Friday, December 5, 2014

Strange Days

It's a strange thing when what you have been trying to avoid most for 8 years becomes the future you must face. First there's a time of relief.  Everything you have done to prevent something from happening ultimately did not work. Huge sense of relief comes with that knowledge. You are no longer trying to hold back the sea. No longer looking for minor positives in the most mundane of medical test results. This fight is over. Relief.

I very much wanted to be one of the ones with my disease that are able to find stable enough ground to just keep going. But my heart seems to be set against this. It just does not want to get smaller. So now it's time for a drastic change.

Thankfully, the bulk of my testing is done for now. There will always be more tests, more pills, but no more big hurtles right now. For this I am grateful. I recently went through a short period of panicking at the thought of being touched. Too many painful intrusions from the medical community I guess. Unfortunately, it translated to freaking out at the thought of someone hugging me or coming into my personal space. I could have almost kept this to myself and my beloved caregivers, but my birthday fell right in the middle of this embarrassment. I didn't follow up with any of my friends to see if they were still coming. If I had talked to them, I probably would have shied them away. I almost didn't show up. But my beloved small group of friends are...I can't even think of the right description right now, but trying to makes me smile. Adventurous, spontaneous, extremely giving, loyal and at times totally forgetful. Which is why they were not there. It makes me happy just knowing that they are in the world just being themselves, doing all that they do.

Now I am trying to plan for a future that I am not sure exists. Legal papers, house repairs, house updates. Lung transplant for a pulmonary hypertension patient is a little tricky. All of my blood vessels are under more pressure, so I am fast to bleed. They will also have me on large doses of anti clotting solution. Then there's the right side of my heart. It's 3 times too big and pumping hard. When my lungs are replaced and the pressure is relieved from my heart, it will keep trying to pump at the same rate. Way to hard and fast for healthy lungs. It's supposed to take a couple of weeks for it to stop trying to compensate. The walls of the right chamber have also thickened up to be able to keep up with my body's needs. Right now I am still okay, but if getting the lungs get drawn out too long then I may have to also have a heart transplant. But we are not there yet. Please give me time to take care of what I need to, but please make this over with soon.

I think about swimming a lot these days. Floating on water. I daydream that there is a pool in our backyard. Nothing deeper than 4 feet. Just big enough to do a handstand in the middle without hitting the edges when my legs come down. A semi circle bench and then a small waterfall in the middle of the seating on one end. Not the huge kind with water going just over the rocks. More like a short waterfall shower so that I can sit on the bench in the pool and have water pour over my head. Salt water pool. In my favorite daydream there is no chlorine smell. Just the sound and feel of water surrounding me and pouring down on me. This is the image and feel that my mind takes me to when I try too hard to think of other things that I cannot change. One more thing I am thankful for.

1 comment:

  1. Beautiful. My sister sent me to your site and I love your writing.