Friday, February 20, 2009

It's Been A Couple of Good Days...

Living with Systemic Mastocytosis means that you, essentially, learn to 'go with the flow'. Do what you can on good days. Don't on bad days. Perhaps some spiritually sound folks have an easy time with this? Perhaps not. I know that this particular part of my life journey, now with a confirmed Systemic Mastocytosis diagnosis, means that I really need to cut myself some slack. I'm very quick to encourage my friends, family, community to do this...however, taking some of your own medicine can often taste bad, even if it's good for you.

I'm not really enjoying the taste in my mouth; my Self; my soul right now.

Dr. Vadas' comments to me the other day, are ringing clearly, loudly and poignantly in my head. "Fiona, this IS your life. You are going to need to adjust to the reality of this disease."

He's a good, strong, compassionate and understanding doctor. At least my first 3 hours with him say so. I asked my husband tonight if this was real? "Do you think taking all these meds will help? Do you think it's worth it? Do you think they'll work?" My husband pointedly replies, "Honey, you don't have three articles published in the Toronto Star without reason. I think this man knows his shit and I think we need to listen to him." Strong words coming from a man who has hitherto referred to doctors as "quacks" (whether they are allopathic, homeopathic, naturopathic, Chinese Medicine, Ayurvedic, etc.) Where did he see these articles? "They were on his wall," he replies. Whoa, in my self-consumption, I didn't notice anything except Dr. Vadas, the elephant on his desk, the garbage can (I almost threw up in his office) and my husband. Talk about being the center of your own Universe...I didn't even notice this man's credentials and celebrations of his VERY important life work. I was completely absorbed in what he thought was going on with me; and what we could DO about it...if anything.

I understand my self-absorption. It's been a seriously long journey getting to this man. And, to this diagnosis. In the land of Systemic Mastocytosis, you get told and treated like you just have some anxiety issues, and misunderstood by many in the medical profession, as well as in your personal life. You get called a "hypochondriac" and "crazy"...and then worse, you start telling yourself these untruths because...well, for me, I just couldn't understand WHY I was feeling this shitty and WHY I kept having these anaphylactic reactions and WHY I hurt so much in my joints and bones and WHY I was so itchy and WHY the gorgeousity of the mid-day sun made me feel weak, itchy, and fatigued beyond belief and WHY I couldn't keep my body temperature comfortable (I get REALLY cold) and many many more WHY's.

I sent a modified version of my last blog post to my family and close friends (who are really like family to me, and since I REALLY believe we are part of a global family, I am no longer going to make the distinction.) I did this for a number of reasons. Firstly, because they care and, independent of one another, have inquired about what's going on with me and my health situation at some point during the past year...especially when it's been posted on Facebook that I've just had a reaction, or am in the hospital AGAIN, or recovering from reactions. Sometimes I get to post that, and sometimes my husband posts for that my family know the reason for my silence. Secondly, it seemed the more I sent this message, and wrote introductions to it, the more this all became a little bit more real for me. We should never underestimate the power of denial in our lives. Or the power of sharing, for healing. Or, the power of words. Perhaps that's why I write.

I've been encouraging my good friend Dawn, who has SM, to keep her chin up and, not to let the despair get to her - despite losing her home; her ability to help provide an income for her family; her loss of her career & her identity; and, the multitudes of fear and stress she undergoes every time she suffers a reaction, or an episode. She lives in the USA where she and her husband have to fork out, straight out, of their pockets for her healthcare. You can read about her journey with this disease on her blog: In the USA, having an illness and insufficient, or no, private insurance can just about kill a family financially (not to mention ALL the stress that goes with that) and with the present recession, it's even worse. So, they lost it all, and have had to start new without home ownership. But you can't put a price on healthcare or the necessary pricetag that comes with keeping you alive...and that price needs to be paid. Dawn is worth it. She's an incredible woman, with twin daughters that need her, a man that loves her unconditionally and a family that love her too.

Like Dawn, I have also lost my ability to have a career; contribute financially to my family; my identity and while I live in a FABULOUS country, with its healthcare coverage (for which I am utterly grateful), I find myself feeling like a total hypocrite right now...for encouraging her to be the best she can be inside of this disease and her losses. Because this sucks. REALLY sucks.

Aren't I lucky that we haven't lost our home yet (because Canada picks up the tab for my healthcare...and, thank you!) and we have insurance with my husband's job...and thank goodness for that because otherwise, we'd be approximately $6,000.00 in the hole right now. My Epi pens, alone, at $115.00 a pop and needing almost 40 of them last year alone...well, you get the picture. That doesn't include ambulance rides, and the cost of my ACTUAL care at the hospital or my stays there. Dawn can tell you what it REALLY costs...because they've had to pay it.

I encourage Dawn to embrace the love of her husband, her children, her family and the love that we need to have for ourselves because, quite frankly, it's NOT easy being non-functional. And with this disease, we have lots of non-functional days. Dawn and I both share the massive sense of guilt and self-beratement that comes with being non-functional...because our whole lives we've been functional, and more. I know that Dawn would tell me not to be so hard on myself because what I WANT to write, and express, is my utter anger at having this disease, these reactions and I'm totally pissed off about the loss of my freedoms.

This too, will pass. Denial. Anger. Acceptance...all part of the grieving cycle. And that's what it's like to have a life-threatening &/or terminal illness. Our 'what is's outweigh our 'what we'd like's. And that's just how it is.

So as I swallow the taste in my mouth, the taste of Systemic Mastocytosis. I try to cut myself a little slack because this disease does not make me a failure...despite my feeling like one. And, like I said in my message to my family, there has to be a silver lining in all of this somewhere...because without this hope, it's not worth getting out of bed in the morning. And I need to get out of bed, especially when I don't feel strong enough to.

1 comment:

Anonymous said...

Hi Fiona, it's Carrie from Canada Masto Support.

This is an excellent blog. You're doing very well at expressing what it's like to have SM.

I read back to the one previous post. The water temperatures and other weird triggers are very real and common. Dr. Vadas is doing great by you. He's very different today than he was several years ago. So that's excellent.

Keep blogging. It's great outlet and good for you to share how you're doing. You can link to it on the forum if you like too. :) Other patients would appreciate reading it I think.