Tuesday, March 26, 2013

a note to a friend

A friend asked me the other day to share with her my "top 10 lessons for dealing with illness". She is in the midst of her own health crisis that will eventually resolve itself. It made me think about what I have learned and how my thinking has been formed by living with chronic illness. I am one to shout from the roof-top about being your own best advocate but I have yet to put into words some of my guiding thoughts until this week. I have cut and paste what I wrote her and hope that it offers some help to others as well:

I'm sure you wanted to hear more spiritual inspirational things like 'gratitude' and 'meditation' which works for peace of mind, but not the physical :)

Here are my top 7 in no particular order:
  • Acceptance of what is, then pushing past it (some call it stubbornness, other strength);
  • Perseverance (see previous comment);
  • Joie-deVivre for the moment, because that's all we have;
  • CAL/saying "this to shall pass"
  • Asking/accepting for help (knowing limits and asking for help with things you cannot do on your own or with spirit-work) eg: taking meds as a form of asking for help
  • Getting lost/found in creativity (a form of spiritual exercise for me)
  • When all else fails, surrendering but reminding myself that "I" am not my illness/symptoms!

Thursday, March 14, 2013

final visit with Dr. Cardio man?

Alright I suppose I'm expected to report about my first visit out of the house. It was back to the Heart hospital. I had my semi-annual visit scheduled since last time I went (possibly August) so I was told to keep it since I want to look into the possibility of transplants.
To sum up, I was informed that I was mis-informed (yet again) about what I would need replaced. Again dr. cardio man stated I would need both heart and lungs transplanted, not simply one lung like my cardiac NP led me to believe on the phone a few weeks back. This changes things again. It means that there's more risk, less chance of finding all of those organs etc.
I was also told that the wait list in the city I formerly lived in is much too long for me and I wouldn't even qualify. That was very disappointing to hear as I would totally consider moving back there. I knew the city well, it was home once, and I still have a smallish community there. It's also close enough to home that my close friends and family could still visit me even one a day trip (only 2 hours away). Toronto on the other hand is really far (up to 5 hours depending on how you drive. I don't know as many people there that I could lean on. My family wouldn't be able to come at a moment's notice. Also, there are no jobs for ma belle as she has already checked. Never mind the cost of living: rent would be ridiculous. I know it sounds like I'm already against moving to Toronto for this procedure but I really am still looking into it. Cardio man will schedule an intake with Toronto via tele-health. I am curious, I will go through with it. Only then will I have more info about this entire process. Right now, dr. cardio man just doesn't have enough information as it's not his domain. He usually transfers and that's that.
What's most surprising are some people's responses to my choices. I've updated my social networking, as impersonal as it is, because there are more people than I want to call that are curious about what's going on for me. Given that I'm not much of a "chatting on the phone" kind of person, status updates suite me well. So here are some attitudes: a few folks are encouraging me to "go for it" not realizing what "it" entails. I know people mean well and want me to live, but after all their lovely memes, inspirational captions about living life fully, about quality and not quantity, I get "got for it". How very disappointing. People really don't stop and think before they "speak" their opinion. They don't question how someone might perceive your "helpfulness". I know, I'm one to 'speak' per se. I very much tell it like it is, for me. The thing is, even if someone "told it like it is" for them, I wouldn't be as bothered because it isn't coming from a place of "you should do this or that" as opposed to realizing what they might do for themselves.
Anyway, helpful people just aren't sometimes! And as Treya Williams Kilber said so eloquently in her book, you don't know what you'd do until you're faced with it so everyone who's thinking they'd "go for it" better realize that they aren't there. If you're not IN that space you have no idea what you would even do. That spaces changes things so don't pretend it doesn't.

Thursday, March 7, 2013

busyn-ness of nothing-ness

Yup so it's been quite a long time since I've written. This being a time of descent.
Well I've had none of that.
I've been spending my time NOT reading about death and dying - thank you helpful friends who've lent me books on the topic. I will, once I turn 40. For the past few weeks I wanted to have nothing of it. Instead I've knit up a storm, to the point that I've moved on from knitting. I tried my hand a crocheting and now I'm bored with that too. I've also spent some time in my much loved office/sewing/craft/meditation room which has now become the new of of the two oxygen compressors. As a result, it's usually too hot in that room, even with the window open during our Canadian winter. Most days the heat bottoms out my blood-pressure (for which is too low to begin with). I spend maybe an hour at most in spurts in that room, slowly organizing things, supplies, notions etc. I figure if I'm going to sew, I do not want to waste any precious energy on looking for a notion. I want everything disponible (at my dispense?). Well today I can say that all my buttons, threads, laces, notions, zippers etc. are nicely organized ~ in a state I've never seen actually ~ so now I can begin sewing. And sew I did! Mind you it wasn't long. I spent maybe 20 minutes at most sewing but it felt so great.
I thought about how psychoneuroimmunology ~ brain plasticity ~ has served me thus far. I want people to know it's not bogus, your brain really can change your body. I have a cardio appointment next Tuesday (oops, I guess I forgot to mention that big news). That appointment will be the first time I will be out of the house since my arrival home. We will be talking about transplants, mainly why I was never offered any. I also want to politely reem out my Dr. Cardio man. I want him to acknowledge the power of the mind over illness. Yes, I know what I'm asking for and I know it's a lot but I'm going to confront him nonetheless because that's just who I am.