Monday, September 13, 2010
In December, we thought Julius wasn't speaking because his throat was raw from reflux and he needed more meds, and he did improve and said a few things more clearly once he got more, but then....something happened. And he got quieter and quieter, and one day, Mr.C turns to me and says, I think he's deaf. And we realized that he never turned around for noise behind him, ever. If we clapped very loudly and close, the reverberations might make him turn, but nothing else. I thought maybe it was earwax or fluid clogging up his ears, but the pediatrician kept saying it wasn't possible.
Everyone actually, just kept saying it wasn't possible. The said that earwax and fluid could never ever clog up a kids ears, that I must just be ignoring him, not speaking to him, that he must have some sort of developmental delay and I was making it worse. Daycare and speech therapy was the answer. Definitely not being near me, because after all, if he wasn't developing perfectly, it had to be his mothers fault.
The 8 minutes or so with limited oxygen? The amount of time he spent with no oxygen, completely unresponsive, no pulse, no nothing? The long family history of language, learning, and speech problems? Nope, all irrelevant, in the face of what we all know, is always to blame, bad mothers.
No one blames fathers, or doctors, or genetics, or crappy non-existent medical research, or just plain, old, bad luck. Nope, it's all of us shitty moms. Some of us even start to believe it, and think it might be true, and that maybe it's divine justice, taking revenge on us for risking pregnancy and birth another baby with our really bad medical history.
I pressed on, in the face of all that guilt and blame. I got a hearing test, and a referral to an ENT, and I went to a psychologist, and a speech therapist, and I put up with more blame and more decrees that daycare would "cure" his obvious neglect. At the first hearing test the audiologist did a basic test, and declared him fine. But I have no idea what on earth she was measuring because by the time we went to the ENT, he had a giant wax plug in one ear. So large, and so awful that my husband had to hold him completely still while surgical implements were used to pull it out.
The 2 hearing tests in a row after that were still showing loads of fluid so his hearing was muffled, likely with gluey fluid that most Docs can't see on sight, but hearing tests can detect easily. Yet for some reason, the ENT did not tell us the truth. He told us to relax, just come back in 6 months.
I learned long ago that if a Doctor tells me to relax, and I do it, I end up burying a child, or deathly ill. Never ever relax is my motto. I insisted on one more hearing test referral.
So while I suffered more insults and paid more money to speech therapists and psychologists and listened to more discussions of how daycare would cure everything, we had a flood. A giant flood. And we called in the insurance company who wasn't going to cover anything, until I called in a contractor and started pulling up the now moldy subfloors, and gee whiz. There was an open overflowing drain under the subfloor. Our drains were blocked by tree roots and all sorts of strange items, and over the last many years, the water had spread mold. Black mold. Did you know that Black mold causes sinus problems, and glue ear and tinnitus, and allergies and sometimes, excessive earwax in dehydrated kids?
So, one insurance claim later and several thousand dollars later, we have a ripped up basement, clean flowing drains, and way less mold, but until mid-october, who knows if it's all gone? We're breathing easier for now.
And the finale? On our last hearing test, Julius' ears were free of fluid and all obstructions, all earwax. His left ear passed, but his right ear failed.
My son is deaf in one ear, and has possibly had limited hearing in the other, and every single Doctor from birth onwards missed it, and never bothered to properly check.
But they never missed a chance to blame me. Proving that nothing ever changes. Nice.
I need to get into a pediatric hospital that can do more advanced testing now, and make sure that he can hear someday, and communicate someday. I don't know just how serious or mild it is. I only know that he has about 10 words, and is getting increasingly frustrated, and is very very far behind. None of the speech therapy we've paid for has worked. And because we've fallen through the cracks, and he wasn't tested properly at birth, I don't know if or when we ever will get into the kind of specialized hospital program that we need.
I need another miracle.
Sunday, August 01, 2010
Except I am terrible at making decisions, and now I don't know if it looks weird, or awesome or whatever? I have no ability to do this computer stuff beyond typing and pressing obvious things like "post", although I have picked up a few minor things over the years. So thank God someone else is doing those bits.
Anyway. What do you think? We're going to keep fiddling. Any opinions? Ideas?
The reason I needed a new look, in case you are wondering, is because I am going to BlogHer again, and I want to be one of those fancy shmancy high end bloggers with business cards that match their blogs and their twitter backgrounds.
Words are good, but looks count in blogging. I guess. Who knew? I think in 4 years I have only seen one blog so ugly I had to click away. Most were lovely, but it didn't matter to me much. I've seen lots of professional company websites that were hideously ugly and non-functional, but really, only one blog. And that person changed their blog. So there.
So my boring blog will be getting tweaked. Continously. Keep clicking back and see if anything is different.
Wednesday, July 14, 2010
Not sure anyone is here anymore, reading this, but I thought I'd start writing something once in a while, or more often. I've been reading lots of your blogs, though I find that my blogroll is pretty out of date.....and my template could use some designing or tweaking or some damn thing.
Anyway, this is that post you write when your last post was too heavy and you don't know what to write next.....so you fill in with something.
And now we carry on, pretending nothing happened in the meantime.
Wednesday, February 03, 2010
But I am scary. Not normal.
A little over a year and half ago Julius was born. And it was not a good delivery. It was horrifying and terrifying and there is not one good memory I have of it. Nothing clear anyway.
My husband broke down crying and told me something about that delivery a while ago. The docs and nurses were there checking my IV and my epidural drugs, because I was screaming and it wasn't normal contractions, but there was no blood, nothing out of the ordinary. No one knew what was happening.
He said that I was screaming and begging to die. Then my head fell back silent.
And then I did.
No heart rate, no BP, no nothing, on me, and the baby too. Zip.
I thought I passed out, but when I looked on the hospital records, turns out, I was dead.
He says people starting pumping on my chest, and I have a vague sense of noise and chaos. I also remember feeling the cold scalpel across my skin. I thought I said, "May I have some painkiller?" Then nothing but blackness. It was probably a dream. The records say I was unresponsive, so I guess that means not talking.
I felt myself being moved, shaken, talked too. I know they got me breathing and said I had a placental abruption. I lost huge amounts of blood, almost all the blood in my body. They had no clue I had abrupted until they did the crash section.
The baby was born dead. They suctioned him and gave him oxygen and he was alive. Just like that. Dead. Alive. Like throwing a switch.
The OR looked like a crime scene afterwards, the senior resident looked like he had been punched, and my OB actually cried and begged me never to get pregnant again.
The placental pathology report? I stopped the heparin at 34 weeks, and delivered at 38. In that 4 weeks, my formerly "beautiful" placenta became half dead, shrunken, calcified, covered in clots and barely attached to my uterus. The pathologist said it was likely to have abrupted at any time. Or just stopped working completely. Maybe throwing a clot and killing me and Julius.
There is no white light by the way. In case you were wondering. It's not like in the movies. Since I've been dead and all I get to say that.
He's fine now. I'm fine. We're just fine.
But I'm really not. And I have no idea where to go from here.
Not a fucking clue.
Saturday, January 16, 2010
The laser eye surgery went well, and it's great to be able to see perfectly, beautifully. If I had to do it all over again, I'd still get surgery, but I'd get a new humidifier on my furnace first; dry eyes are not good while healing. And no, I haven't replaced it yet! I hired two different contractors, both refused to replace it, one because he wanted to save my husband money and he figures my husband could do it himself, (umm, no he wanted to pay you to work asshole) and the other because "humidifiers can never break". (Apparently the laws of rust and physics and mechanics don't apply to these magic items.)
I can't make this shit up people.
There is a long litany of horrible strange bizarre things that have happened since, but I can't get to my laptop, and I can't make hyperlinks on email posts, so I can't really make this a decent post to describe them all.
A few things? Julius was extremely cranky, and not really babbling, or talking, and I was getting mildly freaked out to say the least. Well, after many months, we discovered that his zantac/ranitidine dose hadn't been adjusted in months, and he had gained weight/height.
The stomach acid was burning his throat and vocal cords, so he was coughing and congested and pulling on his ears and head and not talking because not one Doctor thought to check it, until I asked about it. Instead all I got were bullshit lectures about him not needing antibiotics (I never asked for any!!) And more bullshit suggestions about how he must have "developmental issues" and it was ok, and I should sign up for speech therapy.
Except within 48 hours of upping the zantac and adding the prevacid, he was talking. And not crying. And not congested. And the more he takes, the happier he gets. And once again, every Doctor I had seen was completely wrong. I'm getting tired of this.
emedicine.com has a great discussion of pediatric GERD, and all these symptoms and treatment issues are listed, including a discussion of the connection between asthma symptoms (for ex. chronic cough) and acid reflux. Why don't Docs ever read this stuff? It's recently updated, and written by experts. GAHHH
Whole thing has me thinking about Kaz and his untreated baby reflux and his current to this day asthma. Did leaving it untreated burn his bronchial tissue and scar it? Does microscopic aerosol stomach acid get into his lungs even now? Is that what causes his nosebleeds? Is this a factor in his stuttering issues and reluctance to go back to speech therapy?
Sigh....how dare I, a mere mother, speculate. I can just hear the pediatric ENTs and pulmonologists now......
This stuff drives me crazy, but just trying to help my own family is hard enough without trying to fix the whole world. Like the boneheads who keep repeating that doubling folic acid will cause colorectal cancer? The media portrayals make me want to shoot someone! Motherisk and the SOGC both have told Health Canada that it is critical to do if we want to lower the rate of stillbirth and birth defects and miscarriage and pediatric cancers.
It is especially critical because we know that most Canadians are deficient in Vitamin D, and you can take prenatals until your eyeballs fall out, but if your D is already low, you can't absorb folic acid. And there isn't very much D in prenatals to lift your levels.
But Health Canada has said no to doubling folic acid, because of the anti-supplementation, anti-science, anti-evidence based medicine asses.
Do you know how much folic acid fortified bread the average Canadian would have to eat to induce one cancerous tumour?
233.3 loaves of bread or 150 litres of real orange juice PER DAY for six months, every.single.day *
Plus some azoxymethane, a chemical used to cause cancer. And if you just eat the bread or OJ and stop taking the chemical? The tumour growth stops, shrinks in fact.
I don't eat that much bread. Not sure anyone could. I definitely don't eat giant spoonfuls of that chemical. (Tastes crappy in OJ I bet.)
But I have had a baby die of birth defects and I have had miscarriages and I would like to know why some idiotic unscientific crap is being presented as a reason to let my kids die.
Oh yeah, I forgot, no one in government gives a shit about actually saving babies lives; they just like pretending to save them at photo ops.
I don't have the energy to fight a government this stupid right now. Feel free to take up the cause.....Kaz has to get into another school, I'm done, totally fed up with their crap. We've applied to some, hoping at least one takes us. And Mac? Needs some more attention. Like structured rule making attention.
And Mr.Cotta? Driving me up a wall because his business stress is spilling over into our personal lives.
I have to go to bed.....more later, as long as you don't care about links and you are kind. I'm feeling pretty damn fragile right now.
*2mg/kg/day of folic acid in a 70 kg person, equals 140mg/day. 15 slices of bread per loaf of Dempsters. Tropicana OJ Unfuckingreal, eh?
Thursday, November 05, 2009
Last week, after finding out my GP didn't have any Swine Flu vaccine, I took the kids out of school and lined up for the shots. We had to go to a couple of places and luckily I discovered they were giving them out downtown at Public Health's Head Office, and I begged and pleaded my way in. I'm sure that I had it and same with Mac, but since no one would swab us, I needed insurance for Kaz and the nanny and Baby Julius. The staff were quite hostile at first, and almost had a guard throw a bunch of us out, but we all just kept smiling and begging and eventually the crowd wore them down. We got in, and filled out the insane paperwork, and each sat for the shot. Luckily I remembered the infertility video from Youtube that showed if you relaxed the muscle, an IM shot was painless. Either let your arm go totally limp, or stand pigeoned toed if you have to get it in the gluteous maximus. (Heehee, that means bum!)
I'm quite amazed at the controversy over the shot. I mean, I don't love every vaccine out there, frankly some are overpriced schlock. But for any serious illness? Oy...every ICU in town is overflowing. Maybe it's because most people haven't seen the kinds of tragedy I have in life, but everytime I see someone writing cavalierly about all the deaths from this, it drives me crazy.
Like it can't happen to them, only to "other people" like me.
I'm the boogeyman once again. And on both sides! I'm the one with the dead kids so I'm the scary talisman to those afraid of the swine flu. And I'm the one with the kids with ADD/ADHD/LD, and Kaz and I have reactions to vaccines, so I'm the scary talisman to the people afraid of the vaccine. So can we talk about proportions and odds?
Swine flu does cause miscarriage and stillbirth and neonatal death due to prematurity, no question, but lots of other things do too. I would know. Trust me on this.
92% of unvaccinated pregnant women will not get so sick on H1N1 that they will be in hospital or on a vent or die. But 8% will. Where will you be? Well, 90% of my blog readers may be fine, but 10% may not. *
Which one are you? Fucked if I know....it's airborne...you breathe air? I do.
Vaccines do cause a few minor side effects like sore arms in some people. But not the majority of people. And they sure as hell don't cause ADD or LD. Those have some pretty strong genetic ties. Again, I would know. Trust me on this. But you and your kids are not going to have the rare odd neurological reactions that I have had for lots of vaccines. You won't have febrile seizures and motor tics for days and you won't feel like a truck hit you. (I felt that way after the meningitis vaccine for example, but I willingly did it, because meningitis is way worse. So my hand shook like a mofo while I drank my coffee for a while. Meh, it is what it is.) I am the one in a million medical oddity. You are the 999,999 out of a million. It's ok, I've accepted that fact. You can too.
If you don't accept that, and instead project all of your inner terror on me, it diminishes the very real suffering I did go through as I lost my babies. It also diminishes everything I have done to survive and thrive.
And that is not ok.
So do you think you could all stop the transference?
(Exceptions being anyone with their own shit....)
At some point we have to live and go on and try to enjoy life. I got my shot and feel fine. (Yes, I know....felt like I should report my incredibly strange for me non-reaction to Health Canada as well.) And I am going to keep trying to change and transform and enjoy my life even if something bad happens in the future. I have to. I can't just sit around waiting for the wheel of doom to run me over. It's gonna have to chase me if it wants me.
Anyway, I've been mulling things and I decided to go ahead with something I really wasn't sure about. LASER eye surgery! So today I will lie down on a reclining chair and willing let a strange man point a LASER at me and
The contacts were getting hard to wear and I was constantly battling pinkeye. Really not ideal. At some point soon, I was no longer going to be able to wear them. Which meant verybadthings.
So at 11 am I'll be getting done. And for 2-3 days later I can barely even look at a computer screen. Something about glare? It will kill me! I'm going to ask Mr.Cotta to read me comments and posts and tweets and online articles so I don't lose my mind.
How in the fuck am I going to live for 72 whole hours without the internet? This could be--an adventure. I guess we'll have to see!
*Numbers approximate for sake of conversation
Tuesday, October 06, 2009
You might think that's great, and I AM very relieved but right now I have to say that I feel like there is a giant axe poised to drop on my head, and ruin everything if I make one wrong step. If I say anything, do anything, I lose my last chance at a successful life.
So how do I deal with a Doctor who I can never really trust? Dunno but willing to accept all and any assvice here.
Wednesday, September 16, 2009
In the meantime, I've been trying to get my kids settled into school. Buying clothes and books and supplies and figuring out what each kid needs for forms and medication refills and labelling each and every scrap of everything and God knows what else. It's a hell of a production line, and really not my skill set. If I hadn't been doing this for years--I'd be utterly confused. As it is, this year, with my nanny it was markedly easier because after I bought the labels, she could iron them on, and if I got bogged down or discouraged by it all, she just kept going and asked me what else needed to happen.
And having someone who can do the boring parts, or just encourage me when I encounter a bump in the road? Makes a big difference.
It's the reason I hire my professional organizer to come in at least once a year, to sort out the piles of paper into nice neat files and help me throw away the junk and sort the toys into bins and figure out what has to go to storage and what has to stay here to be used next. I try to do it on my own--but I get lost. It's the ADHD or ADD or whatever the new name is. The medication fixes a lot, but not everything. Btw, yes, I think I may have convinced my doc to keep renewing my meds, but I still don't have a definitive answer. I have an interim prescription and she now has the reports from the shrink and the cardiologist so I'm hoping. In the meantime, we cross our fingers and pray.
And that's what the revelation part of this post is about. It's about all the people in the world who are in denial about the severity of ADHD. It's about all the doubters and the whiners and the skeptics who don't want to believe the science. They remain convinced that it can be caused by the moral failings of mothers, like the chemicals we evil moms use or the cars we drive or the food we serve or the negative thoughts we secretly harbour that make our kids sick. You know, like autism and cancer and paralysis and blindness and deafness and diabetes and freckles and every other damn disease cause by shitty mothering.
After all, it always the mother's fault, right? Right?
When I first entered the blogosphere I never mentioned that I had ADD. A friend of mine, an employment lawyer, had made it clear that in the real world, I would be instantly fired by anyone who found out, and that I would never be hired again, and so I knew how dangerous it was to self-disclose. In the Liberal Party, like all political parties, I'd be a pariah. (Half the party has ADD, and pretends they aren't self-medicating with double espressos at Starbucks. What? you thought those nasty exchanges in the House of Commons happened by mere chance? HA) And the many vicious nasty comments made to me, by Doctors, friends and relatives who found out? Oy...I stopped telling anyone. But blogging means sometimes commenting at odd hours. Long after my meds had worn off. And sometimes my comments were ouch...so I knew I had to give y'all a heads up.
And I mostly didn't blog about it. I don't even have a label of my sidebar. Can you say---SHAME? It wasn't a big deal though until I had to go off of it, or change meds or talk about the kids assessments and their medications. But it still bugged me to see ridiculous posts or news stories that were based on zero research and bad science. And all of it based on the idea that people would do anything, anything to avoid having that label on their kids and that medication given to them.
Then shortly before BlogHer '09, I found a referral on my statcounter for one particular mean-type website, and someone in the comments said I was a crazy drug user and had my kids drugged up. And then another person emailed me directly and called me a baby killer. And I froze and turned into a tiny little shrivelled up gutless wonder.
The only reason I even went to BlogHer was because Cecily said she would talk to me and we could hang out together. I worked on the assumption that not one other soul would even look at me, and in fact, that all of the attendees would call me a drug addict and a baby killer to my face out loud. And then laugh. I actually rehearsed in the mirror ahead of time what I would do when someone did say that to me. So I wouldn't cry or faint or vomit.
But no one said that! Everyone was really really nice. Not one person was even snarky.
The best part? When a couple of people came up to me and asked me about ADD and wanted to talk about their own diagnosis and their kids, and what I thought, and if they should get assessed, so they could get help. And all the evil troll words started to melt away, and the weight lifted and I realized that there is a point to me talking about my issues if it helps others.
You see, the Establishment in our society doesn't want anyone correctly diagnosed or treated for any mental illness. After all, if the current underclass was able to live up to their potential, what would happen? If all the brainpower and motivation in the world was harnessed and being used productively, I think our economy would soar. But then---the current members of the old boys club might not be on top. They and their progeny, just might have to work for a living. So it's better to blame Moms and tell everyone to pull themselves up by their bootstraps and work on their stiff upper lips. The media does a great job of spreading this meme.
So about yesterday. My husband's cousin stops by in the morning. She and I have been discussing our kids and their educations for years and her oldest son is gifted (an absolutely brilliant writer) and has some Asperger's/Autism features, but not quite all of them. He has huge trouble with math and can't plan his assignments and is very sensitive to stimuli. But not enough to precisely fit any criteria. It's kind of the maddening part of the assessment process. Often the psychometrist can't quite pin down a label, and god knows the Ministry of Education wets itself with it's desire for a label and demands it for each and every kid. Doctors can tell results accurately in terms of IQ score and fine motor control and attention ratings--but whether it's a central auditory processing disorder or a non-verbal learning disability or asperger's or autism or ADHD inattentive, hell, that's always a close decision. And her son has had all of those labels except ADD, until his latest assessment.
For 15 years, she has had every kind of LD help imaginable for him, from accomodations to special tutoring and public schools and private schools. Personal assistants and special day planners and organic food and all natural everything. They have literally turned their entire lives upside down trying to help their son, and his oh so similar younger siblings to succeed in school. And not one thing has ever worked. J, their oldest, is now utterly depressed and convinced that he will never make it to university or even hold down a job because he can't figure out what is going on in the world around him.
They have done everything right according to the ADD skeptics. They don't have cable TV, they barely have a TV at all. They only have a basic computer for work. They spend all of their time out in nature. She has taught him so much she practically has homeschooled him while he attended public school. He reads lots of books and there are no chemicals in their home. They don't even have any off-gassing furniture. All their food is made from local organic sources and never pre-prepared.
And none of it has ever done shit. Nothing. Not one bit of good.
And it never will.
Genetics is kind of unbeatable that way. You need actual medical care to treat a medical condition. Guilt and denial and judgement don't help, at all. I might have wanted to wish away my genetic clotting disorder, but the only way I could ever beat it and get a live baby was to take heparin. And I can wish until I am blue in the face, but my brain is my brain, and yes, maybe a little therapy can work on some aspects, but in the end, I have to accept my body and find a way to deal with it.
And so I opened up to her about my ADD and my medication and the boys and how it has transformed their lives and mine. I told her that I was extremely worried that Mac was becoming depressed last year and his self-esteem was very very low, and he was moody and sad. Then after he started medication and began to get A's and make more friends, it was much much better. He is so much happier it's hard to describe. I told her that before meds, Kaz was so distracted I was concerned that he would someday forgetfully walk into traffic and get hurt, and now, he can pay attention in class and understand everything. He still has some learning issues, but they mostly are writing and fine motor related.
And as I recounted the damages and injuries my kids and I had racked up over the years while unmedicated---the car accidents, the near drownings, the broken bones, and the lacerations, her eyes widened in horror and talk turned to her husband.
Her now retired, news reporter husband-- a wonderful writer who loves to sit and muse and make conversation, if only he could ever find his way to his destination. The artistically minded guy who dreams and writes books and literally does, wander into traffic. Really. When he isn't falling off of their roof or cutting his hands on the bandsaw or forgetting to file their taxes.
Never mind her connection to my husband's family and all of their interesting mental issues. The same issues that have allowed them to be come brilliant experts in their field and crusading entrepeneurs and owners of companies also mean that their edges are a little frayed somedays.
And all of those genetics have come crashing down and combined into our kids now. But because the Doctor who is seeing J. knows nothing about ADD, and is so focused on his sadness at failing, he thinks they should avoid ADD medications. So he continues to fail, and gets sadder about that failure every single day. The doc he is seeing thinks drugs could cause some sort of severe side effect. To him they are a "last resort." Meanwhile the kid drinks loads of coffee every day and is sinking into some sort of clinical depression.
So we gently discussed getting another opinion and talking to an ADD specialist or to our pediatrician and how the tablets only last 4 hours and the long acting 15 hours, and it's no big deal because the half-life is so quick as they leave your body. If it doesn't work, no need to take it. If there was a side effect, it would be gone rather quickly. She asked if I could talk to her oldest, convince him to try it, maybe tell him my story. Perhaps have our kids talk to each other. I told her I would be happy to.
As we talked, her face changed and I could see that she was beginning to think about all the ways in which her life might have been different if someone, somewhere hadn't been so opposed to diagnosis and medication for her husband, and her kids and maybe even herself. What if he had been diagnosed at an early age? What would his career have looked like? Would have have been so frustrated? Would he have needed antidepressants? What about her kids? Could she have had a career after they were born? Instead of spending her days and nights trying fruitlessly to solve his issues and get him therapy and school help...Would he have some friends? Would he be happier? Would they all be happier?
My heart is breaking for her. She is sitting at her house right now grieving the life her family might have had....if prejudice hadn't gotten in the way.
I wonder how many more families like this are out there, needing help, help they will never ever get.
Saturday, August 29, 2009
So again, if you are reading me on twitter, you will know that I survived, but just barely.
First I'd like to say that Versed works for a lot of people. Kaz had it for dental surgery and for a few other stitches in the ER and never had a problem. Same for Mac. And for 89% of people, supposedly, it's just fine. But for me---oh no, nothing is ever simple for me.
I really am cursed.
The GI Doctor gave me versed, after I expressly told her not too. You see, she read the records I had sent to her showing that I woke up incoherent and hysterical after I had it before and she completely misinterpreted them. She thinks I was upset about the extra morphine I was given, and how dopey it left me. I tried to explain that the issue was that I freaked out after having Versed, not morphine and the record clearly shows that the first reation I had was then, but she just kept saying that I was going to be fine and that it was the combo of morphine, and don't worry she'd take care of it.
And I'm there, naked except for some stupid gown and she hands me the form to sign and I get up on the table thinking she's going to give me something completely different we discussed--because she said, "she'd take care of it"--and she gives me Versed.
I felt everything, and was half-awake and half-out of it and crying the whole time, begging for pain relief. Begging them to stop. They rolled me over, doing some strange thing to my stomach, which in my midazolamed state felt like the were pinning me down and beating me to death. No, of course they weren't actually beating me to death. But with that drug, for me, that's what I perceived.
I finally get into the recovery room, and I am surrounded by chirpy, perky patients who all act like they had just woken up from naps and some rather unfeeling nurses telling me to sit up and have some juice and gee, that wasn't bad, and what on earth is wrong with me, I just need to snap out of it. Meanwhile, I couldn't even sit up unassissted. This one nurse was incredibly cold, almost angry, you'd think that my inability to stand or walk or get dressed was done on purpose just to screw up her life. My poor husband, as we all know, trusts all doctors completely, and was justifiably confused that things were not going perfectly as planned. The nurses kept trying to make me get out of bed and told me to go to the bathroom, but every time I sat up, I fell over. Mr.Cotta finally lowered the head of the bed and told me to sleep and tried to find the Doctor, but she was busy with her next patients. After about an hour the nurses were on me again, trying to get me to sit up and take a walk. One of them got angry and told me I needed to get dressed and why was I doing this, and I should go get my clothes out of locker, but I just kept looking at her and blankly asking where I was and crying. She wasn't happy.
God forbid a patient not do what they are told.
Finally one nurse agrees to get the Doctor, and my husband tries to help me sit up and swing my legs over the side of the bed. He and the nurse literally had to carry me to the washroom, supporting my weight on each side. My feet didn't work. I looked like a non-cooperating prisoner being dragged down a hall. I had to have my husband with me, or I would have fallen off the seat. Somehow he gets me back to the bed, and the Doctor finally shows up. She tells me there was nothing inflamed on my colon or bowel and no polyps, nothing. There was one narrowing area that she was concerned about because it might cause a blockage someday, but it might have been due to adhesions from endometriosis.
And of course, she insisted that she told me that she was using midazolam. And I insisted she didn't. It was a senseless conversation that my husband cut off because he knew she'd never admit it was a problem. I popped a propranolol, went home and slept for a day.
I don't think she intentionally meant to cause a problem. Because really I don't think she believes that midazolam cause issues. What she doesn't understand, is that when people have problems with Doctors or hospitals or drugs or procedures, they tell their friends and business associates, even if they don't have blogs, and reputations and stories spread, virally, at dinner parties and over backyard fences and in casual conversations and the people who have bad reactions--don't come back. For example, she doesn't see many bad emotional reactions because people with PTSD are unlikely to voluntarily sign up for a procedure that involves sticking a tube up their ass.
They don't go to her, or her hospital, they go to other clinics, or arrange for other drugs, or they just never get screening checks done. One bad story can ensure that hundreds of people never get a lump or a bump or a screen done. And people die.
Which is why I want to find a way to make this story end better. I'm not sure who I am going to call yet, but I will complain. I can't just let y'all never get screened because my outcome gave me the willies.
Worst problem, people assume it's because of the health care system involved. But start googling--I know lots of people who have been treated in a patronizing patriarchal demeaning manner in every country. People with insurance, people without insurance, rich, poor, connected, and nobodies. It's the worst part about the healthcare debate. People hear a bad story about Canadian health care and wrongly assume it's because the government pays. Or Canadians assume the US is some sort of nirvana of perfection for health care. Meanwhile, in the US, just search a legal database for a litany of stories of jerk doctors and cruel hospitals. Really, there is a reason the U.S. Family Centred Care Institute spends so much time and money training hospital staff on how to treat patients.
Every country will continue to have poor health care outcomes as long as they refuse to listen to patients needs. We aren't robots to be experimented on. And standardized one size fits all answers really don't work.
Anyway, I'll keep you up to speed on what I do. Right now, I have to go out to a family event. One that deserves a post unto it's own.
Tuesday, August 25, 2009
And now I may have inflammatory bowel disease, which will cost the Ministry of Health a pile of money to treat. I could refuse to let the kids go to camp I guess, but then everyone would call me a bitch, or maybe I just need to insist that the Ontario Ministry of the Environment enforce the clean water regulations they keep saying they have. I know they don't give a damn about the Ministry of Health budget, but you'd think someone would?
Praying I don't die on the table here. Cause you know that all hospital procedures always go perfectly for me, and I never have any funny reactions to anesthesia. Sigh.....
But at least it's free right!
Friday, August 14, 2009
I have been doing some commenting when possible. The only other things I have updated are Facebook rarely and twitter cause I can reach them on my blackberry, and I long ago mastered the art of balancing a cellphone while a small child screamed in agony and slapped the shit out of me at 4:00 am.
(If you aren't on twitter, you can read me and anyone there, by clicking on the sidebar link and reading them, or you can read any tweets on google reader or bloglines by clicking on the little orange button with the wavy lines that sits on a twitter profile. )
Piggy flu baby Julius looks pretty healthy during the day except for the runny pink eyes, runny nose, coughing, whining, diarrhea, cramps, intermittent fever and such. It's the all night screaming that kind does me in. But it's really not bad. Not as bad as RSV anyway.
Oh, about BlogHer? Best goddamn thing I've ever done. The keynote speeches? Rocked my world, I laughed, I cried, I saw whole worlds I never knew existed. I adore these women. I think I'd hurt anyone who tried to hurt them. Mostly because, as I told Mel (Stirrup Queens-Mel), you have all saved my life. When no one on earth cared about my pain, you were the women, and men, who stood by me and kept me going.
I can't forget that.
Which is why I have such an need to save you all right back.
And the rumoured, supposed bad behaviour of some women? I didn't see any negative things, but then again I'm used to Liberal Party conventions, and ummm, errr, let's just say that Liberals really are on a whole 'nother scale of rowdy, ok? I've seen fistfights, and near riots and pregnant women being almost crushed in crowds if it wasn't for the security details. I've seen things that would blow your mind, at Tory conventions, (literally, table full of blow) and Dipper conventions (don't ask...) too, so hey, maybe I'm jaded?
(And yes, they were male dominated conventions, and no one blinked an eye at their behaviour. Hmmmm, coincidence?)
I do think that some of the companies involved at BlogHer acted poorly. I won't get very detailed here, but I do think they misjudged their audience. They seemed rather self absorbed, and not very aware that people like me, consumers with large budgets, were there. In fact, I don't think it actually occurred to them that some of their company's stockholders might be there, watching them.
Little message I'd like to get across:
Hi Marketers, not everyone at BlogHer is poor, or lacking in connections. Some of us don't need ads or free swag, (Yes, we'll take it, for fun, but we don't need it, big difference). But we were so totally fucking unimpressed with your company's patronizing sales reps and marketers that we short sold your stock for kicks when we got home. In fact, some of us have friends, who manage mutual funds and pension funds, and we told them that you suck at customer service as well.
You know, like I would, if I was one of those not so poor not so connected types.......
I know--marketers think all mommybloggers are poor and grasping and desperate for ads and freebies. And some do need the cash and more power to them if they can feed their kids and make it. But whether we need the money or not, we all deserve respect and dignity. Cause you never know who is watching. And who has the back of her peeps.
Anyway, I just know that I have 1400 new friends, all fabulous, kind, and lovely women. We laughed and drank and learned about Google SEO and deep links and design and all sorts of cool stuff.
And then we all caught BlogHerebola from each other.....scuse me while I go take some cold meds and go to bed.
Friday, July 24, 2009
I will try to write some longer posts, but I think this will be a bits and pieces kinda weekend. I've been hanging out with Cecily and Sarah and Alexa and Mel and SweetSaltyKate (and too many to name!) and I'm hanging out with Emma right now and I've met a zillion other people, and I'm glad I came.
I have to admit, I'm in hyperoverdrive and REALLY WAY TOO INTENSE for some people right now. I'm already an intense person, but damn these convention weekends make me more so, and if I am too intense for you----TELL ME. It's good, cause like, I really don't want to be the woman walking down the runway of life with my skirt tucked in the back of my pantyhose, you know? Emotional skirts or literal skirts.
To my new readers by the way, although I introduced myself with my real name, I am extremely conscious of my anonymity and do NOT want to be identified online as anything other than Aurelia, ok? If you want to know, feel free to read archives or ask or whatever, but the short and sweet version is that my family history is bad and I don't want to be found by that family. EVER. It's safety peeps. Also, I blog about some pretty personal stuff and in real life there are some pretty damn judgey people out there when it comes to some of my blog subjects.
So here I am.
Wednesday, July 22, 2009
I have a more personal post coming, but this one is strictly techie.....
I mentioned this on a BlogHer post about wifi access in the hotel, but honestly, I'm not sure anyone read it or believed me! Please please please, if you are from Canada and taking a cellphone with you and expecting to use ANY DATA at all internationally, that's email, web, twitter, facebook mobile or chat, please call your cellphone provider and ask what to do about this.
I know for sure it is still an issue with Rogers, and they deal with almost half of cells and all iPhones in Canada, and most 3G blackberries in Canada.
"Canadians with web-enabled phones or blackberries/iphones have a slight problem. Our cell companies do not offer international data plans or unlimited data plans, because----they're idiots is the short answer, and the long answer I can explain at BlogHer if my head doesn't explode just thinking about it. We have plans for in country data, or international text and phone, but not this.
So whenever we go out of the country at all and use our phones for anything, we get slammed for charges. Rogers Wireless, my provider, charges me 25 cents per kilobyte.
Yes, you read that right. PER KILOBYTE.
I either have to turn my phone completely off, or only turn it on in areas that have Wifi. I can't plug it in like a laptop.
So can all the Canadians please, pretty please be given rooms on the wireless side of the hotel?
My wireless bill is already going to be in the hundreds. I'd like to avoid it being in the thousands.
I am trying to get the word out, but if you could pass this on to any Canadians coming, most have no idea they should call their cell companies and ask what to do. Some can turn off data, others can't."
We can't use our phones as modems or else all hell breaks loose with our bills as well.
We have very very shitty cellphone companies ok?
For me, I'm going to be keeping my phone on, but changing my settings to block all html emails and no surfing, tweeting or facebooking unless I am inside the wifi area and have a guaranteed signal.
I will also being doing a lot of texting to cell phone numbers. That I can do reasonably!
Then again, I can afford it if the bill gets a little high, I know some of you can't!
*Updated to Add*
I've called Rogers and in a very amusing turn of events, they have something called a "US data plan" that I could use---but only if I sign up for a monthly plan, and umm, I'm only going for 4 days. More bizarre---based on my current pattern of data usage, my bill for 4 days is going to be in excess of $500.00. That's if I can use wifi a lot. If I can't---it will be much higher. And I get a great deal already due to my phone being hitched on my husband's corporate account.
On the website, they give some very out to lunch examples, of say, sending and receiving 514 emails for each MB. Slight problem. They assume that each email is text only and is 1-2 KB. I never get emails that size, and many with html are much much larger, some 620kb. I get dozens of those every day. They also assume that each webpage loads as only 100 kb per click. Websites like my blog, with simple html and no graphics etc, are last time I clicked, 106 kb. BlogHer loaded on mine as over 250K, and Facebook loads as close to 1 MB. That's for every click.
So if you are looking for me, I'll be the one hugging the wifi transmitter....cause in Canada, our health care rocks, but our cellphone companies suck ass.
Sunday, July 12, 2009
Ok, I'm struggling with some things folks.
There really is a lot going on. Julius is getting molars and my BIL's divorce has become a hellacious nightmare; in fact the part where the soon-to-ex freaked out on me for helping him pack his clothes was oh so awesome. Even better has been the fact that I still haven't resolved my medication issues because my cardiologist needed to have another meeting at his other office where the files are, and blah blah blah delay delay delay. The ADHD specialist's office called and said that I cannot have an appointment because he only does initial diagnoses and expects that my GP should prescribe and update my meds. The specialist's office is also not surprised that the GP refuses to help because almost all GPs refuse to prescribe meds, due to prejudice, which is why he now runs regular CMEs to teach all about ADHD meds and the seriousness of both the condition and the treatment. It was too hard trying to teach Doctors one at a time. Even now, they are just not getting it, and seem to prefer media depictions to actual medical evidence. Best part: they will not call the GP's office to explain this, I'm supposed to tell her she is uneducated. Greeeeaaat. I won't do it.
I am making headway on house repairs, but barely, my husband seems to spend lots and lots of time getting pissed off about it all, but really, we're just in a state of suspended animation right now. Because he is too nervous to spend money in this economy, we can't renovate or even plan the renovation, because if you merely talk about something out loud, that means you have 100% committed to it, and have no choice but to spend all that money, don't you know? We can't buy a new house, or sell this one, because again, he is so utterly freaked about money. Joke is, we can afford a new place or a reno, no problem. I would just have to tranq him like a horse to make it through.
Kaz's school is still a nightmare, they refuse to return phone calls or be helpful in any manner. They will not follow through on any of their commitments to us, and have pretty much abandoned Kaz. I finally told my husband to deal with them. I can't bear arguing with people who make no frigging sense.
So I'm in limbo, trying to slog through tasks, trying to make headway, help out where I can, but still and all, in limbo.
I'll be honest, I'm not sure where I fit in the blogosphere anymore. For years I have straddled the infertility/pregnancy/loss area along with the mommyblogging area and the political area and the adoptee area and the mental health and medical areas. I sort of pulled it off and I sort of didn't.
Political bloggers in Canada, as I've mentioned before, tend to use the aggregators to get their audience and don't write about personal stuff very much, with occasional exceptions. I'm done having babies and done with pregnancy, and sooner or later will be done with breastfeeding. My infertility continues because I still have medical problems related to that, like osteoporosis and endo, and ovarian failure, but it's not such a huge immediate thing. And Mommyblogging? Social networking? I've always blogged about parenting and my kids and husband, but I really don't care about clickrates or ads, and although I have strong opinions about raising kids, I also know that most of the ones on these blogs turn out just fine, because most of the women blogging are normal nice people with normal nice kids. And arguing about things that can be on a continuum can be a bit crazy making.
Mostly because, on every blog around, every little post, every little comment gets blown up into a huge thing. We always seem to assume that if someone is doing something differently than us, it must be BAD. But unless we are talking about bizarre extremes that could harm or kill someone, (and they are a whole different subject) then really who cares precisely how we get through the mushy middle?
Different does NOT equal Bad. It might even be good! Except on the internet, which has created a whole new level of hideous conformity.
Like, I can't stand the way some potential and completed adoptive parents assume that all birth mothers and adoptees are trying to wreck things for them--yet never once notice the horribly unethical lawyers and agencies who screw over their clients for money. CAS here in Ontario is one of the most poorly run disasters in government history, yet when I talk about it, I'm the bitter adoptee. Well, the Ombudsman of Ontario isn't adopted or bitter. He just doesn't like to see billions of dollars wasted while kids are beaten and starved. But no pointing it out for me!! Which fucking drives me apeshit. Honestly, anyone who is human should be outraged at the things that happen to kids in the system, in any country.
But that's not the most difficult part. It's the self-esteem thing. Try as I might, I cannot bear to read anymore bloggers, especially women, mostly all women, blame themselves when any issue on earth is discussed. Get pregnant, don't get pregnant, stay pregnant, don't stay pregnant, c-section or vaginal birth, breastfeeding or formula, baby does X, baby doesn't do X; husband, sitter, teacher, MIL, boss, co-worker, BFF, government, politician, does X, or doesn't do X, (yes, there are political/business examples too) the one thing that I can always always always guarantee is that regardless of the advice given by anyone in the comments or by email, women will always blame themselves.
It's never the doctors fault, or the clinic's fault, or the government's fault, or the daycare's fault, or really anyone on earth's fault, except the women in question.
It makes me WEEP to read it.
The worst part? When you point out that their midwife, Doc, nurse, Boss, husband, whomever has totally let them down and they really do deserve better; they get angry at the commenter! Literally, how dare we not join in the blame game and beat up the poster! And if the institution or person were ever actually proven to be at fault, then the woman blames herself for--- working at the job, picking the doc, not knowing about new study x, or new and improved product y. Meanwhile, how on earth could we ever fix everything or know everything about everything? OCD me doesn't, even Dr.Google doesn't. We do the best we can with the situation we've got and we depend on the experts we hire to give us the right advice. Trouble is, internally, we don't hold them accountable for their fuck-ups, instead we blame ourselves. Like if we were nicer or better or thinner or prettier or not so screwed up none of this would have happened.
Do you think men blame themselves like this? Not fucking likely. They blame us.
Before anyone says it, I know that I have done this in the past to myself. No one can beat me up like me, and I am trying to change. But how can I change if I keep reading the words of people who keep doing this to themselves? I need to have a safe space for myself. I keep trying to find a part of the blogosphere that is a safe space, but really, the past two weeks, I learned that pretty much doesn't exist.
Take Micheal Jackson for instance. He was a pedophile, plain and simple. He may have been abused himself, but lots of us were, and we don't abuse others. He made a choice, and he made the wrong choice. And now that he is dead, his kids are better off because Daddy can't hurt them anymore. And no, I don't want to debate it, I have heard from every goddamn corner of the blogosphere that the whole world loved him, even though he was a child molester and mean old bitchez like me are supposed to ignore that "terrible trouble" and just focus on Good Shiny Happy Things. His daughter gets up at his funeral and parrots her lines just like a good little abuse survivor does and you have all taken this as proof that he wasn't an evil bad man.
Well if you want to see similar lines spoken, show up at the domestic violence court in downtown Toronto any weekday. Every damn day, women get up and beg and plead for their husbands to get off with no record and no jail even though he beat them and the kids half to death and please please please Mr.Judge, he's the best husband ever, they swear. And after he promises to get "counselling", he gets out of jail, and they go home together, and then he beats her up, again. And she defends him again. Until he kills her.
Same thing for Family Court and children. Kids never ever want to say a bad thing about a parent, even a parent who has almost killed them. After a long time has passed and they finally feel safe enough, maybe.
So, gimme a break, those kids have to live with Momma Jackson and that hideous family now, and if there was ever a more dangerous place to admit that her daddy was an abuser, well, I can't think of one. Abuse survivors do what we have too to stay alive. Someday, she and her brothers will come forward if they ever find a safe place, and when they do, I swear on a stack of bibles that this website and if it's gone, me in its place, will be the one place the one person on the planet where no one, ever ever doubts them.
You know why? Because through all this anger and awful nastiness directed at bitchez like me, one thing has become clear; there has to be a space where someone absolutely believes in you and me and all the other innocent average everyday people who have no choice but to trust figures of authority.
It's the only reason I can think up to keep blogging. I know there are more. But I still won't fit in very well as long as people keep angrily defending the institutions and authority figures that screw them over.
You are all good people.
You are doing your best.
You are not to blame.
You had no way of knowing.
Please let me help.
Please love yourself.
You deserve better.
Maybe I should just leave comments like ((Hugs)) or "Damn that Stephen Harper", or "You go girl!" instead?
So, I'm struggling.
I'm supposed to go to BlogHer in less than two weeks, but I may just really hang out in the bar and drunkenly tweet. Especially when the ballroom karaoke machine starts up and one of his damn songs starts up.
Tuesday, June 16, 2009
He may tell me I can have my medication or that I am screwed or that he has no idea.
Kaz and Mac are fighting and annoying each other because summer vacation has started. Their end of year concert was cancelled and all of the children left in tears because some idiot parent had their kid tested for swine flu, and it came up positive. SO PANIC ENSUED. *eyeroll* Meanwhile, 30 or 40 other kids have been on and off sick for weeks, all with the same symptoms, which means that our school, just like every other private and public school in Toronto is riddled with swine flu. And it's no big whoop! Sniffles and aches people. One day of fever. That's IT.
If people really were that terrified of swine flu due to an actual physical vulnerability, they'd get the Flumist vaccine, which is a live vaccine and actually does offer some protection against a wider range of the flu viruses, not to mention the pneumonia vaccine. Or say---how about washing their hands? But do they do that? Hell, no.....much better to spread panic and stupidity everywhere we go.
My BIL P is being subjected to horrifically bad health care in the hospital he is in Montreal. No one is giving a shit about his physical problems like the strokes he has had, or the liver failure or cardiac followup on his quadruple bypass or doing anything to diagnose or treat his issues. They just keep adding and adding more and more psychiatric drugs. They recently had a giant team meeting and admitted that they have no frigging clue what is wrong with him. However, the Docs really don't think we should bother to investigate or get second opinions.
Guess what I think??
Guess whose husband isn't listening to her??
My other BIL Ph is in the throes of a bad divorce and custody fight and it's almost over. I haven't blogged at all about it, (on the off chance my blog was ever discovered) but Mr.Cotta and I have been trying to be supportive of him and it may be safe to talk about, but holy crap, thank goodness we are nearing the end! The custody fight was bizarre, and would you believe, my niece is fourteen? Yet no one seemed to give a shit what she thinks except the judge thank God! (My niece wanted a half and half time split that worked around her school, sports, and social life. She also wanted it to be flexible and casual because she doesn't like fightiing. Instead they called the lawyers and went to war.) This week, they are in the final throes of who gets what in the house. Then he moves out and it's done.
Ironic aside for some of my audience--my niece was an IVF baby and yet---things did not work out so perfectly, eh? Parenting and marriage after IF aren't so easy and maybe getting a live baby doesn't solve anything after all.
More stress; trivial kind, we have so many freaking ants in our house, the roof job is a disaster, the dishwasher broke, the freezer on the fridge is broken.
I swear, I couldn't make this shit up if I tried people.
Updated to add: Cardiologist says my echo is perfect and I have an exceedingly perfectly healthy heart. Now to do battle with my GP.....
Thursday, June 11, 2009
I met some very lovely women at the Toronto BlogHer meetup this past Saturday and I enjoyed myself immensely. Thank you for taking me Lisa! (She was my beard. Just in case.) In fact, after chatting with Her Bad Mother and everyone else, and mentioning that story about CATSA and breastmilk on planes (is that like snakes on a plane...?) guess what I saw today? This! Awesome, thank you thank you to everyone who reads and tweets and does whatever to help fix our Canadian mess!
I think that BlogHer '09 might work out even if I will be hiding in the corner behind my computer. Mostly because it seems that everyone else is going to do that as well, so it will be a crowded corner. Heh.
One funny thing. Last year Mel had blogged about blogger cards and how they get handed out with all your info, and you know I've been dithering about what to put on my badge and tell people. Well, it turns out that at blogger get-togethers, everyone introduces themselves as their real name and then says their blog name. And if you don't say your blog name, or url or something, then there is a long weird silence. Like---well---who are you?
And everyone is nice and nobody cares about details, but, I have to wonder, they are also likely not as crazy as me or as much of a naked blogger as I am. Although, after reading Niobe's confessions posts and Julia's secrets post, that may not be true, turns out y'all are as interesting and fucked up as I am, but nobody admits it except me. Two weeks ago, I was convinced that I was the only nutbar in the blogosphere, but now it's fer sure, I am not alone. Which is awesome, right? I need company! Otherwise people will think I am just talking to myself.
But to get back to my point, I need cards people, and not just the goofy plain typed ones with my real name and address for playdates. I need one with a design! Which means my blog likely needs a damn design! Something it has never really had. I just picked a blogger template and changed a few colors and started typing. Since I never actually look at my own blog, but just read comments on email, it never occurred to me that we might need to put some lipstick on this pig.
So what should I do? Where do I start? I have no ideas, beyond hating the color green. Also hate peach. And I need some one to do it all for me including installing, because I actually can't do any of it. I can pay someone? I can type, and I talk a good game, but I'm always afraid to fiddle with settings. Plus cards. I know there are local places that print them, but how? Do I email it? Email what for that matter? Or draw something with crayons? Chalk on sidewalk? Sanskrit on paper?
Anyway, if you have any ideas for facelifts or bloglifts or contacts, pass 'em on. I may not remember to put on face makeup at this thing, but I'd like it if my website looked good. And if I do it on my own, the only look I'll dream up will involve the theme, "Cheap 'n Crummy."
Sunday, May 31, 2009
Adorable but not really practical. I fear for the rest of his lovely forehead at this rate! He is terrified of loud noises and especially showers and the printer on the computer. I tried to take him in the shower and let him play with some bath toys at my feet one day and he screamed like he was going insane and we gave up on that plan. Anyway, he is also growing molars. Four at once. Cause hey, why do anything halfway, right? We have given him tempra round the clock and he is chewing and gnawing on frozen washcloths and freezies and such, but he really is suffering. Kills me to see it. I can't wait until it's over, and he feels less cranky and whiny.
Which is why I am so tired and barely blogging right now. I can manage twitter from my phone, but that's about it, and what with mercury retrograde and all, technology has been suffering greatly at our house. I am on my second blackberry this month and it still isn't working perfectly. Then my husband's phone broke, and then my nanny's phone bill was astronomical but it was all a mistake. The roof leaked again and fornicating raccoons took up residence. The power keeps going out and the new car broke down and carpenter ants invaded, and now I am finding broken punched in bits of drywall everywhere. So far, the dishwasher, the whippersnipper, the back gate, the bathtub drain, the shower and the baby's crib have broken again in May.
Really, it's all a bit freaky when things go haywire around here. So I've been busy!
Now, nobody is seriously ill or anything, and for that, I have to thank my lucky stars, do not misunderstand me. We have the money to fix it all, and it will get repaired--but umm, it's a lot to break at once, isn't it?
Actually, Mac is sick as we speak, fever of 103.5, poor baby. He is supposed to go to sleepover camp with his class tomorrow and likely will not go. I am sad for him feeling sick, but as you all know, hate sleepaway camp and secretly am kind of glad. Bad me.
Ok, someone is crying. Tylenol for them and wine for me.....where did I leave that brown paper bag......yawn.....
Monday, May 18, 2009
I realized later that I left something hanging in the comments on the last post. Basically, the issue here is not the Canadian health care system. I'm free to go to any family doctor I want and they can refer me to any psychiatrist or specialist anywhere. The issue here is prejudice against mental illness and competence, a problem in every country, whether it's privately paid, or publicly paid. In Toronto, I have a lot of family doctors to choose from, and there are some specialists in Adult ADHD here. The issue is getting in to a Doctor who I like and respect and has some competence, while still dealing with this health mess prior to running out of the tiny amount of medication I had left.
You see, the last ADD specialist I had was a bit of a weirdo. Quite apart from all of the health and personal problems they inappropriately disclosed to me, this Doc personally insulted me several times. They were so strange in fact that I'm not going back there, no way. And although I can find a psychiatrist without much difficulty, I don't think I can find a specialist in Adult ADHD as easily, or very quickly. And finding one who isn't nuts themselves? Oy.....challenging to say the least.
As for finding a new family doctor? I'm so torn about this. I trusted Dr.J. so completely, so totally. She has been with me through everything, literally since my first pregnancy test all those years ago. She was there when my babies were born and when they died, and she has been there for me through every medical adventure in between. So what do I do now that I have discovered that deep down she holds the same prejudices towards people with ADHD as Joe Six Pack? I mean, I've always known she's an imperfect Doctor but in the end, she'd admit it and try to educate herself, which is better than most Docs. Except in this case.
Now I feel betrayed, and if I can't trust her then what on earth am I going to do? Any family doctor I go to will get a copy of my records from her so I'm pretty much screwed if I go to someone else, courtesy of the way she will write it up, and anyone new might be just as discriminatory.
I know how to breakup with a friend, and I still remember how to dump a boyfriend, but I really don't know how to breakup with my Doctor. I'm not sure I want to.
Tuesday, May 12, 2009
First: to any of my recently acquired political followers....I am an emotional writer and I know most of you are not, in fact, let's cut the crap, members of political parties are not allowed to simultaneously have both careers and emotions or mental illness or anything but serious debates and personal lives filled with elegance and sunshine and puppies.
So please go away if this makes you uncomfortable. Come back some other day, k?
Second: after my comments on some blogs recently, about the futility of getting help from doctors with infertility or pregnancy loss...I know that it hurt some of my personal friends to read that. Because they really really want to believe that their doctors care if they get pregnant or if their babies live or die, and I was perhaps too blunt. I really do need to stop that, at least on other people's blogs. It kinds sucks all the hope out of the room. They can come to my blog to abandon all hope, right?
So again, if you need to believe that Doctors give a shit if we live or die, and that medicine is about helping people attain a quality of life, you should look away. Because this story really will suck every last ounce of hope out of the room.
The story is that for many years I have had a mild PSVT, which is a spontaneous super fast heartbeat, that comes on and then goes. It can be serious, like with Atrial Fibrillation but over the last 15 years of pregnancies and miscarriages, etc. I have had extensive tests to make sure that mine is the nice mild boring kind. Basically, about three times a year, my heart races anywhere from 120-170ish beats a minute, for about 2 to 3 minutes and that's it. If it lasts longer than that, I just have to do a Valsalva Maneuver which means I push down like I'm pushing out a baby or pushing out a poop, and it ends. (I always call it a vulva maneuver, hehe.) It just ends. And there is no residual heart damage, no funny beats, no nothing.
After a while I almost forgot about it, until someone asked me specifically about heart issues. And then nine years ago I saw the episode of ER where the student Doctor admits to having ADHD and tries to go off her meds and they showed what she was like. And I saw myself on the screen and realized that it was me. I went to a Doctor, had a battery of tests and after a full assessment, started taking ADHD medication.
And the universe shifted on it's axis.
As far as the PSVT I've done holter monitors and BP checks and echocardiograms and stress tests and for the last eight-nine years I've been on my ADD/ADHD meds while those tests were done. And not once did I ever have a high blood pressure or a funny test result. If anything, I was the healthiest person my cardiologist had in his practice. I actually asked him why bother coming back, but he said hey, every couple of years, just visit and we're done. I do have the clotting issues that caused my miscarriages but my cardiologist doesn't think they are linked to heart issues, and I have none of the other risk factors like stiff arteries, etc that might mean I have a potential cardiac issue. So everything was fine.
Until I went to Vancouver and partied for 4 days at the convention. No sleep, bad food, drinking lots, Starbucks by the bucketful, and lots of stress due to events and then trying to get my breastmilk back to Toronto on the plane even though the Canadian government (CATSA) has illogically decided that breastmilk is a dangerous substance and breastpumps are bombs. Regular readers here know that any encounter with government makes me so anxious I want to vomit, so you can just imagine how bad it would be if I was forced to have an argument with a security guard. I mean adrenaline city here people. The Americans let breastfeeding moms bring pumps and frozen breastmilk without babies on their planes, and so does every other country and airline in the world. They know that moms need to keep up milk production and that forcibly dumping milk is ridiculous. Except for Canada....so I had stress.
So much stress that I had an SVT on the way home, and the valsalva thing didn't work, mostly because I wasn't pushing very hard. (Grunting like that in front of others is embarassing, and hard to do quietly on a crowded plane, ok?)
There was big drama blah blah blah and finally some medical personnel got me to push hard enough to stop it, and it was over and I felt fine. Even the doctor who saw me afterwards said it was ok, no issues, no problems.
The big problem happened later when I saw my family doctor, Dr.J., who abruptly decided that this means I can no longer take my ADHD medication. Even though I wasn't on any of the medication on Sunday and in fact, had this SVT happen when I had no medication at all. She will not renew my medication because she is worried about her liability and wants another doctor to spend months rerunning all these stupid cardiac tests and reassess everything, and possibly end my entire prescription forever. (Note: she does not think it's dangerous, it's all about getting sued. Plus she has never liked me being on any medication and this is the perfect excuse for her.) She also thinks it's no big deal to go without psychiatric medication for me or anyone else except the most severe cases and that I should learn some coping strategies.
That's right Doc, because a major biochemical imbalance of the brain can be dealt with by coping. In fact, I hear that all the mentally ill are just a bunch of fakers and drug addicts and lazy people, right? I'm such a slacker....if I just pulled myself up by my bootstraps, I'd be fine, right?
I have been in tears ever since, trying to figure out how much medication I have left and being terrified of what will happen when it runs out. I've been trying to find another doctor and possibly a specialist to do battle with them and convince them that ADHD is real. Still freaking wondering if I can I parcel my last meds out carefully, how many social events do I have? How will I appear in public? What will I do when I get lost, get into car accidents, get speeding tickets, lose my purse, lose my phone, lose my way, am late for every single appointment, school pickup, forget to pay bills, and most of all tell people off.
Off my medication, I am the master of the vicious retort, the nasty awful comment that hurts and tears down others. On my medication, I might think it, but I keep my mouth shut. Medical people call it inappropiate verbal impulsivity. I call it Foot in Mouth at it's most benign, and terrible bitch at it's worst. Adderall works perfectly for this symptom for me. Nothing else does, and I've tried them all, trust me. Without it I have no spatial awareness and no social perceptions. I truly cannot read a room or the people in it. I fall over things, stumble around like a drunk even when I'm sober, injure myself, choke on food, (Heimlichs are painful, didja know?), and just generally am too loud and act like an ass. Off my medication, I have failed every academic test I've ever taken, and screwed up every job for pay I've ever done.
And jobs I don't get paid for? Like being a Mom? I suck at it....I forget to make meals and get kids to activites and school and lose notes and lose track of papers and just generally feel so angry and frustrated with myself for endlessly failing it all, that frankly, I'm scared of how bad a parent I'll be off the medication. I lose my patience, and yell at my kids like a shrew instead of calmly just making them do what they should do. As a wife, I embarass my husband in public by saying and doing ridiculous things and I become a burden on him, not a partner. When I was pregnant and breastfeeding he kind of blamed it on my hormones, but after a while, that excuse got pretty weak. It's not fair to him or to our lives to suddenly incapacitate me because a doctor doesn't think my disease exists.
And before you say it---I know that there are people with ADHD who function without medication. Well, every illness has degrees and mine is severe. And frankly, I do question how well people function without medication. They make a big public thing about it and in the end just make it harder for people who do need meds because they make it look like we're the weak ones and they just managed find the bootstraps and all of us fuckups could just get it together, we'd be fine too. I sincerely wish I could find someone who would publicly stand up and say that they can't function without medication and how awesome and wonderful it is so the rest of us wouldn't feel so inadequate.
This diagnosis explained my entire life, and since I started medication my life has changed so completely, that as a consequence, no one believes that I could really be that bad off meds, because it's been so long since they saw me such a mess. When I was pregnant and off medication, before Motherisk said it was okay to take it, I just hid in my house and spoke to nobody. (And, yeah, I made some awful comments on blogs by accident then until I stopped because I saw that I was a mess.) I'm worried that I will now screw up even more and make ridiculous comments and hurt the very people I care about the most, all the bloggers I read, who have been so wonderful to me, and who love me. I would die before I would hurt you, but I don't know how I can blog and comment and not hurt you all if I'm off my meds. If this forces me into retirement and then I can't get any support, then what the hell will I do?
I have begged my doctor at two different appointments this past week, and cried and tried to explain what this means, but she really doesn't understand. At this point, without meds, I cannot go back to school and try and do my graduate degree, and I cannot work because I'll just get fired. I can't participate in the Liberal Party because I will inevitably fuck up and wreck everything and I'd rather they think I just disappeared than permanently ruin my public reputation. (Yes, there are dozens and dozens of people in the party with mental issues who may or may not take their meds---and trust me, there is an obvious reason so many of them have political problems. It's all I can do not to urge them to get help...) My husband has enough stress what with his brother's mental illness and his business and he can't take over everything. It's one thing to say that a nanny can do the laundry and make sure the kids get fed, but as wonderful as ours is, she can't be their mother, and frankly, I want to do that. After all this work to get live kids I want to be the one to enjoy them and see them and talk to them and be the one to comfort them. I don't want to be the blob in the corner who lives in her own little world and stares at the wall.
Really that's what this comes down to. I really didn't like the person I used to be before medication. I like the new person I have become a lot more and as I accomplish more and succeed at things I like myself even better. I finally have my family complete and I could have a career and not screw it up, and maybe just maybe actually be a success in life instead of the mess I have always been.
I think that is also why I am most angry and offended at this Doctor. I am grown adult with an ability to understand the medical issues and weight the risk/reward ratio. I know what an SVT is, (a big fat nothing) and I know how to handle it. I also know that I have had these SVTs dozens of times since I was a little kid and I sure as hell wasn't on ADHD meds then. But whose body is it? Don't I deserve to make the final decision? If I, a grown woman, decide to refuse medical treatment for a physical ailment like cancer, it's legal in Canada, and then I'm the one facing the consequences. Same for mental illness. There is a huge amount of literature on a patient's right to refuse medication. Well, why the hell doesn't it work the other way? Can't I make sure I GET treatment for an illness I have been proven to have? If I have a Charter Right to security of person, then doesn't that imply that I have the right to get medication for mental illness and not just to refuse it? And why are mental issues treated so differently from physical issues? Why is mental quality of life not as important as physical? Why is the medical profession so invested in creating physically healthy patients who are forced to endure foggy brains and vegetative-like states? To me, that isn't the quality of life I want for myself. I have a right to live my life the way I want to, as an intelligent calm rational person.
I have a right to sanity.
Friday, May 08, 2009
Doctors suck, life sucks, and then----you just decide to forget about everything.
Political buddies--friends I met in Vancouver? It was lovely lovely wonderful and awesome meeting you, but FYI, this is more of a personal blog, and although I do write about politics sometimes, you might not find what you are looking for.
Oh, and Manuela and I did not end up meeting, darn. She is doing well, single, and enjoying her life in BC. (Psst, she is on Facebook if you ever want to say hi!)
My pumped breastmilk made it back, in my checked luggage, although it did get squished, and I lost about 1/3 of the bags to bursting or spoiling. Made me cry. All that work, down the drain. I still fail to understand why Stephen Harper is terrified of my breasts? They really aren't that scary dude! Even the Americans aren't scared of pumped breastmilk and Medela breastpumps. In fact, in every country around the world, they are just fine with women bringing breastmilk back after being separated from their babies. Meanwhile CATSA scanned me like I was a terrorist and ignored my letter from the breastfeeding clinic stating it was a real medical device.
Saturday, May 02, 2009
Feeling better this morning, but still quite unhappy. I think I also miss my kids and especially the baby so likely that's causing me to be more emotional! Sigh....plus pumping sucks when you already have low supply and then have a machine set to low power.....just waiting for CATSA to tell me the machine is a bomb again and that my frozen breastmilk is a biohazard. Fucking morons....
I'm meeting a lot of lovely wonderful people these days, and old friends who are fun to hang with, so I'm just going to focus on that, K?
Also, I met Tara from Run for my money, and her supercute baby Ruby! And later Manuela from the former Thin Pink Line blog and I will be hanging out and I will be sure to update you on that.
Take care peeps, back to twittering!
So far there are lots of fun and great things happening and I'm glad I came for that reason.
Only problem is that I've had a weird issue come up with a friend. And because my usual style is to blog like I'm bleeding all over the page, I really really want to talk about it. Just open up a vein and spill every emotion, y'know? But I can't.
I can't cry or look sad or talk about it at all.
Off to eat and have a few drinks.....sigh.....
Tuesday, April 28, 2009
But I will miss him sooooo much!!!
Do you know that I haven't travelled anywhere alone since the last Liberal Leadership Convention? Or really bought any decent new clothes since then? (Maternity doesn't count or that pair of shorts for Mexico!) So tomorrow I have to pick up a few clothing items, get my bangs cut, pack, pick up prescriptions, and groceries, leave a giant list on how to take care of Julius and the boys......and of course, go to the bank.
Oh, btw, relax about the pandemic shit please. I just left this comment on Cecily's blog, may as well repeat it here.
"North Americans, that is US and Canada, are for some reason not getting it very badly, when they are infected, and the best science up here says it's because we have mostly all either had the flu before or the shots and so we have some immunity.
But on behalf of Sarsville...really it's no big fucking deal compared to the other stuff that kills us in the Western World. Everyone panicked here, and it actually was hard to get if you weren't a hospital worker who was caring for the original patients. Meanwhile, every one had heart attacks panicking over it and the economy was a mess.
Every year thousands of people die from C. Difficile, and MRSA and car accidents, and drug overdoses, and alcoholism, and hospital mistakes, and violence in the home. All preventable, btw, if we spent half as much attention and money on them as we do on ridiculous boogeymen like swine flu. I don't see everyone panicking over those things. Just wash your hands and relax."
I mean that. Take a chill pill everyone.
So, I will be blogging and twittering and stuff while I am there, but who the hell knows what I'll be talking about! Everyone else will be very very serious, but I will likely yip about the food and the clothes and who is throwing up in the corner. This might turn into the Liberal Party version of Perez Hilton if I really get in a mood. Woot!
Off to bed now.....
Monday, April 27, 2009
Our friend, and member of Liblogs, Red Canuck, is dying of terminal cancer. He had fought it before and beat it, but it has come back and he has posted a farewell. One of the things he asked his readers to do in his goodbye post, is to register as a bone marrow donor with Canadian Blood Services.
You can go here to One Match and register if you are Canadian, or here to register if you are American. This is where you can find some international registries.
Red Canuck, for those of you who didn't read him, is from Vancouver. He's kind and witty and by the way a Doctor as well. He managed to skewer his opponents and make us all laugh along the way, so I this is kind of fitting.
For those of you who medically don't qualify for donations....give money. Did you know that the Canadian Health Care System does not cover all the costs of testing and recruiting donors? Transplants are free and donors and recipients pay nothing, but other costs incurred in maintaining the list and running Canadian Blood Services must be covered by private donations. Something I think should change. A publicly funded cord blood bank with stem cells for use by everyone young and old wouldn't be too shabby either. (Yes, this paragraph is intended to be a big ol' hint to political types reading it, could you guess? Not everyone has a spare $1200 bucks to freeze and store cord blood.)
Canadian Blood Services by the way is the national organization that provided the blood that saved my life after my crash c-section and Julius' birth. I've been waiting until after I finish breastfeeding to repay them a few pints. I figure I owe them, right?
So after I register as a marrow donor, I'm going to start figuring when I can go and split open a vein. In the meantime, if any of you would like to give a pint or two, or register as a bone marrow donor, it would really warm the cockles of my heart, and the heart of a very nice guy and his family.
Thursday, April 23, 2009
I am not blogging very much right now God, because I haven't got anything even remotely cheerful or positive or happy to say.
I actually kind of wish it was just my perception of life or just my mood because then I could do something to fix it, but frankly I can't this time.
My kids are all miserable, and my husbands family is insane, as is mine. From the outside, it looks good. We have money and a good business, even in this economy, and three live healthy lovely kids.
But--you know God that things aren't always as they seem. Soooo, I have a request?
Could you help my brother in law get an accurate diagnosis? Get him back in the hospital, off of ALL the psychiatric drugs he is on, and maybe, just maybe a Doctor who has read a medical textbook or knows something, could get involved? And help him.
And then maybe my husband would feel less angry and stressed and freaked out. Maybe we all would not be fighting tooth and nail about him all the time.
And yeah, there is more---could you help my older son Kaz as he goes through puberty? He's friggin killing the whole family. Tantrums like a three year old, except he's almost 13. I know it will get better when he turns 18, but right now--Oh Lord, I just don't understand this stage at all.
Give me patience.
Give me strength.
Or at least give me a chance to take a time out and a valium when I have none of the first two left.
I'll write more when I don't sound like such an ungrateful whiny bitch, ok?
Friday, April 17, 2009
Unless they want to come over for a non-judgey visit with dirt on the floor, pizza and beer. Sigh....
Planning Mac's birthday party, and dealing with various crises, I realized that I have not mentioned my current preoccupation. You know how I have been on domperidone, and how I have been trying to keep up with breastfeeding because I had breastfed the other two for at least fifteen months, and darned if I couldn't try just as hard for Julius?
Well, it's getting harder. I'm not sure what the hell is going on with my crap ass hormones this time, but I can't seem to make as much milk and at night especially, a small child is noticing. And keeps trying to get more milk, and crying. So I have doubled my dose of domperidone and I'm doing what I can.....but if this isn't the most bizarre thing on earth because I have never had this problem before!
I've always had loads of milk. Bad latches, thrush, mastitis, pumping problems, blisters, nursing strikes, lumps, you name it, I've battled through it. But supply never was a problem. I never had to even take domperidone, not when I was on the pill after Kaz was born, not when I went away for five days without Mac, nothing.
I know he's 10 and half months and really, we could do a little formula and it wouldn't be a big whoop, but that assumes it would be my decision to use it. This would NOT be my choice, this is because of my body failing me once again. And I can't figure out why?
I just don't get it, it's like this insane thing where just when I think that infertility is behind me and my problems are over, they come back to bite me on the ass again. Osteoporosis, POF, thyroid, and now breastfeeding issues, possibly caused by Sheehan's and placental abruption and holy shit won't that be a lovely lifelong issue to have? Fuck, fuck fuck....If one more person suggests to me that infertility is all about having babies and that it's no big deal and we can just move on after we finish having our kids or decide not to keep trying....I will scream. This, btw, is just one of the many reasons I always say that adoption is not a cure for infertility. They are completely and utterly separate issues. Something too many Doctors forget.
None of us ever stops being an infertile, do we? It's a disease I will always have whether I have zero living children or one or three or twelve.
Tuesday, April 14, 2009
Comments are not working properly still. Some people can comment, some can't....don't know why, I've tweaked and checked, and bleh...Blogger is sucking big time. Email me and I'll post your comment if you can't.
So on Twitter I mentioned that I went to the ER Sunday morning. The very tippy baby fell into the computer desk and slashed his head open and we missed Mass and he got a 2 cm cut that had to be glued together and will scar for his whole life. And all because I can't get him antibiotics for his ear infection, his red, bulging, fluid filled ears that magically look just a bit better as soon as a Doctor's office is in sight. These days it would be easier to get crack than antibiotics y'know....cause head injuries are no big whoop but don't you dare treat an infection! If any of you in the Toronto area know where to find these mythical Doctors who give out antibiotics like Pez, drop me a line. I'm desperate and do anything at this point.
Three days before that my husband and his family blew up in a crazy way that I can't detail here but OMG, did you ever wish you could force seven very nice but dysfunctional people into family therapy? Basically, there is this huge family secret that everyone knows but no one talks about, mostly cause it's old news and no big whoop. And the person the secret involves thought no one knew at all and has a heart attack thinking about the subject. Well, this weekend someone dared to bring it up, and anxiety attacks were held by all.
But nobody can talk about it because it's a big secret, so really denial is in charge again, and NOTHING IS GOING ON. Got that? Now pass the ativan sweetie.
Next, on Saturday Mac broke the rules and got into my curio cabinet and gave Julius one of my antique toys, a wooden babushka doll, and the nanny kept letting him play with it because she didn't know what it was, and they left it on the floor---and it got stepped on and crushed into too many pieces to fix. It was over 50 years old, I had it since I was 5 when a neighbour gave it to me. It was handmade in Russia and now it is garbage. *weeps*
Then Sunday, after we got back from the ER, I spent hours trying to get the house in shape and cleaned up and then my husband picked up the order from the caterer and there was not enough food, or so it looked, so he went back and got more, and spent loads of money---but we didn't need the extra food after all because everyone was too busy arguing to eat.
We did need at least one person to STFU and not tell me that it was all our fault that Julius fell and whacked his head because we are "forcing" him to walk to early, which as you know will result him being stupid. Supposedly, the longer they crawl, the smarter they are. Gee, so happy that I was told that....and here I thought it was critical to berate him mercilessly until he walked. Cause you know, that's what I do with my kids, right?
And then today, my nanny tried to "help", and took the tablecloth out of the drycleaning bag and washed and dried my new linen one in the washing machine after hand scrubbing it. The red wine stain is now permanent and it has shrank considerably. Sigh....I get that she doesn't know about a lot of modern appliances and things, but I have now explained dry cleaning like a dozen damn times and she still thinks it's just a rich Canadian thing and she could do it better if Iet her. My head almost exploded; shit....that was an expensive disaster. On that previous post, btw, I want to make something clear. My nanny gets paid well, and yes, I do expect laundry and cleaning to be done during naptimes. Julius sleeps 3 hours a day. After she takes a lunch break, it's not okay with me for her to sit and watch TV while I pay her, and I was crystal clear about what I expected when I hired her. So yes, she does lots of things that are unconventional, like taking in the recycling bins and helping me garden. (We tag team, I work on flower beds while she holds the baby and she rakes leaves, etc. while I breastfeed or get him to nap.) And so what? In exchange, I have taught her about subways and vacuums and microwaves and baby car seats and what city snowplow/melters are (she thought they were tanks!) and all about cable TV/stereos and computer programs and how to handmake baby food and roast a chicken and how to call her local politician and what to order at Starbucks and Tim Hortons and lots of things she needs to know to be a real Canadian. I'm trying to get her to go to driving lessons, and she goes to ESL class now.
Now if she could just ask before helping.....or if I could just have a week that didn't suck donkey balls.
Thank God there are no more holidays coming up, I'm not sure how much more joy and family togetherness I could take.