As you see by a previous post, I have gone to my first pulmonary support group. I joined the Pulmonary Fibrosis Foundation and followed them on Instagram. Not sure that has been a good thing. This past week I felt very weepy and confused. I may need to navigate the possibility of not having income. Here I was at the top of my game, able to bring in a ton of work, doing the most significant and recognizable commission of my life and this tries to strike me down. This is not where I thought I would be. I pictured myself paying off my mortgage, and school loans and buying property and instead, I’m trying to pay last years taxes, recovering from a loss of income from a tremendous job when a vendor went under and trying to pay off medical bills from the hospital visit last year when I had such poor insurance.
Am I depressed or just overwhelmed? I hear I can’t get disability insurance for two years from signing up for it. I’ll have to pay for my insurance. Do I need it? When will I know I need it? How quickly will this take me down? Will it take me down, from all websites it looks like that is inevitable. What is my next step? Why did everyone warn me against getting a lung biopsy at the last meeting? What are my options? How and when do I apply for a lung transplant? What other options are available to me?
When searching for these answers, I discovered I could get some of them answered through a social worker. I’m assuming I can do that through the hospital where my doctor is, if not definitely if I go to pulmonary rehab at a hospital. Pulmonary rehab is next on my radar, but I have to figure out how to afford it. Twice a week for six weeks and it is $75 a visit is out of my budget.
I have so many questions; I feel so alone. Sometimes you want to be able to talk to someone about dying. Friends and family don’t want to do that. They want to talk about hope and belief, and I’m okay with that, but I also need to look death in the face and talk about the feeling surrounding it.
I emailed the support group back and asked them if they knew of any counselors or individuals that dealt specifically with this. They said, though they were not professional counselors there was one woman in the group who would like to help people one on one. So my new friend (F) and I met up for breakfast.
She let me tell my story and then told me hers. She has been diagnosed with Idiopathic Pulmonary Fibrosis. I know that idiopathic is a word added with a death sentence. 3-5 years is the norm, and it looms over my head until the doctors can figure out some other reason. One who lives with that is pushed through the system; You can get moved up on approval for disability if you have this diagnosis. My new friend has it. However, she was diagnosed six years ago and is not on oxygen.
I left our meeting with some questions answered, a friend and more questions. I suppose the uncertainty will walk with me on this journey a constant companion.
Psuche