Tuesday, May 12, 2009

Got any bootstraps?

I've been leaving comments and tweets, etc. that try to describe the very bad thing has happened, and not really explaining anything, so I figure it's time to say it here.

Two problems:

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.

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?

Sigh.

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.

19 comments:

  1. stupid, stupid doctor.

    honestly, what is her problem???

    i am so sick of doctors telling us that nothing is wrong and that it's all in our heads. it took NINE doctors to diagnosis my stage 4 endo. i've complained for 17 years of painful periods, but i was told to just to take more pain medication.

    i wish that more doctors could take patients seriously. we know our bodies and we know what we need.

    argh. you have every right to be pissed.

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  2. ((((hugs)))) I really don't like most doctors. My dh has ADHD and he's a totally different person off his meds. I don't think we'd be together still if he wasn't on medication...

    I am so sorry. I hope you can find a more compassionate doctor.

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  3. Can you find another doctor? Is there a reason why you have to stay with a doctor who is clearly not listening to you? Can your cardiologist prescribe the medication for you? It is clearly helping your PSVT if you hadn't had an episode until you were under extreme stress.

    Is this one of the idiosyncracies of Canadian medicine? I would definitely be doctor shopping until I found one who was willing to listen to my needs in addition to reviewing my history. What about a psychologist/psychiatrist - could they override your family doctor or is there some reason you don't want to go that route.

    I think that doctors have an idea that they know better than anyone, but we have to be involved in our own health care. I saw my dad fighting Rheumatoid Arthritis while the doctors could do nothing to help him. I see my mom expecting the doctors to fix her health problems (diabetes and heart disease) while she sits back and does nothing. I've been through some baaaad doctors in my time. I know you're probably pretty discouraged, but you have to fight for your right to a peaceful and orderly life.

    P.S. Thanks for your comments on my blog - I'd love to hear your thoughts on Lovenox and allergies... xj2608@gmail.com

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  4. I just read an article in the New Yorker about how college kids are using ADHD drugs to be "sharper". It made it sound like most of the drugs are available online without a prescription. Is that an option for you? (I've ordered domperidone in the past from globaldrug.tv.)

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  5. You already know how I feel about this, and that if I could get the meds for you, I would.

    I hope this is resolved quickly for you!!!

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  6. Thanks guys, I am trying to find a solution right now, but finding another doctor takes time, and sometimes the mail order places don't let you order ADD drugs....so it's a challenge.

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  7. I am sorry for your troubles.

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  8. i'm so sorry - i really hope things get straightened out for you, soon.

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  9. Damn.

    Can you sue her now, for not prescribing? That would take away her worry of being sued (by turning it into reality). Though of course suing is not the best way to foster understanding between people.

    I hope you find a solution.

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  10. your doctor is a door knob. sorry but its true.when a doctor cares more about their liability than doing what's right for a patient then they qualify as door knob in my books. it is those liability scare tactics that cost me my last pregnancy.find a cool doctor. there really hard to find these days. who knows maybe that new medication dispenser can help or find them on the internet somewhere.

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  11. Jeez, of course it would be an easy answer if you lived here in the States => doctor-shop!
    but I guess all things considered, you'd better work w/in the system...
    But yes of course it should be YOUR CHOICE as to such fundamental decisions concerning your own health... Good Lord, I've had a running argument w/my hotshot endocrinologist for the past TEN YEARS; he's always wanting to cut back my dose of Synthroid since I run to the high side of normal. He's finally accepted my argument that I CANNOT FUNCTION at a lower dose, so I freely accept the increased risk of osteoporosis/heart arrhythmias, etc.
    I can't retire yet!

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  12. Anonymous FriendMay 14, 2009 3:37 am

    We're going through something similar with my son - well, not really similar, I guess. He's been put on Concerta, a slow-release ritalin, and when he's with me, he takes it. When he's with his father, on the other hand, he doesn't always (his father is anti-meds) - but when he comes home on those days that he hasn't taken his meds, we just can't handle him. He's a total disaster in school and requires all of our time and energy at home as well. I am trying to get him to understand that taking the meds is not a choice and that it really makes him be a better person. I ought to get him on the phone with you sometime ;-)

    ps. I'm guessing you know who I am, I just can't comment with my real name about this.

    I am hoping and praying that you'll get this worked out (ie get someone to prescribe the medication you need for you ASAP).

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  13. I'm sorry you're going through this - stupid doctor - hope you get it sorted out soon.

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  14. I wish there was something I could say or do hon.
    I t is unbelievable other people think they know what is best for you.

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  15. I'm so sorry to hear this and I hope it gets worked out. I struggled with going on medication for bipolar disorder and really didn't want to - but now that I've been on it, I don't think I could go back to living my life the way I used to. If someone tried to take it away from me, I would freak out.

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  16. yikes, Aurelia. yikes.

    you do indeed have a right to sanity, and to support for getting what you know works for you.

    this sounds so painful, so miserable and frightening. i'm sorry, Aurelia, especially b/c you're being forced unnecessarily into this position. i hope you can find away around all the tests being redone before she'll rescrip.

    i'm Canadian, as you know, and i live in a way smaller centre than you. i think maybe it would still be possible - difficult but possible - to go around Doctor J?

    i hope so.

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  17. Wow, this really sucks Aurelia. I'm so sorry to hear about your recent traumas and struggles.

    I think you already know how I feel about stupid doctors. I've also had quite my share with many, many stupid ones.

    I doubt I can suggest anything that would be of help to you, especially something that you haven't already tried yourself, sadly. I know it's hard to find another doctor....but can you find ANYONE who can write you a prescription to tide you over? Will a walk in clinic do it for you? Tell them you are going out of town, and you can't get into your regular doctor for a refill and just bring in your prescription bottle and say you need it refilled before your emergency trip out of town? I don't know...

    Clearly, your doctor is a moron, and you need your prescription. It seems....cruel, and a form of malpractice for her to withhold it from you! Can you threaten her with a lawsuit or something?!? *sighs*

    Thinking about you and sending good vibes your way....

    Nic (formerly of vanilladreams)

    (btw: this is my new blog: http://noela.typepad.com/a_brighter_discontent )

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  18. Bad doctors patronize and do not want patients (I don't like that word) who give them lip. Good docs (few and far between) work with us, treat us like adults and let us participate in our own care. I am lucky enough to have one of the latter. He is in Chicago so giving you his name will not be helpful. I hope you find a new doc soon.

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