Friday, December 12, 2008


I feel blessed to live in Canada, where we don't have to fork out of pocket hundreds of dollars to see a doctor for a few minutes. If we did, we might view the moments that we spend IN the doctor's office with a bit more scrutiny. We might find ourselves fighting a bit harder so that we don't leave the office feeling like, "well, THAT was a waste of time..." So, this post is bitter-sweet. On the one hand, I am utterly grateful for living in this country; on the other, I don't understand WHAT takes so freaking long!?!?!?

At the beginning of November, I had a pretty bad 'systemic' reaction (to who knows what?) after being exposed to some latex earlier in the week. Two Epi's, ambulance and a 3 day stint in the local hospital, more steroids than I care to remember as well as rebound reactions and my doctor (who I really like & appreciate) tells me that she thinks I need to see an Immunologist closer to home. She knows one in Barrie, ON and will have me referred there. My current Immunologist is in Winnipeg, where (in my opinion) she's been both careless AND thorough (odd, I know...) However, Winnipeg is a two and half day drive or a 3 hour plane ride IF you can take a plane, which I cannot.

In the middle of November, I called my doctor's office to see where this 'referral' was. "On her desk" is what her secretary told me; along with the letter that I drafted (at my doctor's request) stating that I am available for work ONLY if the environment is latex-free; the work is latex-free and the building is latex-free; and can be guaranteed.

At the end of November, I rang again...seeking the same thing. And was told the same thing. At which point, I kinda lost my cool, found myself seething, immediately flushing and having a 'reaction' (hmmm, guess stress IS a trigger!...I had, until recently denied this.) I asked the secretary IF she, or my doctor could fathom, even for a millisecond WHAT IT MUST BE LIKE being almost totally housebound, unable to work, unable to function in life, unable to move forward and to be sitting here in your home WAITING for life to start!?!!?!??!!? I got the rote, "I know this must be difficult for you, Fiona"...yaddah, yaddah, yaddah. Yep, you all know how hard it is for me right up until there is something YOU can do to alleviate this situation. Ugh. During this conversation I was able, at least, to get the name and number of the Immunologist I would be going to see. So, being pro-active, I rang, left a message and requested an appointment given that the referral was now going to be with them.

Two days later, I followed up. Nope, the referral and my letter was still "on her desk". I asked WHAT my doctor might be doing with my file, other than maybe hoping that I would go away? "She's reviewing the file, that's all I can tell you," her secretary replied. "THAT file," I shuddered, "is ME; I'm not a flaming file OR a piece of paper." "I know this must be difficult for you Fiona, let me see what I can do," she replied.

It's now the middle of December, and today I got my referral appointment with the Immunologist. April 20th 2009. So, I've been waiting over a month, so that I can wait ANOTHER 4 months. I am MORE than slightly irked, because it's not like I am dealing with some digestive discomfort that kind of puts a damper on my ability to have Tapas or go to Potlucks. I can't leave my HOUSE!!!!!!!! And when I do, I wear masks, and gloves and am ANYTHING but conspicuous.

It occurred to me, while I was talking myself out of over-reacting, this evening, and taking some Benadryl for the immediate flushing, tongue swelling and need to vomit that...whoa, stress REALLY IS a trigger. How ironic that the very medical system that is supposed to be HELPING me is CAUSING me to 'trigger'. It then occurred to me that this appointment in April will be one of those appointments (unless I do something about it) where I show up, and the Doctor has an empty file, looks at me, asks me some questions and I find myself repeating my WHOLE last year and half of ordeals (this time frame being the most crucial and recent of 'episodes') and that, NO, he has no medical records from my GP/MD OR the Immunologist I've been dealing with in Winnipeg for over a year. THEN, he'll likely tell me that he'll have to request this information. WHY ISN'T THIS FOUR MONTHS BEING USED TO TRANSFER MY FILES/INFORMATION/TEST RESULTS, etc???? I know this is how this will go (unless I handle it...which I will) because I've been down this flaming road already, with Immunologists, Oncologists, Pathologists and Hematologists!!!! I keep repeating myself to ALL these doctors, when really, they should be speaking to each other ABOUT me!!! What the hell are we paying them for!??!?!!?!? (Or rather, the Government, on our behalf.) Seems to me, some medical auditing might shed some light...but that isn't going to happen in a medical system already burdened.

I am trying NOT to be selfish about the four month wait that I have ahead of me. Really, trying. However, I'm finding it difficult NOT to react to it all. Because, quite frankly, WHAT is this Immunologist going to do for me? More 'trigger' testing? More blood, RAST, Tryptase and 24 hour urine-catchecolamine testing? Like all the testing done earlier this year, those tests will likely show that I have elevated tryptase (22+) and histamine in my system (and that's when I'm NOT reacting.) Do these people NOT understand that this is ANOTHER 4 months without any significant improvement; without the ability to provide financially for my family; without the ability to be the wife, mother, friend and community member that I want to be; have been and hope to be again.

My husband said to me last night, very nonchalantly, "...until you've finished adjusting to your new life..." This hit me like a tonne of bricks. AM I THE LAST PERSON to KNOW that life will NEVER be what I know it's capable of being??? Am I truly living a life without ANY hope of being a functional member of my family, community and society? Am I really going to have to live the rest of my life in this farmhouse?

Am I stupid for not wanting to accept that THIS is it!?!? I am aware that life is being reinvented for me (or rather that I have to reinvent it), but underneath it all, I keep hoping my life will return to some semblance of normalcy and that I'll, at least, be able to drive again. I'm a Gypsy...I need to travel; to move. I always have. So when I'm feeling like a caged animal, WHY can't any of these Doctors understand that I need them to help me NOW, not after going through all this shit for the past year and half AND waiting another four months...just to SEE someone. It's not like he's going to help me on the first appointment.

No wonder I feel so flaming paralyzed.

No comments: