Covid Vaccine Side Effects....

I've been hesitant to say anything on social media about my choice to get the covid vaccines. I know many of you will not approve, so please don't start an argument with me. I spent a lot of time researching the benefits vs the risks, and I decided that the benefits outweigh the risks, especially due to my health situation. Covid has the potential to undo all the hard work I've done to manage my illnesses, and I'm not willing to throw away 8 years of intense work to have this level of stability (and I'm far from stable!) I determined that the vaccine is less likely to cause me long term harm than Covid itself, and it would completely idiotic to assume I won't catch covid eventually.

I would go into more detail on my research, but I don't have much energy at the moment. It all boiled down to UK studies showing that people with post-covid POTS were going into remission from the covid vaccine, and the rate of people developing POTS from Covid is substantially reduced in vaccinated people. The last thing I want is for Covid to worsen my POTS. The vaccine side effects are better than worsening my POTS. I also just don't handle viruses well. Ever since H1N1 I haven't been able to handle getting sick. I take really good care of myself and don't get sick easily anymore (I did as a child and teenager), but now when I do get sick it knocks me out twice as hard and twice as long as everyone else. Covid could be really dangerous for me. I've been avoiding people the best I could, but it wasn't possible anymore since fewer and fewer people take any covid precautions. 

But I do want to share a bit about my experience to contribute to the conversation. I was hesitant because I was nervous about how my body would react to the vaccines. Last year I had a tetanus shot that left me with side effects for 2 weeks! It was miserable! But my motivation to help end this pandemic (since not enough people are willing to get vaccines to help protect the most vulnerable) fueled me to research this covid vaccine and just do it. 

I got the Moderna because I have the most trust in their company.

My first shot gave me 3 days of side effects. It was not fun, but it wasn't as severe as I worried it would be. I tasted metal in my mouth, had a constant headache, lots of heartburn, my gut was in a lot of pain and caused some unpleasantness in the bathroom, my joints were swollen, I had occasional chills, a sore throat, and my toes were more purple and freezing cold than normal. The 4th day was better, so I went for a walk that ended up being more strenuous than I could handle, and left me with another couple days of malaise and fatigue. I wasn't ready for exercise and I paid hard for it. Then I started to return to my "normal," but all month I had a struggle with chest pain and heart burn. I kept taking so many pills to try and stop it and nothing was helping enough. I had to go home early from work a couple of times because the chest pain was so bad that I couldn't focus. I had about 1.5 weeks where the chest pain and heartburn subsided before getting my next shot.

Then I got my second shot 5 days ago.

Monday morning at 10 am I got the shot. It only took a few minutes for an elevated heart rate to start bothering me. It took about an hour for increased fatigue to settle in. By 5 pm that evening I was in pain. A LOT of pain. I don't just mean my arm. It was like a full blown fibromyalgia flare on steroids. 

Tuesday morning I woke up in tears. The pain was enough where I considered going to the hospital, and then it felt like I had the flu on top of it. Every muscle in my body was screaming, tense, and giving me sharp pains when moving. My calves were twitching and spasming. My circulation was much worse than normal and my toes were so purple and cold that I couldn't move them. My neck and head felt like they were imploding - like they were filling with gas that was trying to expand them. I couldn't touch my skin because it was tender and sensitive the way skin is with the flu. My fatigue was strong enough that it was really hard for me to get out of bed and take anything to help. I ended up collapsing when trying to stand up. It wasn't possible for me to stand in one spot. If I was on my feet I had to keep moving or I would faint. POTS made the vaccine worse, or the vaccine made the POTS worse? Don't know.

Wednesday was still very bad, but different. The body pain mostly moved up to my head and chest, but my joints still ached mildly. The chest pain began, the heart burn kicked in, and my headache was worse than ever. The sore throat begin. 

Thursday the pain reduced enough where I felt relief, but the chest pain continued. I could finally start using my arm mostly normally. The fatigue was still too much, so I couldn't accomplish much. The sore throat and headache were bothering me a lot. I was still icy cold. 

Friday, yesterday, was the best I had felt all weak, but a new problem occurred: diarrhea. I don't just mean a little. It was dangerous to be away from the toilet. My body was in purge mode. It lasted the entire day up until bed time. I had to go grocery shopping, and it was the scariest grocery shopping experience since all I was thinking was that at any moment I could have to drop everything and run to the bathroom. My fatigue couldn't improve much under this situation. My chest pain reduced a little bit. The sore throat and headache reduced too, but still came and went. I noted how incredibly pale I looked. I was just out in the sun for most of last week, so I have a decent tan. My face was sheer. 

Today, Saturday: My head is still going in and out of a mild headache. I don't get headaches often, so this is not normal for me. My stomach and gut still give me occasional sharp pains and gurgles, but I returned to solid. My fatigue is still stronger than my normal, but I had a cup of green tea to help me get something done today... which is writing thig blog, apparently. I still feel like it's too much effort to get out of my chair, but my mind is working better than it has all week. I feel like I might be in the stage where I'm past the vaccine side effects, but my body has to recover from being so sick. 


If any of you understand how to read sleep data, then here are my Oura Ring results from Monday night into Tuesday morning:

  

For reference, here was Sunday night into Monday morning:

Sleep Study

Last night I went to the hospital and stayed the night for sleep study. It's been years coming, and I finally went through with it. I recorded a video for this blog. I was too tired to type about it. I look horrible - because I haven't been sleeping! This isn't a beauty contest. I'll look beautiful in other photos. Ha!



Some highlights:

- I didn't sleep much.

That pretty much sums it up!

Okay, but in all seriousness:

Sleeping pills didn't help. Being totally exhausted from several nights in a row of losing sleep over hives didn't help. I didn't sleep for the first 3 hours. I couldn't get comfortable. My rash on my ankle woke me up when I was finally sleepy. There was too much light and too much noise. I felt alert the whole night, like I was waiting for the next instruction. I feel like that at home regularly though. I don't ever want to have to do this again, as that was not at all fun trying to sleep and failing at it for hours.



This rash drove me nuts! I was worried I might get told I have to reschedule because of my hives. I was given the option. But the itching has gone down so much that I decided to just go for it. Except for this rash. I think it got worse during the study. I am sure I would have slept maybe 30 minutes more if this didn't bother me so much at 4:30 am.



I won't get my results for 1 to 2 weeks, so I can't tell you. What I can tell you is that my Oura Ring gave me a low sleep score, showing my heart rate never lowered below 80 during the study. (The Oura Ring is not good at determining if I'm actually sleeping or not. It thinks laying in bed with my eyes closed means I'm sleeping. It cannot detect if I'm awake when I'm laying still, so these results are not the reality of how long I slept. It also only shows me as awake when I physically move, not open my eyes. I opened my eyes and remained still a lot during the study.)


















I was worried about being reactive, and I was. I have rashes where the wire pads and glue were. They're not awful - not as bad as my hives have been. But my skin is not a fan of this stuff.



Getting that glue out of my hair was not nearly as challenging as I was told it would be. The lab tech advised me to use conditioner in my hair first, then use hot water to shampoo it all out. That might work, but I didn't try it. I soaked in a bath that was as hot as I could tolerate. I filled it with baking soda and epsom salts. It took about 15 seconds of soaking my hair in this bath water for the glue to come out. No problem! But after I scrubbed all the glue residue off I had to drain the bathwater so I wasn't soaking in it.


I'm pretty sure my hair is thinning out. Sigh.


I don't really know what the sleep study is going to show. I'll find out in a week or two!

3 Days of Rashes

Rashes! For 3 days! I'm puffy, swollen, have hives, have rashes, and I'm positively miserable. I'm very fatigued and feel almost no emotional capacity.

No, I don't know what is causing this, but there are possibilities. I'm going emotionally numb after all the heartache I've been through. (Someone tried to commit suicide again last night, and I'm just... I have nothing left to process it with.) I also started my period 4 days early, in contrast to being over a week late the last few months. It was much more painful than it has been and came with other bathroom issues. My diet hasn't been bad, but I've been eating less protein than I should in favor of more easy nuts and seeds to snack on. It's possible I can't tolerate that much. The weather is also making drastic sudden changes a lot, and I tend to flare during sudden changes like this. I'm also still on my doctor's mold protocol and maybe it just took a month to push out this much through my skin. I took a sauna when I was little too weak to handle it. My sleep has been... really bad. And then last night I was able to sleep solid like a rock because my period started. There's a lot of possibilities.

Anyway, I'm miserable. I feel like my hormones all dumped out of my body and I don't have any left to be human with. I'm in pain and itchy. I feel way too weak when standing up, occasionally out of breath and sweating just from standing. POTS is in full swing right now, and I'm vibrating even just sitting or laying down. I'm so over this.

Forgive me for not writing more informative posts like I used to. I'm just dealing with this. It's all I can do.

Flu then Pnumonia then "Recovery"

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

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

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

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

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

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

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

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

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

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

Thank you. 

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.

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. 

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.

Latex Mattress Review Part 2: The Bed and Bedding Review (Updated!)

If you read part one of my review on my new latex mattress, you will have learned the need for choosing a natural non-toxic mattress. I encourage you to at least skim that post before reading this view, because this review is based on my need for a natural bed.In this review I'll cover 4 bedding items I bought from Sleep On Mattress: The Pillow, Foundation, Mattress, and Mattress Pad. In the upcoming Part 3 I'll discuss other pillows, sheets, and blankets. Bedding should not be as complicated as it, but because it is, this review deserves 3 parts to cover it all!

The Pillow: Malouf Convoluted Contour Latex Pillow
(Click the link to see the pillow on the company's website)
Yep, the name is a mouthful, as my husband was quick to point out, but bear with me! After too many dollars and too much neck pain from buying several different pillows online, I decided to try something novel: going into an actual store and trying out pillows before I bought them! The problem is that I can't step foot into most stores without getting sick. Thankfully for me, Sleep On Mattress is a store in Bismarck, ND, where I live, that caters to people like me. They offer natural synthetic-free bedding, and they're located in a mall that isn't heavily scented (like most malls are - I normally would never dare step foot into a mall.) I learned about them because they advertised their organic latex beds through the health products store I work at, Terry's Health Products. Amazingly, the very first contoured latex pillow I tried in the store ended up being a winner! It's a Malouf pillow, but done right (I tried others of this brand first, which I'll get into in Part 3.) It is made from natural talalay latex in a polyester case, so I removed the polyester case and replaced it with an organic cotton zippered case:

I love this pillow. So. Much. One side has a higher loft than the other and it's contoured, so it supports my neck if I'm on my back or side and it doesn't put too much pressure on my ears. It's soft and supportive without being hard and firm, meaning that it keeps my head at the right height and angle all night, whereas other latex pillows I tried let my head sink down to the mattress or didn't let my head sink in at all.

The latex on the pillow falls apart very easily, and that is my only complaint. It needs to be treated gently. Sorry folks, this will not work in a pillow fight. In simply switching out the cases I lost lots of small chunks of latex. You can see in the photo that some of the points are missing. I haven't had any problems with losing latex since then, and it hasn't affected how comfortable and supportive the pillow has been for me.


The FoundationI do not have a brand name on this foundation, my apologies. This was the hardest part of purchasing the new bed. Let me back up a bit. My husband was willing to try a new mattress if it meant improving my health, but he did not want to lose the frame we already owned. It's an upholstered queen size frame with a built-in head board that looks very nice. I also like it, so I agreed we could keep it (even though it's all synthetic and probably has plenty of flame retardants, it's old enough where it has off-gassed, the mattress doesn't actually touch the frame at any point, and we hardly ever lean up against it.) That meant we needed to buy a traditional foundation to support the mattress, because the frame is meant to hold a foundation.

(Latex and Memory Foam mattresses cannot use a box spring. They need to be supported by a foundation with no more than 3-4" between each slat. The mattress will wear out too quickly on the wrong type of foundation or on a box spring, because they'll allow the mattress to sink in when it should never sink in at any point.)

I looked into a couple of different options: a Savvy Rest Insert without any synthetic material concerns (sold by Sleep On Mattress), a much cheaper basic wooden foundation with a removable synthetic cover that had flame retardants (I don't have a brand name on this) (also sold by Sleep On Mattress), and a solid wooden Amish foundation that was on sale on Amazon.com. If money were not a barrier, I would have chosen the Savvy Rest Insert without question. It really was the right choice for us, but our finances said otherwise. The basic affordable wooden foundation with the removable cover made me a bit nervous - did the wood absorb some of the flame retardants? For someone without MCS it would have been a great option. The Amish foundation on Amazon looked like it would fit my needs very well, but there were just enough reviews cautioning me against buying it. Then we were presented with a new option: Sleep On Mattress had one metal and wood collapsible foundation for sale. The price was right at $130, it appeared to be right for our needs, and it was easy to transport because of the collapsible frame. My husband chose to go with it. Sleep On Mattress does not normally carry it, but I bet they can order it for you if you're interested.

The foundation has been working just fine, but if I were to make the decision over again, I probably would have tried to convince my husband to get the Savvy Rest Insert instead.


Setting this foundation up was not at all as easy as it was supposed to be. This photo shows the foundation after we opened it up from the collapsed form. We then attempted to put the two horizontal support bars on. The idea is that the end of the bars go into holes - they should slide right in. The reality is that the fit was very tight and they required a cloth and a hammer to force in.



Then we inserted the wooden boards across the top. The ends of the boards have plastic caps with two little pegs in them. The pegs go into holes in the metal frame to support the boards. 3 of these pegs were broken off. The construction was fairy poor on these pegs, and I wouldn't be surprised if most of them break off in tearing down the foundation - if we ever do that.





We then put an old sheet over the top of it as the cover. It came with a synthetic flame retardant infested cover, but the cover came separately so we simply didn't put it on.

Even though the wooden slats are flexible and look thin, the foundation has worked well. It is supporting our 150 lb latex mattress.

...But it's also a bit squeaky. This was my greatest concern when buying a metal foundation, and it proved to be a bit of an issue. The squeaking is only on my side of the bed, and I only hear it when I get in and out of bed. Thankfully it never squeaks once I'm already on the mattress. A wooden foundation can squeak too, but squeaky metal tends to be higher pitched and it echos through the rest of the foundation.


The Mattress: Sleep On Mattress's own Latex Mattress

The mattress we chose to go with is Sleep On Mattress's own brand of a 9" Dunlop Latex mattress with an organic cotton and wool casing. The wool is the fireproofing that brings it up to industry standard, so they didn't have to add synthetic flame retardants. They have it manufactured for their own store. They explained to me that they were searching for a natural latex mattress comparable to Savvy Rest (an organic latex mattress company that's top tier), but with a lower price tag. Making their own ended up being the most economical, and the mattress is therefore more affordable than the Savvy Rest. It is normally $2,000 for the queen size, but in exchange for this review I was given a reduced price. If you are interested in this mattress, but are not from Bismarck, don't despair! They will ship!

I was told that they are in the process of making different models of their own store brand of latex mattress, some with gel and foam added in, and with different heights. So if the mattress we bought from them doesn't sound right for you, ask about their other models. The owners are interested in working with you to find what you need instead of pushing their agenda on you. They'll help you find what you need, and they do understand the issues between natural and synthetic mattresses!

When we purchased the mattress I expected this review was going to be very easy to write. I expected within a week I'd be able to write all about it with ease, but that hasn't been the case. 3 weeks later and we're still trying to make a decision on the mattress! This isn't a bad thing, and I'll explain:

First and foremost, is the mattress solving my MCS problem? Was it worth purchasing a natural mattress to better my health? YES! On the old memory foam mattress I regularly fought a rising heart rate every night I went to bed, and if I couldn't fall asleep before my heart rate skyrocketed, I'd be doomed to toss and turn and take even more herbal sleeping pills to try to knock myself out. I regularly had stress dreams and nightmares. I would often feel high anxiety as I was trying to fall asleep and again when I woke up. I experienced more fibromyaliga pain in that bed than anywhere else. I also had more skin rashes when I slept in that bed.

I haven't had a single nightmare or stress dream since sleeping on this new latex mattress. I have not experienced the skyrocketing heart rate on most nights (but I had the problem on a few nights after a food reaction or being in a public place where I was reacting.) I'm waking up feeling peaceful, not on high alert. The fibromyaliga pain has been greatly reduced, and I'm feeling it more after eating the wrong foods and not so much in bed. My skin rashes are reduced, but not gone (but there are other causes, such as the mycotoxins in my body.) Yes, I feel SO MUCH BETTER on this mattress, and my sleep is higher quality.

Secondly, is it comfortable? Yes... The floor model of this mattress was softer than the one we received. The floor model was about right for us, in that it was firm enough to give support, but comfortably soft around pressure points. My hips and shoulder sank in the right amount. The mattress we received was definitely more firm. It didn't let our pressure points sink in much, and my husband and I both woke up stiff and sore for the first week. The longer we sleep on it, however, the softer it gets. We've had it for 3 weeks and both of us are less stiff and sore, and I'm feeling my hips and shoulders sink in further. At first we were seriously discussing buying a topper to soften it up. Sleep On Mattress offers a soft dunlop latex topper in 2" or 3" that is of the same quality as the mattress itself. We chose not to purchase the topper because the mattress continued to soften up. It's still not as soft as the store model. I went back into the store and tried it out and I could immediately feel the difference. It is, however, finally feeling comfortable for me. If my husband decides it needs a topper then we'll go with a 2", not 3", because we both like a slightly firm mattress. 3" would probably soften it up too much. All we would want from the topper is softer pressure points.  (Update: we bought the 3" topper, and it's so so so so much better than expected: please see my review of it below.) If you're the type of person who needs a firm, but comfortable and cozy, this mattress will probably be perfect for you. It's not nearly as firm at the floor, thankfully, but if you feel best sleeping on the floor then you're probably not shopping for a mattress anyway.

One adjustment I had to make to reduce my shoulder pain on the new mattress was lift my pillow up a bit. I'm a side sleeper, so a little more loft was all it took. I did this by adding a homemade organic cotton pillow under my latex pillow. I made it a while back to try to add loft to other pillows I was trying to make work for me, but that failed because the pillows I was trying to make work were simply wrong for me. I made the pillow very flat, so it only adds about half an inch, but that was enough in this case. I'm noticing that as the mattress softens up with use the pillow is starting to feel a little unnecessarily high, so it might continue to soften up enough that I no longer need to use the second pillow.

Third, how easy was it to set up? Well, let me be clear: this is a 150 lb mattress that comes compressed and rolled up into a tube. It's not easy to transport due to the weight and awkward length. Once it's unrolled, it's like trying to move a queen sized piece of Jello that weighs 150 lbs. Once the mattress is set up, leave it set up. Don't plan to move it. My husband and I were able to carry it out of my truck, up the stairs, down the hallway, and into the bedroom. By "carry" I mean slide on the carpet as much as possible. We were able to unroll it, get a full encasement allergy cover on it, and then get it in place on the bed. Nether of us are that strong. Neither of us want to do it again. But it was well worth it, and we quickly forgot about the hassle after a few nights of sleeping on it. And if setting it up yourself really bothers you, have the guys at the store do it for you. ;)

It came in an awkward box:



It was plastic wrapped to keep it rolled up and compressed:




Removing the plastic made it quickly decompress and unroll, before we could control the process. First thing we did was slide this allergy protector on it, which was the biggest pain of all. I'll explain which allergy cover I got in Part 3. We had to lift the mattress and pull up the cover an inch at a time, which was very tedious and difficult. I forgot to get a photo of the mattress before the cover was put on, so I pulled back the cover for this photo so that you can see the organic cotton and wool casing. Notice how the mattress falls like jello off the end of the foundation to the floor:

Set up and made our bed (forgive all the clutter, we had to push our stuff out of the way to set up this bed). As you can see, it's thinner than most mattresses. Our former mattress was 12" thick, and this is 9" thick. Big difference! We're closer to the floor, we don't have to jump up onto the bed to sit on it, and best of all, we're not stretching out our sheets! We have deep mattress sheets, but even they would come untucked on our old mattress. Our blankets hang further off the sides of this bed, which means we no longer have cold air attacking our legs in the middle of the night!

Final verdict (which I will update in another few weeks to see if it softens up more):

The mattress was worth it! While I would prefer it to be a bit softer, it is comfortable now that it's had time to soften up. I love that we have the option to add a latex topper of the same quality if we choose to soften it up more. The latex feels better than the memory foam in that I can adjust my sleeping position on it easily, whereas the memory foam mattress wrapped around my shape a bit too much to make it easy to move. I love that I'm getting better, deeper, more restful sleep on it! I'm not reacting to the mattress at all, so my body can actually relax at night!

If you're intrigued by all the benefits of this mattress, but the firmness worries you a bit, Sleep On Mattress does sell other latex mattress options. They carry a Talalay line that has some synthetics, but is mostly natural. They also carry the top-of-the-line Savvy Rest mattresses, which are certified organic latex mattresses. They had a couple options in the store to try in this line, and they have different feels. Again, this store is awesome because they will work with you. And they do ship! You don't have to live in Bismarck to buy from them!

UPDATE 12/22/16 - Latex Topper:The mattress continued to soften up and my body began to adjust to it. I actually found it to be comfortable and would have been happy with it as it was. My husband, however, still found it to be too firm, so we ordered the 3" soft topper. He decided against the 2" because he wanted to make sure we bought the best topper and not take a chance on a thinner model that might not have been enough for him.

I'm being sincere when I say that the mattresses was comfortable before the topper. But I'm also being sincere when I say that the topper is an AMAZING addition! I was worried it was going to soften it up too much, but this latex is amazing in that it softened it up a lot for my husband (who is obviously heavier than I am) and didn't soften it up much for me. The topper is very supportive, but lets pressure points sink in easily. I was worried about losing support by going softer, but I didn't lose any support while gaining pressure point relief! I stated in the original post that I needed to prop up my pillow so that my shoulder wasn't squished on the original mattress. I do not need to prop it up now. This topper lets my shoulder sink in the perfect amount and my head rests perfectly on the pillow. My husband went to the chiropractor, finally, and got rid of his back pain (for now - he needs go to regularly.) So he can say for sure that this mattresses and topper is not giving him back pain. He's sleeping very well, waking up feeling good (not stiff and achy like on the mattress before the topper), and is actually starting to compliment the bed!

This topper is normally about $400. Don't fear the price tag: it's worth it. Remember that latex can last 15-20 years if you take care of it. Most mattresses only last about 5-8 before you really should look into replacing them. So investing an additional $400 into a bed that is safe, healthy, won't make you sick, very supportive and comfortable, and very long-lasting is an excellent deal.

The ONLY thing I'm a bit sad about it is that we now have a 12" mattress + topper. Many of you might think this is better - it all comes down to preference. My husband likes the height better. For me it just makes it a tiny bit more challenging to put my sheets on. They are now a snug fit. I'm only 5'5", so I have to jump up a bit to crawl into bed.

I, of course, have photos to share:

It came in a much less awkward box. They were able to fold the topper in half before compressing it and rolling it up, so the box was actually very manageable. I could carry it up the stairs into the bedroom myself.


I was able to unroll it on the bed because because it wasn't awkward, unlike the mattress. The mattress was difficult to set up, but this was very easy.


It unrolled folded in half. What you can see in this photo (which I forget to get a good photo of for the mattress itself) is the organic cotton cover. This is the exact same cover (and type of latex) as the mattress has.



It does add some height, as you can see. You can also see how much padding it gives in order to soften up the mattress. Thinner versions are available (they're also cheaper), but I think it's good to see what the full size looks like when making a decision.

  (Sorry, excuse all my pill bottles in the background. I meant to clean up the bedroom before taking photos, but I only had enough energy to set up the topper.)



The Savvy Rest Cotton Mattress Pad:

I didn't purchase this with the mattress. I understood the benefits of it, but I thought the allergen cover might be enough for my needs. What changed my mind was reading up on how to care for a latex mattress, and I kept seeing that body sweat and heat can slowly deteriorate latex over time. I want this mattress to last me as long as possible (I've read 15-20 years when cared for correctly,) and I decided that I really don't want to have to wash the allergen any more often than necessary because it is such a pain to get on. The mattress pad is very easy to take off and wash, and it will collect any body fluids that get through the sheets. What really put me over the edge and made me buy the pad is when someone told me that they had a latex mattresses that molded. This really confused me, because latex is naturally mold resistant, and that was one of my biggest reasons for choosing latex over another natural mattress. She was not using a mattress pad. I wouldn't be surprised if the latex wasn't molding, but body fluid that got into the mattress was molding. She had mold toxicity in the past, and mycotoxins do sweat out of out of people with mold in their bodies. Either way, this made me decide to buy the topper. I do have a mycotoxin issue in my body, and I don't want mold to grow in my new safe mattress.

The topper is very nice: it's 100% undyed organic cotton with a stitching pattern to keep it from bunching. It is made slightly over sized so that it has room to shrink after washing. I washed mine in cold water with plant-based non-toxic detergent, and then I dried it by draping it over two dining room chairs and placing my air purifier under it. The air purifier creates quite the breeze on the high setting. Even after washing it properly, it did shrink to exactly the same size as the mattress. So that wasn't a problem, and it was very easy to care for.

I thought it might add a soft layer to the mattress, but it did not. At first it actually made the mattress more firm, but that was because I tied it too tight. After loosening the grip of the ties the mattress felt the same as it did without the pad.





Thank you for reading my review! Comment with any questions, and I'll be happy to answer them. You can look forward to Part 3, which will be on the bedding (blankets, sheets, etc) in a week or so. Let me get past Thanksgiving first. :) (Update - that might come after Christmas. This month is too stressful for me!)

Thank you so very much to Robert and Mike at Sleep On Mattress for this amazingly healthy mattress and for your wonderful high quality service! I've really enjoyed working with you both, and I cannot recommend your store enough!

Stink! Movie Review and Link to Watch it for Free

https://stinkmovie.com/

I've been looking forward to watching Stink! for at least a year now, but I haven't had access to it on any of my streaming accounts. For the month of October, 2016 it's streaming for free. Just click the link above and watch it right on the website for free.

Why are they streaming it for free? Because it's Breast Cancer Awareness Month, and nothing says you support breast cancer better than Susan G. Komen, right? After all, the "charity" raises money by selling perfumes, lotions, clothing, shoes, hair products, and more all containing known human carcinogens and endocrine disruptors, known to cause breast cancer. Yes, you read that right. Susan G. Komen raises money and support to find a cure for breast cancer through products that cause breast cancer... with whatever is money is left after salary. This movie is meant to educate you on how to avoid getting breast cancer by avoiding those ingredients that are known human carcinogens.

Stink! is another in a line of documentaries about the actual science and politics behind using untested, unregulated synthetic chemicals in the majority of the products in our country today. I can't say "in our world today" because most other countries actually regulate these same synthetic chemicals and refuse to allow them to be used in their countries. Because they're not proven safe. Two great documentaries that came before Stink! are The Human Experiment (by Sean Penn) and Toxic Hot Seat. The Human Experiment was a very basic, not hard hitting introduction to the problem of untested, unregulated synthetic chemicals that are not proven safe being in most of our everyday products. I was happy it was made, but it won't convert any skeptics. Toxic Hot Seat focuses on the rate of sickness and death in firefighters since flame retardant chemicals have been added to all of our furniture. It was a bit too long and too dense, as if it were an actual PubMed study in film version, but it goes to show how much there is to say on the matter and how complicated the politics are. Even if you just watch the first 30 minutes of it you'll have enough information to make better furniture choices - it's that hard-hitting.

But Stink! is easily my favorite of them all so far. It's by a father and husband who lost his wife to breast cancer and wants to protect his two daughters from developing cancer too. He bought his children pajamas from the store Justice for Christmas, but when they opened the pajamas they were assaulted with a powerful smell. He wanted to know what the synthetic smell was, so he made many phone calls to Justice and they refused to tell him what ingredients are added to the clothing or for what purpose. So he sent the pajamas to a lab to be tested, and the results showed synthetic chemicals that are known human carcinogens and actually banned. The movie goes from there, exploring the dangers in perfumes, cleaners, body care products, car wash, clothing, furniture, etc. He shows interviews from C-Span in which John Kerry and other well known politicians grill people in the chemical industry. He personally interviews politicians and those working in the chemical industry. He personally interviews the CEO of Justice who refuses to apologize or acknowledge any dangers in his clothing line. You'll come to understand the politics very well. He did an excellent job in this film!

So please, for your own health and for the health of everyone around you, please watch this film. It's FREE for the month of October. You can't tell me you're too busy to find time for this movie in an entire month. You can't tell me you're not interested, because if you're alive you need to be interested in this massive assault on human health. Why am I so passionate? Because cancer isn't the only illness that these unsafe synthetic chemicals cause. I personally have been affected. I have a disease called Multiple Chemical Sensitives that's at the heart of my chronic illnesses. I have a difficult time going in public without getting sick due to all the toxins people wear and are in most buildings, meaning I can't just go on living my life normally. It's impossible.

New Blood Sugar Meter

Do you know that feeling where your body is feeling stimulated and it wants to move, but you're feeling very spacey and internally fatigued to the point where it's hard to focus your vision on anything? Yeah, me too. I thought this was due to low blood sugar (because I can get hypoglycemic easily if I don't eat correctly,) but as it turns out, it's not. It makes sense, because when I'm actually low in blood sugar I have a whole host of other symptoms. My blood sugar can be over 120 and I still feel this way. I think it's my thyroid and adrenals actually causing this problem. That's another issue.

I finally bought a blood sugar monitor for home use. What I'm learning is that I start to get spacey, brain fogged, and extra fatigued when I'm below 95, either before or after eating a meal, but I can still use my body and function. I've tested around 80 when I've gone too long without food (meaning more than 2 hours), and I did feel drained and light headed during those times, to the point where it's hard to move if I want to. Most interestingly of all is the fact that I'm testing relatively highest first thing in the morning.  My morning blood sugar has almost always been above 115, once it was 127! Mornings are the messiest time of day for me. I typically wake up feeling groggy, then once I'm fully awake I typically feel loaded with adrenaline. I'm guessing my cortisol is high, but I really need to get a 24 hour cortisol test done to confirm that. What I do know is that my blood sugar is highest during those times. An hour or so after breakfast is when my blood sugar drops. It's not a struggle to keep it above 100 through the day IF I eat meat every 2 hours. When I don't eat meat this often I tend to stay in the lower 90's, even if I eat every 2 hours. My doctor is right, again. (He's the one having me eat protein every 2 hours.)

The other interesting issue I have is that I have a very difficult time getting enough blood for the reading when my blood sugar is low. I can hold my hands under hot water, jump up and down, shake my arms, and rub my arms down into my hands. It's very difficult to get enough blood after lancing myself. When my blood sugar is above 100, it's not even half as difficult to get a good amount of blood.

Which meter did I buy? The best looking one on the shelf - I didn't really research it ahead of time. Let me tell you a quick story first:

I went out and finally bought the monitor based on a really scary situation I had a couple of weeks ago. I was PMSing like something terrible. My sugar craving was out of control. I ended up eating an entire bag of organic dried apple and bananas with cinnamon. In one sitting. It was about 50 mg of sugar in that bag. I haven't done anything like that in the last 3 years on this diet! I've splurged on 85% dark chocolate bars, but I think the caffeine affected me more than the sugar. This was the first time I've had this kind of binge on a high sugar food. I felt jittery and stimulated for about an hour and even had a headache some of that time. Then I sat down with my husband and started laughing about something with him. Mid laughing I crashed. HARD. All the energy drained from me, my right arm went completely numb and I couldn't move it, my heart started palpating down into my stomach, I couldn't see straight or focus on anything, and I started crying uncontrollably while struggling to take breaths. My husband thought I was having a stroke, and he told me I got very pale white. My husband gave me some apple juice. It did help. It took about 5 minutes to start improving, about 30 minutes to feel recovered enough to eat lots of jerky. My biggest problem is that eating sugar makes my blood sugar drop too much, and this case I ate wwwaaaayyyy too much sugar. This was definitely a hypoglycemic/ adrenal crash.

This scared me so much that I went to CVS the next chance I had to buy a glucose meter. After talking to the pharmacist and reading all the boxes, I decided on the CVS Advanced Glucose Meter. The reason is because the test strips are affordable. $12 for 50 and I can buy them without insurance. The pharmacist convinced me it's accurate enough and is easiest to use. I've never used a meter before, so I have nothing to compare it to outside of labs at the hospital.

What I like about this one:
-The fact that it tells me my blood sugar level at home.
-Easy to use, very intuitive
-Large memory bank for my readings

What I don't like about this one:
-I tend to go through about 5 strips before it gives me a reading and not an error message. Part of the problem is that I have a hard time getting enough blood to squeeze out of my fingers, and this meter doesn't need much blood. The main problem is that this machine is very finicky. I read some reviews on the machine and tons of people said that it's accurate enough and the strips are cheap, but they too gets lots of error messages. It's so much fun having to lance myself 3-5 times just to get one reading. Sigh.

-It doesn't come with the specific USB cable needed to upload my results to my computer. Not just any USB cable will work. I had to call CVS customer service, sit on hold for 20 minutes, and request they send me a free cable in the mail. No, you can't just go to CVS and get a cable. No, it doesn't come with the cable. You must call them and ask them to send it to you for free. I'm rolling my eyes about this.

-I question the results a little bit. I don't have confidence in its accuracy. The few times I've retested myself immediately after the first test I got a different reading, usually within 5 points of the first reading. That's not a big deal. Once I had a reading of 122, then when I retested I was 111. That big of a difference bothers me.


Anyway, I want to go take a nice hot bath now. :)

Lesson Learned: Buying Used

I haven't been able to use my computer for about a week. Why? Because my husband bought me an amazing birthday present: a new computer desk! It's an L-shape desk with a hutch, meaning lots of desk space and storage space. The keyboard tray actually pulls out with ease and my fingers don't hit the bottom of the desk as I type! I can cross my legs under the keyboard tray too, because there's actually room to be a human being at this desk! (Can you tell my old desk drove me crazy?) I found this desk for sale and knew I wanted it at first sight. It was very reasonably priced too! But it's used. We bought it directly out of someone's house. I'm not being judgmental by saying this, just observant, but when I walked in the house the first thing I saw was a can of Clorox wipes and a carpet that hadn't been cleaned in years. I don't get around to vacuuming as often as I should either, so I do understand, but it should have been a red flag that this desk was going to make me sick.

I left the desk in the garage for 3 days to off gas and air out. My husband was even bothered by the smell of it at first, and he doesn't really notice smells. I wiped every part of it down in non-chlorine bleach (hydrogen peroxide) about 5 times. After 3 days it smelled a tiny bit, but it didn't seem bad. I really needed my parking spot back because storms were on their way. My father-in-law and husband brought it into my office and set it up for me. It took about an hour before I developed a headache in my office, and then the heartburn and muscle cramps. I knew there was a problem, but I was highly optimistic that with a few more days the desk would stop bothering me. I put lots of little bowls of baking soda all over the desk to absorb the smell and set up my HEPA air filter on full blast.

But that wasn't the only new piece of furniture we bought. Long story short, the only corner in my office where this desk doesn't cover a door or window isn't a true corner, it's got two corners and a diagonal wall. That left space between the desk and the other wall... enough space for a narrow table. So I looked online and found one that fits the space perfectly, then we went out and bought it from another person's house. It was affordable, in excellent condition, the right size, the right color, and the right sturdiness. His home was clean, but he was moving so everything was piled up. I couldn't really detect problems such as cleaners, fragrances, or smoke. We brought the shelf home and I stuck my nose into it in the garage. It had a mild old apartment smell, but after I washed it down with non-chlorine bleach I couldn't smell it anymore. I figured it was safe. Boy was I wrong! We brought it into my office, put it between the desk and the wall, and I set up my stuff on it. It looks and feels great! It's perfect! But the office smelled 2x worse and I was reacting pretty strongly to it for several days after the shelf got moved in. I still only smell the desk, not the shelf, but my reactions were made much worse after the shelf moved in.

I'm not this stupid. Really, I knew better. I was just very excited. I also believed that used had the potential to be safer than new due to the off gassing of formaldehyde from particle board. We couldn't afford a new desk that was made from better material, and the affordable glass desks were actually worse than I what I already had.

So for a full week now I've kept the windows open, my air filter on full blast with a new filter, my salt lamp on, lots of baking soda cups around the desk and shelf, and the door shut. I've left the office alone to detox for a full week.

I'm in the office right now. Without my Vog Mask it's tolerable, but still makes me mildly sick to my stomach with a mild headache after about 15 minutes. With my Vog Mask I've been in here for about an hour. I feel extra fatigued and have a general "gross" feeling on my skin, but the Vog Mask is helping quite a bit. I know I'm doing no favor to my health being in my office, but since it's finally tolerable, I want to use my computer!

If you have MCS you cannot be too careful.
I have a reasonable amount of hope that I can eventually use this desk safely. I think I might go buy some vodka and clean both the desk and the shelf with it. The non-chlorine bleach definitely helped, but vodka can annihilate certain chemical smells.

(Before buying the shelf that is now behind that file cabinet.)

Mycotoxins and Mold

My naturopathic doctor recently had me do a mycotoxin test through BiotrekLabs.com. The reason for this is because the lab gave him a test for free, and I got to be the guinea pig and try the test out. If the test was not free, I highly doubt I would have had a mycotoxin test done. As it turns out the test showed I have "alarmingly" high levels of all mycotoxins in my body:



I was given my actual numbers over the phone, and I can tell you they up to 3x higher than the top of the range. This is alarming - I was really surprised. Many thoughts ran through my head: Why isn't the mold killing me? Since aflatoxin is one of the most carcinogenic toxins known to man, why don't I have cancer when my body is full of it? Why am I not suffering a daily bloody nose, which is my typical allergic reaction to mold (I tested very high in allergies to most molds many years ago.) Wouldn't my symptoms be A LOT worse than this? Sure, I can hardly move some days, but I'd expect to be completely bed ridden with results like these!

Let's back up a little bit. The company who makes the test is not the most reputable, and accuracy is a concern here. For a $650 test I would expect highly reliable results. These results could be very accurate, but there's reason to question it. That said, it's no surprise that mold is a major player in my illness, and I do believe I am high in the mycotoxins for several reasons.

I've had some awful mold exposures in my life. I've always been so sensitive that coming into contact with mold would give me an immediate bloody nose with mild flu-like symptoms, while people around me were just fine. I lived on the coast in Oregon for my teenage years, a place that was naturally moldy due to constant high humidity. I could never visit the city of Bend, Oregon without getting very sick. Every single time I stayed the night in Bend, which was at least once a summer, I would end up with the flu after several bloody noses. I think a big part of the problem was that I am also allergic to trees that grow in that area, so it was a double whammy. When we moved to North Dakota from Oregon, we lived in a guest house for 3 months that was not in good condition. My mom and I disrupted a big bush of black mold on a sliding glass door in that house (I call it a bush because it was at least a few inches by a few inches.) Next thing I knew, both nostrils were pouring blood and blood was flowing down my throat. Mom grabbed a mixing bowl to collect all my blood and I filled it at least half full. I wanted to go to the ER, and I was sick with flu like symptoms after that exposure. Years later my husband and I moved into an old house in Boise, Idaho. At first it was hard to tell if there was mold or not - it was old, needed repair work done, but nothing obvious as far as mold. I was getting bloody noses at least weekly, but I tend to get them in Boise anyway due to the dry air. It was in that house that I started gaining weight rapidly, developed arthritis, started to rely on coffee and energy drinks, and felt my physical decline. One day the wall of the shower fell into the tub, revealing lots of mildew. I was very stupid at the time, assuming it was just mildew and as long as the lining of the shower got resealed onto the wall it wouldn't affect us. We lived in that house for 2 years. We moved back to North Dakota into my parent's house (my parents moved out as we moved in.) The skylight in the main bathroom was occasionally leaking, thankfully into the toilet itself, ha! One day it wasn't just a drip, it was an actual stream of water and a larger hole opened up in the ceiling. The repairman said he couldn't find any mold, but when we replaced the skylight we found that the roof board below the skylight was heavily rotted. The bathroom was renovated and sealed up, and the roof was repaired. Shortly after that, we had our windows replaced, and mold was found in the window frames. Thankfully, replacing the windows took care of the mold!

(The mold test kit's results for the main bathroom when the skylight was leaking into our toilet.)

I have a history with mold, as you can read. The question today is this: Am I still living in a moldy environment? My dad hired a company to test our house for mold. The results showed that the upstairs, where my husband and I live, had half the amount of mold as the outside of our house had (which is the base range.) The downstairs, where another family member lives, had double the mold as outside of our house. They called it "slightly elevated." For me personally, "slightly elevated" can mean "not at all safe."

Another clue as my biotoxin illness was taking the VCS Test (Visual Contract Sensitivity Test.) The idea with this test is that mycotoxins build up in our eyes, making it difficult to see contrasting colors. It seems very simplistic, and I'm not going to explain it well, so I encourage you to read about on this site. Dr. Richie Shoemaker (the leader in mold illnesses) highly recommends the test. I tested positive for biotoxins based on this test (the test was free):


We had a new washer and dryer installed this week, and when the guys from Best Buy removed the old washer we saw a couple issues. The backside of the washer looked mildewy, something I couldn't have seen before. The valve for cold water was corroded and leaking, something I couldn't have seen before. They were unable to install our washer because of that valve, so they shut it off so it stopped dripping, at least. We have no way of knowing if it was dripping behind the sheet rock, but it's very possible. But that's when it dawned on me: was I washing my clothes in a moldy washing machine? It was about 30 years old, had a leak, and probably wasn't cleaned properly for years. Are ALL of my clothes contaminated with mold from that machine?

So... knowing my history, you can see why it's no surprise that mold is an issue in my health.

Normal people who get sick from mold tend to get over it and regain their health after leaving the moldy environment. This is probably the least moldy environment I've been in for most of my life. You'd think that I should be improving, but my level was still very high on that test! It was that high after 2 1/2 years of a perfect anti-candida diet (no sugar, no moldy foods, nothing to feed mold), and a 6 month long Candida cleanse (which should have killed mold too.) Either my levels were even higher and they have come down with all this work, or what I'm doing isn't working and isn't killing the mold in my body. (Or the test isn't accurate, but I don't think that's a big factor.)

When I've looked into why my body doesn't recover from mold, I keep seeing research and articles talking about the HLA genes. Apparently, only 25% of the population have these genes, and those that do are highly prone to mycotoxin illness. I've been told that the gene makes it so the body recycles mold back into the body instead of excreting it out like in normal people. I have the genes. *IF* this is true, then how can I possible fight it? I could be recycling mold from when I was a little kid, right? So what hope do I possibly have? If I do mange to kill all the mold in my body, wouldn't I just get sick all over again from new mold accumulation in my body? Mold is impossible to escape!

So I looked at mold treatment options. The first thing that came to my attention is Ozone therapy. Apparently ozone IVs can cause mold in the body to implode, killing the biofilm and the mold itself. It's impossible for mold to survive in ozone. Sounds like a miracle cure that's easy, right? Nope! Ozone is HIGHLY toxic to humans. It's so risky that it's actually illegal, but there are doctors administering it. Strong people can survive ozone IVs, but someone like me? It's extremely risky. You will find many doctors who swear by ozone and its safety, but I am very cautious. Alternatively, I get treatments in a hyperbaric chamber at my Naturopathic Doctor's clinic. This chamber is oxygen therapy, which can do the same thing as ozone, only much much much more safely. The problem is that I don't live near my doctor's clinic, and I'm unable to get treatments more than a few times a year. I have yet to find a hyperbaric chamber anywhere in the city I live in. I've been told to drink food grade 35% hydrogen peroxide, which is essentially the same thing as ozone, but supposedly more gentle. This is not something I'm willing to try without my doctor's support, especially based on what 3% hydrogen peroxide did to my mouth (check out my black hairy tongue post.)

The next option that was made aware of is the Shoemaker Protocol. I had several people tell me it's the ONLY option for treating mold, and all the mold support groups I've looked into treat this protocol like the Holy Bible of mold toxicity. It's so popular you'd think it has a high success rate, but I keep digging and digging through the internet and can't actually find much about the success rate, just people claiming to feel better and people claiming they can't tolerate the protocol. The protocol seems to be a mixed bag. From what I'm reading, there are plenty of people who do not do well on this protocol specifically because of the main prescription medication: Cholestyramine (CSM). It's a cholesterol drug. This raises red flags for me. First and foremost, my cholesterol should not be lowered! Secondly, I don't tolerate medication well - my body readily rejects most medications I've tried. Thirdly, negative reviews of this drug for mold toxicity are very negative. It causes severe constipation, and you must take it with a laxative, causing a great deal of distress for many patients. It also absorbs nutrition from your food and supplements, so you must be really careful about how to take the drug so that you don't malnourish and dehydrate yourself. I hope you can understand my hesitancy to consider this protocol! I understand that when it works for someone it works very well in that it makes them feel better. But what I don't understand is why this prescription drug could possibly be more effective than natural binders like Zeolite, Activated Charcoal, or clay?  Dr. Shoemaker claims that they don't bind to the same toxins, but why not? I plan to do a lot more reading up on this protocol since it's pushed so hard by mold patients, but I think I need to remain skeptical. Listen to or read this really wonderful interview on this protocol by Dr. Shoemaker himself.

The other option I was made aware of is a protocol by Dr. Nick Gonzalez, may he R.I.P., as outlined in Suzanne Sommer's book Tox-Sick. (I will write a separate post on this book once I finish reading it, but so far I highly recommend it.) He advocates for regular coffee enemas and far infrared sauna treatments in addition to taking food-grade bentonite clay daily. He claims that the clay's magnetic charge and honeycomb structure makes it an excellent binder to absorb mold and carry it out of the body. I'm intrigued by this, especially since I know how much better I feel when I take activated charcoal regularly. I also found this study about the effectiveness of clay on aflatoxins in humans. I see problems with this plan, though: dehydration and heavy metal toxicity. Apparently there is less lead in the clay than in some nuts and vegetables, and apparently it's not a bioavailable lead. I'm linking to Wellness Mama on this one simply because I'm having a very difficult time finding actual studies on the risks of the heavy metals in clay - even the FDA approves bentonite clay as a safe food additive. Maybe my hesitation about food grade clay isn't well founded afterall? I have been using bentonite clay on my skin and as a toothpaste for a couple of years now and absolutely love it. As for the coffee enemas, I'm interesting in trying. I get colonic irrigations a few times a year at my doctor's clinic and they are exceptionally helpful! Enemas won't be nearly as good, but I'm curious because I can do them at home. I already use my far infrared sauna many times a week at home (I haven't written a post on this - what's wrong with me!?)

I'm glad my naturopathic doctor had another option for me. He put me on a homeopathic nasal spray with oils designed to kill mold in my sinuses. This is not a full solution, but we just want to see what happens. Mold loves the sinuses because they're a dark humid place, so starting by killing the mold in my sinuses makes sense. The spray is also designed to desensitize me to mold homeopathically.  It's a bit intimidating spraying trace amounts of black mold into my sinuses, but I'm not foreign to the concept and have had good results with this type of treatment in the past. For now, I'm content to address my mold issue with this nasal spray while I work on making my house as mold-free as possible. Ideally I'd be able to do a hyperbaric chamber regularly too, but at least I can stick with my diet and my sauna to continue to kill off and sweat out the mold in my body. I might even consider the food grade bentonite clay, after a lot more research and talking about it with my doctor. I need to go slowly, and I like that this is a very gentle start to killing off the mold in my body.