My illness has so many components to it, with so many pieces of various illnesses with various names, like FM, IBS, EI, MCS, CIRS, it is ridiculous. With all the acronyms that fit me, I could make an alphabet soup. But for an overall name, I now feel comfortable with CFS–Chronic Fatigue Syndrome.
Legitimization of this illness is a big deal. The article above shows that the CDC not only mentions mold and chemicals but also explains that this illness is not psychological and hints that this illness is also not caused by de-conditioning (lack of exercise).
I chose Chronic Fatigue Syndrome (CFS) over Myalgic Encephalomyelitis (ME) simply because it is easier to say. 🙂 Of course, “fatigue” does not nearly describe what we go through. Chronic Crash Syndrome or Chronic Exhaustion Syndrome would be better, but I will take what I can get. I feel there are just as bad or worse problems with other names for my illness or parts of my illness, such as Multiple Chemical Sensitivity–“sensitivity” is not strong enough for any version of MCS except mild MCS.
So with the name CFS, a medical professional, new friend, or whoever can immediately get good information on CFS from the US government. This is a good place to start.
If I am talking with someone who seems interested, I might say I have CFS but it is not exactly what it sounds like–it is not the same as being tired at the end of a work day or having a season of fatigue from working hard or not sleeping enough. It is more like–though not completely–having the flu for months and months. Or like exercise ignites a monster within to damage the body (post-exertional malaise, or PEM also mentioned in the article) until and if one gets clear of the problem substances–for me, mold and chemicals; for others possibly infections or other xenobiotics, though I will admit I think mold plays a part far more often than not, partly due to the often-hidden and widespread nature of mold. Plus the original CFS Syndrome was highly linked with mold: https://paradigmchange.me/erik/ I might even dare to begin explaining this part as well, if it seems the person has an open mind. Once a person gets clear enough, exercise does help, which has happened to me several times. (But then I have been hit again by toxins or toxicants. I am recovering from another one and hope to do real exercise again soon.)
So, there you go. Good news on CFS. Making progress. Many voices speaking the truth, so eventually it will get out there.
Christa Upton Black Hills Picture Books Edgemont, SD 57735
I just found out Mom can come for another visit in a few weeks–yahoo!!!!!!! So between that, kids’ birthdays coming up, holidays, etc. I will not be blogging until January (probably).
In the meantime, do feel free to private message me on my personal and business Facebook pages, and I will do my best to reply. I sure do like trying to help with mold and MCS problems, and chatting too. 🙂
Christa Upton Black Hills Picture Books Edgemont, SD 57735
Please check out these camping places for yourself. Environments change, as we know. Campgrounds change owners. Stuff happens. But maybe this at least gives you a place to start. You can call and ask questions. Many campground owners are happy to help. At the time, the only one of these that used herbicides was the Game Lodge Campground.
One note: I have never, ever reacted to water in the Hills, but I think many others have, sometimes really severely. I do not know if the area is free of cyanobacteria or such, or if I am just 0% reactive, but I have been in or near many lakes, rivers, and springs here with no problem at all. I usually feel better after a dip. Several of these campgrounds are near water.
Also some people who did not do well in the Hills may have had MCAS, which I do not have.
This is a long post, but I wanted to give all the info. at once to be handy. Feel free to ask questions. My “comment” website thingie doesn’t seem to be working, so you can email me directly at: steveandchrista@yahoo.com.
Each link will be followed by a photo of ours (if we have one) and my notes.
I stayed in the Game Lodge Campground in one of the cabins in July 2011, October 2011, November 2011, February 2012, January 2015, and in our RV October 2012. The Game Lodge campground was the only campground in Custer State Park where I did not react to outdoor mold in July. (I did not test in the fall, and I assume winter is fine regarding mold, but Game Lodge was the only one open in the winter.)
The window a/c unit was moldy, so I did not use it. But, most nights here, the temps drop about 30 degrees. This means that even on 100 degree days, it will get down to 70 or so at night. Last night (August 6, 2018), it got down around 55. 😊
They spray herbicides for leafy spurge by the river, I think in early spring, but I did not react by July. They also spray herbicides on the field nearby, but I was there even in April and was fine. Maybe they had not sprayed yet, or maybe the “wind tunnel” of the highway carries things away.
They spray for pine beetles, but they said that was in the deep woods areas where tourists would not go.
In July, I had a lot of trouble with campfire smoke so had to keep cabin windows closed until after midnight. (Hello, free sauna. Remember the a/c was moldy.)
By January 2015 my MCS was super, super bad, presumably because I could not stay away from chemicals enough to get above the power curve for my body. So, I almost felt like–in the cold air which keeps things closer to the ground–I was negatively affected by the oil refinery 50 miles almost due west, because I felt similar to when I was closer to the refinery. But I could be misinterpreting.
This place was one of my favorites. We did stay there during a burn ban (very dry so no campfires) and off-season (September). But I was even able to have lunch in one of the campers they rent out, which a friend was renting. No herbicides at the time, great area, more secluded and pretty than some campgrounds.
This little campground is right on Hwy. 16, which has a good breeze which I think helps air quality. We stayed on the west end to hopefully be on the upwind side of propane and campfires. At that time, they did not use herbicides and purposefully let the wonderful dandelions grow! 🙂 (The bees thank them, too.) At that time, they were not keen on children long-term (like weeks or a month), but there is not much space and nothing to do right there, so I cannot blame them. 🙂 But I enjoyed the air while I was there.
This one is high on a beautiful hill, lovely air. He sometimes sprays his trees in spring, but I did great by July (3 months later). Lots of wind and frequent summer thunderstorms are a little rougher here in tents, since it is up high and not many trees. He uses fly pesticide in the attics of his cabins, but I even went inside one for a few minutes, and it wasn’t that bad, so I am thinking it can hardly affect outside, if at all.
Here, I reacted to outdoor mold in March and April enough that I could not stay. (And in February I reacted I think to propane and probably new wood varnish in the cabin where we stayed.) By June it was pretty good and July was great. Plus, I do think that many moldies would be able to tolerate that outdoor mold. I am just very sensitive. It makes my heart beat funny.
We used the Laundromat without too much trouble, although this was before my MCS was super, super bad. The old owners and I think the new ones also use more natural laundry products themselves. I even survived standing INSIDE the Laundromat for an hour during a tornado watch. 🙂
This campground has no electricity at the campsites. The trouble with this is that RVers get out their generators. At the time, I was very sensitive to exhaust, but I was able to stay in one of the tent sites up higher on the hill.
I think there is about zero mold in the whole Wind Cave Park. LOL Well, I am sure that is not true, but it is one of the places where I said to Steve, “Ok, just put a blanket on the ground RIGHT HERE, and I will stay here forever.” 🙂
I just think again, basically zero mold. Herbicides on the highway nearby, but I did really well here June and parts of July. They have one cabin where I stayed for a couple hours during a huge storm. 🙂 They were very nice to offer for us to go in. I think I might have even been able to sleep in there, with a few modifications (piling bedding in a closet or something?) But I think the biggest thing was my MCS–the cabin did not seem moldy.
UPDATE: A couple years ago, they used flame retardants on a fire across the highway from here. I do not know if it has affected the air quality. I don’t seem to react to FRAT though I’m not sure.
I loved this place because in April and August there were few other campers (a big deal because of my MCS and campfire intolerance), I LOVED floating in the river, and I loved the sheep. In late August, though, I lost tolerance for the area. I think pollution blowing down the nearby highway, possibly a new chemical used by the car repair shop close by?? (something smelled funny), possibly a loss of tolerance to the sewer treatment plant. It was not a mold reaction, but it could have been bacteria, not sure. The river was still fine for me, just not the area and the highway, all the way out to 89.
“Dispersed Camping,” Black Hills National Forest (free)
They can give you a map of where dispersed camping is allowed, but CALL to make sure about specific locations!!! I was SO EMBARRASSED to end up on some guy’s private land because the Forest Service had sold off portions and not updated the map. Good thing the guy was gracious. We showed him the map.
Our favorite spot is a little section off Song Dog Road. Peaceful. A guy came every Sunday to do some target practice nearby, 🙂 but it did not bother me at all. This is where we would go on holidays (too many campers in campgrounds) etc. Solar cooking came in handy.
Solar Cooking a Mushroom Omelet
We also camped at least 2 other places in National Forest, and at least 6 places of private land, 2 of which were disasters. The one ended up having herbicide next door, and the other I got sprayed with herbicides by a helicopter spraying railroad tracks for weeds. I was actually never the same after that. Before that, great air would make an almost immediate difference in my energy. After, it didn’t. Boy, I was sad to lose that. But, God is helping me improve over time.
Many other campgrounds we eliminated because of herbicide use or they were in forested areas we knew had more outdoor mold. Others we were surprised to find had too much outdoor mold for me especially in rainy springs. The Hot Springs KOA just had too many other campers sort of all trapped in by trees for me, making me very (scary) sick in less than 2 hours, from others’ propane, scent, etc. However, I have known other moldies to do fine both there and the Custer KOA.
Contact me personally if you want to know which buildings in Hot Springs have “HT.” steveandchrista@yahoo.com One of the worst appears to be the Courthouse, which hopefully you will not need. 😀
Christa Upton Black Hills Picture Books (outside of LOL) Edgemont, SD 57735
Steve came up with this recipe. YUM. It was so pretty, too. But I forgot to get a picture. 🙁
Dad’s Simple Garden Pasta
pasta (He used spaghetti, but you could use any kind. You could even use zucchini “noodles,” but in this case I would not pre-cook them before sauteing. Just add them in with the peppers.)
butter
garlic, minced (from your garden if you are able to have one 🙂 )
sweet green pepper, diced
Anaheim pepper (this is a mild hot pepper), diced
salt and pepper, if desired
Use as much or little of each ingredient as you want. You can even add other veggies, although this is a really nice combination.
Cook pasta according to package directions. While pasta is cooking, melt butter in skillet.
Saute peppers in butter until beginning to get soft. Add garlic and saute until garlic is soft. Be careful not to burn garlic. Stir and turn heat down if it starts to get brown.
Add cooked pasta to skillet and “stir fry” a couple minutes until pasta has picked up flavor from the veggies. Season with salt and pepper.
Serve with a nice broiled fish or a venison roast or your favorite vegan protein.
Christa Upton Black Hills Picture Books Edgemont, SD 57735
In my last post, I mentioned 9 events from fall 2016 to February 2018 that struck at my health.
Keep in mind my Multiple Chemical Sensitivity (MCS) is worse than probably at least 95% of people who have it.
I do NOT mean my symptoms are worse or my suffering any worse, I mean my “safe bubble” must be more thorough and complete.
I cannot live east of the Mississippi nor in numerous western states or portions of Canada where others with MCS live. (I am not sure about other countries.) I am not able to live in any attached housing nor even in any town, even if they do not fog for mosquitoes, like others with MCS do. I cannot live in any traditional house or RV, even off-gassed 20 years and modified. I cannot cook with or be near propane, even outside. I have reacted to everything mailed to me by others with MCS, though some of those things we made fine by washing. 🙂 I cannot go into hospitals without very serious physical effects. I cannot tolerate any masks or take any supplements at all.
Many people with MCS who live in towns or traditional houses or humid climates or farming areas (pesticides) suffer tremendously and have extremely scary symptoms. 🙁 However, with a few exceptions, they are able to remain stable enough to keep living there. They are inherently tolerating a lot more than I can without it becoming an acute life-threatening crisis for me.
So this severity explains why the 9 setbacks made such an impact to my body. Hopefully others would weather setbacks like these better than my body did, however it is possible that certain chemicals would do this to others as well. Some chemicals cause symptoms which cause setbacks quicker and deeper than others, especially when they affect the heart (as actually many of these events did to my heart). Each person is also going to have specific chemicals their body will have more trouble with.
Anyhow, the biggest setback event was the most recent. Antimicrobial and other chemicals accidentally came into the house from December 2017 to February 2018, and we did not understand what was happening at all. I call this the Big Hit. By the time we figured it out, it had given me:
violent coughing
nausea
irregular heartbeat causing fatigue, happening more and more often
fatigue and weakness that eventually became extreme (I could not bathe myself again starting around late January I think, but we kept attributing it to other things. Those chemicals may have contributed to my problems as well, but we eliminated those, yet my problems continued to worsen because we did not realize about the antimicrobials….)
After stopping the chemicals, I experienced withdrawal akin to how they describe withdrawal from Heroin. For about 4 hours, I literally wanted to die. The rest of the world did not seem real. The next 2 months were similar to how they describe the months after Heroin, too.
vomiting with the violent coughing that sort of affected my breathing, fear of vomiting
extreme brain fog
PMS-like emotions
tongue infection (like thrush) including lots of pain
digestive rhythm upset so bad it gave me sleep troubles
triple need for probiotics (antimicrobials kill off good gut/body bacteria)
increased heartburn
body/muscle pain sometimes up to level 8 and 9, one time nearing 10
increased numbness in feet, and
decreased ability to sweat. This one is really bad because sweating is needed for detox, especially when other organs are struggling.
So why did it affect me so badly? I believe mainly one reason (besides the severity of my MCS): my extreme susceptibility to this class of chemicals (antimicrobials). My susceptibility includes:
stomach problems since age 7
living near crop herbicides since age 7 (Ah, a correlation? I believe so.)
likely hereditary susceptibility
growing up 20 miles from the largest civilian exposure to dioxin in the history of the United States. Dioxin is a byproduct of antimicrobial chemical manufacturing.
not sweating much my whole life. This is a terrible disadvantage for the body keeping up with daily toxins.
massive use of hand sanitizer for child’s special needs from 2005 to 2009, including while vulnerable in the mold house. (I wish I had listened to those doctors who said plain soap was fine.) Herbicides, antibiotics, sanitizers, and disinfectants all have similarities in how they affect the body. Some disinfectants people use in their homes are classified as pesticides.
I was very sick February, March, and most of April. I could rarely even get myself a glass of water because I was so weak. I remember how thankful I was when I finally went a week without throwing up. May and June I slowly clawed my way back up again, losing symptoms and slowly gaining energy.
My weak body was damaged in so many ways, some of which compounded other problems.
Plus it took until mid-April to decontaminate the house, and the mudroom is STILL very bad. Lately, we have struggled to keep the chemicals in the hot mudroom from coming into the cool (window a/c) house. Just as I was very close to being able to bathe myself, symptoms are returning. Sigh.
But as I write this, my husband and son are cleaning out the mudroom from top to bottom, and I am optimistic.
Also, I continue to get slowly better and still retain my 2016-acquired ability to tolerate such things as car exhaust and intermittent scent residue.
Patience. I just need patience. 🙂
I almost did not post this but then thought it might help someone who has had similar health experiences, withdrawal from chemicals, etc. I want people to know they are not alone and that there is hope.
Christa Upton Black Hills Picture Books Edgemont, SD 57735
Back in the fall of 2016, I had reported my energy about 25% of normal. This was up from about 5% of normal in January 2016. However, from health categorization articles and friends talking with me, I realized I was expecting too much of myself. 🙂 (So what’s new, some who know me might ask. LOL)
Since I was out of bed and working about 8 hours a day, 6 days a week, and 4 hours of these being actually up on my feet, this is actually closer to 50% of normal. 🙂
Especially for nearing age 50.
Thinking of it that way, I came a very long way in 9 months of living here.
The bad news is that since then, no less than 9 medium-to-large events struck me backward in my health. Most of them have been accidental or unavoidable chemical contamination brought into the house. (More on this later.) I am still not where I was fall 2016. 🙁
It is really frustrating; yet, without these setbacks requiring me to rest more, would I have published 3 books this year? Probably not. God always has a plan, knowing what I will face, and He brought other good things out of this, too.
In other good news, Steve is able to work from home now. We never in our wildest dreams imagined he could have SUCH a good job later in life, with a fantastic boss and company, and even work from home.
Working from home now eases many things for us. He does not have to drive home at lunch to do Sarah’s lunchtime medical routine that none of the rest of us can do. Obviously it saves on gas and time. And, it does not leave me having to save a margin of energy for emergencies.
We very rarely need his help during the day, yet he is here if something happens. (Nothing has, yet.)
If he were 25 minutes away in town, there is a lot that can happen in the time it would take for him to drive home. For those times he has been away, I had to save a margin of energy “just in case,” and that was quite hard on me. It meant I could not push my body, which is a shame because pushing can sometimes help detox. It meant I needed to stay largely off internet. It meant I had to be on alert.
Being free to ignore all this except for rare occasions and instead do what is best for my body and for the family is fantastic.
Onward toward the goal of full health I go….
Christa Upton Black Hills Picture Books Edgemont, SD 57735
Many people with mold illness (CIRS, bio-toxin illness) are finding the joys of recovery through camping and traveling. Others just love to travel or have picked RV life for fun. If you are traveling with children and would like to try homeschooling, here are some tips for you to consider:
1. If you have lost curricula to mold, the Home School Foundation has grants for which you can apply. Local groups such as the Salvation Army may also have programs for help with school supplies.
2. Many digital options are now available, including e-book textbooks, entire courses on CD-ROM, audio books, and Kindle books. Many classic books are available on amazon for free, for the Kindle app. (The Kindle app is free to download on many devices including laptops.)
3. If your children are very sensitive to ink like mine are, take photos of pages of ink books you have purchased and delete the photos when done. Use the computer for most if not all writing compositions.
4. Enjoy learning opportunities when they happen. On the road, many of us see wildlife, scenery, and sometimes even museums which can be great for learning. Some children may enjoy taking photos (and later arranging, editing, etc.); others may enjoy extra research on what you see. Traveling can broaden horizons more than textbooks. Or just enjoy the day and write it down as a field trip.
5. Put books with spines upward in boxes or totes. This way no shelves are needed, and books can go from car to RV to blankets in the grass.
6. Keep track of lesson plans or hours or days (if your state/area requires) on computer.
7. Try solar cooking while camping and kill two birds with one stone. 🙂 Or actually 4 birds: learning, cooking healthy, saving fuel, and getting dinner done.
8. School year-round, so you do not have to worry if a couple weeks go by where you are too busy for much learning. Children tend to remember better without a long break anyway. They also learn through daily experiences.
9. Celebrate special days even on the road, like first day of school, 100th day, last day. We always do a treasure hunt on the first day and ice cream sandwiches on the last day.
Christa Upton Black Hills Picture Books Edgemont, SD 57735
So what does it take for a person to enter category B, C, or D in my previous post? This depends greatly on the person, their overall toxic load, their unique body troubles, and their symptoms. These are the categories that generally people fit into:
1. Sometimes all it takes is an overhaul of household chemicals, switching to natural products. This would usually include:
Getting rid of all cleaning products including laundry stuff and using only vinegar, baking soda, castile soap, and possibly other natural products such as Molly’s Suds for laundry. We use just baking soda or vinegar for our laundry, sometimes peppermint tea to soak “scented” items, but Molly’s Suds looks surprising good to me. 🙂 I have not found any dish soap I can tolerate any more, so we struggle along with just castile and baking soda for dishes. (I have a blog post on that if you want tips.) However, there are dish soaps out there which are much, much better than average and which will likely be fine for most people.
Getting rid of all personal products and finding substitutes such as castile soap and essential oils, if tolerated.
Switching to natural, homemade weed killer, bug spray, and sunscreen. (There are a variety of recipes online to try.)
Using natural paint such as clay or milk paint, or maybe just a good low VOC paint.
2. A second step is minimizing new contaminants or items brought in, depending on the particular sensitivities of the person. (Although I personally think any area of lowering a person’s toxic load may help overall.)
Keeping coats, shoes, and errand clothes out of living space and especially out of the bedroom.
Doing the same with grocery bags, packaging, boxes, and mail.
Refusing magazines, newspapers, etc. or keeping them in one area of the house. One thing we do is keep magazines (like Lego or kids’ magazines) in a metal file cabinet when not in use. The metal blocks all offgassing, and it is not that bad when in use, although I do not bring any into my bedroom.
3. However, some may not achieve stability, much less healing, until some low-tox house renovations have been done. Examples are replacing all carpet with tile, pressed-wood cabinets with metal, and plastic kitchen and bathroom appliances and fixtures with metal and ceramic.
4. Some may have to move to a less-toxic area, such as away from a main thoroughfare or factory.
5. Some may have to move away from people all together, to the country not near crop spraying.
6. Others may have to move to a completely different climate and area, including tip 4. I know some who were helped enough by this type of move that they THEN could stop at number 1 above, not needing a strict routine or low-tox renovations to gain stability.
7. Others have to move to a completely different climate and area AND build a low-tox home completely from scratch. This is, of course, me for one.
One interesting category is switching to organic food. Some people find this needs to be near step 1 for them. For me, I was healing pretty dramatically after moving here, even with a mostly non-organic diet. However, recently I have had to switch to organic, and I do think if I had switched sooner, I probably would have healed more and/or more quickly before.
So these are my thoughts on the big picture. Let me know if you have questions, and I would love to hear your thoughts as well. I have categorized and broken it down, but know that it also is not always this “simple.” 🙂
Christa Upton Black Hills Picture Books Edgemont, SD 57735
So with MCS, people can have mild symptoms or severe symptoms, mild disruption to their life or severe, mild energy problems or severe, and all levels in between. But the overall trend is what determines ability to stay in a certain environment or not and affects healing potential.
Most will fit into one of these categories, though people can change categories over time, especially if the environment changes, whether for better or worse:
A. Getting worse. This person’s symptoms, whether beginning mild or severe, keep getting worse where they are. The downhill journey can be slow or fast, and of course if the person begins as rather severe (in a symptom or energy), getting worse becomes more serious quicker. Either way, this can eventually lead to becoming bedridden and to life-threatening situations.
I was in this category for much of 5 years, which is why I had to keep moving, trying to find a place I did better. Sometimes a change in which toxicants I was around helped me survive.
B. Stable. This person’s body is able to deal with whatever chemicals or mold is in their environment enough to remain generally okay. Symptoms may still go up and down, sometimes even wildly, but their body is able to bring it back into a place where they can cope without too much risk of a downhill trend or life-threatening situations. (Although some will still face life-threatening symptoms which they have learned to manage even while overall relatively stable.) This person has learned their limits and can function at one level or another.
C. Getting better. The environment has been altered enough for this person to begin healing and improving. This of course is the goal, but often it is unattainable because of money or other constraints. 🙁
D. Getting much better. This person’s improvement includes tolerating previously intolerable chemicals, recovering quicker from exposures, and a point at which the body is detoxing faster than what is coming in. The person may still be susceptible to new exposures, especially ones particularly troublesome for their body, but generally they are able to heal again.
This category is where I have been since we moved in here, our low-tox house. Since I could not achieve category B anywhere we found, we had to go drastic and build.
One symptom that affects progress greatly is something called Post-Exertional Malaise. This is an extreme tiredness after physical activity that is impossible to overcome. This of course makes an uphill spiral extremely difficult. After about 4 months living here, I began to experience relief from my PEM, sometimes for hours, sometimes for whole days if i did not overdo. It felt amazing and of course allowed for much more progress.
Another aspect is specific symptoms. If a certain chemical gives one atrial fibrillation or asthma or inability to eat, these can lay one flat even though it is just one chemical in an otherwise-good environment. This has happened to me three major times since moving here, the first major time being the cast for my broken wrist. I reacted to it with heart problems and therefore extreme exhaustion for 7 weeks. Ugh. Unfortunately it causes a cascade of health problems. Being bedridden causes all cardiovascular improvement to go backwards, can affect digestion, does not allow for good detox, and affects ability to do things to get better like get out in the sun. Within an hour of getting my cast off, my energy lifted a little bit. But it took more than 2 months to get to where I was strong enough and had energy enough to bathe myself again. And then within a week, the bad wildfires hit our area….. But I digress.
Next time I will share general categories of what people need in order to move to category B., C., or D.
Christa Upton Black Hills Picture Books Edgemont, SD 57735
From 2007 to 2010, I suffered accidental Toxic Injury (also called Multiple Chemical Sensitivity or Environmental Illness). But, the forced time in bed has given me time to write. It has been such a blessing to work on my children's books and stories!
I love: God, family & friends, outdoors, gardening, animals, writing, reading, photography, cooking, music, dance, bare feet, long skirts, lavender & yellow, and chocolate.
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