I’ve been struggling with what I will say to the lawyer and my therapist when I tell them that I’m planning to go forward with my trip to the UK.
In the case of my lawyer, his edict is, “Sit and breathe. If you can travel, you can work. So, sit and breathe”.
In the case of my therapist, her challenge was, “You don’t want to work anymore, right?”
I’ve been struggling with the diplomatic answer to both of these situations that’s both truthful, as well as grounded in reality.
In my case, my employer’s health plan WILL pay for a lung transplant, possibly, if I chose to go that route. My doctor has told me to explore a lung transplant as my last remaining option. I choose not to go that route.
– fear of rejection of the transplant
– fear of high costs for anti-rejection medicines after the transplant is done
– fear / belief that I will likely be dead in 3-5 years if I continue as I have been doing regarding treatment choices
– fear / belief that I will likely be dead in 3-5 years if I move forward with a lung transplant. Note – 70% of lung transplant patients are dead by the 5th year following the surgery. A 30% success rate and a high out-of-pocket for medical costs is not my idea of good odds.
In my case, my employer’s health plan WILL NOT pay for stem cell treatment. And, with my doctor’s backing, that’s the route that I feel holds the most promise. Potential cost: $13k, with an unknown number of treatments required, and with an unknown level of after-care medications that I may or may not be able to tolerate.
– confirmation of lots of pain being involved following the surgery
– confirmation that, if the treatment works, it’s worth the pain
– location of a clinical trial, which concludes in 2017, and more information being available for a stem cell treatment if I choose to use my own money to pay for it.
In my case, my employer’s benefit plan has also REFUSED TO PAY MY MATCHING SALARY benefits, stating that I’m not sick “enough”, even though my level of capacity is clearly met by both the state and federal guidelines for this illness. And backed up by the fact that I had 3 car accidents trying to push myself with a regular schedule for a busy, 55 year old woman with this disease.
So, at the end of the day, if I only have 3-5 years of quality of life left (quality of life includes being put on oxygen, or end of life issues), I want to travel. I can be sick anywhere, as long as there is transportation which includes other people getting me here and there and back again (planes, trains and automobiles or buses). I can sleep anywhere, and often do. But, I want to look out my bus window or hotel window and see all the places that I’ve read about and had on my bucket list. I want to share this with my business partner, and I’m willing to take the risk to not get my matching benefits because I know my time is very limited.
The counter argument to all of this, though, is this: If my employer paid my matching salary benefits as promised (roughly $60k per year), I would do BOTH.
I would book that trip to go and see the UK and do the trip that I’ve promised myself to do following my Australia adventure, AND I would use my matching salary benefits to pay for the stem cell treatment (presuming that it’s approved for me), and go back to work if I were then well enough to do so.
55 is way too young to retire (which is what Disability is, in effect).
55 is way too young to give up on dreams and aspirations, and simply sit and breathe when one’s body is still able to do more than that.
But, as I sit here packing to move, while also dealing with time-specific nonsense from my landlord, I am reminded that I can do anything as long as I can nap.
Naps helped me hide how ill I was my during last year of working, as I let the house go in terms of cleanliness and clutter, and just concentrated on putting one foot in front of the other to get through my work obligations.
But, after the car accidents, it was clear that naps were no longer sufficient and that something had to give.
Am I regretful that I’m living on a pittance and unable to work to earn more money without jeopardizing that pittance? YES. A thousand times yes !
But, I’m also a realist. If I can’t keep up, and I worked to earn these benefits, it’s up to me to secure them so that I don’t end up homeless because I lied to myself about my capabilities. Anyone can be sick on vacation and come home to their lives as they left them. Or, to their funeral if they get sick enough.
But, if one has a chronic illness that jeopardizes one’s financial security, one would be a fool to risk working (and hurting others through misjudging their capabilities or capacity to endure the requirements to be delivered) if that meant that one might end up fired, and then homeless and poverty stricken.
No answers here, but that’s the best I’ve been able to do to elucidate my viewpoint on why I’m picking the priorities I’m choosing. Travel first (eat desert first), and then use the rest of any savings I may have to pay for the stem cell treatment if it looks like a match for my health situation. Priorities. Priorities. We all make different choices. Those are mine.