Thursday, May 28, 2009


Had you known me in University, when I was actively pursuing a Theatre Degree, you would know that I was on a quest for perfection. I was determined to leave this planet after giving my best. Personal perfection, intellectual perfection, creative perfection, carnal perfection, and worldly perfection drove me. Even when I succeeded and was commended by external stimuli/people/teachers/lovers/friends/family, I never permitted myself to listen to that praise. I never wanted to stay there. I moved forward as quickly and swiftly as I could, never stopping long enough to take in what good I had created. This same quest in High School pushed me. I was, insanely, on this same quest in my first, and only, year at Senior School in England.. .I was 11 going on 12. There was no sign of this quest leaving me when I joined the Fire Dept., when we moved to the countryside...I was in my 30's. Or had my babies. Or got married. Or continued taking classes. Or worked my 20's. I worked hard. I played hard. I thought hard. I rested hard. I ate hard. I dotted all my "i"s and crossed all my "t"s. Then filed them alphanumericalbetically. Then updated my file list. I have no trouble finding things. Perfect.

Having said all that, my desk has always been a mess. A disaster zone. Chaos. Still is. Um, not perfect.

My friend Drea says that I've "...been through fucking hell this past year..."

My Mum tells me that Jehovah has given me this illness because my shoulders are big enough to carry it.

My Father tells me he's worried sick about me. And nearly always interjects that it's Ontario that is making me sick, because this province is toxic. You can't live between Toronto ('Smogville'), Hamilton ('Steel Town') and Sudbury ('the land of Nickels') and not have the air and water affect you. The natural resources are sick. Ergo, I'm sick.

My Husband tells me that I need to make the necessary adjustments to relearn to live my life.

My Immunologist tells me that I need to make the necessary adjustments to relearn to live my life.

Drea points out that I no longer have to work, live on 128 acres of land in the middle of nowhere, can take my kids swimming for free in the lake ANY time I want to (weather permitting, of course), that I have all day to myself, that I have a man that loves me, two gorgeous kids, family and friends that love me and whom I love, and don't have to answer to anyone. Aside from the whole illness thing, she quips, your life is perfect. Drea does intellectual stand-up comedy: Spoken Word. She's brilliant at it. I'm a fan. Perfect.

A different person would take the time that I now have, sit on their arse on the couch and watch tv all day, while nibbling every so often and going for a pee. I have a great deal of trouble doing this, depsite wanting to sometimes. That drive for perfection speaks to me really loud most of the time. "WASTING TIME!!!!!! DO SOMETHING!!!!!! USE YOUR TIME WISELY!!!!!!!!", etc. Some of you may be familiar with the "etc.s" too.

I'm not sure where this drive comes from.

What I do know is that sitting too long on one side of the fence isn't good for you. Nor is the polar opposite. Seems to me, that some sort of balance needs to be present.

You can't be this driven and healthy too. Ergo I'm not.

I'm not saying that the insanity that I've called my life for the best part of the past 20 years is responsible for reaping some serious physical and emotional side-effects. But it can't have helped.

My husband has said to me on more than one occaision, "Nothing is ever good enough for you. You're never happy." In various tones and circumstances. THIS is usually what our arguments are about. When we have them, which, thankfully, isn't very often, it usually boils down to that. Once every 2 or 3 years I am given a sobering dose of someone else's reality and told that nothing he ever does for me is good enough. Until this past year. He's easily said it to me 7 times. In one year! I can't be responsible for why he's driven to have a woman in his life that pushes these buttons for him but I can be responsible for not being that person, because it's not healthy or balanced or ok. And, I can be responsible for not pushing myself to the brink of death 'proving' myself to the world. Quite frankly, it's not that interesting. Nor am I. Who cares if I prove anything? No-one but me. Perhaps if I give myself permission to relax and appreciate things as they are, I can enjoy the fruits of my labour when I take on projects or challenges...instead of rushing and pushing through them so they are over and I move onto the next thing. OR WORSE, I throw myself so hard at something, that I burn out and never finish it. How many unfinished projects or 'things' do we human beings have?? Don't get me started on the guilt associated with not finishing

What has happened is, despite my new limitations, that I have continued to try and push forward, in the same way that's always worked for me before. Really hard. And am no longer reaching my destinations...not even close. Ergo, there is a sense of failure.

This sense of failure is all too familiar to me. It's not just reared its head in the past year or so. Systemic Mastocytosis and a life threatening latex allergy haven't created this. I can't remember a day as a child, or teen, or young adult or adult that I didn't feel like a total failure. While every one was sharing accolades with me, praising and enjoying my work, stories, food, hospitality, singing, teaching, listening, sharing, theatre, children, marriage, fire department, yoga, running, fraternizing, whatever...I was sure it was never good enough, ok, or worthwhile. Or that I was. (The guilt over not receiving the love, praise and offerings of those people kind enough to share their time with me is another discussion altogether...) I never savoured a moment of perfection, in those moments being perfect as they were.

If I may be permitted to observe my own Self for a moment...this is pretty sad. Not to mention, unecessary.

It's even sadder that it's taken my world becoming infinately smaller, through illness, for my appreciation and love of my Self to begin growing. That might sound a bit new agey, but there isn't really another way to explain it.

Tonight, despite the downpour soaking my farm and my hair, I looked around me and was aware that my life is already perfect. I just haven't taken the time to "smell the roses" or Be right where I am, as I am. All this time I've spent searching, driving, proving, and trying to be happy, I just needed to BE happy. "Do or not do, there is no try."...says Yoda. It really IS as simple as a CHOICE. And I haven't always chosen this.

The need to rush to the next minute or moment or thing to do went "POOF!" and here I am, findng that time (an illusion) has slowed right down to a pace that feels good. Perfect. Why didn't I let this perception in, years ago? Hmmm, chances are good that I wouldn't have recognized it. How would I know NOT to speak unkindly to myself, if I had no idea that I was speaking unkindly to myself (and possibly others?) Thank God we have the ability to learn.

So that list of unrealistic expectations that I have of my Self needs to be rewritten or thrown out. Imperfect perfection is what I am, and that feels good. (Do I get to thank Adam and Eve here?)

If anaphylaxis, Systemic Mastocytosis and freaked out cells have brought me to this place, then I am grateful for it. I wouldn't wish it on anyone. And, I wish I didn't react to the world we live in the way that I am BUT, I've arrived at "I'm alright" thanks.

Tuesday, May 26, 2009

C-kit Mutation testing et. al.

The call came yesterday. My Hematologist is going on mat. leave in early July (with twins, it turns out) and wants to do the c-kit mutation testing herself. Apparently, I'm an 'interesting' case...oh joy. So pre-op will be June 2nd. And they have to call back to confirm the June 9th procedure date. They need me in first thing in the morning for the procedure to make sure NO LATEX is in the operating room. I'm being put under for this procedure. With my history of shocking to local anaesthetic and the post-op hypothermia and anaphylaxis suffered in March with my right knee surgery...they don't want to take any risks.

I'm vaguely relieved that I won't have to be awake for another of these bone marrow tests. Equally relieved that my Hematologist/Oncologist (Dr. Lisa Hicks of St. Michael's Hospital in Toronto) thinks it's inhumane to do a bmb on someone without freezing or painkillers. She also wants a really good sample, so this is the best way to get it. We were hoping to co-ordinate my impending hysterectomy (not exactly thrilled about having to have this either...) with the bmb but Gynaecology at St. Mike's is booked up. The earliest consult I could get in for was June 22nd. It's gonna be a busy Toronto or St. Michael's month...

I'm scared to write the next bit. I want to jump for joy that it's been almost exactly a month since my last serious series of anaphylactic reactions (and subsequent 4 day stay in West Parry Sound Hospital - who totally didn't know how to handle me...sigh...) but I'm scared I might jinx myself. Everytime I've ever written that I've made it to such and such time landmark for no reactions, I have one within hours of writing it and then end up saying, "I spoke too soon..." So for now, I will write that I'm reserved about writing such things.

Overall, it's been a pretty good month. A few 'flare ups' we call them in Masto world. Not bad enough to be full anaphylaxis but enough to be uncomfortable, painful or debilitating. Had to use my new epi-spray (available over the counter in the USA but to be used with caution) about 4 times this month but it's better than using epi pen and calling in the big guns. The spray got me over the hump, enough time for drugs (Benadryl, Ranitidine, Reactine, Cromylyn, Ketotifen, etc.) to kick in and works REALLY quickly. So, I consider this a plus.

Have also kept myself on a super strict diet this month. This morning, I broke down and asked for a Tim Horton's French Vanilla, Half Decaf BUT my only deviation. It's been dairy free, mostly gluten free, meat free, cruciforous vegetable free, and been napping and resting sufficiently. Here I am with my period and doing ok so far. Usually I'm in hospital with my period because I flare up SUPER bad during this time of the month. Not unusual for Masto women, apparently.

Having said all that, I've not escaped the dire bone pain that comes with this disease. IF this is the disease I have. Ergo the c-kit mutation testing in the next 2 weeks. Dr. Vadas, my Immunologist (also at St. Michael's) and I have agreed that KNOWING for sure, is the best way to go. Because on the off chance this ISN'T SM...we need to know so that we can start looking elsewhere or realize that I'm the first of some sort of something else...however, I present like SM, so it's probably that. We'll see...In the meantime, I've been in incredible pain this month. I don't moan about it much (except to Antony) but it's bad. Night time is the worse. Sleep is...difficult.

My gut has been up and down too. But overall somewhat better. Could the Pantaloc be making some sort of difference? I'm on that now too since giving myself a hiatus hernia and stomach bleed through all the allergic coughing and puking.

I've been taking FLORADIX liquid iron and B-vitamin supplement too. It's the least aggressive of all iron supplements (in my humble opinion) for the body. There's NO constipation with it. It's made from natural sources, and doesn't taste too bad either. So, I'm wondering if this is making a difference in my overall energy levels? The dark rings under my eyes are improving. Hoping to have those mostly gone by the time my cousin Heather gets married. I'm supposed to be MC'ing the reception and I don't want to look like a bag of death. Am trying to keep myself as healthy and as strong as possible for this trip out West to Winnipeg at the end of June/beginning of July because this wedding is very important to all of us. As all family weddings should be. I don't want to let Heather and Julian down. That means taking precautions now, and then.

My hair continues to fall out. Anyone else suffering from this? I used to have such a thick and lucious head of hair. Now it's brittle and falling out far too much. Advice? Comments? Thanks.

It's nice to have a 'normal' sized tongue in my head for once. So for this, and not being in the hospital and flat on my back in bed ALL day, every day, I am utterly grateful. xoxoxoxo

Saturday, May 16, 2009

House & Farm work

How is it, that when we have guests coming to stay with us, I am able to clean this house in ways that I want to clean it everyday but just can't muster the muster to do so??? It's 1:30 and this whole house (except for our bedroom) looks exactly the way that I like it. It hasn't looked like this forever....I wasn't fussing either. Just going from one room to the other cleaning, sorting, purging, arranging, making, was all so easy today. I've even got dinner almost done. And dessert. No losing of tempers or getting cranky. Think I might have a nap.

We had another 24 chickens arrive yesterday. They aren't sure about where they are...can't imagine the journey that's brought them to us. They all look shell-shocked. However, they all look super healthy and brown with slick looking feathers. Unlike our other 24 that were free from a egg laying mass production facility. They consider these ladies too old and redundant to keep. They still lay eggs, perhaps not every day but most days and keep us with a steady supply of eggs as well as keeping all the bugs and slugs out of the garden.

The 24 ladies that we've had this past month are used to the routine around here now. In the morning I let them out of the coop and they spend all day clucking around the yard foraging for slugs, worms and other bits of whatever it is that they ingest. Whatever it is, their yolks are super yellow. We have no rooster, so there's never ever any fear of fertilized eggs. Then, around 5pm or so, I go out with a big bucket of grain and oyster shells and kitchen vegetable scraps, shake the bucket and they all follow me, like I'm some sort of pop star, up to the coop. In lieu of shrieks of celebrity status, I get clucks and bkrrrp's. They all follow me into the coop where I deposit said food in the metal feeders. I chuck a bunch of it in other piles on the floor of the coop...they like to forage and it offsets any internal warfare from the avian masses. Then I do this all again with water. We collect rain in barrels for them.

The pigs are getting bigger. Starting to get jowly actually. One of them still jumps like I'm prodding him with an electric stick every time I go in, but the other two are used to me and are mild mannered. They eat whatever slop we throw at them. Lots of garden and vegetable scraps mainly.

We test rode Pal, the horse we are thinking about getting yesterday. The girls rode him bareback and without reigns or halter for a bit. Then we put a halter on, just to move him around with a bit more ease. He's so easy going. This could be the right horse for us.

Ok, my Grandmother, Uncle and his wife are coming for the weekend, from Kitchener...that's about a 4 or 5 hour drive usually. It's pissing rain, so crappy weekend weather. And, it's supposed to SNOW tomorrow!!?!?!?!? in May!?!??!?! Anyway, have to get dinner finished, and help my daughter finish her cake. It looks and smells great.

Have a safe and happy long weekend everyone!

Thursday, May 14, 2009

The Farm

I've sort of written before about where we live. We bought an old dairy farm about 6 years ago. Some thought us crazy. Some thought it made sense.

We've loved and hated it, but right now we're trying to do what it is we set out to do when we bought the place...grow our own food; raise our girls in a place where they can learn about more than latch-key kid-dom, after school tv, video games and the barrage of other personal entertainment units.

SO here are some photo's I took of our life from this past week...

Tuesday, May 5, 2009


I realized yesterday that I haven't heard the birds sing since I was about 6. My last conscious memory of listening to the birds is a warm afternoon at Harefield Infant School. A warm breeze floated over my blue and white checked dress (that my Mum made for me.) The dirt was dry. Our class was playing right before story time, which we were going to have outside today. Jumping from small stone to small stone in the dry dirt, I was listening to the sounds of summer and the courting calls of avian critters that I pretended were speaking to me. "This way...." one would call. "Over here..." another would reply. I wanted to play with them all. I wanted to sprout wings and fly. I'd be a blue bird, the same colour as the baby shade in the blazing afternoon sky, with a white cloud of feathers on my chest.

My garden affords me this gift. The gift of song. The gift of human silence. The gift of memories, long since forgotten. wow.

Saturday, May 2, 2009

To Do...and Reflection on What was...

This week coming, I have a few things to do.

I need to get a hold of my first Immunologist, in Winnipeg, to see WHY her secretary can't pull the abnormal tryptase/24 hour urine elevated histamine test results that got the doctor talking about the possibility of Mastocytosis in the first place. I need to call Dr. Vadas and let him know what happened this past week. I need to call Dr. Stevens, my family GP, to book a followup to being in hospital appointment (have to be seen at the hospital in Ambulatory Care because I react in his medical office facility...they still have lots of latex and dust.) I can't even begin to think about the hysterectomy I'm supposed to be getting done.

Dr. Vadas says he just needs to see ONE, just 1, set of these abnormal test results because my body has been reporting 'normal' levels since. Despite all this 'shocking' stuff. I KNOW these results exist because when I went to see the first Hematologist/Oncologist, she was in receipt of them and told me that she didn't think we needed to bother with a bone marrow biopsy because my clinical history and these test results were as conclusive as she needed to diagnose indolent Systemic Mastocytosis. A positive bone marrow biopsy, in her opinion, wouldn't change ANYTHING...not how we manage this disease or how frequently I will continue to 'shock'. She suggested, at this point, that I return to the Immunologist and have further tests done to determine actual 'triggers' for me (some of which, we in, latex, bees/wasps and various foods.)

Which I did.

However, Dr. Hicks (Immunologist) didn't agree. So, she referred me to yet another Hematologist/Oncologist. Six months of further shocks, hospital visits, hospital stays and experiencing the boundaries of my world getting smaller and smaller with each reaction. She put me on the following to try and ease the frequency and severity of these reactions:

10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.

Had the bone marrow biopsy done in October 2008. Abnormal test results were found in March 2008. First Hematolgist was seen in July 2008. Second Hematologist was teleconferenced and seen in Sept. 2008.

I stopped taking the aforementioned meds. after 4 months of use. I saw very little difference in terms of improvement in either frequence or severity of reactions. With the exception of Reactine...for the first time since I was about 17, my sinuses were no longer inflamed, stuffed or infected. I could breathe clearly through both nostrils.

My family doctor, after yet more anaphylactic reactions and a 3 day stay in hospital in November 2008, thought we should see an Immunologist closer to home, in our own province. So, I was referred to Dr. Fischer in Barrie. I received an appointement to see him April 2009. However, the week before Xmas 2008, I had two anaphylactic reactions back to back, a mere day or so I called Dr. Fischer's office to see if they could put me on a cancellation list. When I explained to the secretary what had been happening, she spoke to Dr. Fischer and I had an appointment to see him the following morning. So, three days before Xmas, I was in his office at 9:00 am.

He had all my notes from my family doctor (who had requested all records and test results from Dr. Hicks in Winnipeg - we were there 8 months during 2008) but the abnormal tryptase/histamine wasn't there. Odd. He put me on a regime of:

10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.
10 - 50 mg of Doxepin (formerly used as an anti-depressant but they discovered it wasn't particularly good at this, and that it was fabulous as a Mast Cell stabilizer.) I was to start at 10 mg, see if it helped, and if not, proceed to 20 mg, and so on. I ended up on 50 mgs, taken before bed.

I saw Dr. Fischer two weeks later in mid January 2009. I had suffered two more anaphylactic reactions, despite avoiding all known triggers, and as per his advise, eating a low-histamine diet (no chocolate, alcohol, potatoes, tomatoes, shrimp, etc...) I was no longer going anywhere, except to my friend Lori's house on Friday night's for 'game night.' (Her and her husband had taken great pains to de-latex their home.) He thought we should send me to Dr. Vadas who studies Idiopathic Anaphyalxis at St. Michael's Hospital, in Toronto (Canada.) They would arrange for an appointment.

My husband and I saw Dr. Vadas on February 18th 2009. After a 3 hour intake, he ordered tryptase blood work (that came back normal "3") and told me to stay on the same regimen, minus the Doxepin. He said Dox was of little use. Unless I found it helpful with depression...which I didn't. He wanted to see me in six weeks, unless I had any reactions - in which case, I was to call the office and report to him. I had a big one four weeks later, despite being virtually housebound. I also had two knee surgeries during this time. I had another reaction the day before we went to see him for followup. He added 1 - 4 mg of Ketotifen to the regime. Start at 1mg, work up to 4mg. And wanted to see me two weeks later.

I suffered 3 more reactions before seeing him again mid April 2009. He added Gastrocom/Cromyln/Nalcrom, taken 4 times daily to the regime.

And here we are two weeks later...and I've had numerous flare ups, and 9, yes count 'em, NINE anaphylactic reactions since.

Where I AM seeing improvement (in a HUGE way) is in my day to day functioning. I'm no longer suffering with massive weakness (all over body weakness), the shakes, headaches, sinus pain and the relentless swings between constipation and diarhea....and I'm no longer flushing, getting tachycardia, all over itching, watery and itchy eyes and nose, vomitting, nausea, weird rashes/hives/bumps/spots that appear and then go down days or weeks later, blackouts, and a sense of panic several times a day. Nor am I exhausted when I wake up. Nor am I grumpy and in bone pain agony all day, every day. My tongue can, and does, look and feel 'normal' sometimes. I'm able to do more in my day, even if it's at home.

However, I'm still shocking. The follow up to this is bone pain, diarrhea, stomach pain, intermittent flushing/itching/rashing/hiving, puffy and sore tongue, vomitting, nausea, weakness, body vibrations/tingling and blackouts, tightness in the chest, pain in my right lung, and don't 'feel right.'

I've lost 9lb this past week. Not exactly how I want to lose weight, but it can't be helped. That stomach bleed and hiatus hernia seem to have done a doozy on my system. I've got lots of flub on me, so 9lb isn't a huge deal. And to be honest, it's nice to see the scale go down because I've been trying (eating and exercising regularly) to shift this weight but it's had no intentions of shifting. Until now.

And since it's 1:30 am, I'm guessing that my old friend insomnia has returned for a bit. Ugh.

This blog entry has been monopolized by this health crap. I have LOTs of other things to do in my life...have two gorgeous girls to play with and look after, garden to tend to, pigs and chickens to tend to (omg...I hope I'm not reacting to them!?!?!?), rooms to paint and junk to sort out and get rid of (purging!), so my life isn't entirely about this illness. Although, it takes a pretty massive front seat these days. I look forward to the day it doens't.