Long time, lotsa stuff.

I read a post today by Swiss Army Wife. I had originally begun reading her blog back when I was looking for a source to interview about unschooling for an article I was working on about the topic because  a reader had written in with questions. I have no idea about the unschooling philosophy and I found a post she had done that explained it brilliantly. We corresponded through several emails and still I enjoy her posts. She writes in a very relational manner. Today’s post that I read had to deal with the physical *stuff* her house has and the *stuff* that one carries around through life and how having stuff can help children become good consumers. Great post. But it’s funny(not in a haha way) because I’m dealing with our own *stuff* over here!

Our situation is a bit different than hers, of course. We all individualize our stuff and the impact of the stuff will always differ as well. I have hoarding tendencies. Having OCD, which hoarding is a symptom of, is what leads me to want to hold on to EVERYTHING. I’ve been battling this since my teen years. And it’s cyclical.  I get stuff. I purge stuff. I get more stuff. I purge stuff. I get even more stuff. I purge stuff. I had made a promise to myself that once a year, at minimum, I’d go through the house, room by room, and clean out the corners and closets and all horizontal areas that hold my stuff and get rid of what’s not necessary. This custom is often called “Spring Cleaning,” and we also do this just before the Christmas holidays as well. I tell the kids, if you want new stuff, we gotta make room for it.

The first thing we do is find trash: broken toys, broken things, holey and un-fixable clothing, etc. Then we find things we just don’t want anymore. Whether they serve a function or not, if we haven’t seen it in a year (or six months), it’s not likely to be that useful to us. So off to the sell box that item will go. I have a flea market area that I sell stuff at. I pay $35/mo. for it and the stuff I sell there usually pays the rent on the booth. Sometimes, I even get more!  I used to think I’d do garage sales but have found I’m not into them that much at all. This place is a building that rents out booths inside. The lady who runs it takes care of the selling, keeps track of the price tags (each booth has a # on the tag) and does all the accounting, etc. So, really, all that’s left for me to do is to cart the stuff and place it in there with price tags! Talk about easy! That is something I can do. And I get rid of a lot of stuff that way! Friends and family members have begun to contribute stuff too. They just want it gone mostly so away it goes. When I do get money back, I usually use it to buy something extra for someone I know is having a difficult time.

For instance, a friend in need of $40 to get to payday. A friend who needs $200 to buy her insulin for that month. What have you. There are people all around us that are in tough spots. I’m not missing that money. If by the grace of God, there is no immediate friend in need, I donate it via paypal to a worthy cause (usually autism related). Or… very rarely, I give it to the kiddos. They get an allowance and so it’s not important to them much either to see the money they get from their stuff either. Of course, I end up in need at the end of the month, nearly every month lately and this month in particular. But I never get the extra money when I am in need anyway. It’s always when I have extra funds already. Weird how that happens.

Anyway…. we began our spring cleaning yesterday. it takes a long time these days because of our physical issues. We can barely keep up with day-to-day cleaning, never mind that down-deep stuff. Ya know? Dishes, laundry, vacuuming, sweeping, mopping, toilet cleaning, etc. That stuff? Most of it we’re unable to do in any sort of timely way. It can take me up to three hours to do a load of dishes from one meal. So part of our support services includes a PCA: Personal Care Attendant. This person is in charge of cleaning, meals, running errands and supervising/giving baths. Well, we’ve been having serious problems with getting a “good” PCA. Either the person doesn’t clean well but cooks great, or can’t cook but cleans really well. But most of the time, the person can’t do either. I had one girl literally stand in my kitchen and twiddle her thumbs waiting for the hour to finish. I asked why and she said “well, the form says I have an hour for meal prep. That’s all done so I’m waiting for the hour to pass.” **sigh**

We were told that if they finished before the allotted time, they move on to the next task and save the remainder of the time for another day. Or, in the very beginning, they were allowed to use that time to do tasks that needed more time but we’re not given enough time. As an example, laundry is never given enough time. They give us just one hour a week for laundry. My washer takes 55 minutes to complete one load!  So, theoretically speaking, in the beginning, they were allowed to take the extra 45 minutes that were left over from meal prep and spend that time doing laundry but write on the form that it was done as meal prep. I guess that was a legal no-no so they have since disallowed it. So, instead, now they save the time for another day when they can do more meal prep. Whatever.

My oldest, Thomas, last month developed scabies. Now, scabies is a type of mite that burrows in the skin. These mites normally aren’t a problem unless a house is particularly dusty or “crummy.” This was what was explained to me by our family doctor. My son Thomas had a particular nasty case that took two or three treatments with the prescription cream to get rid of them. We bought him a new bed. We hand-washed his bedding (with a pole from a broom) in boiling hot water. We meant business.

However, we didn’t realize that his sitting on my husband’s fabric office chair would be a problem. The scabies jumped into the chair and burrowed into my husband’s hind end. Yeah, good thing he doesn’t read this blog, huh? At any rate.. he’s been treated twice now (second time was today). To me, it wasn’t as bad as Thomas’ but I’m sure he’d think it was. The itching is horrible and when they scratch, they open up sores on their skin which can become infected if they’re not careful. The scratching is also how scabies spreads throughout the body.

The only way to get scabies is through skin-to-skin contact and/or through fabric sharing (like bedding, clothing or fabric office chairs!). There are sprays out there that can chemically treat mattresses but I chose to get my son a whole new bed just to be sure. My husband sleeps in a hospital bed that has a vinyl mattress so that was easy clean-up! The dust that had settled on the hospital bed rails, the workings at the headboard and foot board.. the wire to the remote.. all of it SO dusty!

My youngest son, after wrestling without shirts on with his brother, did develop a small bit of it on his chest. One treatment and it was gone.  The scabies have not come back.

I have not yet gotten them.

The PCA that was in our house during the whole episode since last month never got them.

Last week we were informed that our agency (caseworker for hubby, nurse and PCA for both of us) that they would not be sending out ANYONE to our house until the “situation” was “under control.”

Pardon me? This whole time they knew of the scabies because it was their nurse that diagnosed my son. I was concerned but originally thought they were regular bug bites but they were so small (pencil dot size).  I had wondered if they were chicken pox. She took a look and said “Nope.. they’re grouped together and chicken pox is more spread apart. Those are scabies.”  Of course, these evil images of unkempt and unclean people went through my mind and I thought, But that’s not us!

And it’s not. The other side of my OCD is cleanliness. I used to be fanatical about it from the time I had gotten pregnant with my oldest until about two years ago. That would be the years 1997 until 2007. So, ten years of being a fastidious cleaner.

Now, I know those who knew me in my teen years and early childhood is going to laugh reading that. Because during those years, my OCD was expressed via hoarding. Which you cannot be a fastidious cleaner when hoarding. I don’t care how hard you try, there’s just too much STUFF.

There are names for these two distinct persons within me. (don’t look at me that way!) Anyway… one is Heather. Heather is very neat and orderly and everything in its place type of person. Then there is Elaine. Elaine is messy. Elaine is creative and vibrant and is so focus on IDEAS that she doesn’t notice the STUFF. Heather usually deals with that stuff. Doesn’t make sense? Don’t worry, it never does. LOL.

At any rate, over the past two years because of physical reasons, the fastidious cleaner has taken a back seat. I am just physically unable. It’s taken me two years to even admit that to my doctors and I am at the point where I have two choices: sit or lay down. I can no longer stand up for more than five minutes at a time. It’s the degenerative joint disease. Not to mention the fatigue from fibromyalgia and the cancer. So, I’ve relied on other people’s cleaning and have worked very hard this past year to let it all go. To let go of the idea of control over the cleaning process. It’s never going to be as good as *I* could clean it, right? So, I have to let it go.

After my PCA agency informed us they would not be sending us our PCA person anymore, my husband had an appointment with our physician. When my husband informed him of the situation, the physician was not all that happy about this, for a number of reasons. One thing he said is that they obviously did not research this “scabies” thing because unless she is lying down in my husband’s or son’s bed or bumping uglies, there’s very minimal chance of her getting it from either of the boys. And as far as laundering goes, she wears rubber gloves when she does homemaker chores anyway, so, again, minimizing the chances.

He also said they obviously haven’t been keeping up with the dusting and wiping down of things if these mites are in my house to the level such as they would burrow into skin and be so treatment resistant. So, I took my blinders off when my husband told me this, and looked around at the place. I had put these somewhat metaphorical blinders on since I had no control over the cleaning process anymore and all it did was upset me if I didn’t wear blinders.

My mind is a funny thing. I can turn off certain senses, either wholly or partially, depending on need. When I took the blinders off and looked around, I had noticed just how bad things had gotten. I knew this latest PCA didn’t take the trash out like she was supposed to. She’d fill it and leave for the day. I guess hoping one of us would empty it. Well, if we were up to that task, we wouldn’t need her then, would we?

I got so disgusted one day when I opened the cabinet (it’s under my kitchen island) and noticed that not only was the trash can full, there was a full bag of trash next to it, and trash falling around inside of the cabinet. It’s a two-door cabinet that is open all the way under the length and width of the island. That’s a whole lotta trash! This was sometime prior to her last day with us.

Because we do not have a trash service (we live in the boonies) we take our trash to the dump. To minimize how often this is done, we recycle and burn. The burnables have their own bin underneath the island and so do the soda/pop cans. The soda cans pay for the dump runs (gas and cost of dumping). My step-father is the one who hauls trash to the dump for us and recycles the soda pop cans. My oldest is the one who is in charge of hauling out the burnables and burning it in the burn barrel. The underneath of the island cabinet was SO full of trash and spilled soda (the dribbles from the cans she tossed under there without rinsing!!), and other gobbedlygook that I nearly vomited. Literally.

I spent four hours cleaning out the underneath. My oldest helped me take trash bag after trash bag outside. He helped me rinse off the soda cans and place them in the recycling bin outside for my step-father. My youngest helped me by reaching in to the back and gathering the stuff forward. My husband helped by sweeping the innards so I could spray it down and clean it really well.

The next day she arrived, I showed her the island inside. And she said, “Wow! I’m so proud of you!” …. No, I didn’t smack her. I just explained that, again, we have trash barrels literally three steps outside of the sliding glass door over there for her convenience. And let it go.

Well, that Friday, I went to throw something away, and again, I saw a trash bag NEXT to the trash can…. both full. I was highly agitated. Since she had already gone for the day, I figured I’d talk to her again that Monday. Well, that Monday, I ended up sleeping during the entire time she was here (my schedule is so far off again) so I didn’t get that chance.  When I woke up, that is when my husband informed me that she had asked about the scabies. After more than a month of being here, she finally decides to worry about it? Really? Okay, no big deal. Hubby had explained to her where they came from, how they get contracted, how they don’t… etc.

The following day we received the notification that we would not be receiving PCA services any longer until the “situation” was “under control.” It’s as under control as it possibly can be! So, my husband called and spoke to DHS (department of health services) and asked them what can we do to change service companies for both of us. And we began the steps. See, it isn’t JUST this no-PCA for you moment. We’re tired of this company. They’ve changed personnel in the office and the girls who work the phone line are just plain rude and uncaring anyway. Not to mention the skill level of the PCAs are often times lacking in huge ways. I had one lady say she only works perdiem because her back issues and she went on and on about them. I said “Sounds like you need a PCA.” And she agreed. How could I let this lady (who was in her 60’s) do my dishes knowing how bad it hurt her? I excused her from duty that day and asked they send another fill-in. I mean, just instance after instance and I won’t bore you with the little details of all of them. This was just THE STRAW.

I may be off on which day of the week it happened. Time is a funny, fuzzy thing for me. But the point is still made, yes?

Okay… so this past Friday (and I’m sure of that day), my husband was told that on Monday, his last case manager would be calling the new company and transferring services. I was called as well today or Friday (don’t remember which day it was) and told that my services will change as well through my case manager. Because my program is through Medicare and hubby’s is through the state program, we have separate case managers.

Well, Monday came and sure enough, the new agency was called. They have an appointment to come out here tomorrow at 9 a.m. Okay, later today because it’s 4:15 a.m. as I write this. We were very impressed with the speediness that this new case manager was handling things. The case manager, the nurse and the PCA will be out at 9 a.m. Of course, Heather being Heather, has spent the time going through, room to room, spring cleaning and getting rid of stuff. Especially now that the blinders are truly off.

1. I didn’t want to be embarrassed at how dirty the house had gotten. I realized she didn’t even wipe under things on the kitchen counter (coffee pot, for instance, toaster…).  She didn’t wipe down cabinet doors when something spilled. Just… little things. And apparently, she never swept behind the dog food feeder either.

My bedroom? There wasn’t a horizontal space left to put anything. I had no place to lay my eyeglasses down. That’s disgusting. Books, cups, dishes, trash, etc. Now, part of that is pure laziness and partly because of her. She’d pick stuff up if I asked her to and she’d pile it on top of my dresser or somewhere. For instance, once we had caught up on laundry, we were putting some away. She asked me where did I keep my shorts. i said the short dresser in my room, second drawer, on the bottom, on the left. She placed them on top of the short dresser. See?

The dishes were mine. I was laid up in bed for a few days a couple of weeks ago (I think it was that long ago) and I never bothered to clean up after myself because at the time, I couldn’t. After the fact, it was too much.

2. I didn’t want to be embarrassed by how dirty the house had gotten!

Okay…. pride. It’s a hard thing to swallow. I’m not able to even make a pot of coffee because the pot filled is too heavy for me to lift. How the heck am I supposed to lift a heavy pan in order to clean it or put it away? I need to admit to myself, again and again, that either a) i’m unable to do it or b) i’m being lazy. Since I know it’s not a laziness issue, it has to be that I am unable to do it. So I need to get over this embarrassment, right?

3. I didn’t want to be embarrassed by how dirty the house had gotten!

Okay, and plus I did need to do my yearly cleaning thing but I’m seeing a pattern here. I had started cleaning on Saturday. I got half my bedroom done. Then on Sunday, I got the rest of it done. and tonight (Monday “morning”) I got the office desk top cleared off. There’s more left to do but I’ve come to the point where it just takes me too long to get stuff done.  My husband was supposed to take care of the office and with the boys help, the kitchen. He wasn’t able to do that today. I don’t know why, but he wasn’t. I take him at his word. He didn’t have the spoons. So I had tried to do it and ran out of spoons myself.

Okay. We have stuff. Our stuff needs to be cleaned and cleaned out. We need help doing that. Why should we be penalized because the person in charge of helping us clean out that stuff didn’t do their job right? The doctor told us that was the case. That had these women (there were quite a number of them since we started this company and only 2 of them were thorough to my standards… I miss you Dominque and Jacques!). And Kristen. She was sweet.

Anyway… So, I decided to stop cleaning. I’m not getting very far anyway. These people need to see what my house is like. Why give them a false picture of it? They need to see the truth so that they can help us properly.

Well, that’s what I’m telling myself to make myself stop wanting to obsessively clean. See? See how easily I’m able to justify my OCD habits and behaviors? Really, I’m feeling anxious. I have an anxiety disorder so that’s not all that surprising, is it?  And this was a perfect excuse to get back into the old obsessive cleaning habit. Only.. i cannot do it. I just cannot physically do it anymore. Gosh, this sucks!

So, instead I have to do some inner cleaning. I have to come to grips somehow that I am still a worthwhile human being on this planet despite the fact that I can no longer clean or keep house the way I think it *should* be done. It surprises me how I get into these traps. I buy food to cook these four course meals like there’s absolutely nothing wrong with me and I”ll be able to pop out of bed in the morning, mix up the bread dough, set to rising and get on with the day’s chores. Yeah, right. Not anymore!  Not even on my “good” days.

**sigh** I remember when good days were really good. Those days I cooked breakfast, lunch, dinner, had a sparkling clean house that Martha Stewart’s staff would be proud of! My dining table would be set (tablecloth, linen napkins and place settings, all of it) in between meals. The dishes didn’t pile up. The clothes didn’t back up. I’d have an occasional bad day in there where maybe the laundry didn’t get to that day or the dusting. Or what have you.

Then… well, then, there were an equal amount of good days and bad days. But the good days were so good! I could cook lunch and dinner and do most of the chores. I could pick a room and get it done before the afternoon programming came on! And mind you, I wrote during these times as well.

And then.. well.. and then there were more bad days than good days… but the good days were SO good! I could cook dinner and clean up clutter around the house, and do the dishes and throw out the trash… and well, you see?

What I consider good days these days are the days where I’m up out of bed.

It is so hard… so difficult. My mind is there. My mind is mostly the same as it was when I was physically able to do things. I used to run. I used to walk for miles. I used to work four jobs (two part times, two full times) and write. I used to have friends I’d visit or have come over. I used to… I’ve lost so much because of the physical-ness of it all. But my mind… my mind remembers it all. And it keeps trying to tell my body “You can do it!” and when I try and fail, I am more miserable than ever.  That’s what happened over the past weekend. I forgot. Again. While my mind may be mostly the same, my body isn’t.

Even as I sit here and type this, I have pain shooting up my spine, soreness in my forearms’ muscles, pain in my tailbone… and there’s this burning painful sensation in the skin on my back. Like I have a real bad case of road rash. My calf muscles are really, really tight. And that’s not to mention all the freakin’ coughing! Ugh, did I mention I’m sick? Like… with a cold? I’m not a happy person when I’m sick, can you tell?

Sweet friend of mine, Lady Zee told me of cucumber with sugar… I made a shake of it and yessss…. it cools and soothes the throat SO well! Thank you sweet lady! xoxo Yes, it has made a difference.

Oh where was I? Oh yes, so life is miserable for me right now and because I’m sick on top of everything else…. well, I’m focusing much on the negative aspects of my *stuff.*

Oh, and maybe I’m just a wee bit anxious because on Wednesday morning I have a CAT scan scheduled to see if the cancer has grown in the past three months since the last scan. Maybe. Just a tad bit scared. But not much.


2 Responses to “Long time, lotsa stuff.”

  1. April 20, 2010 at 3:41 pm

    Sending you happy thought and positive vibes and the confidence that everything is going to be okay! 🙂

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