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This is an interview with Solona, a fellow Canadian, who I have known in the online world for a few years. I have followed her journey from severe MCS, to planning effective toxin avoidance, to 85% recovery in just 4 months. She’s still in the journey, but is recovering quickly.
I wanted to interview Solona because she had and overcame the key bottlenecks which are:
- Assuming she was already avoiding mold
- Making an avoidance plan with brain-fog
- Finding a safe home to heal in
We talk about a couple books in this interview – the Beginner’s Guide to Mold Avoidance by Lisa Petrison, and Bryan Rosner’s book Lyme Disease Supercharge (which is actually about Mold Avoidance). I want to add Julie Rehmeyer’s book Through the Shadowlands to this list of helpful books in this journey.
Corinne: This is my first interview. I want to do a healing from MCS, mold illness, healing from CFS series.
I want to talk about the journey from severe MCS, to quite a rapid healing journey.
STARTING WITH SEVERE MCS
I want to inspire other people who are starting out, who have high MCS, who want to go further with avoidance in order to get better. Not to just avoid avoid avoid and go in circles.
Is that correct, would you say you had severe MCs, I remember you talking about fragrance residue on packaging.
Solona: Oh definitely.
C: Did you have any other symptoms like fatigue?
S: I was diagnosed with CFS, I think about 20 years ago. I was bedridden for a few years. At my very worst, the scariest symptom I had was paralysis, especially around gasoline. I would lose the use of my limbs and I couldn’t walk or use my arms. And then I would get slurred speech. Those were the scariest symptoms. Then the garden variety ones also.
C: And I remember the forest fires, was that a big turning point? We are talking about the interior of British Columbia, Canada. The fires hit hard, 2 years ago, was it?
S: It was last summer. The big clue that this was mold, was that I relapsed after nearly 10 years of being mostly recovered. After being in Ontario. I went to Ottawa for a job. It’s really bad there and I crashed within about 2 months. I moved back to my home in BC to get well, then the forest fires hit in 2018, and even when they cleared I did not recover.
C: So Ontario was worse
S: Ontario was what made me crash, for sure.
BOTTLENECK 1: ASSUMING ALREADY AVOIDING MOLD
C: One thing I found really interesting ….We were both in the Canadian groups for MCS and other groups. I have seen you over time, though we haven’t talked on the phone, I don’t know you really well.
But one thing I saw that I wanted to talk about is I have seen photos of your house [where you were really sick right before avoidance]. I think at the time you did think you were avoiding mold. Is that because it was better than many other houses? And you were able to sense mold in other houses?
S: It’s because I never knew about extreme mold avoidance. I had a very good sense of smell so I can smell mold. I had no idea about outdoor toxins or molds you don’t smell, molds you don’t see. I was living in mold and I didn’t know it. And that’s why I didn’t recover like I did before. And I can’t really explain why I was OK in that house a few years prior.
But I can say I have recovered symptoms that never went away before, now, with mold avoidance.
C: Houses get worse over time if there are errors. It wasn’t a very new house, what was it from the 70s?
S: 70s yes.
C: I’m also in BC and the houses are not well built.
A lot of other people are in this stage now – you had no visible mold, no water stains on the ceiling, right?
S: No, nothing obvious
C: No smell of mold. Did you have a basement?
C: basements are often musty, but you couldn’t get under it to see if there were any problems.
S: As I later learned, once I unmasked I didn’t really tolerate the area well for some reason.
C: When you started the more extreme avoidance you moved from one area of BC to another. Not extremely far. Some people do mold avoidance and they feel like they have to go to the southern US or even to the Caribbean.
S: I think it’s about 3 and a half hours [from the moldy house in Slocan Valley] to Kelowna [the first new location for avoidance]. The thing is, I learned through experience there are levels of unmasking. And I think I unmasked and cleared out and healed to a certain degree in Kelowna until I left went to an even clearer place [Idaho] and came back. I cleared out even more and now I don’t think I can tolerate Kelowna.
C: OK, you started in the Slocan Valley where your house was, then when you started mold avoidance you went to Kelowna and improved, and then you went to northern Idaho and improved even more?
S: That’s right. I spent a week in northern Idaho and felt incredible, and did a tonne of healing even in that one week. And then went back to Kelowna and instantly felt sick again and my symptoms got worse the longer I stayed.
C: [Going back in time again] I’m interested in that time, where you got a lot worse, you went to Ontario, probably hit a moldy building, came back and then hit the fires, and everything was really hard. But what do you think lead you to that shift [to mold avoidance]….
S: You did!!
S: It was 100% you. I was trying to find housing…..to buy a new house….
C: ….and I was like “no, they’re all terrible”
S: Yeah, well, no, it was when I decided….. I finally gave up… I looked for housing for ages, I finally gave up and made a joke that I will live in my car. So then I was posting vehicles. I put a deposit on a camper van.
I remember you said, “you don’t know what’s behind the walls”. And I was so discouraged at that point.
C: That was the one that was built out…. it was old. [Camper van build outs are very prone to mold].
S: Yeah it was old enough that it probably would have been contaminated. And I didn’t know about extreme mold avoidance, I hadn’t read the Beginners Guide to Mold Avoidance. I didn’t know all the nuances.
I was so discouraged I was like, “stop telling me the vehicles are not good!” So then that led me to actually read the book [Beginner’s Guide] and go, “ohhh now I know what she’s talking about”. I bailed on that camper van. And then changed my plan to actually doing extreme mold avoidance.
C: But you were in the mold groups, I wasn’t just coming into other groups and saying things like that! That was an extreme mold avoidance group.
S: And I didn’t know that it was different than what I was doing [already].
C: So, we’re going back to that time [again for a minute]. Houses are so difficult to find around here. You had MCS and some mold sensitivities. When you’re in that extreme level of MCS, you’re so limited. Usually people end up choosing moldy houses.
S: We are avoiding new houses because of the offgassing….
C: ….and maybe some have fragrance you are ruling out so many options, even just a cross-contamination of a fragrance.
So you were in the mold groups and the van was an idea, that van was tricky, I’m glad that van didn’t’ work out!
Then you found the most amazing vehicle of all time…
S: I researched probably 15 different solutions – inserts for trucks, medical transport, then I thought, what about an ambulance? Then that led me to the term Campbulance. I was watching van life videos like crazy to learn how to do it. I thought the campbulance would be more sterile and well maintained.
I found one being sold by the Province of BC. The Province gets rid of them every so often. I did tonnes of research and moved into an ambulance.
C: Ya, it’s such an awesome vehicle.
BOTTLENECK 2: MAKING A PLAN WITH BRAIN FOG
This is another key area. It didn’t seem like you had that much brain fog at the time.
S: Oh, I did at the time.
C: Cause now you can see the improvement?
S: It’s not as bad as it was in the beginning, but I was having trouble at work….
C: This was a critical time, you did have less brain fog or more clarity [than others], you were able to sift through the information, organise the information that was in the groups.
That’s another bottleneck stage. The first bottleneck, is thinking, I’m already avoiding mold because I can smell it in other buildings. The second bottleneck is how do I make this happen. What are the options and the solutions.
Do you think that looking at the struggles of others in the groups now. Do you think there was anything different about you at that point?
S: I think because I’ve been doing this for so long, MCS avoidance. I deliberately made a career I can do from home. My life has revolved around [MCS]. I don’t know that I could have done this just winging it if it was my first time, as quickly as I did it. I already had a job set up….
I also have a brain that is good with spreadsheets. I had spreadsheets with all the different vehicle options, all the features that I needed.
C: You had places lined up, you had places with wifi, since you need to work.
I listed and downloaded all of the apps, like freecampsites.net that show you where you can boon-dock, where they can show you wifi signals, I just researched all the places I could go.
C: I remember you even had a spot in case the fires did come (this last summer). Which was a lot of research.
[But], you also didn’t get into the bottleneck where you over-researched and just didn’t do anything. Like this ambulance could break down, this van is moldy, this tent might not work…
S: I think I got lucky because I didn’t do it perfectly at first.
C: No one does!
S: I made lots of mistakes but it still worked anyway. I think it just works out, you just keep doing it and it works out.
C: I think I want to stick that point a little bit, because you were able to do that strategic thinking planning comparing and get to the solution in a reasonable amount of time.
S: I think it’s a lot easier to do that when you have a sounding board, someone who is a little more cognitively with it. Now I have a few facebook friends and I help be their brain.
C: In the beginning, there are not a lot of people, and that’s why I do this as a job, there are not a lot of people who have the bandwidth and time to help the people that are in the beginning who have cognitive difficulties. I think it’s a key time for people to get help with the decision making. Especially if they are worse off than you.
Once I saw you get on a roll with it, I was like, oh, you’re gonna be fine.
S: 20 years ago I would have needed my mom, I was planning my trip to BC to get well, I told her I need you to be my brain. I think if someone is worse they need someone to lay it out step by step for them.
C: And now that you’re at the stage where you have some experience, you’re doing a little better and you can hook up with other mold avoiders who are in that stage and you can help each other. That’s a lot easier to find because you can mutually help each other. In the beginning, that’s a lot harder to find, because you’re the one in need. And a lot of people get stuck there. That’s a tricky spot if you get stuck.
BOTTLENECK 3: FINDING A SAFE HOME
[On to] the ambulance! I don’t want to talk too much about the ambulance because I could talk a LOT about the ambulance. We need to find out more, if we can find out how this was built. I think this has SIPS walls or spray foam. It is well built.
S: I asked for the blueprints but never got them. I just know it’s well insulated. A refrigerated truck is similar.
C: I want to dig deeper and I know other people are looking into custom building. Yours… I wish we could dissect it. It’s not very new right?
S: It’s a 2009.
C: It’s not too old. Most trailers don’t hold up that long [to mold]. There’s the fiberglass types. I go through all the types that tend to last a little longer but they all have their drawbacks. Yours I think is made like the older Camplites, that have a sandwich laminated wall. Or it just wouldn’t hold up this long. Maybe in 10 years when it dies, we open it and rebuild more of them like it!
That’s another difficulty – finding a trailer that is offgassed. I bought a Camplite when I was starting out, it was metal-foam-metal. I thought this would be fine. This was 8 years ago. It was so strong with the offgassing, it blew my mind. It reeked like glue. It was a well-made trailer, but I wasn’t able to use it until it offgassed. I regret selling it, because once it did offgas I should have kept it for emergencies or traveling. I just didn’t realise what a gem it was.
There are other options, vans that don’t have wooden walls and nothing in them….
RECOVERY, NOT JUST AVOIDANCE OF TRIGGERS
C: You actually made pretty quick gains…
S: I think the reason was that I spent 10 years in avoidance, and it was a pretty fast and short crash.
And this is why I knew it was mold, that mold avoidance is the reason I got well, because I spent a year in the Slocan Valley (in BC, Canada), which is as pristine as it gets in terms of MCS – no cell towers, I had the best water, the best air [in theory], and I still stayed stick for a year [after returning from Ontario], and then as soon as I did mold avoidance, within two months, I was like I’m going to go for a hike now. I went, WOW.
C: And then from there you got even better. So within the first two months… you started in Slocan, then you went to the Okanagan. Within two months you saw quite a lot of results.
S: I left in June and within two months I was slow hiking, by August I was feeling even better.
C: By now…. you started June….. it’s been 4 months.
S: It’s mid-October now, I’m in Idaho. The longer terms things are healing now. I had really bad psoriasis. My energy levels are even better. My diet and appetite are even better.
C: That’s so awesome.
Are you still sleeping in the ambulance.
S: I’m sleeping in a tiny house/cabin. That was built with MCS and mold in mind.
C: And you’re still feeling as good or better.
Yeah one sign of health is remembering my dreams and have lots of dreams, really good sleep, 8 hours. I have the best sleep now, I go walking every day, I work full time. We carry water, I can chop firewood. I can do lots of physical tasks I couldn’t do before.
C: Do you want to say what percent you are better?
S: 85%. That’s pretty subjective.
C: Yeah, some people would be thrilled with 85, and some people as they get better they will say they didn’t even realise there was another level of health.
I’ve also been sick for a long time and have trouble with those percentages.
S: I leave 15 % because I could do more intense hikes. And I also give it such a high number because some of the really scary things are better.
I can (but don’t) pump gas. I got diesel on my hands and brought it inside, and though, “oh, that smells bad”. And I was perfectly fine. For me that was a huge huge leap.
C: I don’t think people know I was as extreme as you, or close. I was floored by having someone else pump my gas [at my worst].
S: I went dancing and it was a room full of perfume – when I was really bad I would have been really sick after 5 minutes. In this case I actually danced for I don’t know, maybe an hour. Then I did get sick but I was able to step out and be OK. I’m not perfect where I can dance in a perfume room for 3 hours.
C: It’s [still] a lot of progress in a short amount of time. It’s taken me a lot of years to be OK around perfume. And everyone has such a different journey. It’s really hard to say how it’s going to go. Some people, their MCS disappears almost immediately, though they might not have been as severe as us from the beginning.
For people as severe as us, it’s not unusual that it’s going to take some time. Fast gains are always exciting though.
FINAL MESSAGE FOR THOSE WITH MCS
S: I think the one and only thing I wish the people with MCS knew, is that mold avoidance isn’t necessarily what you think it is. It took me years to realize it’s not what I thought it was. [Understanding the role of] outdoor toxins is HUGE. Understanding it’s not a smell. At least giving it a shot. I have heard a lot of people say I’m already avoiding mold. Which is what I used to say. Then realizing, oh, I really wasn’t.
I think the best way I can explain it, it’s not just your everyday average mold, it’s “super toxins”. And avoiding those is a bit of an art form, but it’s worth learning and at least giving it a shot.
C: I agree. What I see is that people with MCS and lyme are aware of mold. They are aware of the offgassing, the fragrance, toxins in the outdoor air. [All the toxins out there]. But some toxins are more destructive. If we can take out the bigger ones….
I will link to Lisa and Erik’s book, and Bryan’s book, I should add Julie Rehmeyer’s book as well, Through the Shawdowlands which is also very helpful. They talk about taking out the master toxin. Mold is one of the really key ones. Fragrance isn’t the master toxin. You won’t get out of this by avoiding fragrance.
I know for sure from watching this for 10 years.
You can contact me for one on one help with problem solving for mold avoidance or finding safe housing.