Wednesday, September 30, 2009

DD week 2 & silly MD's

So, it's been a week. Some side effects have already started, some have not. I keep reminding myself that it's supposed to get worse before it gets better. I've had days where I've been in pain throughout most of my body - the edema gets that bad (feels like it's February again). My Wife, kind as she is, offered the only medicine she knows: western medicines. I haven't taken any painkillers not because I'm a martyr, but because I don't want to start the vicious cycle of being medicated 24 hours a day just to treat the side effects from the primary medication. I will, eventually, find a way to live through it. I always do. Whether it's my funky Asian patches, relaxation, massage or what not, I will continue to resort to "something else" rather than chase the pain away with more meds.

Then there's today. I've felt nothing but really really good. In fact, I was out at a group activity this evening and a friend commented on how (good) I look. Maybe it's the new hair, maybe there are good days to meds. Either way, I'm told not to expect anything (positive) for months. So, I'm letting go of expectations (but secretly preparing for the worst). And apparently not all side effects appear in the first week. Some can sneak up on you. OK. fine, I'll deal.

Last week I was a little freaked out at starting these things primarily because I'm a control freak - yes I know I am! I like to control what goes into my body and how it reacts. That's one of my aversions to medications: once you swallow it you have no control. If you don't like it you might be able to vomit it up, but really you have NO control over it. Patches and ointments can be washed away. Accupunture can be stopped mid-session. So can other non-invasive treatments, but meds, nope, there's no stopping them. Taking these things wasn't just about dealing with side-effects, issues of funding etc., it was about the lack of control that I have. And I do not give that up easily! I'm not one to surrender easily, which has really stunted my spiritual development. That's about turning to (your) Creator andnot taking on anything more than what's yours. Some days I think my shoulder scholiosis is due to the weight of the world just sitting there!

I had a doctor's appointment this week of course. So yet again my blood tests caused some a alarm. When do they not? Anyway, these had nothing to do with my heart - the dr. was freaking out over my unusually low blood-sugar. Um, well, that's no news to me. I've known I'm hypoglycemic since I was about 16. Apparently me knowing it isn't enough - they want to know where the official diagnosis is and why I haven't had one. Probably because I won't go for the tests. I can't fast. I won't fast actually. I know what happens. I had to fast for an ultrasound last winter and by the time I made it to the labs I was in a (low) sugar shock. I was initially mistaken for a drunken idiot until I had the wherewithall to lift my arm and expose my medic-alert breacelet. Next thing you know the nurse handed me a glass of OJ just as I had hit the chairs.

Anyway with regards to this dr. wanting an "official" diagnosis... all I can do at this point it laugh. I mean, really if my levels are low withouth fast do they really want to have me fast and well, pass out? And what good is the "official" dx in my chart when I've been living like this for 20 years. I just told her that I did not now need a number to tell me when I need to stop and eat since I am well aware of the symptoms after living this way for 20 years and all. Sometimes doctors really are full of themselves, sometimes they don't trust that the patient trusts their bodies. Sometimes they need you to depend on a machine (blood strip tests) to tell you what you already know.

At this point in my life, with all that I'm living with dis-ease wise, I couldn't be bothered to humour them and give up another day so they can have their numbers. Didn't take me serious when I was 16, why now? and which sponsor is pushing the newest sugar-testing machines?

Tuesday, September 29, 2009


You don't think about it until it affects you. Death, disability, loss. We all know life is full of loss, and according to one of the primary koans of Buddism, life is suffering. It's so much easier to go through the motions rather than fully show up - that would require paying attention, much too much attention. And we modern humans just aren't able to slow down enough to do that.

Monday was not my first Yizkor service. Since before my conversion I attended these as part of the whole High Holiday line-up. Monday was however my first blury Yizkor. Just the evening before I asked a patient friend, what exactly was invovled during the service? I knew what went on, but I suppose I needed to know that it was OK for me, as a "step" mom to mourn. Since Step-son's heart "attack" (ie, before he even died) I was not given permission (by my inlaws & outlaws) to have feelings of remorse, nevermind express them. (That story is still not far enough away -in time- for me to write about but trust me, it will get written). Not for me, mainly for him & my Wife, his mother. His more-than-birth-mother. The woman from who's (between) legs he came and who's arms he died - that woman.

Anyway, my patient friend briefly outlined all that was to be involved so that I could make the choice for myself. It seems that whatever we did the year before escaped my mind and heart. So I'm glad I asked. For those who are not Jewish, it's the memorial part of the ending of the Yom Kippor (day of atonement) services. And of course, if it doesn't affect you, it's usually another set of prayers and readings you go through the motions for.

This year I holding my mahzor in one hand, and never without a tissue in the other. Loads of congregants lost loved ones this past year (or maybe it's that I finally started paying attention). I felt like the only one who couldn't keep it together though. Later, after receiving a warm hug from our student rabbi I realized that Step-son's death happened a mere 10 weeks ago. It hasn't even been 3 months. The deceptively cold weather and the ripening reds and yellows of the leaves trick me into thinking it was a whole other season ago that this happened. And it was. But our Canadian seasons are so short that it still hasn't been 3 months. It's been a long ten weeks. The space in which time travels and takes has definitely shifted. In our house time is now marked by "before" (his death) and "now". Some days I'm compelled to look at his picture and aks him why? Other days I realize I can no longer watch my favourite CSI series anymore. Too many people die in them and death is no longer entertaining.

It's starting to get cold out there. I felt the north wind on my ears today as I walked to the bus stop - but inside I'm starting to melt. The time and distance away from all the crazy people in that hospital room is helping me get my own time and distance to make sense of things. To no avail. We still haven't heard results of the autopsy. I'm not sure if we will ever be given the 'right' answers to our one question: why.

I'm reading about writing right now. Part of my graduate work (ok, most of it) has been about creativity and recovery - revovery in the traditional sense (from chemical dependency) to the non-traditional: re/covery, dis/covery and re/storying the self. My finale project is to write a curriculum and programming to deliver (to different agencies; my advisor is practical. She's been the only one to let me make this into a work/workable project). I love what I'm reading and yet I hate it. As I read how writing and creating (arts) help all sorts of people to un-cover, dis-cover and re-cover themselves, others, and the worlds around them, I too am using this same tool. A little aprospos I suppose. A little too clsoe to home sometimes. But then, it's who I am: the personal is political (or as Christina Baldwin writes: the personal is universal) and the universal/politcal, personal.

I still can't write the story of the 4 weeks in Van. I'm still melting. Perhaps once it's all out on the floor the obsessive compulsive in me can go and pick up the pieces and file them where they belong. Perhaps some pieces will make it back to my heart, sharp edges filed down so as not to continuously cut so deeply.

Thursday, September 24, 2009

Day 2 of DD (designer drugs)

Well it's day two of me injesting these little pills that will somehow, miraculously open up my pulmonary arteries in a few months from now. I don't want to tempt Mr. Murphy, but while knocking wood and repeating "keineihore" over and over again I think I've concluded that at the very least, I'm not allergic to them. No anaphylaxis or other crazy initial reactions.

As for the side effects, it will take time as these drugs work to unweave the way the oxygen's been circulating throughout my pulmonary arteries and other breathing patterns established over the last three decades. I do feel 'wheezy' for a few short hours after I take them but really, I'm quite used to that.

The way I run my daily life is sometimes more like a side effect than the actual side effects. This morning right before I got out of bed, I heard my Wife return home (from work). She started up the stairs and our short-bus cat decided to race her. I could hear little Misha skid around the corner of the stairs, bolt through the door (not the cat door but the door was opened by that point) and leap right into the bed at such high speeds. Cats are know for their lazy slowness, but this girl was so fast that when she jumped up she landed righ on my chest in one big pounce that felt like a punch to my diaghram. It freakin hurt. The Wife couldn't believe the speed and pressure at which this little kitty used. My cats, little darlings, can be worse than side-effects! So really, living with these abusive little creatures is preparing me for some breathless days ahead!

Tuesday, September 22, 2009

IT has entered my system

So I've started this new drug, for Pulmonary Arterial Hypertension (PAH). It's toxic, perhaps not like chemotherapy, but I still wish there existed some sort of support group. Actually I've wished that there was some sort of support group for general congenital heart defects. There aren't (in this small city). There are many cancer support groups, but not congenital heart support.

I'm trying not to think about the side effects, I'm trying to think about other things (I have much to do after this entry to take my mind off this new designer drug spinning about in my system). I hope I'm a lucky sort: that I don't experience the very bad end of the side-effects. I never did like throwing up even when sick. It's not something I want (then again, who would welcome it?)
I wish I knew others on this drug. I wish there existed non-medical information (phenomenological).

Actually, I just took a moment to look up non-pharmaceutical company sponsored monographs and it seems there's a side-effect that's more disturbing than vomiting: death. And that side effect wasn't in the -.05 percentile. It was much higher in teh 2006 FDA reports. I'm sure there's some way to explain it - otherwise my Cardio-man wouldn't have prescribed it for me. Then again, one can never know what and how a drug will react with some one's body. I dunno, 640 deaths is a lot in a group of no less than 3000. I never did well in stats, but that is a stat that's not well! I realize there are other variables (such as the fact that most people given this drug are on their way out anyway) but it just makes me itch.

The last time I took any sort of heart-related meds I was a child. By the time I hit 12 I hated what I was taking so being the stubborn-know-it-all that I am, I stopped taking them. I wanted to prove that I was pumped with pharmaceuticals from the time of infancy to 12 for nothing. I really truly believed it was just a waste or money and taxing my liver etc. And you know what, when my pediatric Cardio-man found out and ran a bunch of tests, they realized that those paediatric heart meds did squat. (No worries, I'm not so crazy as to go off these Designer-meds without some discussion and consultation). But that little experiment shaped how I viewed pharmaceuticals from that day forward: as a money-making scheme for big companies, promising big-dreams to sick people all over. I know that there are meds out there for which work and really do help rather than hinder people. I'm on others for other non-heart stuff but I still think these drug companies rob us silly with their outlandish costs. And besides, what did we do before pharmaceuticals? Plants, faith, courage, etc. That's pretty much how I've lived most of my life - and even for this complicated congenital defect, that was enough. It's no surprise that I'm in heart failure. No surprise. It sucks, but I really did receive so much more life-time than anyone ever thought- including those fancy MD types. Pharmaceuticals? No, avoid them if you can. You really can live without most. Just dedicate a bit more time to the maintenance of your overall health: mental, emotional, spiritual as well as physical.

Monday, September 21, 2009


Tomorrow morning I start my designer drugs. These are the little pills that, at the start dosage cost about $3000 a month. They arrived today and are really, quite small for the price!
Over the weekend I did the math: I'm swallowing the equivalent of a pair of Bloodstones (boots I've always wanted) every two days. I will never have Bloodstones in this lifetime so these pills better be something else! I have a standing (blood) requisition coming my way too. After reading the monograph I'm going to be sure to follow through on the tests, no matter how much I hate needles. My NP and I both hope that these little pills actually do more good than negative. She says it'll take about 3 months before I notice anything (if I do). Lovely - meanwhile I just have to watch that my eyes don't go yellow from toxicity. These are the times when I'm grateful to be married to a medic. She knows what jaundice looks like. Now, I'm hoping that I don't suffer one of the side effects: vomiting. You'd think this was chemo (no disrespect to those who have done it, I believe there's no comparison - it's horrible). All the other side effects I pretty much live with anyway.

The anxious person in me just hopes that at best these things don't kill me! One of the other side effects screw with your heart beat. All I need is my already irregular heart rhythm disrupted. My Wife's 38 year old cousin just had a heart attack and now it seems everyone in her close circle is a heart patient. (We still haven't heard back from Step-son's autopsy). At least there's some hope for this new year. Hope keeps people alive.

Well, if it harms me I'll know within days or weeks at most. If it helps I'll have to wait some time before I actually start feeling it. I'm praying for patience.

Sunday, September 20, 2009


If only realeasing stuff was as easy as throwing breadcrumbs into the river!

Wednesday, September 16, 2009

fear & excitement

I think fear and excitement should be part of the same continuum, just opposite ends of course. For a few months I've been fearful, or rather, apprehensive of the new Rx I've been waiting for clearance (funding for). I haven't really trusted how such a toxic drug could really create a difference in my living experience. For me the toxins didn't outweigh the "more energy". Maybe I'm hoping that in giving me more energy it will also somehow take away the strain on my heart thereby extending my life by a few months (years).
That aside, it just seemed like there were too many hoops to jump through to get to the point where I would be facing a new pill bottle.

Well, here's a positive report from the type of people that work at the local Heart Hospital. My N.P. who's been advocating for the funding is going ahead and sending the Rx as soon as she can. I still haven't been approved by Wife's work's insurance company: in fact, I've been denied and it's in appeals. Apparently I don't meet the requirements to warrant such expenditures nor do they feel I need it. Hah - if only they had a copy of my paper-weight medical files(s)! That and I don't understand if something has been prescribed by a Dr. doesn't that usually imply it's needed? So the patient support program to this drug (for which I've been in contact with weekly) has informed me that if it doesn't get approved on the appeal my next step is to apply to the provincial Pharmacare. That program would (ok, should) approve of it, but if it doesn't my NP knows for sure that the provincial Disability branch will cover it (that's who's covering my O2 at over $500 a month right now). (man, I'm one expensive chicky-pooh!)
So my NP is doing what she can on her end to just get the meds delivered to me.
From fear to excitement. This might actually happen!
I'm trying to check-in with myself to make sure I don't have any expectations for this medication. I also have my cardio team constantly reminding me that this isn't going to lengthen anything - so really it's hard to forget. I wish them wrong! Can I really persevere through this? If so, for how much longer?

The wait, a different sort of wait, is on.

Thursday, September 10, 2009


So the only constant in life really is change - I haven't abandonned this project - but I have been struggling with the meaning of life. If anyone out there knows why we're all here, by all means - can ya let me know?

The past few weeks have been hectic - ending summer, getting ready for a new semester (I will always live via the semestered calendar since I will always either be a student or a teacher!), and having new folks move into our house. As part of my ritual to rid myself of this past summer I decided that now was finally the time to cut my long mane right off. It had reached the needed length for donation (it already met the other requirement: virgin hair). So I had a special friend cut it all off just in time for Rosh Hashana - if only it is that easy to rid oneself of all the reasons why I cut it now. I cannot just fold up Step-son's death neatly away like the clothes in his box. I was reminded yet again just how much I still don't understand why children die by seeing a blonde child cry in the hallways at work today. I was so grateful it was the end of my class and I was on my way out because seeing this child made me feel so...incomprehensible. I'm slowly surrendering to the fact that he won't be moving here next year or ever, but I'm no where near accepting why he died.

Which is completely opposite my journery with my own mortality. I'm able to accept why I'm going: I've been going all my life (out there).