Sunday, December 12, 2010

Cardio apt.

I had my twice yearly cardio appointment. I hate those days. I didn't even have time between the appointment and work to take some time for me to digest the information. I had to run to work... Work is the major source of my stress these days. The other source is being without community. I found out recently that I haven't been on glue thinking I've been blackballed, it was confirmed that I actually have been.

When I shared it with a supportive person they said "and you called them 'friends'". Yes, I'm learning just because you love people and call them your friends doesn't mean the sentiment is returned. The years of community building are down the toilet as I continue to get shut out - at least it's to my face now.

That's stressful.

What does it have to do with Truncus Arteriosis. Health, being well, being ill, have a lot to do with community and community building, friendships, loved ones etc. It becomes a safety net, a place to play, love, share, grow. Without that one is virtually isolated, filled with loneliness, no way to play out the stress and of course, no support. I'm not looking for pity. I'm expressing the reality of not being well, not having those supports around that others have. It makes it that much more difficult.

Like for example, I had someone move in the other day and a piece of furniture they needed was in the basement. I couldn't lift it. There's no family to call, no "community". It's extremely hard living with tight limits and being without tribe. Extremely hard.

And so I, let's get back to the stress that my dr. Cardio man wants to see lifted in my life. That recent trip to the ER, with chest pains etc. - that same trip that I was accused of manipulating - was a concern for Dr. Cardio man. To him this is all serious. Stress can kill- I know that, commercials tell us that, most people know that, yet some medics think they know everything because they work in medicine for 2 decades. I encourage any who even thinks for one second I use my health to milk support to spend 10 minutes with my Dr. Cardio man - an actual doctor, a man who's spent his life dealing with cardiac patients. Not some judgemental folks who have nothing better to do than judge me for what they do no understand. Just 10 minutes.... that's all I ask!!

Yes, I am angry. I am angry that others who are healthy enough to not understand, judge. Judge me, my need and desire to have a tribe, to experience that sense of belonging that others so freely get, to experience that sense of living without limits that most people take for granted. I don't think I'd be questioned as much if I was in a wheelchair or walked with crutches everywhere - in fact, people might actually be politically correct and try to avoid judging or challenge themselves on issues of dis/ability.
But I have limits and needs. My limits are real and I can't do everything alone.

In fact, dr. Cardio man has told me that my health is not stable enough for a transatlantic trip. He does not approve of my trip to Israel. It's a good thing I didn't buy my ticket even though I now have a rough idea of my trip. I'm very sad and disappointed. And confused.

On the one hand I'm being told I'm not stable enough right now - these episodes are taken seriously yes, but. On the other hand I'm told to put the trip off until I'm more stable. However, I'm also being told that time is limited. It's been almost 2 years since I started counting full moons (since I was admitted to the heart-hospital). I am astouned where I"m at today. I appear healhty, and yes, I can work full time agian, walk without that cane, have less edema etc. but the Dx hasn't changed. I am still declining. I still have more and more limitations imposed on me but now with less and less support. I continue to ask questions. There are no clear answers. He only continues to tell me that "I'm a pioneer and they don't know" but that my recent trips (to the ER) tell a lot.

So, I could go (to Israel) and take a big risk. At least if I die, it will be in Israel - I could be buried in my spiritual homeland. If I don't go and wait, I keep declining and may never be stable enough to live out my bucket list.

Or I could go, and nothing could happen. It's a really big risk... risks like this that "normal" people don't have to weigh.