so incredibly fatigued. So today I decided to do video blogging. I made a playlist of 3 videos here:

Kindling Health Vlog Playlist: http://www.youtube.com/playlist?list=PLMMJaf2l9ztXEgTmt_IBt2NwWC0ZmFN8m

I personally don't like to watch blogs, I greatly prefer reading. If you don't like this format, I understand. Sorry. But for my mental health I needed to journal somehow.

Don't Tell Me, "Just Exercise!"

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

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

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

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

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

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

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

Blood Pressure During Reactions

I get blood pressure problems in waves. I go a few weeks where it's good enough, then I go for a few weeks when it's problematic. Often it's just too low. 90/55 with a resting heart rate of 85 is pretty common for me. I always have a high heart rate. I have not seen it below 72 in the 2 years I've owned my blood pressure machine.

But a problem I'm seeing after exposure, in which I'm reacting, is that my systolic goes up while my diastolic goes down. Today I was downstairs, where a family member lives (so I don't spend much time there), helping my husband do some house repair. I spent some time vacuuming cobwebs and dust too. Fatigue and weakness increased quickly, but it took an hour or so before I got histamine issues. I used my neti pot and black gunk came out of my nose. I couldn't stop coughing for a while. Then came the vertigo and gut pain in the evening. I was so fatigued I couldn't follow what was happening in the TV show we were watching. I took my blood pressure at that point. Earlier in the day it was 93/58 then 98/60 (I took solid licorice extract). This last reading was 108/53. I see this happening whenever I'm reacting. Systolic goes up, diastolic goes down.

Apparently when this happens the body find a way to compensate. It restricts blood vessels and focuses blood on the brain. Apparently people can go years without being aware of blood pressure problems that are causing heart strain because of the body's ways of compensating. But what happens when those compensations fail? Heart failure. The heart can't keep up anymore. What happens when a person like me doesn't have a body that restricts blood flow by narrowing blood vessels? I get super fatigued and dizzy and have to lay down for however long it takes to improve.

http://www.deseretnews.com/article/700185266/Low-diastolic-high-systolic-blood-pressure-a-dangerous-combination.html

In all my research I can't find anything that will raise blood pressure at nighttime without raising cortisol too. Licorice raises cortisol. My nighttime cortisol is high, making it hard to sleep.

So tonight I'm laying here feeling a bit naceous and wondering what the gut cramping is trying to tell me, also feeling too fatigued to sleep. Fatigue and tiredness are not the same thing. I wish I felt more tired.

Tomorrow is another day, a day when my doctor will be in his clinic and I can talk to him.

Menstrual Details and Vent

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tachycardia is so Pleasant (sarcasm)

Oh how I so enjoy the tachycardia. :P

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

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

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

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

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

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

Current Favorite Products

I've been updating this post as I think of things to add to it, and I may continue to update it. These are my current favorite products!

Lauren Brooke Cosmetiques

The whole entire brand. I've written about natural and organic make up before, including Lauren Brooke lip colors (I never finished that post because... fatigue and sickness making me not look camera ready), Mineral Fusion, and MyChelle. MyChelle no longer makes make up. I don't understand why, because they had this awesome foundation cream stick that I loved, but the company decided to focus on skin care instead of cosmetics. Such a disappointment. I switched to Mineral Fusion pressed powder foundation. I like it a lot, but I find it's a bit dry and I broke out to their liquid foundation. I learned that Mineral Fusion is not 100% trustworthy and only some of their products are safe, but the safe products are excellent and I highly recommend. I decided to finally try Lauren Brooke's pressed powder. I'm never going back. It's the bomb! It's not drying, applies really smoothly and evenly, and has this radiance to it that Mineral Fusion didn't give me. I don't feel it on my skin. It looks so natural and feels so natural, but covers the perfect amount and warms up my skin tone nicely. It also neutralizes my undereye bags without concealer! It doesn't hide them like concealer, but it masks the purple color so it looks like I'm not wearing make up or trying to hide them.

I just purchased two new items from them (as in minutes ago, have not arrived yet.) One is their lash conditioner. They sent me a sample of it last time I ordered. I never really thought I wanted a lash conditioner until I tried it, but the sample of it convinced me. It helped tone down my itching and my lashes did act stronger - as in, not falling out at the normal rate. What I would actually like from regular use of it is to regrow lashes. I have a "bald patch" in my lashes that drives me nuts. This conditioner has horsetail in it, and from my understanding, horsetail is the only herb known to create new hair growth (as opposed to helping the hair you already have grow more.)

The other new item I just bought is their creme concealer. I have an issue with eye shadows creasing on me - all brands, doesn't seem to matter if it's powder or liquid. Reviewers said this concealer mixes really well with eye shadow and prevents the creasing. I'm going to test this out and see if it's true! As it is, I tend to wear very light amounts of eye shadow so that when it ends up creasing it's not as obvious. I want to be able to rock a normal layer of eye shadow for hours!

I'm wearing Lauren Brooke Cool 20 Pressed Powder Foundation in this photo (along with Honeybee Garden eye liner, and Mineral Fusion mascara and blush.) I took this on a day when I was feeling badly and tried to get ready for work, so I did my make up, but wasn't strong enough to actually work. I never expected to use the photo, lol, but you can see how it makes my skin look natural with a glow. My chest skin was more pale than normal. I love it!






Biokleen Laundry Powder and Oxygen Bleach Plus

This has been a miracle worker for me! I use the Premium Plus one because it doesn't have corn products in it like the Fragrance Free one does (I'm allergic to corn.) I can use the Fragrance Free liquid from them, but I prefer this powder. It has Zeolite and hydrogen peroxide in it, both of which are excellent ingredients for KILLING perfumes and other fragrances. I might have to wash 2-3 times to get rid of badly contaminated clothing, but the majority of the time one wash is enough to completely remove any trace amounts of fragrances that stick to my clothes. It's awesome!!! It also cleans really well and keeps whites very white. This is the lowest effort most effective laundry product I've ever used.

The oxygen bleach is on the same page I link to. It's like Oxyclean, only with trustworthy ingredients. I use this in toilet tanks and to soak my bath tub with. The toilets have less grime and my tub that is stained a bit brown from using Redmond's Bath Salt Plus turned white. With no scrubbing. :D


This handmade turtle from a Fair Trade store in Minneapolis
...that was on clearance for $4 and I finally found a small succulent for.





Sierra Trading Post

Their website. It's part of the TJMaxx chain of stores, but is for outdoor and recreation enthusiasts. They sell a good variety of organic clothing and eco products. It may not be GOTS certified sweatshop free organic clothing, which is my preference, but I only work 12-16 hours a week. I can't afford my standard unless it's on clearance. I have a small variety of GOTS certified sweat shop clothing in my closet, but it was all purchased on good sales. When I need some article of clothing and I can't find what I need on sale elsewhere, going simply for organic cotton from Sierra Trading Post is amazingly helpful. It's all liquidation, so their selection is constantly changing, but their prices are fantastic. I've bought both organic clothing (brands like Prana, Patagonia, United By Blue, and Adventura) and natural leather with rubber shoes from them at huge savings. I can't rely on them to have what I need, but I've scored great deals from them. And it's excellent for men too! The focus on organic clothing is on women, but they actually have a good variety for men!

The only problem? Their return policy. You'll have to pay to return, which can make returns not worth it on some items. But their prices and discounts make up for it. Just make friends who will buy items that don't fit you.

Choice Mental Focus Tea and Choice Vanilla Roobios Tea

I drink a ton of tea. I can only drink water and tea, no juices or coffee or sodas. I'm limited in which teas I can drink due to medicinal properties of some teas and herbs, but thankfully both of these work for me. I use caffeine sparingly and I plan out when to drink it. I'm sensitive to it, so I have to be careful. Both of these are caffeine free, but work great in the day time! The Mental Focus tea is awesome when I'm wanting to lift brain fog without using caffeine. It really does help! The Vanilla Roobios tea just has this silky smooth dark flavor, and I love dark green and black tea. It's my caffeine-free dark flavor replacement. Sooooooo good!



GoWise USA Blood Pressure Monitor

I have blood pressure issues. I haven't written much about it yet, but I appear to have POTS (doctor tested). POTS is a heart rate issue, but in my case it's a blood pressure issue too. I'll get into this someday when I'm ready to write about the things stressing me out again, lol. Anyway, I bought this last year to monitor myself so I could learn when I was fighting low blood pressure instead of having another issue, like hypoglycemia. It has been really insightful. This monitor uses an arm cuff, which is much more accurate than the write monitors. It's not perfect because it's a machine, which uses averages to calculate. My doctor measures my blood pressure manually and spends a lot more time measuring it to be accurate and see how it fluctuates. This machine won't show fluctuations. But for an at home tool it actually is accurate enough to be helpful. I didn't get excited about it last year because it didn't ever seem to be accurate, but it was my fault. I was measuring incorrectly. I fixed my posture and arm position, which made all the difference in the world!

It does measure heart rate too. I think a normal person could trust the heart rate reading on it, but it doesn't read long enough for someone like me. My heart rate jumps all over the place within seconds. I think it give me an average, like Fitbit does (I'll get into why Fitbit is the wrong tool for people with POTS later.) But what it does tell me is when my resting heart rate is simply too high. Mine is often in the 80's, sometimes in the 90's. That's really not good.






This Shark Vacuum

Vacuuming has always been an issue for me. I get allergy issues if I don't vacuum, but I get allergy issues if I do. It's because the vacuum we had before just kicked up dust and only collected part of it. My husband came to me and said he wanted to get me a better vacuum, but didn't want to get it for me for a holiday or birthday because he didn't want to imply that I'm just an objectified house maid. lol! So he got it for us "for Memorial Day." Ha! He was teasing, because I'm not sensitive about such things, but I enjoyed the laugh.

Anyway, this vacuum sucks! It actually sucks hard without kicking dust up into the air! It has 2 more amps (power) than the last vacuum, and it has a HEPA filter built in to prevent any dust from leaving through the exhaust. It's not only collecting a lot more from our carpet, it's allowing me to vacuum as much as I want without even needing to wear my face mask! All the other features are wonderful on it too, but the fact alone that the suction is powerful and it has a HEPA filter is enough to make me fall in love with it. If you need an allergy friendly vacuum, I highly recommend this one!



This was after a quick vacuum around the upstairs to try out the new vacuum. I had just vacuumed the week prior with the old vacuum. Clearly the old vacuum wasn't picking up very much...



Om Pure Air mask

I've been using Vog Mask, but suddenly I couldn't find their organic cotton version anywhere for sale. My old 2 from them are too worn out and they're not refreshing in the sun. It's hard to breathe through them. So I was forced to find an alternative to buy. I bought this mask, and despite it taking 4 weeks to ship to me, I actually like it better than Vog Mask. It's easier to breathe through it, it fits my face better and seals better, and it's more effective. I think they have a better carbon filter than Vog Mask uses. I'll want to write a full review on this later, so stay tuned for that.





Hemp Organic Life Etsy store

This shop is awesome. All the products are made from organic hemp and linen, and they are high quality. I bought an organic hemp sleeping bag from her to use when I need to travel and sleep in beds that aren't my safe organic latex bed. I bought it as a barrier between me and the bed so I wouldn't have skin contact, at the very least, with the flame retardants, polyester, and other synthetics. I'll review this sleeping bag after traveling with it later this summer, so stay tuned for that, but snuggling with it at home is wonderful! It breathes so well, but also traps in enough body heat to keep me comfortable. The fabric is strong. It's mildly scratchy the same way wool is, but it's softening up with washing. I actually really like that slightly rough texture, I think it feels good on my skin. Anyway, she did a fantastic job with this sleeping bag. She's from the Ukraine, so shipping almost made me cry, but it was so incredibly worth it! You can see how comfortable it is:



She also sent me a free gift of these linen socks, which are so perfect. They're very breathable, but keep me warm. They feel cozy on my skin. These are the best free gift I've received with an order!






Redmond's new Tooth Powder in Black Licorice

So... normally I'm an advocate of making your own toothpaste from scratch in order to save money and save plastic. It's really easy to make with bentonite clay and charcoal. But in this case, Redmond made theirs better than the DIY version. How, you ask? By making it very powdery. It's so much finer than any toothpowder I've made from scratch, and therefore it feels so much softer on the teeth. It brushes better and is much easier to rinse out of my mouth. But the best part? The black licorice flavor. It's awesome. It's so good. I accidently bought the peppermint version and I don't care for the flavor of it.

Also, for those of you who really don't want to do DIY, this is a great option, even though it's in plastic, because the tooth powder lasts about 3x longer than their Earthpaste in the tubes.



Avocado Oil Spray

I'm not sure I have to justify why this is a favorite thing of mine. It's a super healthy fat in spray form without aerosol. I just spray it on salads and it's perfectly evenly distributed on the leafs. I spray it on chicken before it goes on the grill and it means I don't have to massage the chicken with oily hands to get a nice thin coating of oil on it.



Badger Face Oil Set:

Organic oils in a glass pump bottle - they're perfect! I don't react to any of the sets except the Argan oil one, which has orange essential oil in it. I don't do well with citrus oils. They're so gentle, take off make up way better than just coconut oil, and moisturize very well. I wear the face oil under my make up and it doesn't leave me greasy whatsoever. I can't say enough good about this set! My skin looks much more supple with regular use.



Vitamin C and Glutathione IVs (and my Mom.)

I had two of these on my last trip to see my doctor. They made me really nauseous and gave me some nasty headaches. I wanted to throw up, but was made very thirsty from them at the same time. I felt like a trillion micro explosions were happening in my body all at once. Why do I like them so much, then? Because they seriously help a lot after my body calms down from receiving the IV. Better energy, better mood, much less severe reactions to things, better digestion, clearer head and clearer thinking, less overall body pain... they're helpful! But the effect doesn't last long enough. I need to have them done regularly.



Dr. Bronner's Baby Mild Soap

This soap is fragrance free, doesn't dry out my skin, is organic and doesn't irritate my skin, and is very travel friendly. I accidently left my container of it in the bathroom where my Chiropractor and Acupuncturist are. As you can see that building stocks heavily scented soaps - it's hard for me to use their bathroom and I need to slip on my mask to go in there (it's a shared building and they don't choose the soap.) My container was mostly full when I left it there, and exactly a week later it was only a quarter full. People were choosing my fragrance free soap over the fake scented cancer causing soap! That gave me a lot of hope for humanity, lol.

I buy the large 32 oz container of it and keep refilling this little one. I keep this small container in my purse so that I have safe soap with me in public.






Wokamon App

I got myself the cheap Fitbit Flex 2 because AT&T was having a special on them. I wish I had researched fitness trackers before impulsively getting it. At the time I didn't think I wanted to spend more for a heart rate monitor, and I was wasn't wrong to think that since Fitbit's heart rate monitoring isn't detailed enough for people with POTS, but some monitoring would be nice. It also doesn't have a GPS, so I can't map my walks with it. I was mostly interested in the sleep tracking feature, but as it turns out, it's not accurate. I think it's sleeping when I'm laying in bed with my eyes open wondering when I'll ever finally drift off to sleep.

But it's not all a disappointment! I know I can't challenge myself to do more exercise with it in my condition, but it's actually been helpful to see how much walking I do on a normal work day vs normal non-work day. I can see how active I really am when I tell my doctor how much exercise I think I'm getting.

The best part? Wokamon and Achievemint, two apps that are weirdly motivating.

Wokamon is the modern day smart phone Tomagachi, lol! You must take care of your monsters by leveling them up with steps from your fitness tracker. When it tells me I only need 156 more steps to level up, I actually want to get up and get those steps in, even when I'm feeling lazy and tired. I am too motivated by reward systems in video games. :) But hey, it's fun and it's working! I might only average 3,000 steps a day (so I can't compete), but my monsters are leveling up!

Achievemint pays you for using a fitness tracker. You can earn up to $10 a month for all the activity you do with your fitness tracker. It's going to end up being more like $10 every 6 months at the rate I earn points, but hey, I'll take the $10 when I finally earn it!




30% Grain White Vinegar

This stuff works amazingly for killing weeds. It burns weeds, but leaves the roots. After the weed shrivels up you'll have to spray again to burn the roots. The fact of the matter is that it's non-toxic and highly effective! That said, it does burn the skin. Cover your skin when applying!

It IS made from corn, but it's non-GMO corn. The company doesn't verify if the corn was sprayed with Round Up or not, but they do claim the corn is non-GMO and Round Up is mainly used on GMOs. It's also just the acid from the corn, so it doesn't seem to cause me allergic issues (I'm allergic to corn.) I'm not consuming it, just spraying it on weeds.


These reusable organic cotton produce bags

I've been using these for years now, but they're still one of my favorite things. They are fantastic for buying fresh produce with because they weigh nothing, they're breathable, and they keep produce fresh and clean. They wash very easily.

But I discovered a new use for them! They're perfect for washing bras in and other delicates in! Instead of a nylon mesh bag designed for bras, I just stick my bra in one of these, tie the top loosely, and throw it in the washer and dryer. My bras are coming out cleaner than when I used the nylon mesh bag, and I'm guessing the cotton allows more soap through. These bags make my life so much easier!


Alaffia Bubble Bath

This bubble bath is by far the best Alaffia product. It bubbles really well, the bubbles last a long time, it's effective soap, and it's great for washing hair with! I like to mix Starwick Botanical's Kelp powder, baking soda (to neutralize chlorine), and this bubble bath together. I'll wash my hair in the bathwater and soak in it for a while. Then I'll even shave my legs in the bathwater. The bubble bath stays soapy enough to keep my legs lubricated enough to shave with. I rinse in the shower after, of course. I don't particularly care for this brand's shampoo or conditioner (I loved them at first, then it started leaving residue in my hair that wouldn't wash out), but this bubble bath couldn't be better!


Mantra Sports Pilates Ring

I had to let this off gas for a while before I could use it - it's not safe right out of the box for MCS people like myself. But after it stopped being smelly I was able to play with it. The reason I like it is because it allows me to use my muscles even when I'm stuck in bed on my back. I just put it between my legs and squeeze. I put it between my ankles and lift it with my legs. I hold it in my hands and squeeze it and pull it apart. The simple resistance it offers helps me a lot when my muscles feel restless but I'm not feeling strong enough to stand up and walk around. There are probably other great similar products, but this is the one I chose and I really like it!



My acupressure mat - I still love this thing so much!!



....And more. I'm forgetting plenty of things I want to share with you, I'm sure of it, but I've been working on this post slowly all day. I'm done. :) I've leaving out obvious things I've already reviewed, such as my new organic latex bed, which I can't say enough good about! Seriously, your bed matters. A lot.