Twinkle Little Star

I know, I'm a Terrible, Horrible, No-Good, Very Bad Blogger

It's just that I've been.....

Cleaning.

Don't you wish it was something more exciting? Me, too. But what can you blog about when your day is filled with antibacterial soap and chorhexidine baths? Yeah, not much.

So, we cleaned and we shoved Bactroban up our noses and we decontaminated ourselves and D got up early (3:30 am) on Tuesday to go to the hospital and have surgery. You know, that surgery that was supposed to be the end of the whole Infusion Pump Debacle of '08? And he went to the hospital and checked into pre-op and they got an IV started and the OR was booked for 4 hours and three surgeons were scheduled (and a fourth infectious disease dude to consult on hand) and....

He was home by noon. No pump. No surgery, No finish line. He has a bladder infection. Two more weeks of IV antibiotics. And then they schedule the surgery again and we do all of the above cleaning, decontaminating and antibiotic-ing again.

What is most frustrating, of course, is that this is another thing that is more medical administrative related than health related. It has been about a month since D was off the last round of antibiotics. There was a three or four week window of opportunity where they could have gone in there when he was infection free, but they couldn't get their asses together to schedule it then. D told them back then that another infection would come, and if they didn't do things quick, they would miss the window. They missed the window.

Not only that, the UA that showed D's UTI was done the prior Wednesday. D didn't find out till Monday that he had a bladder infection. He had an appointment with the pain management surgery that day, and told him about it. He also told the neurosurgeon and faxed the pathology report to infectious disease. No one did anything. Then on Tuesday, they made us all get ready and get up early and all that and drag him there and then they finally got it together and were like, "oh, I guess you have a bladder infection." Surgery canceled.

Then one of the doctors said something that D doesn't care about but pisses me the fuck off. He said that they were really embarrassed and had mud on their faces about it because they had scheduled the OR and the OR staff and had messed up everyone's schedule at the hospital.

Yeah. Well, Waaah, fucking, waaaah. I'm sorry you'll be a little embarrassed at your next staff meeting and maybe get tsk, tsked by your OR administrator or whoever. But D has to go for at LEAST TWO MORE WEEKS with a PICC line (a new one because they took the old one out last time), spasms, pain, infection, antibiotics, home health scheduling fiascos, an inability to drive, and the whole taking so many extra drugs orally that he is spaced out half the time. And I have to go for two more weeks decontaminating everyone and having my skin dry out and fall off from chlorhexidine and having my nose run from batraban and, well, we are just a LEEEEETLE inconvenienced by this.

Not to mention that I'm planning (still) to go to that family retreat with the kids over the fourth of July and this surgery will put us right about there. Not to mention that no one wants to have surgery or be in the hospital the first weeks of July because that is when all the new people and interns start. Not to mention that they said the pump would have to out for two months and now we've gone over six. But, that's okay. I'm sure sorry that you had to cancel your OR today. Hell, maybe now everyone can take an nice extra long lunch hour.

</rant>

Not much else is happening, here. I do owe some of you some emails and I do have some posts written in my head. So I'll try to get back into the swing of things. I have another little "project" that I'm working on for August, but best estimates are that it has about a 30% success rate. So if that pans out, I'll let you know. I should know in the next couple of weeks.

The only other update I have is on the ever-so-exciting Potty training front. I think I previously reported that Naim is all the way daytime potty trained. And with few exceptions that remains successful. And Aaron? Well I will say we have made definite progress. He is at the stage where if I leave him naked, he goes in the potty chair pretty much 100% of the time. Put any clothes on him and it all goes to crap. But, Naim was here once, too and we got through it. I figure if they do the naked pottying long enough, those muscle memory habits will kick in eventually and they will think about it when they are clothed. Right? Right? He IS making progress.

And the only other thing I have to say about that is that I've had so many discussions with those boys about penises that I could really go with never seeing another penis for as long as I live. (At least the three-year-old variety. Ah-hem.) Gems from today:

"Mama? Do you have a scrotum?"

"Mama, when I get bigger will my penis go away like yours did?"
"No, your penis will just get bigger, too."
"NOOOOO! I don't WANT a bigger penis! I want a LITTLE penis!"

When sitting in stroller riding down the street, whips out penis for no discernable reason.
"Naim, you need to put your penis away. That's private and we don't do that outside."
"Okay, I'll wait till we go in the store."

....PLEEEEEAAAAASE make it stop! When does it stop? At four? At four does it stop? Tell me they will be all potty trained and not penis obsessed by four. Please?!?

In My Dream World...

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.

Uh huh.

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.

But...

What if?

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.

Not the Medical Post that Bliss Requested; This is Where I Rant and Stomp and Flail My Arms

ETA: You are about to read a very imperative shit fit that I'm required to have right now. Much as it may seem like I hate all health care workers, that is not true. We have truly had wonderful health care workers. Mostly nurses and therapists, but an occasional doctor, even an occasional egotistical arrogant asshole doctor that undoubtedly smokes crack in-between patients, but whose skills are teh awesome. Insurance companies, though? Yeah, we pretty much hate all of them across the board.

Over the weekend, D started getting sick again and had a fever. His nurse came over and found a VERY DISGUSTINGLY STINKY leftover piece of wound vac foam that had not been removed as it should have in some previous dressing change. It looks like psuedomonas.

So he is back in the hospital. This time, at the burn center again because they do the best job as far as controlling infection. The bad part of that is that the kids and I can't visit him there. kids under 12 aren't allowed. At it is clear across town and hard to get to anyway. I would have to find a babysitter to cover three hours of simply travel time. I'm glad he is there, though. They are militant about infection prevention. I get sick of the fact that he can't go into the hospital for long without risking that the hospital itself will make him sicker. Irony, no?

I have not been able to write coherently about the subject that Bliss requested: How medical people should approach people with disabilities. Because there is just so, so much wrong with it all right now. And it goes beyond people with disabilities and to just patients in general, especially those with chronic conditions. And then it goes to a systemic level in my head. Mainly I want to shake doctors and say, "Why don't you fight for us?" "Why don't you care for and value our lives?" Because they generally don't. The whole thing just blows up in my head.

D and I were discussing the fact that since his initial foot amputation, every problem after that has been contributed by or due to medical error or other external factors in the medical system that are beyond our control. To give you a rundown:

• In July of 05, D had terrible pressure wounds on both feet. Although he does take responsibility for the fact that he delayed in getting treatment for too long, a big part of the problem there was that a tilt-in-space seating system for his wheelchair was prescribed in 2002 to help his foot circulation. This would help in preventing pressure wounds in his feet and aid in healing. It took over FOUR YEARS for the red tape of Medicare to approve of that chair. He had his left foot amputated and a skin graft done on his right foot. He was hospitalized (sometimes in the BICU) for 3 months.
• In December of 05, he got the chair he needed, but it didn't work properly. Basically, it was a lemon. It took six months to get Medicare to approve repairs. In which time he used his old, stationary wheelchair. In January, his right foot had still not healed and taken to the graft. Although this is probably no one's fault directly, not having the proper wheelchair did not help. Also, the specialized air mattress that D needed after his foot amputations could only be rented by Medicare, and they only allowed for it to be rented for 10 weeks. Then they took it away. D went back in the hospital in Jan. of 06, and had additional surgery on his foot. He recovered in a nursing home, because we were not given enough funds for the amount of home health he needed at home. At home, this would have cost roughly $160 a day. His nursing home charges were between $700 and $1200 a day. Also, many nursing homes would not take him as a patient because he wouldn't turn a profit. So he did not have a choice as to where to go.
• He was hospitalized/nursing homed this time from early January to late April. During his time in the nursing home, he was not able to eat the high calorie/high protein diet that was prescribed for him. They offered things like plain, white bread with a piece of cheese and Bologna, tea, and a fruit or even just jello for a meal. His family and I had to supplement the food he ate in there almost daily. Furthermore, while in the nursing home, he acquired another pressure sore on his foot, and a very problematic pressure sore on his coccyx (butt bone). He left in April not having recovered, but because it was getting dangerous for him to stay in the nursing home.
• All summer of 06 was spent trying to heal the coccyx sore. He spent part of June and most of July bed-bound in his apartment in a makeshift bed that he made out of an old gel mattress, memory foam, and an inflatable overlay he bought online.
• In August, he had another skin graft surgery on the coccyx wound. He was hospitalized from August to November. All of these wounds were infected with MRSA or other bacteria, so each hospitalization required a PICC line and IV antibiotics.
• 2007 was a good year. No major hospitalizations or medical problems to speak of.
• In November of 2007, he was to go in for a routine surgery to change out his infusion pump as the batteries were running low. We were excited to get the new ($20,000!) pump because it would need less maintenance. According to the infectious disease dudes, the pain management surgeon should have started prophylactic antibiotics before surgery and also had D hospitalized a few days before surgery and prepped with a few days worth of antibacterial showers and betadine in isolation before surgery. None of this was done. No special precautions were taken due to his history of MRSA. In fact, every time he is in the hospital, they put a big fat sign on the door that says you need to gown, glove and mask before entering the room. I would say about one of ten medical personnel ever bothers to do this. The main culprits I see are the food handlers. Who go from room to room picking up trays, throwing the trays together that people have eaten off of and then going to the next room without even washing their hands. Once, D had a visitor who was a social worker from the hospital. She actually had to ASK what the big stop sign on the door was for. She thought that he just didn't want visitors. (When I worked at a medical school, I worked in a different building devoid of any kind of patient contact in an office setting. And we STILL had to take seminars and tests about universal precautions and infectious diseases. WTF?)
• After the surgery, D started getting sick and the wound didn't heal and was oozing goo. The pain management people treated it with antibiotics without culturing it.  They did not consult with Infectious disease. It was D who eventually had to do that.
• In January of 08, the pump literally started coming out of D's body. Pain management decided it must come out. We found out later that the new 'best practices' was to try to leave the pump in and put the appropriate antibiotics direction into the pump. Thus preventing baclofen withdrawal syndrome.
• Ah, yes. Baclofen withdrawal syndrome. No one warned us or told us anything about this. It was never mentioned. It can cause dangerous fluctuations in blood pressure, hallucinations and incoherence, autonomic dysreflexia, and it can disguise infection. Basically, you can easily die from it. D was sent home from the  hospital and within a day was incoherent and having hallucinations, incoherence, and fluctuating blood pressure. One night in particular, his BP was going from the 60/40 range to 240systolic over something I forget now. It just happened to be one of those nights when D had back to back to back visitors. First me, then Jason, and then his dad were all there and were very concerned. It was hard to have a conversation with him. He was short of breath. D's dad (with Jason, who is a nurse, on the phone) made the decision to call 911. I think that if people had not been there and taking his BP, he may have died that night. He was not coherent enough to make good decisions for himself.
• I had these absolutely crazy conversations with him on the phone for two or three days when he would talk a mile a minute and repeat everything multiple times and not really understand what you were saying to him. He got through withdrawal there with the help of Demerol, and came back home in a few days.
• He was much more coherent, but then the pharmacy (yea! for Rite Aid) called and said that the hospital had prescribed two drugs that were dangerously incompatible. The usual uproar ensued and new IV antibiotics were prescribed.
• Weeks went by and the antibiotics were finished but the open incision didn't heal. Goo upon goo was still leaking out of it. Pain management did nothing. Infectious Disease said the case was pain management's job. The wound people at crazy hospital A said it was infectious disease's case. Finally, D went to Hospital B's wound people. They put him on the wound vac.
• And here we are, pseudomonas in the wound and a strip of wound vac dressing discovered. Infectious disease saw him today after he called yesterday and said he was sick. They may have found more wound vac dressing stuck up in the wound. they admitted him to the Burn Center.

Still with me? Probably not, but this is more for me anyway. The thing is, even in this long list of events, I have left out a million little mistakes that were made with medication, communication, wound dressing stuff, treatment plans that contradict other treatment plans. People who don't have much contact with health care are so funny, it's cute. They act like health science is so exact and that mistakes are rare. And if there is a mistake, MALPRACTICE! I'm here to tell you that mistakes happen ALL. THE. TIME. Every single day. And I'm not counting bad outcomes from best guess judgment calls. I'm talking stupid mistakes. Most are unintentional, many are not serious, many are caught in time. But many, many mistakes don't necessarily cause death, but cause very prolonged and debilitating illnesses. I could tell you stories, not just from D, but from my experiences as a patient and worker in the hospital and my dealings with some of my other friends who have chronic conditions that would probably blow. your. mind.

Health care is a mess. An absolute mess. It is systemic. It is often not directly tied to the incompetence of the health care workers themselves, but to the adverse conditions they must work in and the system they must deal with. The thing is, if you don't have to deal with health care very much, you are probably going to be ok. But it severely affects those who have to live in the system. It severely affects the disabled.

With disabled patients, I basically see a few major disaster areas that affect them the most (but also all patients to some extent.)

1. There is this attitude that disabled people don't have lives. That they are devalued and have no quality of life. Doctors are sometimes very laissez faire about D and other disabled people. They don't want to deal with us, they triage us out of their circle of concern. They don't actually think that we are worth fighting as hard for. Sometimes, when I get this attitude from doctors, I have had to tell them, "Look, D is valuable to us. We want him alive and healthy. He has children. He has a father who is devastated anytime he sees D suffer. He has talents and friends and a life worth living. I need him. Very much so. He is not some DNR case we are waiting to be unburdened from. So, I certainly understand that you will be doing everything you can to ensure his well-being." This conversation has really helped in many cases. And every time I have it with  some egotistical neurosurgeon who wants to get rid of D so he can go do Big, Elite, Studly Neurosurgeon things, I find myself incredulous that I actually have to say these things. That I actually have to prove that D is valuable enough for health care.
2. Along with that, there is this attitude that disabled people can't or don't take care of their own health. Many times, a doctor or therapist will prescribe A,B, and C therapies and treatments. And then they tend to give up on you if you haven't complied exactly or they give you attitude about it. They seem to have NO idea that while they said for you to do A,B and C; another doctor said for you to do D,E and F; the PT told you to do G,H, and I: And the RT told you to do J,K, and L, and the nurses told you to do M-Z. Furthermore, C is contraindicated to F and B is a complete contradiction of K. Furthermore, you actually have to eat, sleep, work, and actually have a little free time. There just isn't enough hours in the day to do A-G, much less A-Z. So, since no one helps to prioritize or coordinate these things, we have to pick and choose on our own. Sometimes we may pick and choose the wrong things to prioritize, or we picked the one that contradicted you and that is pissing you off. It isn't that disabled people are necessarily being non-compliant (a word I fucking despise, BTW) it is that you medical people can't get together a coherent plan of care.
3. And along with that, health care workers sometimes don't seem to understand or care about the medical jujitsu (hat tip to Kathryne) that needs to be done to get anything done.  This medical insurance business is absolutely fucking crazy. People seem to think D is at home, leisurely lying around all day, recuperating and living off disability. He actually works ALL DAY LONG just to stay alive and get the health care that he can fight for. That apartment is never peaceful and quite. The phone rings off the hook all day long. Insurance companies wanting this or that. Durable medical equipment companies wanting this or that approval from insurance companies. Doctors offices wanting insurance information. Home health nurses and therapists wanting to schedule this or that. People coming in and out all day long. Mail, insurance forms and medical bills stack up daily. (I told D the other day that we could probably wallpaper the entire Sears Tower with the CMS/Medicare statements that come in.) Phone calls and paperwork he has to do to insure that he keeps his Medicaid, his Tricare, his Medicare and social security, his attendant care. You don't get put on disability and just stay there, you have to prove it again and again at the drop of a hat.  At anytime, any one of the dozen agencies that provide services to D will just decide that he needs to get a billion documents together to prove he is still disabled, still poor, and still under insured. Tax returns, doctors reports, income statements, rent and utility receipts, and whatever else we decide need to be in our office! And they need it in TEN DAYS or you lose all of your services and you will have to reapply, which will take you anywhere from 3 months to five years to get re-approved, and in that time you will not be able to see any doctors, receive nursing or attendant care, or get food stamps...which basically means you will probably die. There are two conversations that I just refuse to have with anyone right now. One is regarding how easy it is to be on disability and how there are a bunch of fakers out there (because it is such a luxurious life!) And the other is anyone who argues against universal, single payer health care. Unless you fight for your life DAILY with insurance bureaucrats whose system have caused you great physical and emotional pain and have regularly taken life saving health care away from you and made you fight for it for months and years on end...then seriously, you better shut the fuck up. You have absolutely no idea what you are talking about. And doctors who opt out of Medicare and Medicaid? Doctors who fight for their own profits and not systems change? Evil greedy bastards. I'm not saying you don't have issues in our system, you do. Like, I think that if the government isn't going to compensate you well for Medicare/aid patients then they should help you out with your student debt and your malpractice insurance. I think we need the system to recruit doctors (and help them succeed) who care about patients and care about justice in health care instead of getting these (many of them privileged) doctors that are in it for status or money. But, fight for us, why don't you. In fighting for us, I think you will also be fighting for yourselves. I certainly have sympathy for the shit practices have to go through in regards to insurance reimbursement and liability issues.
4. The number one thing that has compromised D's health, and many other disabled people's is a complete lack of comprehensive care. For people who have complex health conditions that require many specialties, the care is dangerously fragmented. The left hand doesn't know (or seem to care) what the right hand is doing. There are stupid, arbitrary rules about which nursing agency can do what and take orders from which doctor at what hospital. D will sometimes have three different nurses come in on one day. The wound care nurse, the infusion nurse, and the general nurse. This would be okay if they had special skills in these areas, but they sometimes don't.  We had an infusion nurse with years of experience on the wound vac (believe me, it is a skill), and then a wound nurse who was just starting to be trained on the wound vac. Sometimes, these nurses can't confer with each other because they work for different agencies. There is also a lot of passing the buck to someone else. There is also a terrible amount of just taking care of the acute problem that is right in front of you and completely disregarding the big or long-term picture. Doctors don't want to communicate with each other. They don't want to admit they don't know something and get a consult. They don't want to work as a team because it is more time-consuming. It is very 'treat 'em and street 'em' out there, and that is why there is a huge amount of bounce backs. This is D's fifth time in the hospital for this pump issue. And they are really no where close to a long-term comprehensive solution. Nor are they really interested in finding one. They will get D's vitals stable for the time being, and then they don't care anymore. D and I have hypothetically talked several times about moving to Denver so that we could be close to Craig Hospital, which uses a team approach to patient care. Everyone, doctors, nurses, therapists, patient, caregivers, family members and friends, sit down at least once a week and decide on a plan of care. I know that is a bit harder to do logistically when you are in different buildings in different hospitals, but guess what? There is the phone, fax, conference calling, emailing with cc to everyone. There could be a system where one doctor is in charge and everything goes through her so she can see the big picture and make the final decisions that make the most overall sense. (The Jon-Luc Picard strategy.) TALK TO EACH OTHER, DAMN IT! How hard can it be?
5. Also, actually know about rehab and other services for the disabled. And if you don't, get a good social worker who does and use her. Many times, doctors are the "gatekeepers" into the disability world. Obviously they have to look through the lens of the medical model, but they should at least be aware of the social model. And that there is life after disability. Many times, it is the doctor who says, "This is it. There is nothing more I can do. You now have this permanent disability. Have a nice life" as he slams the door. I'm sure it is hard to call it quits after trying to cure or prevent disease and disability, but after you close the medical door, open the disability community door. It is the only way people with disabilities get their lives back. You as medical people can be very powerful in this regard. You could offer hope instead of just failure. It is a total shame, but I know a ton of blind people who went blind due to diabetes or a head injury or what not. They went through a few surgeries and nothing worked. Then, there was that one appointment with the doctor. They all remember it. It was the one where the doctor said, "This is it. You are disabled." And then they left with nothing. NOTHING. And these blind people would go home and quit their job, sell their house, move back in with their parents or something, and sit. Just sit and do nothing. Sometimes for YEARS. My friend Susan sat for two years before she knew that there was free rehabilitation available. My friend MRY sat for three years before he knew. I knew someone else who sat for 6, before anyone ever offered help. These people can't read the phone book, use the computer, read, nothing. They have no access to information. Their parents are sometimes elderly and unknowing, computer illiterate. How hard would it be to give someone the proper referrals to rehabilitation and advocacy groups? A fucking brochure is what we are  talking about. I think this has gotten better with the internet and people's friends looking up things and trying to help. But you know how most people get services? Social security comes calling, demanding that they prove they can't work and in order to prove that sometimes you are required to go through rehabilitation first. That's all well and good for social security to refer you, but social security can take YEARS to do this. Friends and family should not get a newly disabled person plopped on their doorstep with nothing and have to go searching on their own. Doctors have a responsibility to have knowledge of all the services and options available and a patient should not be dismissed from care until a rehab plan has been locked in. And also, doctors can help by advocating and medicalizing (with insurance companies) rehabilitative care. There are now years long waiting lists in most states for developmental disability services and blind services. There is literally next to nothing available for newly deaf adults. For people with SCI and the like, they are usually rehabbed in hospitals. But there are a variety of options here and patients should be given all the information to make good decisions. There is a world of difference between the rehab results from an SCI patient who goes to Craig Hospital vs. one who goes to, say, Little Town Hospital Rehab Where We Mostly Give Old People A Walker With Tennis Balls on its Feet. Also, SCI rehab hospital stays have gotten ridiculously short. Stays used to average 6 to 9 months. Now SCI patients are getting kicked out in two or three. You can't get rehabbed and recovered in two or three months. And in the long run, it is going to cost the health care system. Poorly rehabbed people have more health problems, require more attendant care, and are hospitalized at greater rates than those that got good, long rehab stays.
6. Finally, it is OK for doctors to not be familiar with something about us as disabled people...on the first visit. I do not expect all of my doctors to know about Stickler's/Alport's syndrome. D does not expect all doctors to instantly know about baclofen withdrawal or autonomic dysreflexia. But after taking a Hx on the first visit....GO LEARN ABOUT IT. Get into your little medical textbooks, go online and read medical journals, talk to your colleagues, whatever it takes. Instead of grandstanding and acting like you know all about it, or being embarrassed that you don't, just go research it already. And at least know something about it in the next visit or two. Also, if you don't know a patient well and are unfamiliar with his case, actually listen to what he is telling you! So if D comes into the ER and says, you can't put me on a regular gurney, I need some kind of air flow mattress, or only Demerol will be effective in regards to my autonomic disreflexia right now, or please use this vein, not that vein because you will have to poke me 80 times and you will end up using this vein anyway...actually listen. Because people with chronic illnesses actually know some stuff. And they are not all trying to get a Demerol hit or make your lives difficult. They are actually trying to make your lives easier. Don't disregard what they say as if it isn't important or you know better...because you probably don't. When a new patient with complex issues comes in, guess who is the expert and knows more about their care? THEY DO! So listen, please. And lose the condescending attitude.

This probably isn't what you had in mind, Bliss, and I'm sorry for being so angry. None of this is directed at you, personally, of course. But I am ANGRY. My kids, again today, had to say goodbye to their father and I can't tell them when they will see him again. And I get scares sometimes that the answer will be never. And I know that D is a complicated case, but some of these things are just so utterly dumb that I can't hardly stand being in my skin when I think about them. A person like D has enough unpredictability from his body itself. It would be nice if he also didn't have to deal with the antagonizing unpredictability of ignorant and incompetent staff, corrupt and exploitive insurance companies, and a system that basically would rather see him dead.

Still in BlogFog

I am so totally going to write the post about disability competencies in the medical field that has been requested of me more than once. In fact, I've been writing it in my head all week. But I'm really pissed about some of the stuff going on with D's medical people, so it just boils over in my brain into a big, pissy diatribe that borders on insane hatred of MDs. As soon as I can back it up into a coherent post, I'm going to write it.

So, to at least write something, I'll give you some lazy bullet point updates.

1. D. D is doing pretty well. He is on another WoundVac now that is sucking the life out of the original incision site that the infected pump was removed from. He is off all IV antibiotics. He spent over $1000 of his own money to get a circulating air mattress that helps prevent pressure sores that insurance won't cover. It looks like nothing is going to happen until the incision wound heals, which means he will probably not get the medtronic infusion pump put back in for several more months. He is going to a new pain management doctor at the beginning of April, and if I go much further into this update I will spiral off into the above mentioned diatribe.
2. With the exception of Thurs. mornings when my dad took the kids to the gym for me for a class, I have now had the kids by myself without help for nearly 8 weeks straight. My dad is back in Kansas now and the class is over, so that is gone. D has only been able to come over one or two times since January and has trouble being left with the kids for more than a few minutes because of his spasms. It has been a long haul.
3. When D first went in to the hospital, I had a lot of church people volunteer to come help out with the kids. I'm sure they were well intentioned, but one by one they seemed to drop out of site. It may be my fault for not following through very well, but I just have a real difficult time managing people and hunting them down and badgering them for something they've volunteered to do. I would do one phone call or email reply, and then if things fell through, I was not about to go begging and badgering. So, I've basically been all about the kids lately.
4. I'm tired.
5. My friend, Niklas, is coming to visit in May. He's actually bought tickets and everything, so that makes it real. I promise I will not just hand him my children as soon as he walks in the door and then go lock myself in my room and sleep for a week. I promise. Really. I won't do that. No, I won't.
   
6. I totally missed a covenant group meeting tonight at my church. The kids and I slept right through it. I missed last month, too because I was attendant caring for D that night. Bad, bad, me. The people are nice and I enjoy going to this thing every month...for the first two hours. The first two hours are visiting while the kids are in the next room with a sitter. The last hour is a potluck. It is the potluck that kills me. First, I have to figure out what to make, based on some "theme" which usually includes finding recipes and buying groceries I might not normally buy. In large enough quantities that would feed everybody, even though mostly people don't eat much at these things. I just don't have the money to waste like that. And something that the kids (mine and others) will eat and something that doesn't have milk and gluten for this or that person. Then I have to spend time on Saturday making it. Then I have to arrange the kids schedules so they are adequately rested and fed and clean for this thing. Because for some reason we do the potluck at the end rather than the beginning when our food would be warm and the kids would be hungry. (At least my kids.) So if I go by myself, I have to find a way to pack and transport the food for the 3/4ths mile walk. Then at the actual potluck, I am running around feeding four people while everyone else just has one person or maybe one person and their kid. Then everyone is done eating by the time I have sat down to eat. Then I can't hear anything anyway. Then I have to help clean up and monitor overtired, running around kids. Then I have to get us all home and to bed and up for church the next day. I know I'm being a big whiny whiner that whines about this, but I love the group...and that last hour almost makes it so not even worth the trouble. I am thinking that I either need to quit or make some kind of deal with them that I will bring snacks every time but I am bowing out early before the potluck and just stay for the first two hours. Cuz, man I friggin' hate that potluck with the heat of a thousand suns. Okay, that may be an exaggeration, but sometimes little things tip the scales of what you are able to electively handle.
   
7. I've made a decision about preschool. I'm going with the homeschool coop that is cheaper, yet farther away. I missed the deadline for the other preschool (purposefully) and I have not yet gotten in to the homeschool one, so I take a risk. But I have been told that I do have a good chance of getting in there. I have visited there twice now. One on my own and once with the kids. Everyone there was EXTREMELY nice and accommodating. Almost too nice. I started looking for signs that I was entering a cult! But I think it is ok. This was my first interaction with real live homeschoolers (vs. the ones that live in my computer). I found this crowd to be secular and lacking any sort of radical zealotry; homeschool or otherwise.  They are willing to take both my kids for one open spot. They don't double the volunteer work because I have two kids. At first I thought that it wasn't "meaty" enough and it was too laid back and it wouldn't challenge my kids. There was a lot of just free play and very little structure. But then I took the kids, and it was really right where they needed to be. Three hours was really plenty for them. Naim can sort of manage his overstim problem by just escaping to a quiet corner when he needs to and Aaron doesn't have too many people telling him too much of what to do. He needs a lot of freedom and hates to follow the crowd and procedure. YET, there is a loose procedure for Naim, who likes it. The trip wasn't too bad. It is a 20 minute ride and a mile walk. There is a city park and a library nearby. I really felt, on a gut level, that this was where we belonged. It felt good to be there and it felt like a place I wanted to keep going back to. The kids had a lot of fun and still ask me when they can go back. I'm sorry to say that it will probably be about five more months.
8. My goal is to get to bed by midnight every night, and it is now 12:01. So, good night!
   

Boomerang: Or My Somewhat Morbid Valentine's Day

The kids made Valentine's Day cards for dad and grampa F. And Aaron found a picture a week ago of a heart-shaped box of candy and has been asking for one since then. So I got a big one for them to give to D and they each got a very small one for themselves.

The plan was to take the stuff over to D's after their nap and just stay for about a half hour or so. But, of course, that was interrupted by "The Very Big Deal." D has a new infection, C. Diff. (I can't remember what the whole name is). It is one of those probiotics that your body naturally has and is good for you until you are on a bunch of antibiotics and the level gets out of control because it is not sustained by the other natural bacteria. The hospital wanted him to come in, but it was not an emergency situation, so we waited a couple of hours. We took the Valentine's stuff over there and that was fun. The kids liked giving him his gifts. And eating the candy. Then I stayed to help him get ready to go to the hospital.

We have been kicking ourselves for months about not getting our paperwork in order such as wills and medical power of attorneys and stuff. Now all of the sudden, D was in a mad rush to do it. We signed stock paperwork to make me his health care representative. And then we talked about death and what he wants done and when he would want me to pull the plug, so to speak. These are all things we have talked about before, so it was merely a revisit and no big decisions needed to be made. The main thing D is afraid of is that his disability will prejudice the medical staff and they will kill him off before his time. This is a very, VERY common and serious problem for people with disabilities. We didn't want to put down in writing any kind of thing about feeding tubes, life support, 'heroic' measures, etc. because all of that is very commonly a way for people to very easily devalue a person with a disability and is so contingent on context. I have a good feel for knowing that I'll be able to separate the disability prejudice from sound medical decisions that values D's life. I also have a somewhat good feel for when medical intervention is really keeping someone alive rather than simply prolonging their inevitable death. What I don't have such a good feel for (or maybe I am just uncomfortable making the call) is when D wants to give up. When the pain is too much, when he has had enough. I guess, if the situation arises like that, I'll just have to trust myself and our relationship that I will know what to do when the time comes.

So papers were signed, and then he wanted to take video and pretty much do a video medical power of attorney thing and a will. He is concerned about family backlash. That they will not be happy or think that I somehow made him give me this "power." Truth be told, I don't really want it or like having it, yet I don't know that I trust it to anyone else, either. I know him. I know my own abilities and instincts. I know (and D knows as he mentioned today) I have the ability to be a bitch on wheels to get what I want when the situation calls for it. I don't know these things about anyone else. So, there you go. (I joked with D that we should do a video with me holding a gun to his head while he willed me ALL HIS MONEY (btw, there is none), but he didn't go for that.) So basically, I just set him up with the video camera and left the room so I wouldn't even be in the vicinity for whatever it was that he said.

So anyway, that was no fun.

Finally, he called the ambulance. It was just a granny-run, which in other states does not require that you call 911. You can just call the ambulance directly and get nonemergency ambulance transport. But here, they don't let you do that, so they make us call 911, which is stupid. And then the fire truck shows up and the ambulance and sometimes even the police. (When I called the ambulance for Aaron's seizure, I had two ambulances, a firetruck, and a squad car show up. There were 10 men in my house to pick up one little boy.) Anyway, today there was only 4 or 5, I think.

Some people ask me about having the boys there during this, and for one thing, it isn't like I really have anywhere else to put them. For another, I think it is good for them to get familiar and comfortable with the drill. Especially on these nonemergency type things, it is a good opportunity for them. There will be a time when we do call 911 for an emergency and it will be very harried and scary. And the more they are used to this as being natural thing that we do, the less traumatic that will be for them. They like to go out and look at the firetruck and ambulance. They got sticker badges and they think that is cool. They like the bed on wheels. They are not uncomfortable around the EMTs. The more they experience it as normal, the less traumatic it is going to be for them.

When I took them out to look at the firetruck while the EMTs were working on D, there were about 4 kids all in a hubbub about the emergency vehicles. They were about 8 or 10 or so. And they were actually scared. They lived in the building and were worried about a fire. They were on their bikes and worried if they should go up and get their moms. I told them that there was no fire and that it was all OK. And that my "husband" was just very ill and he needed to go to the hospital. They asked if they could wait until he came out, and I said ok...as long as they stayed out of the way. I knew that they would see D being conscious so thought that would make them feel better. This is another dumb reason for the 911 thing for a granny-run. Having the firetruck come out just confuses and worries people. Anyway, I don't want my kids to be scared like that, so hopefully this exposure will help with that. But after they wheeled D onto the bus and we had waved goodbye, one of the girls said to me that she was sorry he was sick and that she hoped he got better. I don't know why but this made me tear up. She was very sweet.

The kids know that they will see D tomorrow at the hospital. They like going and so they are okay with it. Aaron gave D a matchbox truck to take with him.

Tomorrow morning we are going to the ophthalmologist for the kids. I'm not looking forward to it. They have to be periodically screened because of me, but Naim has lately been saying "I can't see" all the time so I'm wondering if he needs glasses. It could also be, though, that he is just copying me. They will hold something up to show me and I will say, "I can't see it. Bring it over here." But he also hasn't really known his colors and seemed confused whenever we talked about color. Aaron has known colors for well over a year now. Naim knows numbers and letters pretty well, so I don't know if the color thing is an acuity thing or colorblindness or what. Although just this week he has seemed a little better about colors, so who knows?

The eye doctor is in the vicinity of the hospital, so unless the kids are completely spent and beyond the edge of sanity, we will probably trek up to the hospital and visit D. Long day. Lots of eye-drops and hills. Can't wait.

The Sweetest Day

D is home from the hospital, now. And he's pissed. He has done his own research to find out what happened, and it turned out that there is such a thing as intrathecal baclofen withdrawal, which can be very serious. It causes wild blood pressure fluctuations (check), fever (check), severe spasticity that can result in autonomic dysreflexia (check) and altered mental state (check, check and triple check.) All of these symptoms can then mask an infection (check.) When he went to the hospital this time, he had a new infection, pseudomonis (sp?).

It turns out, according to this article in a medical journal dating June of 2005, the new best practice is to not remove an infusion pump when their is infection present unless everything else has been tried first. The danger of any infection around the pump is that since the catheter connects the pump directly to the cerebral spinal fluid, bacteria could bypass the blood/brain barrier and infect the brain. How are they treating this now? By putting the appropriate prophylactic antibiotic in the pump itself (along with the usual baclofen) until the infection clears. This has worked in the vast majority of patients studied. It saves the patient from two surgeries and two or more months of pain, and forgoes the danger of the intrathecal baclofen withdrawal.

AND THEN, he gets sent home with an IV + an oral antibiotic and plain ole' Rite Aid pharmacy refuses to fill the oral antibiotic because of a serious drug reaction that occurs with one of the antispasticity drugs he is now taking. Nice catch, pharmacist. Bad slip prescribing doc. So now he is on two IV antibiotics. So he has two bags hanging off of the PICC. And this is something we have learned. If you ever have to get a PICC line, get the double port one. For some reason, they don't like to do this, they like to do a single port one. But every time D has had a PICC and we've argued for the double port, it has ended up that he's needed it. Besides then you can do blood draws and stuff with it. Anyway, I think one of the issues is that his pain management doc, the one who controls the pump, went to India for a month and left a NP in charge. I'm sure that the NP is great in many things, but this was a complicated situation and an actual real live doctor (or two) should have been brought in. D says he is done with that pain management clinic.

And as long as we are talking about medical things that piss us off...here is another thing. I have been very, very good about not writing about the in-laws, haven't I? But this little tidbit pissed both D and I off right good. It is not really a secret that I think that one of D's relatives is, well, a dumbass. Not that he is intellectually challenged, I think he is very smart. But he doesn't make decisions with his brain, he is driven mostly by his tiny, widdle, ego. So he has been sick with an infection. And he finally went to the doctor and got antibiotics. And for whatever reason, he got really sick on these antibiotics. Okay. So a normal person might call the doctor and get his scrip changed or perhaps get an antinasuea scrip or whatever. Not him. He is going to tough it out. So he stops taking his antibiotics after only a few days.

Ok, besides the fact that this is just stupid for his own health, he has an immune compromised brother with MRSA. I have an MRSA colonization, and I would not be surprised if his mother and father do too. His mother and father who are in their 70s with health problems. If you are not familiar with MRSA, it is a superbug. One that is very hard to fight because it has grown resistant to all but a few antibiotics. How did this happen? There are many reasons. Antibiotics in the animal meat we eat is a big one. But another big factor is caused by people who have abused their antibiotic use by stopping them too early. If you stop too early, you kill only the weak bacteria and the stronger ones go on to breed even stronger ones. They become so strong that they become immune to the effects of antibiotics. This is at least sorta, kinda commonly known? Right? I know it is known in our family.

So, he is too much of a tough guy to go see the doctor (or just make a phone call and a trip to the pharmacist) to straighten this out, so he is going to endanger the lives of his brother, his mother and everyone else who is immunosuppressed? I know the correlation isn't as direct as if he sneezes on his mother then she will get infested with a superbug. But it is just so goddamnned disrespectful to people who are fighting for their health and life in the sea of infections we all live with now. Why not just go blow cigarette smoke on someone with lung cancer, why don't you? (And to end this on a snotty little corollary note, I hope his significant other was able to hold him down and shove the needed antibiotics down his throat, as apparently I was supposed to hold D down and make him show me his foot wound way back. You know, because we women "caregivers" supposedly are to be held totally responsible for the medical decisions of our perfectly competent male partners.)

</snot>

Anyway, D got better and better each day in the hospital as far as coherence and withitness. He is far from being home free on this thing but that first week home was really goddawful and it is much better now. Doing antibiotics, laying low and trying to control pain and spasms as much as possible, and waiting it out until the next step can be taken. Hopefully that will be putting the pump back in. But to think there was a possibility that we could have avoided most or all of this is really mind numbing. This has turned out to be "A REALLY BIG DEAL." Every time a major infection like this happens, I know that this may be it. This may be the time he doesn't recover and it gets him. These superbugs are getting harder and harder to fight; they are running out of antibiotics to try. When he went back in last weekend, I was really thinking...what if this is the time? What if I have had the last coherent conversation with him? What if they run out of options? And every time he beats it, I'm happy, of course, but I know it is bringing us one step closer to the time when it really is the one where he can't beat it and there are no antibiotics left to try.

This knowledge I carry with me always. The fact that any one little thing could change everything in an instant and their is no guarantee that there will be another day with someone you love. On Saturday, my dad wanted to take me and the kids to the coast because it was a nice day. But the kids hadn't seen their dad in about 2 1/2 weeks and woke up in the morning asking to go over there. It was one of those things where I would have liked to take the kids to the coast. My dad does not often ask to do stuff with us. He is always busy doing his own thing. But I thought, what if something happens? What if I tell my kids we can see dad tomorrow and then tomorrow never comes? I could not live with myself to have to tell them again that they couldn't see him and this time it is for good. This is how I have to think and balance things out. Of course my dad could get hit by a bus and fall down dead and I would feel bad that we didn't go to the coast with him, but the kids weren't asking to do that. They were asking to go to daddy's house. They had been asking for days. And I kept saying soon, when daddy gets back from the hospital. (We did not go visit him this time because we were all sick ourselves.) So I kept putting them off and putting them off. But I am not ready to put them off forever. Maybe that day will come. But not today. Not today.

So we went over to his house and he had not gotten out of bed since he'd been back, nor had he been outside (except for transport to and from the hospital) in over three weeks. So my goal was to get him up into his chair and take a walk with the kids outside. It took quite a while to get him up. Lots of having to stop for spasms and dizziness and lots of tubes to rearrange. But we did it, finally.

And it was a nice day for us in February. And sometimes it is easy to feel bad for all the stuff we go through together, but that walk was the sweetest day. It was like triumph and winning and gratitude and peacefulness and joy all mixed together. The kids were happy, we stopped to see a cat, we stopped at the gazebo, we stopped at the playground. The four of us. D holding Naim's hand in front of Aaron holding my hand on the sidewalk. Would I take this for granted if we could do it everyday with no IVs to worry about and no hospitalizations to work around? Probably. There may not be much good about this health crap, but at least it teaches you to know, and know deeply, a sweet day when you get one.

Glad to have Dad back. (All those packs on his lap? That's all the IV bags and infusion pumps in there.)

Aaron still refuses to be photographed. He feels no obligation toward his public.

D took this picture. Caught Aaron finally.

Sundry

D and the Troublesome Pump

Remember that super easy, no big deal surgery D had last November? The one that was just routine? To replace his Medtronic Baclofen Infusion Pump? Well, as I have come to know, nothing with D is ever easy.

Around late December, he developed this crazy abdominal infection and the incision around the pump opened a bit and goo drained out. So, there was weeks of antibiotic injections and trips to the doctor to check it out. The doctors told us that in 95% of cases involving pump site infection, they have to remove the pump and start over again...after waiting for two months with no pump before replacing it.  Two months of choosing between crazy spasms or being drugged beyond recognition to prevent crazy spasms were not options we liked, so we were hoping that D would be in the 5% who could clear the infection quickly.

And one Sunday, a couple of weeks ago, I administered the last antibiotic shot. The wound had closed, D felt fine, it looked like we made it. Two weeks of good health followed and I thought we would be on our way for a bit.

Oh, No. That just doesn't happen for D.

Today I got "One of Those Calls." I had actually just put a pork tenderloin in the crock pot with BBQ sauce for pulled pork sandwiches, something that I'm not crazy about eating, the kids don't like, but D has been wanting for a while. I found pork tenderloin on sale so I finally acquiesced.  Right when I'm done with that, he calls me to tell me that he bent over or something and his incision ripped open and his pump pretty much fell out of his body. Like he could see the internal stitches used to secure the pump in place and everything.

Lovely.

So, to the hospital he did go and now he is scheduled for surgery tomorrow to take out the pump. They are going to leave the wound open and pack it, PICC line him with some Vanco, and put him on oral baclofen for the next two months.

Things I say to my SO that I bet you don't say to yours:

"Well, too bad, cuz I'm making BBQ pork sandwiches and now you're not going to get any since you went and let spare parts fall out of your body."

He is in a relatively good mood about it. Me? Not so much. I'm like thinking of how this will impact all of our next two to three months because of course it is going to be a big wonking thing that will mean a ton of things get put on hold or not done.

It will be okay, though. It is one of those things where it is as big of deal as you let yourself make it be. D and I usually try to keep things on the lower end of the Big Deal Spectrum. I doubt I'll get up there tomorrow for the surgery, but I'll probably take the kids up on Sunday. They like to go to the "hopisal." But they always ask me why they can't ride in the ambulance. (Done that. Don't plan on doing it again if we can avoid it, kids.)

Reason to Homeschool #635

Because I've had such trouble sleeping the last few months and have been really sick of the 24 hour kid duty, I have questioned my homeschooling resolve. At times it seemed like Kindergarten couldn't get here fast enough. I would daydream about shoving them out the door and having all those glorious, glorious hours to myself!!! My decision to homeschool has never been set in some kind of principled stone. It has always been what will be best for the kids, and me, and all of us as a family unit. If I were to be this tired and burnt out of kids by the time kindy came around, then it would be to nobodies advantage for me to homeschool them. I thought, maybe I will  put them in PS, and only if there are big problems will I take them out to homeschool them. Like, say, if the teachers start telling me they are ADHD and need to be put on twenty psychotropic drugs, then I will take them out.

And I still have not totally counted PS out. Again, it will be a decision I don't make until that time, and then it will be a decision that is re-evaluated from year-to-year. My district has rezoned AGAIN, and now the kids won't be going to the far away school that is impossible for me to get to, nor the two really close schools that I could easily walk to--but a school that is about two and 1/2 miles away. I can get to it with a small bit of public transportation effort. So, that is where that stands. They still might change it in the next two years.

But something happened the other day that reminded me of one of the many reasons I want to homeschool them. In the grand scheme of things, this is not that big of deal, but I just thought it was funny.

One of the things I don't like about PS and education in general right now is the narrowing of the definition of "normal" or "typical" or whatever you want to call it. It has been done entirely out of necessity. It is entirely a response to school overcrowding and high teacher:student ratios. The more kids in a class with a teacher, the more they need to fit a mold of typical. The teacher doesn't have time to individualize and adjust for differences. Thus, the only way to handle kids who don't fit into a very narrow range of normal is to push them off into special ed with labels like learning disabled, ADHD, behavior disorder, etc.

So kids now have 'sensory integration disorders' and 'auditory processing disorders' and they are 'bipolar' and whatnot. Now, as I've said before, I'm not saying that YOUR kid, the one with the auditory processing disorder or whatever? I'm not saying your kid really doesn't have auditory processing issues. What I am saying is, but is it really a disorder? Or is it one of the myriad of characteristics kids have in the normal spectrum of characteristics kids have? Ah! That word "spectrum." Used with autism and aspergers mostly, kids fall onto the Spectrum and are sometimes called spectrum-y.

OK. We ALL fall somewhere on the spectrum. But some experts have decided where the line is on the spectrum that qualifies you as normal vs. spectrum-y. The range of normal on the spectrum has been getting narrower and narrower. Now again, don't email me and tell me that your kid is on the spectrum and the wonderful special ed services he is getting have changed his life. If something is working for your kid, great. But does it have to be special ed? And does he have to be labeled with a disability to get those services? Or could we just incorporate these services into education for any and all kids who need them.

In my work as a sped teacher, I've always been amazed and amused by these hyper experts who will diagnose any kid with anything just so they can say they diagnosed them with something. Just so they can be an expert. I can't tell you how many times my mouth has dropped when a kid came in to be assessed with maybe a problem reading or whatever. And left with thirteen arbitrary diagnoses. Usually enough to put them on drugs or get them out of the regular classroom (aka overworked teacher's hair) long enough to give said teacher some relief. I mean, I've seen kids who probably need just some reading tutoring after school or a good, consistent behavior plan be diagnosed with so much crap that has been so obviously pulled out of the expert's ass. (Or pulled off some stupid assessment tool. Which is just something pulled out of the assessment tool creators ass. So its just once removed, but the same thing.)

So a strong motivator for me with homeschooling is that I don't want to deal with people with expertitis. (Not that homeschooling completely removes that threat, but it puts you more in control). I don't want my kids to be "disordered" into conforming to the narrow definition of typical. Or disordered out into the silliness that is most special ed programs. Now, I of all people have no problem with the label of 'disabled.' It is something I wear with pride. But disabled to me is about the community, not about the disorder. My kids are already indoctrinated into the community. If a legitimate issue comes along health wise that we have to deal with, then we will deal with it. But I'm not a fan of dumping my kid into the assembly line PS system where you either swim like the other kids or sink into the disorder/disability labeling soup that has been concocted by  the establishment.

Now, with that big build-up, this story is going to seem really silly, that this bothered me so much. But I just found it funny, that on the kids very first day of their very first class they have EVER taken (without me with them, at least), I got called back to the principal's office and got hit with a small dose of expertitis.

My plan in getting Aaron to stop destroying my house is to tire him out with something physical every morning. A plan that works really well when I can pull it off. I have signed the kids up for a couple of classes. One is this class at the gym that I go to called "Sporties for Shorties" where they take 3-5 year-olds to the gymnasium and just do little stuff like play basketball with the short baskets, or kick around a soccer ball or whatever. My father and I have been quite amused watching this class in the past. The kids are pretty funny in it. It is semi-structured. They have a circle time warm up period. They line up and run across the gym and back, they have little practice drills, and have some free time and then a cool down circle period.

The kids have previously taken a class in the gym called "little feet friday" where 2-5 year olds have a free for all in the gym. Aaron is fine, here. But it is too loud and unstructured for Naim. (It is VERY loud.) There also always seems to be very aggressive big kids in it, like 6-8 year olds who sneak in. So it is a rough room. The sporties class is quieter and more structured, and so I though Naim might do better with it. In little feet, he stands in the corner sucking his finger. Any improvement on that and I would be happy. Aaron is fine anywhere.

So, when I signed them up, I told the instructors that a) this would be their very first structured class ever; and b) they are behind on gross motor skills and will not be able to do everything the other kids do. Fine, they say. No problem. I told them that I just want them to have fun, run off some energy, improve their gross motor, and get used to following along in a class. Great, they say.

So they go to the class for the first day, and me, my dad, and my dad's cardiac nurse (he is in a cardiac rehab program at the gym) were all watching from a place where the kids couldn't see us. And it was hilarious. Aaron was happily running around. He did need to be herded a couple of times and he could not do the jumping jacks they did in the circle, but he did stand in the circle and watch with interest. He played with the balls, put them in the basket several times. Ran from line to line like the other kids with a bit of direction. Seemed perfectly happy with himself.

Naim came to the class about ten minutes late (a bathroom issue, I'm told). He came in when the class was in a bit of chaos. But he didn't have a meltdown. He mostly hung around either Aaron or one of the adults, and didn't do much. But I did see him put the ball into a basket once or twice and I did see him happily run around with someone holding his hand. He seemed reserved, cautious, but happy. They did as well as I could hope for and I was pleased all around. My dad thought they did really well. And even the nurse, who just met the kids that day, said they seemed to really enjoy it.

So I was surprised when I came to pick them up that I was called to go talk to one of the instructors. (There are three adults in this class, and about ten kids.) She told me, with the authority of someone with expertitis, that my kids "JUST WEREN'T INTERESTED" in the class. It was the way she said it, like the thing had been a total failure and they had no place there and I would be crazy to have them continue. And then she gave examples about how they didn't participate in circle time. (I had to remind her that they CAN'T DO jumping jacks, nor had they probably ever seen jumping jacks before or knew that terminology. That should not indicate non-interest.Perhaps they could work with them on that?) She went on and on about how they just didn't seem like they liked the class. And she seemed a bit taken aback when I said I (and my sighted reinforcements--always gotta have those to make my opinions count) had watched the whole class and had been pleased and thought they did quite well. I reminded her that they don't have experience in a structured class and can only improve there. I also reminded her that they can't jump, dribble a ball, or run with as much coordination as the other kids, that they JUST turned three and there is a big difference between three and five. And that they need time to get the system down.

I gave her one out. I said, I know they required a little extra help today. Is it a problem for you to have to take so much time with them? At this point, this is the only excuse I would have taken, even if I thought it was lame because the class had almost a 1:3 ratio. One teacher could have easily handled my kids plus one other, and if you are smart, what you do there is split my kids up and group them with a four or five year old. Not hard.

She said, no. Not at all. She seemed to be a bit insulted that I would suggest that they couldn't handle it. There was absolutely no problem at all with that. She just wanted to know what my 'expectations' were. Because she just worried that I might be let down.

WTF? Expectations? Lady, they are three. If they run around smiling and don't have a meltdown, I'm happy. Do I think they are going to learn how to play basketball? Um, no. Do I care? Not at all. I think what it came down to is that my kids are a bit of extra work, and she was too lazy to do it. To which I say, a) hey, I gave you and out there and you didn't take it; and b) if you are going to open the class to three year olds then you have to be willing to deal with three year old skills and three year old behavior.

What it comes down to, if she had been open and nice about her concerns, I probably wouldn't have cared. I probably might have thought that she was nice to be so concerned about them. But she pulled expertitis attitude with me. And I have enough experience as a teacher with expertitis that I'm not really intimidated by that. (It is sad how many times I've seen unsuspecting parents fold to the 'experts' demands.) Bottom line? The kids are still in the class. And hopefully, I was nice enough that she isn't going to go on an expertitis vendetta on them and start looking for failure in them. (A horrible side-effect of expertitis disease.) I think we ended up having a good conversation after a rocky start.

On Monday, they go to a tumbling class. And in this class I have arranged for them to be with the 18mo. to 2 yr. olds. So they will (for once) be the bigger and more advanced kids. If they do well, or if it seems too easy, I can move them up to the three to five class--no problem. I love nice, understanding, flexible teachers. Why is that so hard?

But, too also? The Aaron destruction machine has been on leave since we started the morning classes and activities, so yea! And we are doing Funshine Express "school" in the afternoon again (after I kind of blew it there for a few weeks) and they really enjoy "school time" and ask for it. So, I'm back on the homeschooling bandwagon again.

For now.

Morning People? They are Liars, All of Them.

I won't bore you with the latest updates on my crazy sleep situation except to say this:

All my life I have been told by my family how wonderful and useful and practical it is to be a morning person. My family extols the virtues of the Morning Person (cue angel music) as if by being a Morning Person (angel) you will have a better career, more money, more time in the day. You will be more efficient. You will be more ambitious. You will be smarter and have better sex. Or something. All my life I have watched my sister and dad jump out of bed each morning and make fun of me because I would sleep as long as humanly possible in the morning. And the ENTIRE reason I was not a morning person, according to them, was because I stayed up too late at night. But even when I did go to bed early and wake up early, which I could do if I had to, I still felt tired for a couple of hours in the morning. And this, according to my family, was such a slothy, shameful way to live.

I ended up taking Ambien for only four days. And then something weird happened. I became a morning person. Now, I'm not just saying that I switched my hours so that I went to bed earlier and woke up earlier, I'm saying that I became a true morning person. One who jumps out of bed with tons of energy at six am and who goes to bed within a half hour after the kids went and hit the bed snoring.

This is probably the first time in my life I have felt this morning person phenomenon. And guess what? It sucks. I don't know how people live this way. I don't get ANYTHING DONE.

It is nice to get up well before the kids and eat my breakfast in peace. But that's the only advantage I am seeing. What happens is, my morning time is limited by things out of my control. Once the kids wake up, my time is over. I have to stop whatever it is that I'm doing and deal with them. At night, I can finish up what I need to do and decide for myself when "my time" is over. The other problem is, I have chronic back pain issues, probably from being a blind chick that drags tons of stuff on my person while carrying a cane or dog and walking miles in lieu of throwing all my crap in my car and walking a few feet like normal people. That, and lifting and throwing around disabled people all my life, not to mention the thirty pound kids I've got right now. To go from six am to, say, 2:30 when the kids (sometimes) take a nap is living hell. I am in pain by 9 am. By one, I'm pushing myself to hold back tears and any chance I can, falling to the ground to rest my back. But I have a job right now (actually two jobs) where I am up and on my feet doing physical labor all day long. The rest periods just work better if I sleep late and stay up late.

But the main thing I hate about being a morning person is that, although I have lots of energy in the morning, I burn out by 5 or 6 pm. And I still have three to four hours of work to get through by that point. And it KILLS. I have never experienced burning out in the evening before the day is through. I'm cranky at the kids, I take shortcuts (ah, forget about brushing your teeth, kids. Just go to bed. And baths? Oh, forget it.) I can't get things done that need to be done at the end of the day after the kids go to bed. All I want to do is get myself to bed. And that push to get through things at night is a billion times worse than the push to wake up and get going in the morning.

In the morning, if you are a grumpy, groggy person like me, at least you know it will get better. You know that you can just start slow and work your way up and in an hour or so, you'll be fine. There is something to look forward to. Saving all the tired at night and having to push those last three or four hours? That is a living hell. There is no solution to it but to get the shit done as sloppily as you can and forget the rest. So many little things go by the wayside because I just don't have the night time energy to do them.

I always thought my family was such a bore because they came home from work, ate dinner and then plopped on the couch in front of the TV for 3 hours and did nothing every single night until bed time, promptly at ten o'clock. They were probably just exhausted. One thing I always remember about my mom is how tired she seemed all the time, especially after work. I don't want my kids to remember me as tired and crabby every night.

I'm sure this little morning person phase won't last. But it sure has been an eye-opener to see how the other half must live. The grass is not greener, and I want my quiet, get-things-done, chill-out nights back.

The Post About the Menz

aka The post that will probably get me into a lot of trouble.

My sister and I were talking the other day about how she still gets (and I used to get) all of the questions about WHY doesn't she have children? I mean, its not like its the law that every woman should want to have children, right?

But this made me think of a question I still get, especially since having children and the lead up to children. "Why aren't you married?" Or, "When are you going to get married?" Or "Why don't you want to get married?" Just today I had lunch with J, who is in his late 40s and in luuuuv and engaged to get married, despite the Pacific Ocean that separates him and his fiance. I am very happy for him and I really enjoyed spending time with him today. But then the subject of my state of marriage came up and I did one of my tactless blurt outs:

"Men are 90% useless when it comes to relationships."

Yeah. I don't have issues.

But I kinda think I really don't. This is an academic issue for me and I'd like to qualify this statement. First of all, to prevent any confusion, D and I really do have a BIG insurance issue standing in our way. So marriage to him is beside the point. However, and I love D and he is family and I've said this before, I don't know that I'd marry him anyway because I just simply don't want to be married. Our relationship works on many levels, much better than some married couples I'd say. But one of the reasons it works is because we have so many mitigating issues surrounding disability and how we have to live to meet both our needs that it overrides some other big issues. Just for a really simplistic example: D and I don't fight about who does the dishes, who diapers the kids, who makes dinner and who vacuums because he can't do it anyway. It's irrelevant.

I'd like to think that if he could, he would be completely enlightened and he would see us as 100% equal partners and do all this stuff without question. But chances are good that he wouldn't, at least initially. The way he was raised, using his brothers as examples (which is not totally fair, but that's the little I have to go by) they are entrenched in patriarchal thinking. Male privilege. To D's credit, I think if anything, disability has enlightened him to what it feels like to be treated as subhuman, and has opened his mind to learning about the issues women face. So, it is a bit of a catch-22. If he wasn't disabled, he might be a bit of a chauvinist and not treat the partnership equally. But since he is disabled, he understands these issues that are important to me, but many times can't demonstrate it in concrete ways. But one of the things I most love about D is that he doesn't base his ego on stupid testosterone induced male pride and get all hung up about it.

But back to the usefulness of men. What I meant to say, and not that this is much better, but anyway...90% of men are useless when it comes to relationships with women. And of the 90%, there is certainly a continuum of usefulness. Many men of my generation might be in the top 20% of usefulness, while men of the older generation are perhaps lower on the scale, just based on different generational views and upbringing regarding women. So, what I am actually saying, is of the bell curve of men's usefullness in a relationship, my criteria to even bother with trying is only the top 10%. And by top 10%, I don't mean the top ten in traditional ways, like best looks, most money, most prestigious career, whatever. I mean in their usefulness as an equal partner, respectful, loving husband, kind and generous, conscientious, responsible, mature, honest, courageous, etc. Those kind of things.

Okay. I am FAAAAAR from perfect, but I always said that any guy I would marry had to have his shit together at least as much as I do in these areas. And it always seems to me that that only leaves the top 10%. Arrogant, much? I know, I know. But what I'm getting at here is that I don't consider myself to be in the top 10% of women in these areas. I'm probably just average. What I'm getting at is the discrepency between men and women that I don't want to put up with.

I know. I'm digging myself into a deep pit.

But come, come join me. Let me throw you a shovel. I will also qualify this to say that I have many male friends who I quite enjoy and some who I love dearly. I see their humanity and all their good points and things they have to offer. Besides D, of course, I love his dad, despite our differences. I love my first boyfriend, Kory and always will. I love Nik. I love J. But to enter into a lifelong commitment and equal partnership? There are very few guys out there who could pull off the kind of partnership I want. A patriarchy free one, as much as possible at least. Very few men are up to snuff to  make it worth my time and effort. I know that sounds just like the "I don't think all blacks are bad, I have a friend who is black." line. I do understand that it is an unfair statement to generalize all men in this way. And I don't feel like I am doing that so much as observing a social trend that affects both men and women.

In fact, J must be my special special. I must love J so much because I held my tongue and even coughed up a "well, there might be a grain of truth" to his example of that asshat quack John Gray and his stupid Men are from Mars, Women are from Venus drivel. Did you know he isn't even really a doctor? His stuff is misogynistic crap that basically gives men a "biological" excuse to be pigs. Here, for your entertainment, some great John Gray quotes:

"It's such a big deal, 'Well, I didn't get my 20 minutes of clitoral stimulation, so how can you think about penetrating me?' This is all feminist stuff that came in, and women are brainwashed with that. They should have it. I'm not against that. Women should have great sex. It will make better marriages for men."

"Does one spouse owe the other sex? The man goes out and risks his life for this woman. The man works hard for his family. What does she do for h