A Choice

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 been for the many years I've been homeless in this very tent.

Until now.

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.
<img alt="Free Wild Horses" src="http://a.imageshack.us/img819/2038/2289765395f74d2ae5b1.jpg" title="Free Wild Horses" class="aligncenter" width="500" height="333" />

Comments

Can you add to your tent, Lisa? For example, a screen "room" that I've seen many people at campsites use, and a few chairs and a table--so you can have another area to be in? Or start offgassing another tent? REI makes a nylon mesh tent that seems really nontoxic (I smelled it in the store). I met a couple who camped every few weeks, and had an aluminum queen size frame from walmart, and a mattress on it. I'm not sure if I remember what's in your tent, but they also had some rugs. It looked very comfortable.
 
Hi Jen! :)

I have often dreamed of a bed frame, even imagined the one I would build myself someday. Without a bigger tent I don't think it would work out right now, we barely fit in this one as it is! lol

We've tried airing a new tent out - it died due to exposure before it lost its toxic fumes from the urethane used to waterproof the floor and seams. I've only found one tent so far that has a floor which would be usable but am having a heck of a time getting them to help with figuring out a problem I have with the poles they use. Their frames require pvc poles (like the pvc plumbing pipe) but that stuff is highly toxic when it off gasses or heats up at all. They also say you can not use tarps with it due to the pvc poles (the enclosed heat would make the poles soft) and we've our own concerns about trapping those fumes under the tarps.

For the last few weeks I've been trying to get their help on what other sorts of poles could be used in the place of pvc pipes but am meeting a silent wall other than "you can't use that". Great, I can't use various things but they aren't helping me figure out what I can or how to modify their set-up to use other things. sigh. Will keep trying to pester them till they help or tell me to go away. lol

We have a pretty good sized area in front of the tent that is tarp covered and works well as an add on. Also our various extra shelters help give more space too. I've been trying to figure out how to do up a space that is covered yet large enough to be a good yoga area for when the rains start. I've been really loving having the open spaces to move in this last few weeks since getting some energy back, need to have a way to continue that this winter.

Great to hear from you Jen! :) Lisa :)
 
Embracing the positive, accepting what you can't change & making the best of a bad situation is truly liberating. I certainly believe, Lisa, that working together, you & Jeremy will eventually improve your living situation.

You are so lucky to have an understanding, loving partner who shares your life & health situation (MCS/CFS).

Two like minded souls are better than one.

Hope you manage to find a solution before the next winter. Perhaps it will end up being a case of buying the tent package these people offer, & then tracing some sort of MCS suitable poles (as a separate purchase).

Can any of the high altitude tent manufacturers help out with a separate pole deal for you? (I say high altitude because of your snow in winter).
 
Hi Lisa:

Do you mind sharing more about what the wrong type of B12 was and what happened? Thanks.
 
Hi Lisa. If the tent works, surely there have to be poles one could adapt. Maybe you need to work with a builder--or handyman type of person who can jerryrig you something, rather than the annoying company themselves. Wouldn't it be nice to have two tents to use? I say, yeah!
 
thisSuch an important message for everyone with a chronic illness. Resentment, anger, frustration - while natural reactions to such a situation are just so hard on the body. If you have to be somewhere - to be in some situation - far far better to make peace with it than rail against it all the time. Congratulations.

(Cloud - love the new iteration of the avatar by the way :))
 
tahoma;bt2785 said:
Hi Lisa:

Do you mind sharing more about what the wrong type of B12 was and what happened? Thanks.
Hi tahoma! :) Someone asked that over on my main blog site too so I'll copy/paste the answer here for you. :)

I had forgotten while replying the first time - the methylb12 also caused a lot of memory trouble which still effects me a lot even now. Wiped out swathes of memories and seems to make it a lot harder to keep details of things several months later, even stuff that I used to have no trouble remembering for years will now become dim memories if a couple months pass and I was not at least occasionally using that info.
---------------------------------
from Sundog Tales:
The wrong form for us had been methylcobalamin (methylb12). We are doing very well on hydroxocobalamin the last nine months. :)

In a nutshell: Methylcobalamin is one of the few things that can bind with body mercury, thus forming methylmercury. Methylmecury is the form that can pass the blood brain barrier.

Its thought that the methylb12 bound with our body mercury load (tooth fillings, eating fish, etc) to form methylmecury which then took a sledge hammer to our body systems.

It shut down our ability to reason and understand what was going on to our bodies because of the extraordinary brain fog it caused. This had us using the methylb12 maybe a week or two after we took a turn for the worse on it. In total, I think we were on it 3-4 weeks at most (kinda a blurred memory) at which point we woke up one morning and suddenly realized we needed to stop right away.

Since then, weve started a new practice to only have one of us try something new for a few days so the other can be aware of any problems just in case. Has already helped with one thing (though I cant remember what, I was the guinea pig lol) and is something we are still sticking to with new stuff.
 
Victoria;bt2784 said:
Two like minded souls are better than one.
I really like that Vicki. :)

Aye, I'm looking into other pole options but it is slow going. We've been having a longer than usual time recovering from a town trip we took about a week and a half ago, it was a pretty long day and we gave a lot of blood. I was also thinking other tent poles might possibly work and it sounds like they would if I could get some with the right sort of flex to them. Also still keeping my mind open to some other sort of inspiration finding me, though good luck getting through my current fog! lol :)
 
jenbooks;bt2791 said:
Hi Lisa. If the tent works, surely there have to be poles one could adapt. Maybe you need to work with a builder--or handyman type of person who can jerryrig you something, rather than the annoying company themselves. Wouldn't it be nice to have two tents to use? I say, yeah!
You know, I was just yesterday thinking that a possible solution might be a craigslist ad saying I'd pay for someone who could come up with a solution that works with our needs and then builds it too. Sort of goes with the handyman ideal! I've been mulling it over but still liking this idea. :)
 
Cloud;bt2794 said:
I love this post Lisa...thank you. It made me smile huge. You and Jeremy are my hero's.

We must transcend that which holds us. And when a person is able to do that by choice with a challenge so great, it's amazing and it's an absolute miracle...that is if you consider a Miracle to be a shift in perception.
Hello Cloud! Excellent post! :) Honest, I'm not biased at all by being called a hero. hehe :)

You know, I hadn't thought of it as a Miracle, but I really do see your idea behind this. On this end it does indeed feel a fair bit miraculous actually because the head/life place I was in just two months ago was so drastically different than where I am now.

So yes, I think anything that can bring about such a tremendous new dawn on an exceptionally dark night could indeed be called a Miracle. Thank you very much for the insight, Cloud. :)
 
Cort;bt2802 said:
thisSuch an important message for everyone with a chronic illness. Resentment, anger, frustration - while natural reactions to such a situation are just so hard on the body. If you have to be somewhere - to be in some situation - far far better to make peace with it than rail against it all the time. Congratulations.

(Cloud - love the new iteration of the avatar by the way :))
I agree Cort! I'm feeling myself going slowly back to more of a calm place instead of the flight/fight one I've been in for about the last 18 months, even since the big snow storm had a tree just about fall on our tent.

Thank you Cort!
 
Thanks, Lisa. How is the hydroxyb12 helping you? Also, what does Dr. Buscher say about your fog?
 
Lisa, I think the craigslist idea is a great one. And do it for any city or town within 2 hours of you (on each CL site) because a lot of people are hard up for extra money these days and I bet there is someone who can jerryrig poles for you. The couple who had the queen bed aluminum frame in their tent--he was handy--he had affixed some other bars to it to make it stronger and then added plywood--he made a hinged plywood thing to put under the air mattrress. Many people are very handy. I'm sure something can be made.

Another thought is to buy the AFM foil tape, and simply get the PVC vinyl and wrap the tape around it. It would be a slightly tedious task for a few hours. You'd have to cut pieces of tape and wrap around carefully. But that foil tape seals in any VOCs. It would be an easy solution and I'm sure it would work as I've used it to seal in nasty vocs on things, including a kitchen cart with a stinky perfumed butcher board top that reeked throughout my whole apartment. Putting the foil tape on completely sealed it and I was able to use the cart.
 
Hi LIsa congradulations on coming to grips with the situation.

If you can describe the ammount of monthly rent you an afford for a MCS freindly place you need, maybe you will find someboyd here with a good situation and willing to rent ot you. You never know.

Here is a link for ecnchat. A yahoo groups that is for people with MCS, just in case you didn't know. there may be some people there looking for room mates or something.

http://lists.sonic.net/mailman/listinfo/ehn-chat

Good luck. Mark
 
tahoma;bt2810 said:
Thanks, Lisa. How is the hydroxyb12 helping you? Also, what does Dr. Buscher say about your fog?
Hi tahoma! The hydroxyb12 is helping in many unseen ways - until we miss a shot. We notice within about six hours if we miss our usual every three day shot and if we wait till the next day we start to feel run down, sluggish, and just kinda more blah. I haven't spoken with Dr. Buscher specifically on fixing the brain fog, we're focusing more on trying to stabilize us and begin dextoxing while dealing with some of the more immediate problems (various infections, etc). I have times where I wonder "why isn't Dr. B trying to fix more stuff?" but then remember its because we don't react well to most things, many therapies are still too advanced for our weakened condition.
 
jenbooks;bt2824 said:
Another thought is to buy the AFM foil tape, and simply get the PVC vinyl and wrap the tape around it. It would be a slightly tedious task for a few hours.
Hi Jen! I hadn't thought of posting in CL for Portland too. Seattle and Portland should yield more results for sure! Also had not thought of the AFM foil tape. I have never used it but we used many of their sealers on various parts of the house building fiasco and they worked well for us. I'll get some ordered up so we can test it asap! Thanks very much for the great ideals!
 
markmc20001;bt2831 said:
Hi LIsa congradulations on coming to grips with the situation.

If you can describe the ammount of monthly rent you an afford for a MCS freindly place you need, maybe you will find someboyd here with a good situation and willing to rent ot you. You never know.

Here is a link for ecnchat. A yahoo groups that is for people with MCS, just in case you didn't know. there may be some people there looking for room mates or something.

http://lists.sonic.net/mailman/listinfo/ehn-chat

Good luck. Mark
Hi Mark! Great to see you again. :) Our monthly rent really could only be about $100/mo or something more but with all utilities. Anything more and we end up doing the skimp on our medical stuff which is always a scary thing to contemplate. Thanks for the link to the group, I had not heard of that one. :) A roommate situation would be really nice if we can recover enough to handle another person - I'll admit to getting a bit wearisome of only having Jeremy's company at times! lol :) At least his dad is good for a laugh now and then. :)
 
Lisa;bt2839 said:
Hi Jen! I hadn't thought of posting in CL for Portland too. Seattle and Portland should yield more results for sure! Also had not thought of the AFM foil tape. I have never used it but we used many of their sealers on various parts of the house building fiasco and they worked well for us. I'll get some ordered up so we can test it asap! Thanks very much for the great ideals!
Hi there. It's Advanced Foil Systems tape. It's aluminum tape and very easy to use and adheres well. I'm sure it would seal off the PVC vocs. You might end up cutting it in half lengthwise so you have thinner slices to wrap around PVC tent poles. I've used it in multiple applications and it holds up well. It's surprisingly versatile and durable. Here's the link:

http://www.afs-foil.com/pages/AFS_Detail.asp?ProductID=2446

Call and ask their advice, they're nice.
 

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