I am stunned. The phone call from the MD was a surprise last night: the diagnosis is mycoides fungoides for that persistent rash I've had for years. It has been looking better, not as red, but never getting smaller.
The denial kicked in quick. I've always been in good health, I thought. It can't be right.
And what I can tell from late night net surfing is that MF is a T-cell lymphoma of the skin, not common. It could be worse but it's not curable. And with each thing I read, the symptoms, the photos, the signs, they all kick me in my gut as I realize slowly this might be true.
I am grateful that my husband has insurance. But the what ifs pile up in my head. What if we go over the amount of insurance we have maximum? What if anyone else in my family needs care? What if we go into bankruptcy?
What if it progresses? What if my husband loses his job?
These are the scary places I don't want to go to in my head but the fears overwhelm me. I want to live 30 more years peacefully.
I know am lucky, today, for many things. I have a place to live. I feel good. I love my family. I'm trying to move forward in my career. I want to look forward to the future and live a long life.
And right now, today, I have insurance through my husband's work.
But what of those who don't have health insurance? What happens when you lose care, when you can't pay for care, when you run out of money?
This may happen to me. This could happen to you. This could happen to my daughter. It has happened already to too many.
Because I can't count on my health care system, I see that my illness becomes a personal political statement. I'm just starting this journey, and I don't know where I'm going with it.
All I know is I am ever grateful for each one of you, here on this site and elsewhere, who are working so hard for change in health care.
UPDATE: Just wow. You are so awesome. I'm so verklepmt, with tears down my face and all. Sorry I can't respond to each one of you. Thanks for your thoughts and hugs and posts!