Twinkle Little Star

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.

Eeeexxxxhhhhaaaaaaaaaaaaaaaaaaaaaaaaaaallle

My dad left for Kansas on the 8th, and he took his little dog, too.

Despite the fact that now I have to clean my own kitchen--which really sucks--and run my own errands--which only slightly sucks because he didn't really do a whole lot of that--I am always amazed at how much better things go when he is not here. It takes about a week for things to click again, and then it is fairly smooth sailing.

It isn't so much that he DOES anything so terribly wrong, he does a lot of little things that just don't jive with cooperating as a family. We are so disconnected that once we both rented the exact same Netflix movie within days of each other and both watched them separately. That kind of amused me. And I could do the separate lives thing, like I've done with roommates in the past, where you just sort of coexist. But at least for the most part roommates try to be considerate and know that they are coming into the arrangement from equal positions. My father thinks his needs trump everyone else's. As I've said before, I can take it--I just ignore it--but it becomes really hard on D and the kids.

I could bullet point a bunch of things that are little that he does. No one thing is that big of deal, but together they make my life much, much more complicated that necessary. Like:

• He leaves very dangerous things around the house, garage and yard. He once left a sharp pair of hedge clippers in the babies' stroller. I found them again out in our patio on a chair. He left electric hedge clippers (the kind that look like a chainsaw) on a low shelf in the garage. He leaves knives and the cheese shredder and things down low. He leaves his heart medication where the kids can get it. I am constantly having to on the spot baby proof and I get nervous leaving the kids in another room unless I've inspected it.
• He leaves the garage in a complete mess. electrical cords, tools, whatever, just thrown any which way. I've tried to keep some things together like the Christmas stuff or my gardening tools. Christmas stuff gets dissipated everywhere. Gardening tools, gone.
• Along those lines, people say to me that it must make me feel better to have my dad in the house so I'm not alone with small children. Well, it might...except he often leaves the doors unlocked all night long. I have to always double check it before I go to bed.
• He crabs at me at least monthly that I need to pick up the dog poop and make the dog poop across the street in regards to a future, potential guide dog that I don't even own yet. But! The kids and I were out planting some annuals the other day (with kitchen spoons since my gardening stuff is gone) and there was Abbey poop EVERY THREE TO FIVE FEET. It was EVERYWHERE. The kids kept saying "mama! dog poopies!" and spooning them up for me to see. Lovely.
• Every time he leaves I go around and match the lids to the pots and the storage containers with their lids and have all the baking stuff together and the silverware together, etc. And we go along like that, happily. Naim (and Aaron on occasion) help me empty out the dishwasher and put most of the stuff away that goes on the bottom shelves and drawers. They manage to put it all in the right place, but my dad messes up everything. And not always the same way, either. So one day I can find the measuring cups over in this drawer and the next day I can find them in another, neither of which are where I always put them. I spend A LOT of time simply finding things. And I'm blind, so I have very little patience for that shit.
• He complains if I give the kids a small cup of his orange juice or if we eat anything he has bought at the grocery store. However, he eats my peanut butter, my crackers, any and all condiments, any food that I make for dinner if he is around, potato chips, any kind of snacky food, etc. Now, I don't really care because I think feuding over food is asinine, but since he can and does go to the store ANY TIME HE WANTS, and I have to plan ahead and order online, it gets really irritating that I can't use his things when he has eating all of mine.
• Then he says just purely asshole-ish things like, "maybe you could get a little refrigerator to keep in the garage for some of your stuff so I can fit my food in the fridge better." Um, excuuuuse me? First of all, I am the one who is feeding at least three, sometimes four and sometimes five people three meals a day. Second, if you would share food like a normal human being, then we wouldn't have to have doubles of everything and we would have more space in the fridge.
• Oh, and he gets mad at me for cooking. For cooking for my children and I and D. He likes the nights when I make sandwiches or just feed the kids canned ravioli. If I cook anything at all, he flips out. And first of all, I am no gourmet cook, so it isn't like I'm doing complicated recipes with 500 ingredients and 50 pots and pans. One night it was because I used a frying pan and a small sauce pan. Another because I used a 9X13 baking dish. I keep telling him that I cannot feed his grandkids chefboyardee every night and still fulfill his wish that they become big, strapping tall men. (Nor can I afford it when someone is eating my food without contributing. My grocery bill goes up around $100/mo. when he is here.)  Secondly, when we were growing up, My mom (sometimes my dad) usually cooked and my sister and I alternately cleaned the kitchen each night. Methinks he has selective memory of all the crap my sister and I cleaned up after their cooking. They (gasp!) actually used pots and pans too!
• He bitches about the potty training status of my boys (which I haven't had the inclination to blog about...because uuuuggggh, it isn't even something I'm comfortable working that much on when my dad is in the house.) yet he brings the little dog out here who he has had for ten years. And that dog is not anywhere close to being housebroken. Daily, DAILY accidents. And if I find them, or if the kids have found them by walking in dog shit, he doesn't even offer to come clean it up. He will clean them if he finds it first, but it all involves a string of irrational yelling and cussing and threatening to kill the dog and wishing upon her a speedy death. And my kids actually hear this stuff. And sometimes repeat it. And let me just say, the f word coming out of your three year old's mouth is not near as hard to explain to strangers as is your three year old saying "Abbey! I wish you would die," to the little girl in tumbling class who happens to also be named Abbey.
• He does that archaic thing that men do sometimes where he basically says to the boys "ah, you aren't hurt/there's nothing wrong with you/boys don't cry." Or he says things like "they need to learn to be competitive! You need to get them into sports or something where they can compete!" Yeah, dad. Competition is all around us. I'm more worried that they learn to cooperate and share and be generous, compassionate individuals thankyouverymuch. Not only is that unhealthy, but it also gives boys a bad view of women, as what they are often derogatorily compared to is some form of the feminine if they act with any emotion (or express interest in anything feminine or pink.) It also breeds that asshole type of guy who feels the need to prove that he is a "real man" every five seconds by putting women and gays down. This drives D so nuts that at some point I think he might call CFS on my father...or pack me up and move us all into his one and a half bedroom apartment.
• He insults D's role as a father often by saying things to the effect that they need a male role model around to teach them to play ball or act more manly. He suggested that I get the boys involved in "Big Brothers." Well, great program. But first of all, I know there is a long waiting list for boys who actually don't have fathers to get a big brother, and second, if he wants a man to play ball with the boys, he can get his damned ass off the couch and play ball with them.
• He watches TV ALL. THE. TIME. He doesn't even bother to turn it off when he leaves. And it is loud. (and if I think it is loud, then it is LOUD.) He has an obvious hearing loss, probably due to working around heavy machinery his whole life. But he won't do anything about it. I at least have the courtesy to put on my hearing aids when I 'm going to talk to him.
• You can't even just have an hour to yourself sometimes. Because he will just all the sudden have some sort of need or crisis that you have to help him fix NOW!!! Or he'll just want to tell you something arbitrary. He barged into my room one morning at 7am, waking me up in my non-hearing aided state to tell me that the TV wasn't working or something.
• He is completely oblivious to the disrespect he has for me, D and the kids. I have too much on my plate with not enough support to deal with that shit.

The things is, the boys really love him and he can be good with them. And we could have a cool little intergenerational family thing going. But the energy it takes from me to monitor everything and enforce any sort of rules with him is exhausting. You practically have to strap him into a chair forcibly to have a conversation with him. And even then, he is looking the other way and not even paying attention.  I almost feel like I need mediation to deal with this.

Something happened the other night that sort of woke me up. I made an honest and unintentional mistake where I caused some damage to the house. And I hate to say this but it was blindness related. If I could have seen, it wouldn't have happened, or to the extent that it did. I'm already in the process of getting it repaired and it is going to cost me a few hundred dollars to fix it. Which I would do no matter what my relationship was with my father. But the night it happened, I literally FREAKED THE FUCK OUT. The fact that if he saw it, he was going to fucking kill me and I would never hear the end of it. And the fact that I, as a newbie "homeowner" don't know anything about house things, I couldn't just call him up and say, "hey, I made a mistake, I'll pay for the damage, but I don't know who to call or what to do to fix it" really pissed me off. I have had to basically go around and interview everyone I know about it to get advice and referrals. And then, the next day, I was in the kids bedroom putting away laundry and I don't think I had my hearing aids on. Naim came around the corner suddenly and did a loud growl at me because he was pretending to be a monster or a dinosaur or something. And for a split second, I thought it was my dad and he had found the damage. And I was hit with such a panic that it practically blew me over. Over some damage to the house. This is a nonproblem, or a mere irritating annoyance. No one is dying here. Nothing is doomed forever. No civilizations are being brought down. I have to call a repair person and shell out a few hundred bucks. What is living here doing to me? It is the same panic I had growing up. The childish panic of being the loser screwup that I thought I had gotten away from.

The kids are getting older and more impressionable. My tolerance for what he did around them as unaware babies  has dwindled  significantly.  Here is the thing  he is going to have to understand: NOTHING. Not his coffee cups or his poopy dog or his TV or his dancing or his damned house are more important to me than the well-being of my boys. NOTHING. The level of disrespect he has shown for me, D and the boys and the level of disrespect he models in general is unacceptable as the boys grow older and start to understand what is going on. Between now and his next visit in summer, I'm going to come up with a concrete plan and rules that need to be followed in the house...and also hopefully just foster a more cooperative, loving family and household in general. (I may have to seek mediation or someone to help me out with this, I'm too "blinded" by the close ties to see it objectively for what it is sometimes.) And if he doesn't improve significantly, I am going to have to leave this arrangement. I have strong, strong emotional ties to this house. To this neighborhood. And to the idea that my mother wished for when she died that my father and sister and I would stay close and care about each other. But both D and I feel that being good parents, having a positive family life, not having to run up and down the street to see each other and care for each other, having our kids and our kids parents be respected, is worth more BY FAR than a nice house with cheap rent.

Okay, I think I needed to write all that out, but that was totally not what this post was supposed to be about. I was going to say how nice it is to be healthy again. I have had what was probably bronchitis for the last two months. I was coughing nonstop. The kind of coughing that makes your abdominals ache, and keeps you up all night and makes you feel like gagging and just is exhausting. The kind of coughing where people start to look at you funny and edge away. I didn't go to church for two months simply because I knew I would cough all the way through the service. It was often hard to have conversations with people.

I tried humidifiers and cough drops and tea and cloroseptic and gargling with hydrogen peroxide and zinc tablets and sitting in the steam room at the gym and cough suppressants of every kind and everything. Nothing seemed to work for more that a few hours. Finally, I tried live probiotics, the kind you have to refrigerate. I am not 100% sure that this is what did it, but within a week after starting them, my cough improved about 50%. Now, two weeks out, I think I'm about 85% there. I have maybe one or two coughing attacks a day rather than 10 an hour. It is SOOOO NIIIICE to not have to cough all the time. It is the kind of sick where you are not so sick that you can just lay down and quit life for two months or check yourself into the hospital, but you are sick enough that it makes every day about sludging through and just trying to get the basic things done. I was so tired all day I can't even describe. Every minute I thought about sleeping and the smallest tasks seemed huge. The kids watched WAAAY to much TV.

So, I'm back to doing Weight Watchers and planning meals and cooking! (Without someone monitoring my dish usage!) Tonight the kids and I made a really good homemade pizza with pineapple and canadian bacon and lots of stealth veggies for the kids to eat and only 5 WW point for me. Fresh food again!  I'm sleeping 8 hours a night. I've started exercising again. D and I have set up a schedule where I go over there to work fairly early so I can get out of there early and have the whole rest of the day to do stuff with the kids or exercises or do "school" or whatever needs to be done...and I'm actually getting stuff done. I can tell that I still have a ways to go and still need to take it slowly and get lots of rest (I did 20 minutes on an exercises bike my first day back to working out and had to quit early because my chest was tightening up something awful and I was coughing up an embarrassing amount of yuck that I could no longer hide.) But I'm just trying to do 20 minutes a day now and work my way back and make sure I get to bed early. I have limited myself (and made myself) do an hour of housework a day after the kids go to bed. Whatever I can get done in an hour is great, then I just forget about the rest. In the long run, I get more done this way because I am doing it every day instead of being so overwhelmed by the sheer volume of work. (Very flylady of me, huh?)

We are STILL in the throws of potty training and Aaron and I are struggling through some tough behavior issues. But I feel like we are pushing through them as best we can. I've become a much more patient and loving mom lately. I've been able to give Aaron some extra one on one attention and a bit of babying that he seems to really need right now. (I'm sure I'll write more about this later.) D is status quo at the moment. So it isn't as if there aren't problems to deal with, but it is so much easier to deal with problems when you have energy and are not coughing up a lung. And you are not forced to worry about hedge clippers and dirty frying pans.

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.

Hospitals, Kiddie PT, Hospital, Mars

Before I say this thing I was thinking today and you all think I'm nuts, let me just say that of course, it sucks to be sick. It sucks to have pain. It sucks to have your life stalled by hospitalization and illness.

But D and I and the kids are comfortable around hospitals. We are comfortable around healthcare people. More than that...we are extremely grateful for many of the health care professionals in our lives. Sometimes, we even enjoy them and getting to know them and their company. We have an affection for them and the whole health care system.

Not that there aren't certainly terrible problems with it, and not that we don't on occasion run into an asshole doctor or nurse. I'm not talking on a systemic level that we have an affection for health care, a comfort in it. On a systemic level, it is quite fucked up. But on a personal, day-to-day level, there is comfort there.

I was just thinking about this today, because I'm getting tired of hearing from a group of women about how they would NEVER have their baby in a hospital and hospitals are for sick people, not pregnant women and how it is so unnatural and sterile and awful and how could anyone willingly have their baby there?

Okay, first of all, I have no problem with the decision to give birth at home. If that is where you feel comfortable, great. I assume you have weighed the pros and cons and evaluated risk and made an intelligent decision based on your needs. Women have been treated crappily in the whole OB field. And women should get to make whatever educated decision they want to make about their own pregnancy and birth. As should all people who utilize health care. So I'm not saying there is anything wrong with having your baby at home.

But, I wish some of these home birth advocates could understand that this is an individual decision and a home birth is not right or even plausible for everyone. It is luck and (in our society) a little bit of privilege that allows some women to be able to do this. In a perfect world, it would be nice if everyone could give birth either in their homes or in lovely, tranquil birthing centers with angelic midwives...and also have a Level 1 NICU and trauma team available if need be. In a perfect world, we should not have to choose between the two.

But to say that hospitals are for sick people and not for pregnant women is to not only ignore people like me, who were in the middle of pre-eclampsic, retina-detached, double-breach twin, premature labor--hey, me and my guys could be dead without a medicalized birth. But also it is to ignore the fact that before giving birth in the hospital was common-place--a whole lotta mothers and babies DIED in childbirth. A whole lot more than do now. Get your ultrasounds and you amnio and whatnot, but then say that the medical field will only harm you in birth is a little hypocritical. (Like who knows if amnios are traumatic for the foetus?)

And I understand that some people just aren't comfortable in the hospital setting and will actually do better during labor if they are comfortable at home. And then a home birth is how it should be for them.  But this is not the case for everyone, even if there are no significant high risks for the birth. But for others like myself (even if I was carrying a low risk singleton) the hospital is where I am most comfortable. And my feeling is, if mom is happy, baby will be, too.

D and I depend on health care workers a great deal. We know that the vast majority of them do this work because they care. When my mother was ill, my family kept commenting about how nice the healthcare workers are like it was something above and beyond and unusual. I thought that was a sad statement by them. This is what it is to work in a caring/helping profession. This acceptance of bodily fluids and grossness and dysfunction is part of that caring. Sure their are crabby nurses (and doctors are a different beast, they are often driven more by ego than caring--but still there has to be at some level, a need to help people) but in general these are a good lot of people to be around and trust your life with.

Its not the fact that people decide to home birth that bothers me. Again, I think that's fine. But even then, you know you will have the hospital as back-up (and hopefully you make it on time). But don't use health services for all your prenatal and as your emergency back-up and then bitch and moan because god forbid anyone should dare have their baby in the hospital. The second your baby is wheezing with a 105 fever, you are going to be right there. So, choose whatever kind of birth you want, but quit putting down those of us who choose the hospital and the hospital (that you depend on) itself.

</rant>

***************

In other news, Aaron and Naim went to their first tumbling class on Monday. It is really more like kiddie PT to me. Aaron was kind of a little pisser during part of it. He flung himself down on the mat and refused to participate in several things. But he got better at the end. Naim was absolutely amazing. He followed directions, he participated in everything. He smiled and laughed and had fun. He proclaimed "IIIII did it!" after every little accomplishment. I think he might be in love with the instructor.

I think the main element that helped Naim was that it was quiet. I mean, quiet besides the teacher and the six kids. The room was huge. Half of it was empty and the other half had balance beams and mats and gym stuff in it. But it was quiet and focused and structured. He found his element. I about saw confidence growing out his ears right before my eyes.

Then, the instructor even made me fall in love with her because she came up and talked to me afterwords and could already distinguish which one was Naim and which was Aaron and treated them as two separate children. This is my pet peeve with others now. They are old enough and different enough and different LOOKING enough that there is no reason to be lumping them together as "the twins" anymore. I mean, its okay if people get their names confused at first or lump them together when it is appropriate to. (i.e. Are you bringing the twins with you?) But the more I thought about the lady from Sporties for Shorties and how she insisted that "they just weren't interested," the more I thought that she must have meant Naim. There is no way you could have said that Aaron wasn't interested. Naim? okay, yeah maybe. Because he is shy and slow to warm up to things. So, that irritated me a bit because she couldn't even distinguish between the two and separate them out as individual kids. So, anyway, that was a plus for this program. She actually got that I have two separate kids, not one "twin" in two bodies.

And I had told this woman nothing about my kids beforehand (I had not signed up yet, I was there on a free pass coupon) and she was not phased by Aaron's behavior (which definitely could have been described as disinterest, although knowing Aaron, I would describe it as Taking a Stand Against Some Strange Thing Mom Forced Me Into Without My Permission So I Refuse to Admit that I Might Like It.) I was a rebel kid. I understand rebel kids. Aaron is a rebel kid. Anyway, the teacher picked up on that and was confident, as was I, that he would be fine in one or two more classes.

She also got that the kids couldn't do some of the things the other kids would do. Mainly anything involving jumping or springy legs.  She was unphased and understood that this was not an effort or interest issue, this was a developmental issue that needs work. This class is really perfect for that. The kids turned out to be between two and a half and three and a half. So in all other ways, my kids are right in there size wise and maturity wise and what not. Its just the gross motor that they are still behind on. But this is exactly what they need for that. These classes are getting a little pricey. I almost wish I could dump Sporties for Shorties and have them do this one twice a week. But I already paid for SFS. But it gets over at the beginning of March, so maybe I'll quit that then and just do this. We'll see how much they end up liking SFS.

As much as I think the kids will be happy with tumbling class, I forgot that I might not be able to live through the moms. Not that they are not nice or anything...just hard for me to relate to. First, I am shut in a small, darkened room with them as we stare at our precious, preciouses through a two way mirror. Very hard for me to communicate in there. Second, I live in a neighborhood where the main employer is a very famous high tech company that pays its empoyees really well. These women are well-dressed housewives with (mostly) daughters in ballet class here and...well, just the level of dance studio gossip that I was able to decipher? It was way more intense than I can handle. Reminds me of skating moms. I could care less about so-and-so and her daughter and what class she got to advance to. I just don't have any idea what to say to these people. They asked me which kids were mine in the class and I said,  (jokingly) "the blond over there who is waving his hands around so the teacher will help him off the tumbling mat and the one over there who has flung himself down on the mat in protest."

"Oh," they said. I couldn't think of anything to say after that.

****************

Back to the hospital...it looks like D will get out on Friday. He will be coming home with an open wound and a PICC line and IV. So I'm not sure what my responsibilities will be there yet. Probably nothing with the wound as home health will cover that. But probably some kind of stuff with the PICC. I'm hoping they put him on one of those all day infusion pumps so I would just have to go over once a day and change the vanco and flush the line. I'm hoping not for twice a day. And I'm hoping for no wound vac. That the wound will just heal on its own no problem. I loathe the wound vac.

D is a bit grumpy as his spasms are not under very good control. He says it isn't terrible, but he is getting anxious to get out of the hospital so he can control his own medicine. He thinks he can get better control on his own than the way they are doing it. He is going to need to rest and lay down a lot, so I'm losing my main kid break device. I told him to do whatever he needs to do to get better and manage this, just don't be a damned martyr about it. He tends to agree to things I ask and then blame me when he has overdone it. I keep telling him, I'm not the boss of you... you manage yourself, you set the boundaries, you let me know what you can and cannot do, BECAUSE I AM NOT OMNISCIENT. But in fairness, that means that I will be extremely limiting my asking for stuff or to go do stuff or whatever. Hopefully the next several weeks will go fast.

For some reason, we always take pictures at the hospital. I think it is because we run out of things to do and someone always has a camera. (Aaron is anti-camera right now, so there are very few pics of him.) We went up Sunday (pre-haircuts) and then today (post haircuts.) The biggest hit? The ninth story window and the itty bitty cars below. That, and pushing buttons on the 8 elevators we ride to get there.

D and Naim lounging in the hospital bed with the laptop, of course. Aaron standing on a chair looking on.

Aaron enjoying the view.

Naim hanging in the wheelchair.

Naim practicing his breathing with one of those lung exerciser things that I can't think of the name of.

Everyone reading Dora books on the bed.

****************

Bonus from Aaron:

I've been working with the kids on memorizing their whole name and address and stuff. Here is what Aaron said today:

Me: What is your name?

A: Aaron

Me: What is your whole name?

A: Aaron _________.

Me: What city and state do you live in?

A: [City, State].

Me: Do you remember what street you live on?

A: Mama? I don't want to be from [City, State].

Me: You don't? Then where are you from?

A: I be from Mars. Aaron ______ lives on [Our street, our city], MARS!

(I blame this on D. They are currently space shuttle and mars rover crazy. And they may not jump around like the other kids, but we spent 25 minutes in the apple store waiting for my dad at the genius bar and my kids were little pros on all the computers at the little kid table. Hey? Which skill will get them further in life, Grampa F.?)

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.

Another visit from my friend, the Crazy

I have been diagnosed with a lot of nutty things over the years, so before I go on about this, I will tell you that I am generally a medical mystery and take any diagnosis I get with a grain of salt. But years and years and years ago I was diagnosed with PTSD, and once I was diagnosed with depression...and then I was also diagnoses with post-partum depression in which I was on paxil for almost a year. (Post partum depression is the very definition of a neurochemical imbalance. You can almost hear the neurons misfiring in your head with that specific brand of crazy.) Since then, all has been well.

However, along with my physical health, my mental health has never been something that has just been self-evident, it has been something that I have had to consistently work on and manage. It is a little, um unpleasant to talk about, but I think more people need to talk about it. Or risk something like coping like my mother, who denied that she ever had any sort of problem ever with anything. And then vacillated between depression, cold-hearted numbness, and occasionally irrational hysterics. So, in general, I will talk about it, but I don't like to make it into a big, dramatic thingamahoo. Again, all this is with a grain of salt.

Both D and I have done the cognitive therapy counseling. And both of us have had difficulty with the fact that most counselors seem to want to jump out of a nine-story window after hearing about our lives. We have trouble finding someone who doesn't blame it all on disability, or who requires so much instruction about disability 101 that really, we should be charging them rather than vice versa. We've gotten cynical about therapy. Besides, who has the time? We are way more into drugs, these days. (Don't email me about this, I kid, okay? I kid.)

The last time I saw a counselor it was with D. A hospital counselor when he was going through the foot thing. So, thankfully, disability wasn't a overriding issue. But both of us had the "he's going to jump out the window" feeling about this guy. Yes, D is a quadriplegic whose been in the hospital for months on end because of a life threatening foot injury. Yes, we have twin babies. No, D is not the biological father. No, his family is generally not supportive of our lifestyle. My family barely tolerates mine. Oh, and my mother died a horrible death, ten months diagnosis to death of brain cancer. Oh, and I am losing my vision and hearing. Oh, and I have kidney disease. Oh, and we live in different residences. Yes, we have constant health insurance, health care woes. No, I don't own my house and could get kicked out at any time. No, I don't have a break from the kids and the care-giving. Yes, we both try to work as much as we can. It went on like that. The act of talking to him and dealing with his little tsk, tsk, tsk expressions as he jotted things down was more depressing than when we just went on our happy, merry way with our lives. I think he invoked mental illness by his mere presence.

He diagnosed--both of us--with PTSD. A chronic version that actually changes the neurochemistry of the brain and the actual size of the hippocampus. This guy was so overwhelmed by our lives that I was skeptical of anything he said. Sometimes, I think people are intimidated by how much and how well we handle things (although not perfectly, of course, we are not depressed from day to day. We aren't planning on jumping out the window any time soon.) I think diagnosing us with something helps them not feel so intimidated. We saw him because obviously there was a breakdown in the level of D's health care management and we had to make good by the hospitals rules and do everything they said, i.e. see a counselor. A breakdown which I put squarely on the shoulders of D as being 100% responsible for. That being said, I think the mistake on D's part was just that, a mistake. Probably made because he was not paying close enough attention in light of the new babies and such. A mistake that manifests itself in able-bodied people as in things like forgetting to pay the electric bill or chronically misplacing one's keys. In D, it manifested itself rather quickly into a life-threatening health issue. We have very little margin for error with some things. In any case, we didn't feel like there was some underlying cause like killing ourselves softly with depression or PTSD, we mostly felt like we just needed to get a better day-planner. So, that whole diagnosis of 'severe, chronic PTSD' was kind of shrugged off.

Interestingly, though, in most of my routine pee tests I do to monitor my kidney disease, I show extremely low levels of cortisol. Which this guy says is a tell-tale sign of PTSD and its neurochemical permanent damage. Having discussed this with Dr. Google, I find that this cortisol issue is controversial. It seems like although most people with long-term PTSD have low levels of cortisol, they can't decide of the PTSD causes the cortisol issue or if the cortisol predisposes one to the PTSD. In any case, D and I went on with our lives. (As far as I know, D does not have (or has never been tested for) abnormal cortisol levels.)

Of course, I am the one who peed on an ovulation test stick that indicated that I ovulate every single day of the year, so I always question the accuracy of anything my pee has to say about me. My pee has been known to lie. This is why it took me two weeks to find out I was pregnant. But speaking of pregnancy, one unhappy bit of research states that you can actually pass on a predisposition to PTSD to your offspring through the womb due to cortisol levels. The children of Holocaust survivors, for example, have a tendency to have low cortisol levels and PTSD at higher rates than the general population. My mother was significantly abused as a child, and so it would not surprise me if she did suffer PTSD and passed some kind of predisposition to mental illness on to us. (Oh noes! Does this explain Naim's irrational fear of toilets?!) But again, too much thought into it will make you crazy. It is all speculation.

All this is to lead up to this conclusion I've slowly been coming to. I don't feel depressed, I don't feel all that anxiety ridden. Except for the usual trials and tribulations of double toddler motherhood, I don't feel like my life is out of control. I had an incident this summer that involved a childhood friend getting in touch with me with a problem that was a bit traumatic and flashback-y, (sorry, not something I can talk about since it is more her story than mine), but that is over now and I feel like it has been appropriately handled and dealt with. I feel like I'm doing more or less what I am supposed to be doing for my overall health, eating wise, exercising, etc. Or at least I have been most of the year. The kids and the big boy beds and the tornado that is Aaron has been challenging, but really, that just can't be that big of deal. So, despite all this...

Something is wrong.

Something neurochemistry-ish. Something not related to what is going on in my life or my adaptation skills. Something not related to some kind of acute or even chronic depression. Because I don't feel depressed, honestly. But, I don't sleep. Ever. Well, I do, for 45 minute cracks at a time. And then I wake up for some unknown reason and I'm wide awake. For hours. For days. For weeks. Sure, every so often I crash for about 14 hours straight, or go over to D's and sink into the couch and crash for a few hours. I'm tired all the time. I can be exhausted and sit there wide awake. For hours on end. After a while it makes me not think straight. It makes me ramble on about nothing. It makes me lose things and have serious mom brain. It makes me a boring mom who can't get simple things done.

So, I hate medication. But I've tried everything else. (Except doing that CPAP thing, which might be an option to try, but my MD doesn't think I have sleep apnea) But I've now gone to the doctor, this time my GP, and guess what? Chronic PTSD. She thinks. Extremely low cortisol levels. Just to clarify, I'm not going around having flashbacks or nightmares, but I am constantly in a state of sorta hyper-vigilance. I'm hyper-alert all the time, even when I'm so tired it doesn't matter because I would be ineffectual anyway.

So, I'm trying Ambien for two weeks. And if that doesn't work, I guess I am going to try some type of beta blocker like propranolol, or possibly a SSRI type of drug. Also, this is putting off my goal of finding menstruation-ending birth control, but I'll get there at some point here. I just need to work with one drug at a time. I hate psychological meds. It isn't because of the stigma, I know they help a ton of people and I'm fine with that. I just don't like putting eeeevil pharmaceuticals in my system. I don't like the fact that this all feels so neurochemical, like a disease that is totally out of my control. I'd rather have to just cut out caffeine or something easy like that. But it feels like exactly that. When I wake up all night long, it feels like I'm jacked up on some kind of hyper-vigilant high. And I'm not ON anything. I actually have cut out my caffeine. Didn't do a damned bit of good.

Anyway, this is probably boring to read, but I just want to sort of document where I'm at so I can see where I end up. I have a feeling this is going to be a bit of trial and error. So, I'd like to keep track of my variables. Also, I'm interested in researching naturo/homeopathic solutions to this, so if anyone knows anything like that, I'd be interested in hearing about it. I'd rather not be supporting the eeeevil pharm companies for the rest of my life.

But, Crazy? Buddy? Welcome! Enjoy your stay here all up at Camp Lisa's Hippus-thalmus. But don't get to comfy, cuz you'll be having to leave, soon, now y'hear?  Oh, and be sure to tell your cousin, Batshit Insane, that he has quite overstayed his welcome at the Brain of Britney and he needs to move right along now and get back home where he belongs...Huckabee is missing him.