My Mea Culpa

I have to offer a mea culpa. I had no idea the over powering response I'd receive from my april fool's joke. I apologize for the hurt feelings. When I first started receiving responses, I thought the threats to stop reading were counter jokes! I do have a morbid sense of humor, but I'll be sure not to "go there" again.   .    On the flip side, thank you all for caring so much. I have been to the point where I was considering stopping treatment. I was at this point in december. I never announced how seriously I thought about the possibility of a world without me. At some point, that event, those feelings, need to be processed. It's easiest for me to make it into a joke, especially knowing how close I've been, and how close I could come again, to making the decision to limit treatment.       This has brought light to an important issue that I've avoided speaking publicly about, and that's where to draw the line in treatment.   Overwhelmingly society supports the fight the disease full throttle to the end mentality. Anything other than taking this route is considered "giving up.". I'm happy I consider this point "acceptance," and at that point, what else can you do but joke about the situation. Feeling obligated to accept harsh treatments knowing it will cause suffering and may have no results is becoming too much for my body and my psyche. It's become too much for my family to handle. When the stress and suffering of treatment outweighs the benefit and joy it can bring to my life and those I encounter, then I believe the treatment is extraneous, even if it's life saving. I don't think about the possibility of ending up where I was: where not a single organ system works without medication, where I can not complete the simplest task, like showering, without assistance, where every action is so taxing on my body I feel like I could die with any movement.  It's too much to think about and would infringe my enjoyment now.  . But I have had time to decide where I will draw some lines in my treatment and what I will and will not do.   . For example,  I do not ever intend on undergoing a lung transplant. I don't even know if I'd accept another wedge biopsy. I probably won't travel to germany or run all over kingdom come, bankrupting my family, and spending my time and energy focusing on the disease. . I like where I am now. My treatment takes into consideration the life I want to be living and enjoying while still receiving life extending treatment. It minimally disrupts x's schedule and I can still enjoy my family and friends.     The joke was a nasty social experiment but for a moment you all felt how we have dealing with the issue of what is giving up and what is receiving treatment while living what life I have. Anticipatory grieving is a huge part of chronic life threatening diseases, and everyone who has encountered me and enjoyed my company has probably grieved in anticipation of my possible loss.  . As of now, I have plans to continue with photopheresis and active intervention. I have no idea what my prognosis is but I'm happy taking it day by day.