Tuesday, January 28, 2014

Designer Drug #2 - Fail!

Wouldn't you know it, the 2nd designer drug I was prescribed with was a fail on the highest scales.
I received it a few days after my last post, started taking it and within 30ish hours side effects started. At first they were tolerable so it almost went unnoticed, until the day I couldn't walk. By the third day/third dose I was in so much thigh and lower back pain that I just couldn't walk. I also couldn't sleep on the third and fourth nights due to the excruciating pain. I have experienced major abdominal surgery without narcotics (other pain killers though) so I know what I can tolerate and what I cannot. Those nights were unbearable, especially considering the fact that it was simply drug-side effects.
Anyway all this to say, I am off of them, and will not be going back on them for all the money in the world.

I wonder if there are any other pulmonary hypertension drugs left for me? I really want to go back to work but can't while sporting lovely tubing across my face. The transference that would cause (in my specific field) would get in the way of any therapeutic good that could come of it.

Friday, January 10, 2014

Pulmonary Hypertension follow-up.

Just a quick post today.
I just came back from the lung doctor. He wants to put me on additional medication. From past experience I know PH meds can be quite expensive. The one I'm currently on costs about $4000 a month (give or take $5). I told him my concern wasn't physical side effects but the monetary side effect. He assured me they are cheaper than the one I'm currently on (which I will remain on). I Googled them and wouldn't you know, they are cheaper, by $100. So in a month from now my monthly drug costs will go from about $4100 (other meds I'm on) to $8000. Lovely. Even with 80% coverage on my spouse's plan, 20% of $8000 a month is a lot of money for a one-income family.

I always joked that I had expensive taste.... designer drugs are not the kind of expensive taste I meant.

I really want to get back to work. I'm not sure I will be able to - I am coming to understand just how "pie-in-the-sky" that goal is. Though I won't give up just yet.

Wednesday, January 1, 2014

New year, new life

So here it is 2014. I'm still alive and breathing well. As I work on rehabilitating myself I find myself out in the world at an increasingly exponential rate. I love life and fought so hard to live. There are aspects to life I just don't enjoy and those are things like the rat race, rushing, over scheduling and cranky people. Those are a heck of a lot of folks that one encounters randomly. I was fortunate this past year to surround myself with loving beautiful people. I realize there are many more of these folks in existence, I just have to find them.

In re-entering the living world, I don't so much fear these things as fear that I will lose all that I have gained: an appreciation for the truth in life. Love. Simplicity. Time. Relationships. Quality. Mindfulness. As I took down my mindfulness 2013 calendar called "the Present Moment" I feared losing moments, mindfulness. So me, being me, started looking up articles on simplifying life. A spiritual friend had many of these types of articles on her FB page throughout the year so I decided to start there. As I read through the second of such articles I realized that I don't need someone else to tell me how to simplify my life. I could teach people how to do it. My number one piece of advice would be to stay out of malls (and stay away from store fliers). We spend the bulk of our time shopping/buying things we think we need or that will makes us happy. Having been a shut-in for practically all of 2013 I learned that lesson the slow way. We don't need ninety percent of what we think we need. We only want the new fridge, the new car, the new clothing, the bigger television, etc. We all know too well that things won't buy happiness but we find ourselves wasting precious creative time roaming malls in search of the newest best deals anyway.

This year I changed how I ate, drastically. I always thought that being vegetarian meant I was fairly healthy and compared to the typical American diet, I am. However when I say drastic, I mean it: practically everything was made from scratch, including my own salad dressing. Most of it out of necessity because I can't eat sodium-laden commercial foods. Some of it because I had the time. Since I wasn't roaming malls, I had time to make nutritious, delicious, and because it was from scratch, fairly affordable food. Now, returning to the rat race, I understand not every dish can be prepared that way. Especially if I am well enough to return to work (my eventual goal). I understand why frozen food exists - working families just don't have the time. However, how much time do people spend roaming around malls, their favourite stores and other places of capitalism? Now, couldn't that time be better spent cooking something deliciously nutritious? Why not?

The second part of cooking from scratch was sharing it with loved ones. There's a reason families used to sit down to meals. That's the reason I insisted on keeping the "seats 12" dining table when we were splitting furniture during my divorce. I actually use it.

Being out and about the past few weeks, whether returning home from the Heart hospital or groceries with ma belle, we would stop at shops I haven't been to in over a year. I could understand the draw to spend (waste) time in stores... there's so much to look at and even take home but I don't need any of it. How do I know: I have lived just fine without it thus far. Now, I am not trying to preach non-consumerism here. I did purchase a few things throughout the year. Online shopping is convenient where you're a shut-in. So is having a wife that can go get things. My purchases have been mainly for raw materials (be it ingredients for a food dish, fabric or yarn to make something, dirt and plants to create a space, etc.). I am not against all purchasing but I know for me that was THE leak of time, energy and money in my life. If you need more of those, get out of the stores, malls, fliers, and start spending time with people you love, especially around a table full of home-made food.

For 2014 my goal is to live balance. It seems balance has been my lifetime goal. As a Pisces it has always been a challenge for me. May the year of mindfulness, deep spirituality and deepening quality relationships move forward as I return to the world of mindlessness.