Where You Live Matters: ND to SC Move Reflections on my Health

Before moving to South Carolina, I had a lot of stability I took for granted while living in North Dakota. I've lost quite a bit of my health here, and I want to write about what was working for me in ND that I don't have here. I'm hoping my insights can help others find ways to live their best lives in their current situations too. 




1. I had security

I'm listing this first because I think it's foundational. It's extremely difficult to work on health when you're feeling insecure about your home, finances, food, and paying the bills. I lost that security when moving to SC, because our finances and tighter and rent for a decent home is way too expensive. We found a house to rent, but we're questioning if we need to move to the bigger city so that I have access to jobs, healthcare, and food. It's hard for me to unpack and feel at home when it won't be long-term, which makes me feel unsettled. Also, this house is simply not in good condition compared to where I was living in ND, and it causes me some insecurities because I'm not used to worrying about the problems of a house this old. 

In North Dakota we lived in my parent's house while they couldn't live in it, so I never had to worry about losing the home if our finances were not good that month. The house was not perfect, but it was very comfortable and in good condition. Our finances were not great there (which is why my husband needed to find a job elsewhere), but I had no reason to worry about being unable to afford what we really needed. 

The stress of living paycheck to paycheck, reducing standards to make ends meet, being unable to purchase much food that works on my diet nearby, being unable to afford doctors and medical care, living with a higher crime rate than I've ever had to worry about before, and living in a place where traffic accidents and death are very high are all very destabilizing for me. I have a lot of reasons to feel stress here. And stress = illness. 





2. Everything I needed was within a 20 minute drive

Bismarck was a basic medium-sized city of around 80k. It didn't have many amenities of larger cities, and it was a 7 hour drive from any larger city (Fargo was 3 hours away, but Fargo doesn't have much.) It did, however, have enough within a short driving distance. This is very important because it's difficult for me to drive far, and I only drive when I'm feeling strong enough and capable enough. I found a job that worked with my health abilities only 7 minutes away from home. I had access to organic food at my job and through two other stores that were 5 minutes away from home (one was a Natural Grocers, which provided the largest selection.) I had access to a phenomenal acupuncturist only a 12 minute drive away. I had access to MDs as needed, only a 7 minute drive away. I had a walking trail behind my house, so no need to drive to it. I had access to 2 restaurants that made meals I could eat on my diet, both within a 7 minute drive. I had access to the best regenerative beef money could buy through my job and they delivered to a location 5 minutes away from my house. Seriously - everything I needed to live comfortably was close. (Now I did have to travel for specialized medical care - but that's normal for most people.) 

Here in Gaffney, SC... I don't have any of that. I can't find a job that works with my needs. There are 3 grocery store options, and 2 of them don't offer much I can eat. The 3rd is Aldi, which is good on my budget when they have things worth buying, but they don't sell everything I need. I can't rely on them. The farmer's market here is tiny, so while I can buy some things there, I can't rely on to meet my needs. There are no acupuncturists in this town, but if I drive 35 minutes north there's a phenomenal acupuncturist. The problem is he's out of my budget and I can't always safely drive 35 minutes at a time. I typically don't do well driving longer than 15 minutes at a time, unless it's a good day and I took the right pills first. There really aren't any restaurants here that make safe food for me - I can get away with eating at 2 places, but I have to cheat on my diet to eat the meals that are mostly safe. As for medical care? I haven't used the local hospital here, but it's a very small town. 

What this means is that I can't be independent here. My husband has to drive us to the bigger city once a week to go buy food, and the grocery options aren't great either. We found a Fresh Market (holy expensive prices, Batman!) and a Publix (better than anything in Gaffney) within a 35 minute drive of home. The farmer's market was great in the summer, but that doesn't help me in the winter. Fresh Market does sell a lot of things I can eat on my diet, but sheesh, it's going to bankrupt me to shop there. (Numi organic deli meat is $8/pack at Earth Fare, and it's $10.99/ pack at Fresh Market.... I mean, seriously... and all their food is marked up like that.) It's honestly better to drive 1 hour away from home to get to an Earth Fare and Whole Foods, both of which are cheaper (even considering the gas to drive there.) Yes, Whole Foods is cheaper - not joking. Actually Whole Foods isn't that expensive, it's just easy to spend your whole paycheck there because they have so much worth buying! Anyway... I'm alone and isolated here Gaffney, totally reliant on my husband to be able to help me get what we need. 




3. I had a job - a GOOD job 

This one is HUGE. I think I knew it while I was living there and working, but I don't think I realized the full extent of how helpful it was for me. I had a job working in a place that aligned with my needs, values, world view, and health. It paid me some money, even though I couldn't work many hours. Most importantly, it gave me a sense of purpose. I felt like, despite my poor health and inability to do much, it allowed me to feel like I was contributing to society and a better world. It gave meaning to my life. It gave me a community to be part of. It helped me socialize. It allowed me to spend my limited energy in a useful way. These things were super important. SUPER IMPORTANT. 

Being unable to find a job that works with my needs is a huge punch to the gut here. It has caused me a lot of insecurities, depression, despair, and feelings of worthlessness. Poor emotional health makes it very difficult to manage physical health. I lost a lot by moving here. 

I worked for Terry's Health Products in Bismarck. Check them out and support them! Such an amazing small local business, and they will ship! 

4. Family

My family moved back to North Dakota. My husband's family is all in North Dakota. Having family nearby is very important. Family gives community, connection, support, love, hope... family is everything. 

Suddenly being far from family is... lonely. It feels a little like death, in a way. Sure, we have phones, but it's not the same as living nearby and experiencing the same life. 

Mom is so good to me, and so awesome!

5. North Dakota was not as moldy as South Carolina

Mold is a way of life here. It's everywhere I go. The humidity is high, it rains a lot, buildings are old and in poor condition, people aren't educated enough to realize it's a health problem, and the soil itself is moldy. I'm allergic to mold. In fact, mold is one of my root causes of my all health issues (the other was H1N1/ Swine Flu.) I'm literally living a place that's poisonous to me. 

North Dakota weather could lead to mold damage in buildings and homes. Summer humidity could be high, though not as high as here. Excess snow could lead to moisture damage in buildings not prepared for it. The house I was living in did have external mold problems that had to be remediated. I had a mold scare there, but it wasn't as severe as anything here. Not everywhere was moldy in ND. Here pretty much everywhere I go is moldy. 

Kindling Health: Source of Mold - My Reaction (kindlingheatlh.blogspot.com)

6. North Dakota allergens were nothing compared to South Carolina allergens

Okay so I did have some allergy issues in North Dakota - it's an agricultural state that grows a lot of corn and wheat, and I'm allergic to both. That wasn't a problem in the city though. There were a few trees and grasses there that caused me some allergies, but overall I was able to get a handle on my allergies there. Actually it wasn't much of an issue in the last few years. My naturopathic doctor helped me a lot, and my lifestyle changes meant I reacted a lot less to allergens. 

But South Carolina? Wow. The thick yellow layer of pollen on everything was really intense for me. Add that to high humidity, high heat, and bugs EVERYWHERE. So. Many. Bugs. I'm honestly not looking forward to my first spring here... I hate dealing with the bloody noses, excess congestion, itchy eyes, cough and sore throat, hives and rashes... 

Wait, what?: Sept. 12, 2013 (waitwaitwhatwhat.blogspot.com)


7. I had to learn a new place, and the learning curve is exhausting 

When you have ME/CFS, it's really important not to create new stress. I learned Bismarck, and I was able to keep up with changes there. Learning this new town, new region, and new state has been really tiring for me. The little things add up and cause big problems in ME/CFS: poor sense of direction leads to confusion and inability to learn streets, not being able to remember where something was, trying to remember names of all these things places, and so on. Poor cognitive function and memory is a hallmark of ME/CFS - I do a lot better remembering old information than I do retaining new information. I need to invest time into understanding new information, and I need to read about it a lot over time until it becomes solid in my brain. So I just need time to learn this place... 

And then there's learning the culture - the big picture, and all the smaller communities. Gaffney itself is considered "Deep South," which is a culture, not a location. The big towns nearby are not "Deep South," and there's quite an obvious cultural difference. A lot of it makes sense, and a lot of it is new to me... and learning how people here think has been a mental exercise for me. 

Moving to a place where people hit your mailbox with a baseball bat while they drive by. They throw their beer and soda cans into your yard as they drive by. There are no laws against smoking anywhere outside. There's no regulations on the types of vehicles that can drive on roads. It's.... an adjustment. I will never take for granted when people respect each other... 

December Doctor Appointments Part 2

Part 2 about how my doctor visits from December went... I haven't been able to even consider writing this until now.

I got thrown so off balance from that trip that it's nearly March and I'm still trying to reclaim my balance and stability. Going off all my supplements and cheating a bit on my diet really upset my body. It's been a roller coaster ride of extra long PMS (about half the month), mood swings including total lethargy/ apathy and depression, weight gain, fibromyalgia flares like I used to get before going to see my doctor for the first time, inflammation and sore joints, lots of gut irritability, extra dry peeling skin, increased sensitivity to light and sound, feeling jumpy and easily startled, continued palpations...

But honestly, the worst of all has been my temperature issues. I've been freezing to the point of shaking while sitting in an extra hot bath or in front of the space heater. My skin will turn red or swear, but I still feel hypothermic internally. I can't even feel the heat on my skin sometimes. Other times I'll feel like I'm running a fever, but if I let my skin be exposed to the air my skin will freeze. It's torture - I can't feel comfortable!

In the last few weeks I've started to have what I think are increasing histamine issues. Any food I eat is leaving my skin itchy with occasional small hives or welts, but worse than that is it leaves me fidgety. I can't sit still without feeling the need to squirm, like ants crawling in my blood stream.

Over the past week I've been fighting low blood pressure too, to the point that even salt and licorice aren't helping enough. Exercise raises my systolic about 5 points, but not my diastolic. I question the accuracy of my blood pressure machine a little bit, but it hasn't given me a reading over 95/55. The thing is... the readings feel accurate. I never feel truly sleepy - "tired" to me feels like I'm overspent but still have to burn off a chocolate bar before I can fall asleep (I don't eat sugar.) This week I've been feeling so sleepy often, and caffeine is making it worse. I'm fairly confident I crashed my adrenals. Again.

I'm fighting to regain stability. My body was really relying on my supplements and diet, and now I'm afraid to even consider stopping them again.

So was it worth it? The not taking my supplements and cheating on my diet for weeks so I could see a neurologist?

Well... I don't know yet. Dr. Cohen was great to work with, I really respect him. I don't have conclusive results from the testing yet, though. Based on the Zio Patch results he wants me to go see a cardiologist. I'm going to go, but I can't afford to go quiet yet. I also want winter to be over before I do more traveling. I've seen lots of cardiologists in my life for my Pulmonary Stenosis, and I'm tired of hearing the same thing from each one: "Not quite normal, but you're okay, I think, so just come back in a year to redo the tests." I think it's finally time to see a specialist - a cardiologist who is Dysautonomia literate. A cardiologist who can explain my heart rate issues. Someone who can actually tell me what's not quite normal and what to do about it.

I think what was worth it was getting the Zio Patch test done so that a cardiologist can worth with me right away rather than just doing more testing. My Zio Patch showed some issues. But I also have some issues with it.




The problem is that I clicked the button to record a symptom way more than it says. I was told on the phone that I didn't click the button during some of my heart's biggest results, therefore it wasn't considered to be problematic on my test results. The problem is, I'm fairly sure the Zio Patch only recorded about half of my button presses, so I'm willing to bet I did actually press the button during those times. It infuriates me. Their diary log for why I pressed buttons wasn't large enough, so I included a note page full of why I pressed the button. That note page was clearly ignored. But the results I do have do show problems. I just don't know if these results are concerning enough to get a cardiologist to take me seriously.

So no, I'm not sure if it was worth it yet. Either way, the Zio Patch left me a horribly itchy nasty rash for 2 weeks after I took it off, and that was tormenting at times. The rash crawled up into my neck and arm pits, so it wasn't possible to just ignore. So I need the results to be worth it to make up for that rash! :)

As for my other tests...
Lyme testing showed a past mycoplasma infection and one or two bands positive for Lyme - can't remember and can't find results. Either way, 3 bands are needed for a Lyme diagnoses. Yes, I did do the Quest testing, not the Igenix. It's very possible this test wasn't sensitive enough, I know. I chose to do the Quest testing knowing all this due to cost and availability. I knew it might only be a starting point.

The echo? Well no one ever contacted me to give me results. My doctor said he was told the results didn't show some other disease. The nurse that performed the echo was the only person to tell me he saw the valve with the Pulmonary Stenosis. So I know it's still there, at least. I'm hoping that the cardiologist I see can review the results for me.


Up next is my hearing with the judge for my disability case. 2.5 years of appeals are leading to this hearing. I don't have much conclusive evidence to present to them, just lots of doctor visits and labs. I know people who have won with less diagnoses than I have, but I highly doubt I'll win - at least not here in North Dakota. They don't normally give disability to people under age 50 because they say "young people are resilient." I'm not totally bedridden or in a coma, so therefore I can do some type of work. They have no understanding of how disabling chronic fatigue is, and it's been very obvious through the whole case. I keep arguing about the fatigue (and I am officially diagnosed with it), but they kept denying me saying the fatigue isn't "severe enough." They don't have a clue, and they're not trying to listen to my doctors or look at me themselves. I'm ready for it to be over. The stress the case has caused me has not helped at all. I often wish I never applied at all. I felt pressured into trying to do something for our financial situation, but this case has been more work than I've been able to handle.

Anyway, I'll update this blog when I have a plan for the cardiologist... yay... I'm so exhausted. I just want my life back. I don't want my life to be about my health anymore. Tired of this. I just want to be a person that can work towards life goals and dreams again. I want kids, I want to own a house, I want to be able to brag about achievements in my career... I want a career... yeah. I'm tired of this.

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.

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.

Source of Mold - My Reaction

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

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


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














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

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

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

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

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

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

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

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

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.

Recipe: Stuffed Cabbage Leafs

This is a break from the norm and is a recipe post. I'm in New Hampshire visiting my parents and wonderful doctor, so what better time to write a food post?



Cabbage stuffed chicken fried cauliflower rice with sunflower seed butter sauce! Yep, its a mouthful. I don't know a better name. Thai cabbage dolmas? Israeli dolmas with sunbutter sauce? How about just a picture of it:

Why this recipe? Because there aren't enough recipes online that are comparable with my strict limited blood type O high protein diet. I want to change that. 😇 Also, because I made this one up as I went, so I figured it was worth sharing since it turned out well. This recipe is also great because it has a lot of flexibility for food allergies and dietary needs. I'll include options along the way.


I made this in my parent's small kitchen with very few tools. At home I would have used a food processor and whisk, but here I used a cheese grater and a fork. And a pan that was too small. So there is no need to fear owning the right kitchen tools.


What you need:


- A carrot
- Fresh ginger
- Cauliflower rice or actual rice
- Peas
- Meat or tofu or eggplant cubes (I used finely diced chicken because I need meat.)
- A head of cabbage
- Nut butter (I used sunflower seed butter, but almond or cashew butter would probably work very well too. Tahini?)
- Coconut aminos or soy sauce or fish sauce
- Whole fat nut milk or yogurt (I used coconut milk. I wonder if a whipped avocado would work instead. A boxed nut milk might work, but I can see it being too thin.)
- Apple cider vinegar
- Coconut or Avocado or sunflower seed oil
- Seasoning (I only had cumin and parsley to work with, I would say a good curry, masala, shwarma, or other middle eastern blend would work great.)


Note: There's no reason why you can't add more diced vegetables or even throw in some almond slices. This is not a scientific formula. If you love okra, by all means, include some. You could use sausage as your meat option. I think scrambled egg would also work well. I formed an outline for a recipe that can be altered easily.  I realize this type of recipe is already common, but it usually requires ingredients that are not allergy or diet friendly. The important thing to note is that it tastes good for as simple as I made it - this isn't bland or boring for the lack of ingredient variety. Also, keep in mind that you shouldn't combine starchy foods with proteins. That's a recipe for digestive disaster (like the good 'ol American hamburger.)


First, how to make the sunflower seed butter sauce:


Put two spoonfuls of sunflower seed butter into a bowl. Add the same amount of coconut milk (or try a whipped avocado.) Pour in coconut aminos to your liking, I probably used 2 tablespoons worth, maybe 3. I didn't measure. Add a table spoon of apple cider vinegar. Mix very well. It should have a thick syrupy consistency. If too thick, add more milk first, then add more oil. Taste test it.

How to make the cabbage dolma:


0. Go to the farmers market and buy the big $7 organic cabbage. Or just grab whatever cabbage you have around. I'll have enough cabbage for 10 of these - I couldn't find a smaller one at the market! The size of the leaves were my mom's inspiration for making a wrap. I took the idea and ran with it.


1. Gently peel off the cabbage leaves, one at a time. I pulled off 4 and it turned out to be the perfect number, but again, my cabbage was huge. They will not want to come off easily, and you will likely rip them. That's ok, as long as only the edges rip. I cut the base of each leaf and peeled from the base first, then loosened up the outside of the leaf. There's probably some trick to peeling off cabbage leaves, but I don't know it.


2. Place the leaves in a large enough pot and boil or steam them. As you can see, mine barely fit.  I let them steam for the entire cooking time, which was about 30 minutes. The idea is to get them soft, no longer crunchy.

3. Start frying the cauliflower rice or actual rice in a pan with plenty of oil (I used 3 table spoons coconut oil.) I don't eat grains, so I can't give advice on making fried rice. I do know that cauliflower rice is moist, so it needs time to dry out enough to fry. I had it on a medium high heat until dry and slightly brown.


(To make cauliflower rice you simply throw cauliflower in a food processor or blender and grind it up into small grains. I didn't have access to one this time, so Mom grated it on the cheese grater and it actually worked really well, just took more effort.)

4. Grate the carrot and ginger with the cheese grater and mix them. Use as much of each as you want. I can't tolerate a lot of carrot because it acts like sugar in my body, so one carrot was plenty for me. I recommend a lot of ginger here. I used 3/4ths an average palm-sized root and liked it.

5. Add the carrots and ginger to the cauliflower rice, turn the heat down to medium low.


6. Add desired seasoning.


7. Chop or shred your meat / tofu/ eggplant, then add it to the pan. Optionally, you can cook this separately to brown it, but I threw it in raw. I need my vegetables cooked down far to digest them, and they got cooked down enough by the time the chicken cooked fully.


8.  Add in the sunflower butter sauce after the chicken. Stir well, keep mixing the mixture.

(Poor lighting, sorry!) 
9. Carefully pull the cabbage leaves out of the pot with a spoon, not tongs. Tongs will rip it. I placed them on a paper towel to absorb the water, then put it on a plate. Spoon the fried cauliflower mix into the middle of the leaf, leaving plenty of space for folding. Optionally, squeeze lime juice on at this point. I thought it was a good addition.

10. Roll the leaf. You'll figure it out. It will stick and stay sealed if you left enough room along the edges of the cabbage leaf. Optionally, you could drizzle more sauce on top.


11. Serve and enjoy!

 

 

Anger

I'm not handling this at all. My anger is beyond my control.

6 or 7 years ago, I don't really remember, I tried taking Zyrtec for one week for my seasonal allergies, which were a pretty big problem in when I lived in Boise. I love Boise more than any other city in the country, but I can't deny that my allergies are strong there. Zyrtec made me so angry that my husband hardly recognized me anymore, and made me stop taking them. After a few days my anger cleared up and I was back to myself. It made me horribly uncomfortable in my own skin, and I hated everything. Nothing would go right, people were stupid, I was irritating myself, and I couldn't enjoy anything I normally liked.

Eating corn always gave me the same reaction: anger. I'm allergic to corn, and it gives me lots of symptoms, but anger was always the strongest. It makes me feel like everything is stupid, I hate life, people are the worst, I don't belong anywhere, and nothing ever goes right.

During the past two months, I've felt exactly the same while suffering PMS... something abnormal for me.

These last few days I've felt exactly the same, but no PMS or Zyrtec or Corn. I'm out of control. I'm having crying fits, rage fits where I just want to punch things, and I break down really easily. This morning I spent an hour trying on all my clothes looking for something to wear to church, the more I tried to make any of my clothes work, the more I broke down until I totally lost it. It's true that I have a serious clothing problem - clothes just don't fit my body, they're either too big or too small. But I was so emotional and angry that I gave up on even trying to go to church. Letting go of the plan to go to church has calmed me down a lot and I'm not so stressed out anymore. I want to get angry over my church problems too, because even when I do go I'm taking a major risk of getting sick.

I did, however, have a series of exposures this week. There were a lot of customers reeking of cigarette smoke at work - A LOT. More than usual. I was exposed to Windex. There's this stupid pain relief cream sample bottle in front of the cash registers at work that has a very very strong synthetic peach fragrance to it. I've done everything in my power to hold my breath or get away when people take a sample of it, but needless to say, that often doesn't work. No one takes me seriously when I say how that stuff affects me! But, I'm just one very part time employee, so why would my needs matter? I knew this type of thing would come up at any job I ended up taking. I don't have control, and I seriously just need to live inside of a bubble. Anyway, I also went out to a kid's restaurant for a birthday party. I was shockingly feeling moderately okay the whole time I was there, just a little bit of heart burn.

I'm pretty sure that my anger and emotional issues are all a delayed reaction to all the exposures I've had this week. I tend to get delayed reactions a lot. That pain relief cream gives me a headache and mild heart burn immediately, but I do end up pretty angry a few hours after exposure.

And this is why I've decided against going to church this morning. I don't think I have the ability to handle yet another exposure. It would be a huge risk. I also have so much trouble focusing while at church anymore because I'm slightly paranoid about people. People scare me - they're not within my control. And I'm getting worse and worse for whatever reason, and I hate being sick. I'm so done with this chronic sickness! I don't want other people to unknowingly make me more sick.

I just want to punch something.

And the weird part is that for several years I didn't get angry easily. I often recognized that I should be angry over something, but felt numb to it. I got annoyed very easily, but anger was rare. I was numb to a lot of things - at the time I figured it was because I trained myself to be that way since I was working some minimum wage corporate jobs, and it was easier to be numb than react to everything. Now I get angry too easily all the time, and I'm sure it's because I'm healing. Anger is a reaction my body is able to have again. Experiencing anger so often sure doesn't make me feel like I'm healing, though. I think I might rather go back to being more sick, but numb. I'm experiencing everything too strongly now, and it's sucking my energy dry. I don't even have enough energy to do what I need to do!

Back to my clothes. It's a serious problem. My bra size is too big, and it's very hard to find tops that fit. If the shirt fits my bust, it's too big on my stomach. If it fits my stomach, it's too tight on my bust. And to make matters worse, my bra size is very hard to find, pretty much impossible to find in natural fabrics. I react to polyester and nylon, which most of bras are made from. So I have two cotton bras that do not fit me properly, but I force them to work. They both shape me poorly, and I'm very self-conscious about going out in public while wearing them. I wear and apron at work, which actually helps a ton because it covers me up. Pants are just as hard. For several months, I was fitting size 6 really well. Then I want on the candida cleanse, and I've gained about 15 pounds back, but mostly in my hips. Now most pants that fit my hips are too baggy around my legs, and pants that fit my legs are too tight on my hips. Right now I have one pair of jeans that fit, but they look really stupid on my legs. I have some cotton capris that start out too tight in the hips, but after a few hours they stretch out enough in the right places and fit me pretty well. This problem is infuriating!

I have so many little problems that add up to life just being one giant problem for me. Of course I have legitimate reasons to feel angry! But most of this anger isn't about anything - my body is angry for the sake of being angry.

I could seriously go for a hike through the Idaho mountains to a secluded hot springs where I could spend the day. Nothing sounds more relieving. And I really really need some relief.

I see my doctor in about a week, thank God!! If nothing else, just being in his office helps me so so so so so so much. I don't react there since it's a safe place for those with MCS. I wouldn't mind spending a week in his office without ever leaving. I'd love to rediscover who I am without the influence of things I'm sensitive to.

Perfume and wheat is a painful combonation!

I'm treating this post more as a record for myself, but this experience is worth sharing.

Let me begin with this statement by Dr. William Davis, author of Wheat Belly:

As a Roman Catholic, one of my biggest contentions with my religion is the use of modern wheat to make the hosts used as the Eucharist. My issue isn't with the transubstantiation itself, it's very simply with the use of modern wheat, which isn't even the same type of wheat that was in the bread that Jesus broke at the Last Supper. I think the Vatican needs to hire a nutritionist to compare the type of wheat the Jews ate in 32 AD to the new strain of wheat we're served today.  (If you read Wheat Belly by Dr. Davis, you'll learn that the wheat in Jesus's time only had something like 24 chromosomes while wheat today, which is an intentionally dwarfed modified version, has 48 chromosomes - lots of differences - but I have not verified these numbers to make sure they're correct, so don't quote me.) Since the theology of the wheat is so paramount to the Mass, shouldn't the church explore what the correct wheat to use is?

The reason for my theological thoughts are due to my choice last night (though this is an issue I've been struggling with since my doctor had me go grain-free.) Since going grain-free over a year ago, I have rarely taken the Eucharist, knowing any wheat at all would mess with my body's ability to heal. Every time I ate the Eucharist, I did notice a reaction of mild heart palpitations. Last night I took the Eucharist again, hoping a mild allergic reaction (because I am actually allergic to wheat) would be the worst of it. This time, the effect was much worse.

Let me back up a bit first. I was already feeling a bit ill when I went up to receive the Eucharist.  As you know, I'm intolerant of perfumes and other chemicals. A heavily perfumed woman sat next to me at Mass. I was very frustrated, because I waited right before Mass started to take a seat so that I could carefully choose a seat away from people wearing perfume at the end of the pew. I found a great spot, and then about 5 minutes into the Mass this woman, without asking, suddenly stood next to me and gave me the "make room for me" look. She assumed I would slide over so she could sit next to me at the end of the pew. The problem is that it's normal to slide over to make room for people, so her expectation that I would move over for her was normal. I didn't know what to do - I slid over and let her in. I didn't want to be rude, it was difficult to talk to her because the Mass had started, and I didn't realize at first that she was heavily scented. A few minutes later I started to notice the smell of bananas (yes - she smelled like banana ice cream, of all weird scents) radiating from her, and about 15 minutes later I was feeling pretty ill. There were several points where I wanted to get up and find a new seat, but looking around, I didn't see any better options. The sanctuary was packed. It's also very difficult to walk around discreetly in that church - everyone would notice if I got up and walked around. So I decided, for the sake of an experiment, I would sit next to this lady all of Mass and see just how bad my reaction to her perfume would get. My eyes were burning, my brain shut down, I was really fatigued, my eye was twitching, and I had mild heart palpitations. I made it through Mass, though, and I didn't get to the point where I "couldn't take it anymore." I wasn't feeling well, but I was functioning well enough to make it through Mass (though I had zero focus for the homily.) I think this means that my chemical sensitives may be improving - I am, after all, on a remedy that should help lessen the reactions. (Have I ever mentioned how helpful my doctor is? :) )

Keeping the fact that I was already reacting in mind, the Eucharist made me feel more ill. I quickly had worsened heart palpitations. After getting home from Mass, I noticed my gut was starting to ache. I soon had painful, sharp gut cramps and started to bloat. My bowel was irritated in several ways, and I couldn't seem to reduce the pain. I drank plenty of lemon ginger tea, took some enzymes, took some anti-inflammatory supplements, and even took extra probiotics. Nothing helped. I went to bed hoping I would feel better in the morning. I did sleep fairly well for 9 hours, thankfully. My gut, however, wasn't feeling much better this morning. Several trips to the bathroom revealed just how irritated my gut actually was. I also have been in a horrible mood all morning. I've been angry, aggressive, frustrated, unhappy, and cynical. My skin has been itchy, and my muscles are aching and pulsing. This post is partly the result of trying to get my agitation out - I needed a venue to complain.

I don't doubt that the MCS perfume reaction made the wheat reaction worse. MCS reactions have triggered digestive issues, such as heartburn, for me before. I do know, however, that many people report having similar reactions to any grain, especially wheat, after being grain-free for a year or more (like I have.) Wheat is known to be very harsh on the gut, causing IBS, leaky gut, small bacterial overgrowth, candida, and more gut problems. I had many of these issues before going grain-free, so it's no surprise to me that consuming wheat can make this problems return.

As for the problem of receiving the Eucharist, I have already spoken about this with priests and friends who have a solid theological understanding of the Eucharist. If you are reading this and want to discuss this dilemma with me, please contact me and I'll let you know what I learned. As much as I love to discuss theology (it is, after all, what my degree is in,) this blog isn't meant to be about theology.

My Back Story on Food and Diet in My Life

I've been struggling with how to delve into the topic of diet. As I've said a few times on this blog, it's a major subject in my life. It needs a good introduction, because it's really just that huge of an issue in my life. The trouble is, I'm not a doctor or nutritionist. I've learned that every person is very unique, and a diet that works well for one person may work poorly for another. There are facts that are true for everyone, but the details are where we all differ.

There are a few angles I could take on introducing diet on this blog, but I think I'll introduce it through the lens of chronic illnesses. Generally speaking, I believe most people that read this blog probably are here searching for answers about health concerns.

5 years ago, if you would have asked me if I believed I would ever develop a chronic illness, I would have said "not likely." If you would have asked me why, I would have said, "because I eat a clean, organic diet. I'm careful about what I put into my body. I'm investing in my health. It's all the food additives that make us sick, right?" I know a lot of people who would have given the same answer. Well, here I am today, fighting chronic illness, even after that clean, organic diet I ate.

I'll back up a bit. I was born allergic to about 10 different foods. My parents have told me all sorts of stories about how difficult it was to care for me as a baby because they didn't know how to feed me. They eventually found a formula without my allergens, and then thankfully I slowly outgrew most of the allergies as I got older. Eventually I was only allergic to wheat and corn, and then by 4th grade I appeared to only be allergic to corn. (In recent years, however, that wheat allergy has made a come-back.) This corn allergy resulted in many painful hives, rashes, heart palpation, fevers, gut aches, severe anger issues, and more. The problem with corn is that it is in almost everything. I grew up learning to read food labels, being very careful and selective in restaurants (avoiding many restaurants too,) saying "no" to any food I wasn't sure of, and saying "no" to food that friends insisted was corn-free (because they often don't know all the different names for corn on food labels.) I grew up being used to bringing my own food with me, knowing I couldn't rely on others to feed me safely. To me, reading food labels is normal - it's second-nature. I never buy a single product without reading the ingredients first, even if I've bought the item before (because companies change their ingredients every so often.)

I was introduced to the world of organic food when I was a young teenager. My mom found it harder and harder to find food that was safe for me (other than meat and vegetables - but I'll get into the problem of corn in meat later,) so she tried searching in local food co-ops. We quickly found that organic and natural brands had less corn overall, mainly because they don't use high fructose corn syrup. As I grew older and more independent, I started buying my own lunches and snacks at the local food co-op, because it was organic and safe. The older I got, the more of a habit only buying organic food became. I knew that I felt better when I ate organic, but I also did a lot of research into why organic was a better option. I learned about toxins in food, how dyes cause brain and reproductive dysfunction, why corn syrup (which wasn't proven safe) was in everything, the danger of GMOs, and more. I was quickly converted to eating strictly organic... except for the treat of getting to eat out. I considered it my "cheat time."  My husband knew this about me when he married me, but I think he was in a for a shock when he found out what it actually meant to buy only organic foods all the time - ha!

So, how it is, you ask, that after a lifetime of reading food labels and avoiding all forms of corn and food additives that I managed to get chronically ill? Shouldn't I be really healthy since I haven't been poisoning my body like most people in America? Well, there were signs that my diet wasn't working for me, such as the fact that my weight increased to almost 180 pounds despite plenty of physical exercise, drinking my healthy kobmucha drinks, never drinking soda, and all those good things. (I'm 5'5", so this was very overweight.) Heck, I was even dairy and gluten-free - so should I have been losing weight? The question I'm asking myself now is, "Would I have been way more sick than I was if I wasn't eating carefully all along?"

Last year, I learned many valuable lessons about food, with the help of my naturopath (who is a huge blessing to me.) First of all, I was eating tons of foods that my body isn't capable of tolerating. Organic or not, I can't digest them well. Second of all, I can't handle sugar - sugar is a strong poison to me, and I used to eat more of it than I realized. Third of all, I was eating lots of grains, which I now know cause all sorts of horrible problems for me, such as inflammation, irritable bowel, leaky gut, and more. Fourth of all, I found out that I wasn't eating enough of what my particular body requires to stay strong and healthy. I learned a whole lot more, but these are the highlights.

I did lose about 20 pounds of weight before seeing my naturopath, but struggled to lose any more than that. I was still overweight. After very carefully following my naturopath's tailored-to-me diet, I lost an additional 30 pounds. I'm down to around 130 pounds, which is a healthy, normal weight. Weight loss wasn't my goal, though. My goal was to get my life back - I wanted my health back! Thankfully, I have been reclaiming my health in the past year since starting treatments with him. I no longer suffer arthritis, major inflammation issues, or fibromyalgia. I have a lot less brain fog and more energy.

Again, this is just a general overview - an introduction. I'll write about details in future posts.

In conclusion...

Diet is an exceptionally important part of our health. Just because you eat organic doesn't mean you eat healthy, in fact you could still be eating too much trans fat and sugar. Just because you're a vegan doesn't mean you're eating right for your body and your specific needs, in fact you could be hurting yourself more than you realize. Just because you eat Paleo doesn't mean you're avoiding enough foods, in fact you could still be eating foods that cause health issues for you.  You need to learn your body and your needs, and eat only according to what your body needs, not how diet fads tell you to.

Most importantly - stay positive! Dietary changes aren't a "loss." They're an opportunity to feel better so you can experience life more fully and joyfully! Diets aren't "limiting," they're actually opening you up to a world in which you can fully function and feel great. As I talk about food, never assume I'm complaining. I'm actually extremely grateful for my food allergies, because they prepared me for making the lifestyle change I needed to when it came to food. The danger of modern food is a scary topic in most situations these days, but for me the topic of food is a joyful one, because finding the right food for me in this toxic society has changed my life for the better.



P.S.: Want to hear a funny story? One time, when I was a teenager, I was at a sleep-over party with friends. One friend asked if I could eat popcorn. When I said no, she asked, "Why not? Does it have corn in it?" I said, "read the ingredients, you'll see." The first ingredient was corn, and she said, "Ohhhhhhhhh..... duh!" I forgave her and we laughed it off.

This is one of many examples of why I don't trust other people to make food for me. :)