Friday, May 24, 2013

transplant testing?

I know folks have been wondering about my transplant options. Where we left off was waiting for testing. I had the initial intake with TO and I was to move to the next step: testing to see if I really could withstand an heart and lung transplant. I was told to wait until I heard from them - also because I do not have any numbers to the TO team. They were not given to me and since I am not in their system yet, I do not exist to them, yet.
I've waited a month to find out about testing. In the meantime I started composing an email with my multitude of questions to my cardio np to see if she could bridge me to answers. I did not send it. I have been hesitant all month, wondering how on earth am I going to do this even if the answer comes back that I am able to go through this. Their initial comments were that I was an "ideal" candidate, in that I 'passed' the first stage on the way to getting listed. The next step requires more testing and acquiring what they call a support person. They will not list you if you do not have said person. That means that that person (or persons) must live with you, or you with them in To. The support person is integral to the transplant because as I read in the manual, they do everything for you that you can't do for yourself. It includes but is not limited to taking you 3 times a week pre-transplant to physio, making sure you eat, making sure that all the meds are taken, filling out numerous ongoing forms, etc. etc. There is so much work that the support person needs to do that it becomes almost a full-time job. That's why most times it's a spouse or a parent (if possible) or even a child. I did find out that the support person doesn't have to be the same person. It can be a few people on a transplant person's team but only one person can be the main contact at one time. Meaning, one person can take a one month "shift" then the next person can take the next one and on. This is relevant because in the month of reflecting on this process I came to discover that my very own wife who took a vow of "in sickness and in health" will not, isn't able to, be that support person.
At first I felt the peaceful acceptance that working a spiritual program gives one. I started thinking about people I know in TO, and the one aunt I have there. In the end, there is no one. My emails to my aunt have gone unanswered (the only means of communication I have with her) and though I have friends there, everyone has a full-time life. No one else vowed what ma belle vowed so I wouldn't dare ask anyone else anyway.
By the way, that spiritual acceptance I once felt, that has drifted. It's hard to accept that my own spouse isn't able to be that person. I realize that's a lot to ask from anyone, and it's not okay to assume it should be your own spouse, but we do that (as a society) and I do that. I'm doing that. I have to figure out another way to one, not do that, and two, find others if I am to go down this road.

Monday, May 13, 2013

the car is gone

I sold my Honda today. I was going to write vehicle, but anyone who knows me, knows that I only drive Hondas, and hatchbacks at that. I have driven, owned or co-owned at least 5 Honda Civics in my life. It's strange to not own a car and it hasn't even been 24 hours. I'm not sure if I posted that my licence was revoked about a month ago. No one took it away when I was in the hospital. It only came up when I needed my Dr. Lady to fill out my Long Term Disability forms and that question was on it. I could tell it was not a pleasure for her to do it as she looked at me and said that now that she's facing that question, by law she has to do it, then promptly apologized.

Losing my licence wasn't as hard as selling my car. I can't drive now anyway. I don't trust myself. But not seeing my hatchback in the driveway anymore: that sucks. Ma belle would still use my car to pick up bigger things like bags of manure. It's so much easier to throw stuff in a hatch than in a trunk. She thinks differently and that's fine because she is after all, the one doing the lugging.

Anyway, it's gone :( I'm sad. I'm more sad that it's gone than losing my licence. I heart honda hatchbacks.

Tuesday, May 7, 2013

serenity garden I

So my backyard postage stamp serenity garden is not moving along as planned. I over did it this weekend. Creative juices flowing, wanting to see loved ones, cooking, baking... it was all just too much. So yesterday was a big right-off where the most productive thing I did was sit in the back yard for 10 minutes directing ma belle on where to put the plant donations (we did receive some hostas, day lilies etc. from a friend who has a few acres of land). We haven't even begun to plant, never mind turn and fertilize the earth. However we had to put the plants in something (a bucket, plastic etc.) so the roots wouldn't dry out.
There you have it, a full day minus 10 minutes of sitting, watching bad television, reading, but mostly just laying about in pain and fatigue.
I know better to draw limits when I'm with folks. It's challenging when you also miss and love them and miss and love riveting conversations. Two of my favourite colleagues were also by this weekend and one of them I would spend as much time with as my very own wife. Of course I miss her. Of course our conversations are stimulating, we're in the same field, we are similar types of feminist counsellors.
Anyway, my backyard is still a mud pile and that's ok. I'm not in a rush though our growing season is so short. Mother's day is coming and that's my priority: I finished a lap quilt top for my mom years ago, it would be nice to actually finish the quilt so she can finally have it.
I'm feeling a bit better today but will pace myself so that I don't lose out on the remainder of the week. Besides, my pain has not yet disappeared.

Wednesday, May 1, 2013

How to enjoy summer in the city while on a leash

With spring arriving in these parts of the country I feel a new surge of energy that I didn't have the luxury to experience in winter. Some days I'm pretty successful at fooling myself that I'm palliative. Though I don't have the physical energy I once had, my brain hasn't stopped working. It's full of ideas, springtime ideas bursting with creativity and life.
I've taken to the outdoors though my oxygen tubing won't necessarily allow it. I say necessarily because I can barely leave my front door to look at all the pretty flowers starting to peak through the ground. My tulips are even opening up. I have only one foot of leash on the front stoop. That's where all of our garden is, since we have no backyard (we're on a corner lot) and the front yard is south facing anyway.
The other day I realized that I get something like 9 feet of tubing in the back. Seeing at the back yard is only 8 feet wide, it means I can move about. Most of our back is cement (patio) but a few feet from the door (within reach) is a small 8 by 8 section of mud. It's located where the sun don't shine. Literally. It's the north side of the house so nothing will grow there. I have a super friends and a helpful mom who have all informed me what I can plant in that section. My newest project is to build and grow a shade garden sanctuary where I can still enjoy the loveliness of the outdoors without burning in the heat and humidity of this valley. I am so pleased. Unfortunately there's next to no privacy. Being that small means we're right next to our neighbours (who aren't very congenial) and it's a chain link fence, meaning they can see me, I can see them. What do I have to hide really? They can't deal with the illness in their face, they can go inside!
So here we go, I intend to keep living until I'm not. I have lofty plans and goals for my time at home (I've come to call it retirement) by I don't care. If I'm not doing this dying thing properly, I can do it again in another lifetime (if such thing exists) since we ALL do it, guaranteed.

Last night we already put up our wind chimes, took out a small table. I found my favourite outdoor (plastic) table covering. As the beautiful weather unfolds, hostas, ferns, bleeding hearts, monk's hood will be planted. I may even hang some prayer flags and even a back bird feeder. I'll welcome the entertainment. I'm not sure how much I will actually be out there as I still love my sewing time but I hope to be there at least once a day when it's not raining.

Leash be damned.

As I "do" all of this (ok, my spouse mainly) I am reminded not only of Treya Williams-Kilber but of another beautiful spirit acquaintance, Janet, and countless others who've squished every drop of life out of "what's left". I may be departing, we all are, but I don't have to lie in bed waiting for the angel of death to come take me. I am still here. I may not know why but I'm surely not going to waste what's left. There was a reason my DNR was not with me when they gave me atropine in the ER that night. I've had many second, third, fourth, fifth and so on, chances in my life. This I know is my last and it's going to be good, sweet, succulent and full of love.

Now, if you don't mind, I have freshly baked brownies waiting.