Welcome to my poorly photographed Hawaiian lanai – aka my porch!
Good lesson to be learned here – never try for a picture during mid-morning sun. I didn’t even think about the bright sunshine lines when taking the photo, I was just excited to share my garage sale findings this morning. So on with the show!
Here is my lanai at our new apartment. On the other side of the green fabric is the main house’s lania which is used by our landlady, Gigi. It’s mostly a private area with only occasional use of the hose or trimming of the plants by the landlady sending her over this way.
As you can see, it gets a lot of nice sunshine throughout the day. We are currently growing cilantro, dill, and hot peppers – along with a pulmeria tree and several orchids. In the background are banana trees and several other native plants.
But what I really wanted to share is the stuff in the foreground of the photo – today’s garage sale finds. Gosh, these tables are hard to see with all the bright sunshine lines in the background. Anyways! You are looking at 3 tables we found at a yard sale this morning – one end table which oddly is from the same design as a kitchen table/chair set we already had, one folding plastic topped table for Jeremy to use for selling jewelry at the farmer’s market at some point soon, and one sort of coffee table that is exactly the size table we really needed right now.
There is also a three tier wire shelving unit for the kitchen, two nice table lamps with light bulbs included, a small backpack for my camera equipment on beach or hiking trips, and a set of weights to get Jeremy going on regaining his strength after so many years of illness.
You might think to yourself, wow – that’s a lot of stuff, I wonder what they paid for it? I got us a good bargain and love the negotiating part of any garage sale. Twenty dollars, for everything! I really enjoy the days I can feel like we found a good deal.
Maui is fantastic for garage sales. They run year round, every Saturday – usually several dozen on the island. We stick to a 20 minute drive radius most of the time and have found the best bargains at moving sales. When you consider people moving back to the mainland, or even a different island, can’t simply rent a truck and move their belongings – it makes for lots of good condition things at cheap prices! I love it, I really do.
It is now an hour later than in the picture and the clouds have rolled in, making for much better lighting on my lanai. I suppose I could go retake the picture… but who wants to move all those weights back again! Enjoy the sunshine!
Nearly a month ago, it became apparent it was time for us to find a new place to call home. While I do love our little studio apartment, we need someplace a little more suited to our quiet and peaceful lifestyle.
As I’ve been finding out this last month – obtaining safe and affordable housing with MCS can be a real pain in the keister!
I have tried over a dozen rentals and none have the necessary requirements for our needs – mainly mold free with non-toxic flooring, no fresh paint, and zero pest control spraying. I’ve not a clue how we ended up finding our current rental so easily, it was a total fluke!
Luckily we are not on a time limit for having to move, so if the right place for us doesn’t show until next month that will be ok… though the stress is pretty incredible.
Not only are we limited by our health needs, but there is also a large amount of competition for any reasonably priced rental. Within hours of a rental being listed it will have had close to a half dozen calls or more from people looking for the same price range we are. This puts a tremendous amount of pressure on us to be one of the first people to call or risk losing what may have been a rare MCS friendly rental.
My world has narrowed down to keeping myself ready for action at a moments notice on a good sounding rental and dealing with the stress our living situation is causing.
Meanwhile, I have been lucky enough to follow a dream I’ve had for many years, easily half my life, and purchased a good DSLR camera last month. Funny timing on it, as there is not a chance I would have bought it had I known less than a week later I would be searching for a place to move. Yet, I’ve found a great deal of enjoyment in snapping pictures of our various journeys around the island this last month and it has been a much needed source of relaxing calm in my life. I hope to have some photos ready to share on here soon, though it may take until after our move for that to happen.
The house hunt continues. I still have high hopes with each phone call and email, that this could be the next home for us. I just hope it is sooner rather than later as I’m ready to be moving on.
In life we have choices. Choosing gives us power. When we are thrust into a situation in which we have very little choice, it can leave one feeling very powerless. Thus has been my situation for the many years I’ve been homeless in this very tent.
For years we have tried to find a way out of our situation and seem to have only dug ourselves in deeper and deeper each time.
We tried to build a house – now we are in debt we can barely cover due to our increasing medical expenses, can not finish building because the majority of the money ran out years ago, and are now left with a half finished structure too toxic for us to live in.
Three years ago we started an intensive regime of supplements which did show much promise in healing us – then a misstep with adding just the wrong type of a much needed nutrient (b12) and all our hard regained health crashed around us in a matter of a few weeks. This was the instigator of the crash from which we are only just starting to pull out of finally, a full year later.
Stuck in a difficult situation, all the motivation in the world to pull yourself out of it yet chained to a body incapable of hardly even moving at times for the most basic of needs. Its enough to drive a person nuts.
While these last few months have passed by and our health declined further and further, all thoughts turned to escape from this situation, no matter the cost. I started rooting through all the ads for rental housing, day after day, looking for the “perfect” place for all our needs – super cheap, hardwood or tile floors, no fresh paint or remodeling, no pest control, no mold, no super close neighbors, no gas appliances, and a landlord willing to work with our MCS problems … in other words, looking for the near impossible.
Even assuming we found a place that matched everything, it would still have the possibility of not being right for us depending on the lifestyle of the last few tenants. If they had been incense burners, smokers, strong laundry soap users, heavy perfume wearers, or any number of other highly toxic aromatic things in daily life, then that too would rule a place out.
Yeah.. darn near impossible at this time.
And then a few weeks ago, Jeremy and I came upon a Choice.
We could keep going crazy looking for an exit to the cage we found ourselves in these last eight years or find within ourselves the key to dissolving the cage bars surrounding us and finally be free again.
I am not entirely sure how we found the ability to liberate our minds from the cage, thus freeing our souls, but I do know it started with a choice to stay.
All these years I never felt like it was by my own choosing to be here in a tent. It was always circumstance that forced my hand, left me no other options. Left me powerless.
As simple as it seems, we decided that barring unforeseen changes we would stay here for the next solid year, work very diligently and without deviation from a healing plan we wrote out that day, and most importantly – we made a choice to stop pacing the confines of the cage but to instead embrace the life around us as our own.
And with that we were freed.
I have been eagerly awaiting the chance to write this blog entry for the last few days. Though I know I will be tiring myself out greatly, I just can’t wait any longer – it is just too exciting!
Today has been day six of what I hope to be a major victory in our search for better health. Over the last month, Jeremy and I have been slowly implementing a massive dietary change. Based on some of the test findings at our last doctor appointment in October, we found out several things that could use changing in what we were eating on a daily basis. Various foods that changed our hormone and vitamin balance, promoted fatigue, spikes in blood sugar with later crashes, and were contributing to Jeremy’s large Candida yeast problem in his gut.
After a lot of research largely on how to cure the Candida outbreak that Jeremy has, my path led me to what is known as the Paleo diet. Long story short, it is the diet our ancient human ancestors used to eat prior to refined grains and legumes being cultivated. Sounds like a fad diet right? True, I was skeptical as well when I first came across it. I had only read further about it because most of it was formed around the same sort of foods of a typical diet to help with Candida problems but sounded a little better balanced for nutrition.
Cave painting at Lascaux, France
Thing is, there is just something about this diet that grabbed the little scientific researcher that still thrives in me and made it take notice. Another long story short, there is lots of solid research to show that grains and legumes have low levels of toxins designed to do various things for the seeds but that are not healthy to be ingested by humans. It is not as much of a concern for an average person, but for me and Jeremy who have very sluggish toxin removal systems as one of our dominant health problems, those minor amounts of toxins just add to the overall body burden.
The basis of this diet is that you eat a phenomenal amount of vegetables and a bit of fruit, about a matching amount of lean animal sourced protein, and then fill in the gaps with healthy oils and fats. Nothing made from grains, dairy, legumes, or potatoes is eaten. It is not one of those protein only diets, the vegetables and fruit are a huge portion of what is eaten in a day and provide ample carbohydrates. Preferably everything is organic produce or range and grass fed animal products.
The general idea is that we evolved burning fats and proteins for fuel instead of starchy carbohydrates like pasta and bread. People who have made the change to the Paleo diet, or some variation thereof which they can do on a regular basis, have reported huge increases in energy and feeling considerably healthier.
Not trusting to anything that might be a fad diet, we have spent the last month slowly trying to ingrate it into our lives with the intention of for sure staying on it till Jeremy’s Candida problem was cleared up and then seeing how we felt after that. But even during this last month when we were only eating about half paleo we were noticing some substantial increases in energy and stamina. Then Christmas came and with it too many goodies to eat. The change in how we felt after a couple of days less paleo and more average western diet was extremely noticeable and we felt awful!
Six days ago we woke up and decided it was the day to begin the Paleo diet 100%, while the Christmas goodies hangover from the carbohydrates was still lurking to help with motivation.
A brighter day on the way.
I will write more tomorrow (hopefully) on what will then have been the first week on this new diet. It is a very interesting process our bodies are going through while relearning how to be more like our caveman ancestors. As this process of adjustment is going on, I have wanted to write about these changes and many of the things we are learning to help ourselves adjust.
I do know one thing for sure and this is where all my excitement is coming from. Over the last six days there have been brief bits of time when suddenly everything just clicked right for anywhere from 5 minutes to an hour. Despite some intense brain fog that has plagued me since day two of this change, during these moments I would feel incredibly better than at almost any other time in the last several years.
It is these moments that have spurred me to write this long article tonight, knowing with a certainty that can’t be explained that these brief moments of improved health will not be the only ones this diet change brings. I want to be able to write about this amazing process as it occurs because it might, just might, prove to be something very huge and beneficial in our lives.
It has been a three days since the cold front finally broke. When it did we got a couple inches of snow, not really all that much for around here. I expect a couple more snow storms before winter is done. This one only lasted a day this time which was very nice. Luckily behind the snow was a warm front and now it’s a balmy 50 degrees today, though it does come with the price of heavy rain showers. Such a huge change from our well below freezing temperatures less than a week ago, feels almost like spring! Here are a few pictures I took of the snow:
View from under our tarps.
Jeremy having to keep dry while getting hot canning jars for us to stay warm.
The beauty of the snow.
The rest of this is just a quick update to my previous blog articles.
For almost the entire month of November both Jeremy and I had a really difficult time around here. I wrote about the crash in “Tides of the Storm” and “Ex nihilo”. It was probably one of the hardest months we have had since moving into this tent and very possibly the hardest in the last 2.5 years. November ended with me having one of the worst flu bugs I can ever remember having and Jeremy having a tooth extracted that had been abscessing for the last several weeks at least. But with the first week of December we both started feeling slowly better and getting our feet back under us solidly. We decided that a rest was much needed and are taking a month off of all detox inducing supplements so our bodies can heal and be ready for the next round.
I have written a few times of the animals we have around here in “A More Simplistic Life” and “Squirrels!” We still see our little Winter Wren friend and he has become much braver in the last couple months. Just a week ago he was hopping around and looking for a tasty bug to eat when he got some crazy notion in his head that the pill Jeremy was handing me must have been for him. Right as I grasped the capsule I suddenly see this little form dart from the corner of the tent and do a quick swoop past my hand. As he went by I felt his little feet grab my finger nearest the capsule and quickly let go as his momentum carried him onwards. What he was thinking, we will never know but it did provide for a nice bit of comedy.
Our squirrel friends (or annoyances as was the case for several months) have been quieting down as the winter progresses. Surprisingly we saw one just behind the tents digging in the snow on Sunday, looking for some maple seeds. I wouldn’t have expected to see them out on the one day of snow, but can’t argue instinct with something who’s vary life depends on it. Luckily they have been much quieter in the mornings and so we get to finally sleep as our circadian rhythms need. I think this is certainly one of the big things that is helping us to recover from our crash in late October and all of November.
Also, an update on our progress after the big doctor visit we had early October and written about in “Back from the Wizard”. We have been taking our b12 shots every three days, using the hormones as prescribed, and taking all the additional vitamins suggested (vit D, more C, more Selenium, and more CoQ10). I have changed several of the brands we used for our vitamins. Where monetarily possible we are now on food based vitamins which feel a lot better to be taking. I wasn’t sure if there was a real difference between food based and something developed fully in a lab. However, when I had the nasty stomach flu a few weeks ago I quickly felt the difference between the two types as the fully lab manufactured ones were not even able to be tolerated by my stomach for five days, while the food based ones caused no stomach trouble.
That affected a lot of my decisions when it came time to buy our vitamins the following week and I think I have us on substantially better vitamins now because of it. I also was disturbed to find a possible source of mercury ingestion in our fish oil, apparently at some point it changed from “free of mercury” to “lower than industry allowable limits.” Ack!!! We now take krill oil and it is worth every extra penny to know it will not be adding to the abundance of mercury we must deal with.
In small ways we are seeing the benefits of these changes. It is very likely that the crash we just went through was brought about by some of the readjusting going on in our bodies to the new therapies. Certainly the vitamin b12 shots (administered at home) would be a huge catalyst for change even if nothing else was. I have noticed some good changes in Jeremy as his hormone levels are going back to normal and some positive things as mine do as well.
Within two days of our doctor trip we also stopped eating all soy products, though I did just find a couple supplements that had some soy still in them. These are now gone too. We have stopped being vegetarians, something which was hard from me as I had been one for 12.5 years, but can feel a lot of benefit happening from now eating animal sources for protein. I think this is also responsible for some of the good changes taking place in us. Currently we are working towards a large change in diet and are excited to see what might happen once we have fully made the change. We feel better in small ways every meal we eat differently now, I have high hopes for what may occur when all meals are changed.
As for our house… well nothing seems to have come of all my efforts to find help finishing it and described in “To dream of a Home” and “Fate’s Quirky Sense of Timing.” One woman at the NW EcoBuilding Guild did seem receptive to talking about my situation but after hearing how bad things are she completely disappeared. It is unfortunate she couldn’t at least have been kind enough to say she couldn’t help, but to act as though we do not exist anymore is pretty ridiculous.
I also spoke with the president of the guild who upon learning that we were not paying members she immediately became very aloof and wanted nothing to do with us either. I had tried to explain that being almost completely housebound, on a fixed income with high out of pocket medical costs, and scrimping every cent we could to finishing building our house that it just hadn’t made much sense to pay monthly membership dues for meetings we would never be able to attend.
But it did not matter at all. Unless we had been paying for services we were too disabled to use even once in the four years we have been trying to build, she wanted nothing to do with us. If it were me, I would have looked at an opportunity to get us as new members and make a statement that it is an organization not just about recycling building products but about the people who live in the world we are claiming to want to save. I have to wonder who they are trying to save the planet for if not for the people who are in their community.
There are a few other exciting bits of life that have been going on around here but I will save those for later as they develop more fully. I am starting to finally feel like there is some progress being made from all the hard work we have been putting into life for the last four months since starting the climb back up out of the hole this summer’s crash left us in.
Ok, maybe this wasn’t such a quick update after all. Surprising to see how much has been happening when most of the last few months I often felt as though very little was going on. Small things have a way of adding up over time to much bigger things.
For me, some days are good and robust, while other days are lack luster and wanting for more. Well, that isn’t entirely accurate. Lately it feels more like some weeks are this way. A CFS crash can come in a variety of flavors. Sometimes it is less energy, sometimes more pain, but always an exacerbation of symptoms I normally have.
Over the last couple months, it comes in the form of insecurity that then brings its friends, anxiety and sorrow. I have been struggling with this emergence of mine from a life lived in the peaceful shadows of my cave, into a new life filled with many new people who know me for who I am. A woman with CFS and MCS so debilitating that she has had little choice but to live in a tent and is finally speaking out about it.
It is very difficult at times to live this unconventionally. All our lives, our sense of rightness and belonging is developed by what we see around us. I don’t see many people living as I do which brings to this situation a feeling of freak show that can be hard to dismiss at times. Were I living in a country with a majority population who lived in huts or other more nomadic style dwellings, this would seem like more of a normal way of life. But in America, living in a tent year round regardless of snow, cold or other weather is anything but normal if you are not doing it as part of your job.
This is all compounded by the fact that while I chose to live this way in order to safeguard my health as much as possible, I do not consider that much of a choice. Ask a person if they would rather live in a tent for eight years or face the possibility of a health decline that may end in no life at all, the answer seems pretty obvious. Though at times, the alternative does hold a strong sway upon me.
The numerous trips to town in the last month for testing and to see the doctor have been taking a steadily increasing toll upon my mental fortitude against these feelings of insecurity, isolation, and loss. It is a form of culture shock at times, to be reminded of all the seemingly simple things in life that you lost years ago. While speaking to people it can be easy to forget these fragile nylon walls surrounding me and instead step for a moment into their world of warm, safe homes and work. But in the quiet moments that fill the gaps of a day, these walls take on a solidity that continues to defy my attempts to break free of their grasp.
I will not stop looking for safe ways to move indoors but the thundering sound of rain upon my tarps today is a constant reminder that Winter’s inexorable approach draws steadily closer. Hunting, searching, and never truly resting because my mind is like a caged beast that can not help but pace the confines of her cage while waiting for the day that will bring release and freedom.
Eight years ago today saw one of the worst days of my life. The last two months had become an ever increasing nightmare as life started to plunge into the icy depths of serious illness. With chronic fatigue making it increasingly difficult to work even part time and chemical sensitivities springing up like wild flowers in some twisted tormented garden, my world was definitely crashing down around my ears.
It all began from something in an apartment I rented. Whether it was from a toxic mold problem I had apparently brought with me from my last rental or from some other toxic chemical source inside the apartment, it hardly matters all these years later. But on this very day in 2001, it mattered greatly because whatever was causing my health to dramatically drop, it was now all too evident it had also soaked every single belonging I owned turning each beloved item into what was beginning to feel like a little bit of hell when around them.
The nature of this illness left others able to still use the things I owned, as I saw when a friend came with me to the storage locker I had rented in the hope of one day soon recovering and reclaiming all that was mine. It was during this trip that I came to a horrifying revelation. Although others had no trouble from being near any of the treasures I had gathered in my life, I had become so sensitive to each one’s remaining toxic soup that I could no longer be within even twenty feet of them. And so out of desperation, a plan was formed to cut my losses, which were daily growing larger, and try to restart from scratch. Hoping maybe my illness was being caused by the trappings of my former life that I had continued to hold on to and that once removed entirely, as one would do with a rapidly spreading cancer, my health would have a chance to recover.
Eight years ago today was a Saturday. It was the worst Saturday of my life and I hope it remains that way. With an inner strength I did not know I possessed, this day saw me holding a yard sale of my once normal life and everything that had ever been in it. Strangers pawed through my belongings while looking for fabulous deals that they could brag about to friends and family later. I had started the day with at most a hundred dollars to my name and so with a great weight in my heart I haggled each price higher, for I knew my only options for rebuilding would come from having the money to do so.
Eight years ago was my birthday, as it is again today. A birthday of great loss and sorrow, spent with vultures and hyenas feasting on the wreckage of my healthy life.
Today will be different. There is already more hope and happiness than I have had in years. Some early birthday wishes from friends I have only recently made is adding a sweet reminder that I am becoming human again. It seemed last night that even the woods around me sent out a shout of greeting just after midnight as animal after animal briefly called out into the dark night around me before quieting again as though nothing had occurred. That was one of the more odd things I think I have heard all these years in the forest. Deer, owl, coyotes and a raccoon all within mere moments of each other, outside and raising a ruckus each in their own turn, it was very odd indeed.
And in one of those rare moments when you see fate’s quirky sense of timing, yesterday saw what seems to be an almost unbelievable miracle. I received word that a letter I had sent to the NW EcoBuilding Guild was being taken seriously, that my request for help to finish my home and leave this tent had not fallen upon deaf ears. I do not know what will become of this; I only know they read my words and have passed them on to others to read as well. But the hope blazing in my chest is a vastly more wondrous feeling than the despair of so many years ago.
Today is indeed a very Happy Birthday for me filled with much anticipation and excitement for life and what the next year may bring.