Monday, December 28, 2015

I won! I won!

I've been entering sweepstakes and giveaways all over the place lately, but of course only for things I'd actually want to win, or win for someone I know. And my efforts have paid off - I won my first giveaway! It's a really cool one, too - one that will help my family be safe in our car! 

It's the ResQMe Deluxe Essentials Lifesaving Kit! From "It's Free At Last": 

"It can fit in most glove boxes, or even under your seat so you can grab it in a hurry. And of course it’s not just for your car or truck, but they are great to keep under the sink at home or in your gear when you’re camping or hiking.
It includes essentials such as bandages, tape, gauze, safety pins, gloves, tweezers and even an instant ice pack! Plus, it also includes other supplies/life saving tools such as a LED flashlight, emergency whistle, hand warmer, and a resqme® tool. This tool fits on your keychain and can be used to cut seat belts and bust out car windows in case of an emergency."

I won it over here, at It's Free At Last. And I am so excited! I won a really cool thing! Me! What a great pick-me-up to find in my email this Monday morning! 

Tuesday, August 18, 2015

that moment when you see the light at the end of the tunnel...and the tunnel collapses

So the RV is ready. And we had begun to move in, with the help of that amazing friend I mentioned in the previous post. We were getting settled in. Each day we'd go get a few more things out of the house. By this past weekend we'd have been fully moved in. As you already know,  we moved back into the house instead. 

As I've also mentioned before, I have Multiple Chemical Sensitivity and Mast Cell Activation Disorder (I have several other diagnoses, but those are the ones relevant to this particular story). This means we have to be EXTREMELY careful with chemicals, and it also means that every single thing we put into our bodies or in our environment costs a hell of a lot more money than the "conventional" version. Because I react to soooo many things. And reactions can look like migraines, or severe brain fog, or physical pain, or outright anaphylaxis.

So when we painted the entire RV interior, we used really safe paints. Annie Sloan Chalk paint for the walls of the living area and bedroom. Yolo Colorhouse for the bathroom and sofa. And for the cabinets, which are about 65% - 70% of the RV, some kind of zero VOC primer and paint from Sherwin Williams. wasn't. 

The first night we spent in the RV, I could smell the paint fumes, and I let my husband know. We brainstormed, and came up with running the ozone machine during the day to see if that might help. It seemed to - as long as we ran it twice a day and let it air out, the fumes weren't so strong. But the thing about running an ozone machine, even a small one, is that you must let a building thoroughly air out before you go inside, because even residual ozone can dry our lungs and sinuses and cause havoc in a person's system. It's not an ideal solution if one is actually living in a space.

So once we actually moved into the RV full on and weren't just sleeping in it, that's when I realized the ozone machine wasn't as effective as I thought - because the fumes came back in full force. And let me just tell you - despite what those chemical companies want you to think, if you can smell it, it's hurting your health. Not just My health, delicate fragile flower that I am. Anyone's health.

Those chemicals you smell in paints? Many of them are solvents, and OSHA's own website her this to say about solvents:

Millions of workers are exposed to solvents on a daily basis. Health hazards associated with solvent exposure include toxicity to the nervous system, reproductive damage, liver and kidney damage, respiratory impairment, cancer, and dermatitis. Solvents share many chemical, physical, and biological properties that warrant national attention be directed to them as a group."

Here's another article about Low VOC paints I wish my husband had read before choosing the cabinet paint:

Low VOC Paint. Everything They Never Wanted you to Know.

Or this one:

IAQ and Your Health: A Deeper Look at VOCs and Formaldehyde Emissions

I'm not blaming my husband. He is terribly overworked, overstressed, and exhausted. *I* am the one in our family who researches everything exhaustively. That's why we got the Annie sloan for the walls, and the Yolo Colorhouse. They were safe. But the latter at least wasn't really meant for cabinets. And the former, you also have to wax after to protect the paint. Then every 6 months after that. So it's understandable that one might want to look for something with a little less maintenance, especially since our life really can't afford to have *more* things to maintain. 

I am human. I have memory loss and brain fog as part of my symptoms. Sometimes I think I know a thing and I forget the thing. Or things accidentally slip through like letting my husband choose the paint for the cabinets, because using Annie Sloan seemed like a lot of steps (and expense). And even though it was my gut instinct to use that one, I sort of forgot.

I know my husband told the people at the paint store about my chemical sensitivities. I know he believed he was choosing something that would work for me. I know we both believed that the fumes and the chemicals would dissipate once the paint was dry.

But it's been months since he painted now, and they are as strong as they ever were. And on really hot days, when we needed to close the windows and run the A/C, I would end up with migraines. Every time. And every time we close the windows for any reason, I am immediately ill and my head begins to hurt. So the third time I got a migraine we decided that I couldn't stay in there anymore, and now we're back in the house.

We saw the light at the end of the tunnel. we finally thought we were on the way to getting out house sold. And then the tunnel collapsed, and we were trapped inside. With no one to dig us out. And no goddamn spoons left.

So WTF do we do now?

We honestly don't know.

We looked into some possible solutions - the husband remembered reading about AFM Safecoat, and thought maybe we can use that to seal in the fumes?

I turned to the internet, and found this thread. I read the whole thread. It took me hours, so I don't expect anyone else to. But the gist was, this was NOT our fault. Not even a little. We enacted what we believed, and were told, would be an effective solution for our needs. Just like the hundreds of people on this thread did. In fact, this has  been happening for a LONG time. And the paint manufacturers know all about it. They will refund people's money, pay to have things repainted...but the thing is, the only thing that has worked for ANY of these people is to pull our ALL of the drywall and start over from scratch. An incredibly expensive, disruptive and time-consuming solution to a problem none of them created.

But we don't have drywall to pull out, because we used this on cabinets. Every cabinet in our RV. which are made from cherry wood. So what is OUR solution? I assume the wood is also porous, which was the problem with painting drywall - the paint and chemicals seeped into the pores of the drywall, rendering it stinky forever.

So what is our solution?

Right now, other than trying to recoup our costs, we have none.

Monday, August 17, 2015

no sign of land

I have two posts partially composed about how we're about to move into the RV, and here are some photos to show. They were waiting for me to add said photos, because I want to show you a before/after scenario, and that means spending some time in photoshop as well as making sure I take photos at roughly the same angles.

But life seems to have other plans. Plans like making our already overly-complicated lives even more complicated. And just when we're seeing light at the end of the tunnel, the tunnel collapses and traps us inside. I'm finding it difficult to see it any other way right now, because it just feels like no matter how hard we try, this is just never going to happen.

Here's what all chronic illness sufferers never tell you (or really, we do, people just don't really ever hear us or "get" what this really means): Life with chronic illness feels like drowning with no sign of land. I'm not talking about the illness itself. Those of course all have different symptoms and manifestations.

I'm talking about life around chronic illness. Being a caregiver. Needing care. Trying to take care of all the daily tasks of living while also holding down a full time job and being a caregiver. Trying to take care of all the daily tasks of living and just never being able to. And watching medical bills destroy your savings, then watching them accrue and accrue as credit card debt because there is no more savings with which to pay them. And this is WITH excellent insurance.

People don't see all of the costs associate with a chronic illness that insurance won't cover: traveling everywhere for medical care, places to stay if one needs to travel, all the copays not covered, all the extra out of pocket expenses, all the supplements, treatments not covered by insurance, deductibles, all the things that need to be done to the home to make it suited to life with chronic illness.

(Example: "We don't cover bed wedges (needed to sleep in a semi-upright position to combat my dysautonomia an improve my BP). Those are to see if you need an adjustable bed (which they WILL cover, at 80%).  And... ALL my meds need to be compounded, but insurance only covers 50% for compounded meds. I have six prescriptions, none are less than $20 a pop, some are more than twice that. PER MONTH. geneticist is a 3.5 hour drive from my home. So each time I see him, I have to pay for the gas, wear and tear on my car, and exhaust myself driving the 3.5 hours to visit him. My MRI/CT scans were also 3.5 hours away, and covered at 80%. I had to pay the rest out of pocket, which was close to $500. And on and on.)

This is just MY health care costs. I have a friend who has two children in my same situation, plus herself. Three people in her family have these kinds of health needs and expenses. Every month. And no outside help.

And there are ZERO resources to help with this. No support services or outside help - when you live with chronic illness, unless you have some spectacularly amazing friends and family, even if people were there to help in the beginning, pretty soon there is "assistance fatigue", and everyone returns to their normal lives. People think, "Oh, someone else is helping them, I don't have to," or maybe they just can't be bothered, I don't know. And they forget all about the people with chronic illnesses. And I won't lie, we really do need the most help.

Meanwhile the partner, who has been unwillingly inducted into the role of "official caregiver", is stuck doing the job of seven people. Cook, housecleaner, caregiver, 40-hour-a-week day job (because we have to pay those medical bills and keep a roof over our head and food in our bellies), errand person, advocate, driver, and don't forget able-bodied parent. My husband has also been handyman, painter (of the RV), lawn maintenance person, and more. He is freaking EXHAUSTED, never gets fun time for himself, always has the most ridiculous "Honey Do" list ever, and he has zero support system.

 I at the very least have an online community of support - others like myself - and even though some of us DO know each other in real life, it's super hard to have any sort of get-togethers and human contact due to various health issues. We have a couple of families we see semi regularly, who are able-bodied, and I love that they will come here for visits because of my issues - they are amazing people. But it's mostly their kids and the Moms and I who are friends, not so much the husbands. SO *I* have a sort of support system. My husband does not. 

When we DO get help from a friend, I am crying with gratitude. It's crazy amazing what a non-fatigued, able-bodied person who isn't bogged down with taking care of a chronically ill family is able to accomplish. I mean, the contrast between what they can do and what we can do is mind-boggling. And vast. I am grateful that we have anyone at all who will come and help us try and make some kind of dent in this. She drives almost four hours to do it, too, once a month. Her son and our son play together while we do as much as we can in one weekend. It feels super important to mention that I have this, because 1) I am so incredibly grateful for this kindness. And 2) Not everyone with chronic illness even has this. 

And not even what I meant to post about. But is also necessary backstory to what I did mean to post about.

Which is why we were in the RV for about 4-5 days, then had to move back into the house.

I know.

But now that's the next post.....

Sunday, July 19, 2015

This here's Bessie

My husband has spent the better part of the last 6 months getting to know our RV inside and out. Since he has been the one doing almost all of the manual labor of tearing down shelves, making new ones, painting, repairing, replacing, etc, he has REALLY gotten to know our RV.

We're trying to come up with a good name for her, for once we're on the road. The obvious ones like "The Tardis" (it really IS bigger on the inside) and "Serenity" (I aim to misbehave) are already taken, by many other RVers. This doesn't mean we CAN'T use those names, but just that it's not so unique anymore. I want a name that will speak to who we are as a family (both of those do, actually).

Some I've come up with, but my family has voted down, are: 

  • Bohemian Rhapsody
  • Heart of Gold 
  • Unwritten 
  • Unless 
  • Closer to Fine 
  • Exactly
  • The Improbability Drive
  • Rainbow Connection
  • Serenity
  • The Tardis
  • Allonsy
  • Bad Wolf
  • The Pugmobile (actually my son came up with this one, and it hasn't yet been shot down)
Props for anyone who gets ALL of my references. Or even some.

Since my husband has been in the RV so much, he has taken to calling it "Bessie". I'm not sure why, since when he told me, I immediately said, "This here's Bessie. finest road paving machine this side of the Mississippi," and he said, "Was that the name of the paver in the Cars movie?" I guess he thinks of our RV as a pet cow?

So maybe "bessie" is in the mix for a name. I don't know what it will be, but we're going to figure it out soon!

What would you name your RV? 

Saturday, July 18, 2015

Sell All the Things!

The RV is ready. Ready!

It's finished enough that anything left to do can be done with us occupying the RV. Living in it.

I'm almost in disbelief.

This process has taken a full year to complete. And then some! A YEAR! 

We haven't listed the house yet. We haven't moved into the RV yet. We haven't even sold allthethings we're intending to sell yet.

But we have FINALLY made some real, tangible progress, and are *thisclose* to moving into the RV. We'd be doing it this weekend, but our son requested we stay in the house while his BFF is visiting from up north.

This is fine, because there is PLENTY to do inside the house still = like The Completion of the Sorting of All The Things. 

And we're even almost finished with THAT - save for the kitchen and the garage. The garage. Dun dun duuuuun!!! In our house, the garage is also known as "The Place We Put Allthethings We Don't Want to Deal With Now".  So that will be a delight. The good news is as I have been sorting through the house and needing the plastic bins in the garage we won't be using for the stuff stored in them anymore, I have been bringing them in and sorting through them. So it's not quite as daunting as it could be. The other good news is that we have a dear able-bodied friend who has limitless energy and a powerful desire to organize coming to visit this weekend, and while our son is occupied with her son (his BFF), we are going to borrow her mad skills and able body for help.

So we MIGHT just be able to completely finish ALL of the sorting THIS weekend, with her help. Fingers crossed! Because we have an appointment with the buyout guy for next Friday, and we have to have EVERYTHING we are selling ready to show him. Incentive!