Before I go off into La La Land on the intended topic, I'll give a quick D update for those of you who ask about it.
D went back into the hospital on Friday for a surgery on the incision site of the old pump. He only went approximately 5-7 days infection free, and then developed another infection mid week last week. There has been something mysterious in the wound that no one has been able to figure out. A hard something. First they thought it was scar tissue, then they found out that it was this meshy substance that they place around the pump and stitch the pump down with to keep it from moving. When they removed the pump, they, ahem, forgot to remove this stuff. So it has been causing problems (and infection! and has not promoted healing! Go figure!) and had to be removed. So the surgery was to clean all that stuff out.
The good news is that they were able to cut out the bad parts of the skin around this incision and just stretch the skin over and close the wound. So, we have hull integrity again. This is a very important step. Pathologies of the meshy intruders came back positive for MRSA and strep. Next is more antibiotics. So Vancomyecin for the next week or two and time for the wound to heal, and then if all goes well, the next step will be to get the pump replaced. (And no, the doctor who made all the mistakes in the first place will not be replacing it. D is done with her and has moved to a new pain management doctor.)
Also, D's dad and I, who have been suffering from minor but annoying illnesses for the past three months in our throats and sinuses are looking into getting on Mupirocim, an antibiotic to treat MRSA colonizations in the nose and throat via (ick!) a nose spray or ointment that you put in your nose. I think his and my respective doctors have been a little bit disinterested in our problems by not even offering a culture when we tell them that we are caregivers for an MRSA patient. All we are doing is passing it around to each other and although not life threatening for us, it certainly doesn't make it any easier for D to heal and it is sometimes life threatening for him. So, I am hoping that while D is on Vanco and with a closed wound, this would be a really great time for us all to get treated at once. I might even see about the kids and the cat...although I don't look forward to being the one who administers nose spray to them. (Ick again).
Oh, and in another good update, Naim has gone for two days with no accidents and has taken to going to the bathroom without being
forced asked. Yippee yea! I think something clicked and he's turned a corner! I'll, um, hold off on my Aaron potty training report at this time.
Okay, now for my living in dreamland post.
As you who read this blog regularly know, D and I don't have the best living arrangement. I don't like to complain too much, because compared to a lot of disabled people (and people people) we have nice, safe places to live. My house is not huge, but for our area is a bit upscale. D's apartment is a standard apartment in a nice complex with stupid high rent and a bathroom he can barely use. And then we spend our days running up and down the quarter mile in between us to get things done and see each other.
I won't rehash all of my issues with living in my father's house, which will always be my father's (or after his death, my sister's house) and never mine. For him, it is an investment. It has appreciated nicely. Very nicely. (I should get a finders fee for picking this neighborhood, but I'll never get credit for that.) Anyway, it is disconcerting to me that he often talks about how much he would make if he sold it. I get that it is more hypothetical "wow! look at how much the house has appreciated!" talk, but it is my home, my children's home and I would like it to be a home with 'soul' for lack of a better word, a home that develops roots and a strong foundation of stability for my kids (and me) but it is hard to feel like that when you are living in someone else's real estate investment.
I think that it could be okay and even great to live intergenerationally, but everyone has to be at least somewhat committed to the notion of family and sharing and working cooperatively and respecting each other. Sometimes I think we could do this. I have this plan to come up with ways to get my dad more on board with the fact that when he is here, he is part of the family. This isn't just his summer boarding house where he sleeps and eats and then goes out dancing or to "go have two beers." He impact my life and the life of the kids. He can either decide to be a positive, loving, respectful part of it or not. It is yet to be seen whether we can work that out. Sometimes I remember feeling more connected to my ex-boyfriend's mom's house that I stayed in for a summer or even D's family's house than this one. But sometimes I really want to make it work here.
D and I have considerable challenges when we consider living together or buying our own place again. We have two disabled people who need housing accommodations that don't correlate to low-cost housing. Neither of us can live in the country or in a much smaller town. He needs to be close to comprehensive medical care and I need to be close to public transportation and services I can purchase (grocery delivery) or get to by transit.
In many metropolitan areas that are big enough for us to have our needs met, housing and lot costs are extremely high. So what most families without a lot of means do to find housing is to rent apartments (which semi works for us, but we still have a space and accessibility problem there.) Or people buy row houses or condos. I would be okay in a row house or condo, but D could not live in one. In our area, the lower cost houses are typically three levels that sit on very small lots. Garage and maybe a bonus room or den on the bottom floor, kitchen and living room on the middle floor, and bedrooms on the top floor. There are very few affordable ranch style houses available around here. The lots are too big for people to afford.
Also, and this is hard for people to understand, D needs some amount of square footage. In an average house, the doors are only 28 inches wide, sometimes smaller in the bathroom or closets. D needs at least 32 inches. The threshold of the house really can't be more than a few feet off the ground before you would have to make a ramp so long it would wrap itself into the street. Also, in between things, like kitchen counters and bathroom sinks and such, has to have space to actually get around in. In most bathrooms, if D can get in at all, he cannot reach all the facilities. Same for the kitchen. He might be able to reach the kitchen, but then not the fridge or the sink or what not. And oh! how fun it is (just ask my dad) to cringe as he tries to turn tight corners with his 500 pound wheelchair banging into the woodwork and peeling holes in the drywall. Then there is storage. Everything he needs frequently needs to be placed about 3 to 5 feet high. The above kitchen cabinets are worthless for him, as is the bottom shelf. So space isn't really a luxury, it is a necessity. And that is really hard to find and be affordable. Sometimes even if you find a house with the bare bones of accessibility (like his parent's house for example, a two story but with some bedrooms and bathroom and kitchen and living room on the main level), the amount of remodeling you would have to do to make it really livable for D is quite expensive.
One thing that is probably affecting D's health more than we know is that he doesn't have a shower he can use in his apartment. He has not taken a shower really in years. People think that apartment landlords have to provide for these things and, um, no. Little stuff they will do (with a fight) but they don't have to install roll-in showers or do big renovations. They only have to allow you to do them at your own expense and you have to change it back once you leave at your expense if they demand it, so most disabled people don't bother with it and just deal.
So D and I are always swishing around silly housing ideas in our head. We know we have it good, compared to those thousands of disabled people in nursing homes or homeless or on 10 year waiting lists for section 8. But we are paying for two households now on not very much money. Paying double rent and utilities is just kind of wasteful. D's father is doing a lot of attendant work that I could easily do if I lived there, but I can't leave the kids at night or drag them with me easily. The kids don't know anything other than having two households and going to 'daddy's house' but they do miss him on days we can't get over there and sometimes they don't want to leave when I have to go. D would get more time to spend with them, and I would get more time alone. D could watch them and I could be back up but still do my own thing in the house.
We are really liking our neighborhood (the one that I handpicked!), it is suburban-y, yes, but for convenience purposes, it can't really be beat. D's parents live less than a mile away. We have grocery stores, church, pharmacy, my gym, etc. within walking distance. We have the light rail station within walking distance and also two bus lines. The light rail goes into our little suburban town with the library, bank, parks, little town shops etc. Take the light rail the other direction and you hit the children's museum, zoo, and downtown Portland with all that downtown Portland offers. Museums, orchestra, ballet, theatre, etc. We have the ocean and ski resorts about an hour and a half away. (We don't peruse these much, but the kids might when they get older. The kids and I get to the ocean at least a few times a year.)
The climate here is good for both of us. It does rain, but it rarely snows. It isn't too hot in the summer for D, who doesn't sweat and gets dangerously overheated in hot weather. It is rarely icy so we are not stuck inside. (Wheelchairs and snow don't mix. Neither do white canes and vision impairments. Makes it a f**ing bitch to find the other sidewalk across the street.) It is also a quite liberal city politically, so there is a lot of environmental programs going on (i.e. all of the buses are hybrids), and alternative lifestyles are pretty accepted here.
All this is to say that the location is great for us, just the actual housing situation isn't.
So, we've played around with this idea for 5 years now. An idea that is pretty far out there and I can't even begin to think of how we would make it a reality. But I took the first step today. To what end? Probably none. But whatever, you might as well try rather than throw up your hands and quit before bothering. (And you know who inspired me? Ms. Baggage. A woman who is, in some ways, in similar circumstances to me and just bought her first house today. Go Baggage!)
Okay, so here is the deal: Between my church and the train station, along the train tracks is a strip of land. Big enough to put a house on but probably too small for a big development to come in. And besides, the train...the train that comes every 15 minutes from 5am to 1am every day...is like RIGHT THERE. (Which is why it is so nice sometimes to be hearing impaired.) So we hypothesized that A) the public transit utility probably owns this land; and B) it probably isn't worth a whole lot.
And, then, many years ago, I read an article in the Oregonian about a triangular shaped block located downtown, right by the light rail tracks and owned by public transit was sold to a developer who used it to build a posh high rise for....ready?....$1. Downtown land! That's like, located downtown. In Portland. Downtown Portland. Let me put that into perspective for you. A 500 sq.ft. studio apartment on the bottom floor in this 8 storey building costs a half a mil. On the top floor? A two bedroom 1,900 square footer? 1.3 million dollars.
Now when I told my dad this a long time ago, his immediate response was, "Well, they aren't going to give land to YOU for a dollar!" And he is probably right. They probably got some kind of deal out of it. Some corporate trade that I don't understand or some kind of tax write-off or something. But, anyway, it gave me a glimmer of an idea at the time that TriMet sometimes has the opportunity to get rid of land for cheap. Who the hell knows, maybe this little annoying strip of land over here is something they don't give a shit about.
So, my first step that I finally did was to find out who the hell owns this land. And as I suspected, TriMet does. And I also found out that it is unincorporated, which I don't know exactly what that means, but I think it means that it isn't zoned as really anything or something. Much, much more research needs to happen in that regard.
So, step one in this far fetched parallel universe is to acquire the land for very, very little money. An amount that we could pay outright. Step two (probably the easier step, because it is more conventional in a way) would be to build a modular home on it. That would be accessible. And we would either mortgage that and/or look into fund raising or foundation grants or special disability programs (or get Ty Pennington to build us a house from scratch while I admire his cute little bod???)
I know, I know. Trailer trash. A modular home. But have you seen them lately? They are kind of like pretty damned nice! (just a "for example") And are spacious! And safe! And look like houses! And they are considerably (or so I am told) cheaper that a real house. And, almost all of them are basically accessible, and some are being made that have universal design features and we could have the roll-in shower and all that put in and not have to retrofit, which costs considerably more money.
And then we would move in, the four of us. Just the four of us. And my dad could come visit if he wants and stay in the guest room of MY HOUSE. And we would live happilyeveraftertheend.
From our little idea to actual reality has about 463,264 million obstacles and what ifs and who the hell knows if that's even possibles. There is zoning and neighborhood associations and codes and well, a lot of people just laughing us off and saying "Fuck, no" to us and mortgage lending and D's health and my over commitment problems that would make a project like this not really ever happen until my kids are off and having my grandchildren anyway.
What if I just commit to doing one step? The next step. That is all I commit to. I just make the one phone call. And if it seems worth going on then I make the next phone call, and the next. And if the road blocks get to be too much or if the reality that I'm out of my ever-loving mind comes to fruition then I quit? I won't be any worse off than I am right now. And I will probably have learned something about housing that might help me later on when I have my NEXT BIG IDEA. So it can't hurt, right?
So, I made the first phone call (email actually). And I got an answer that leads me to the next. Which is, what is that land worth, anyway? And that is all I'm going to commit to at this point. I'm going to research what that land is worth.