Today I went to A Pulmonary Fibrosis Support group .
I started looking a couple of months ago, and I even sent out a few emails. When the invite came into my mailbox, it would have been easy to ignore, but someone contacted me via email as well. They had my information from my inquiry.
Why was I hesitant about going? I know I wanted more information and we as humans crave to find others who are like us and understand. I can get by right now. I have oxygen when I am at home sleeping or doing heavy duty stuff, and also when I exercise. Knowing my history I know it does not take much to put me into the must go to the doctor right away or things can get bad,” stage. Still, right now I’m maintaining, and because I am, it is easier to ignore the situation. Maybe I’m in denial, and maybe I just don’t want to think about it. I don’t know. I was so relieved to stop going to the doctor or some test every other week, and I pretty much decided that even though the pulmonologist wanted me to have a lung biopsy, I was not sure I wanted to go in that direction. If they do it and cannot detect why I have ILD they will label it as idiopathic, stick this label on me with the intention of a 3-5 year lifespan. I’m not sure I want that in my chart, and I know I don’t want that message to be in my mind. When that one doctor told me it could be idiopathic back in January, it played havoc with my head. Me, who has that positive outlook, is always trying to find the bright side, medicates and believe, and knows miracles are great, I began to doubt. I was amazed at how much energy I was spending trying not to accept this 3-5 year outcome. The doctor who told me that without testing should have been slapped aside the head.
I didn’t want to go because I thought, But what if all the people there were really sick. I keep telling myself I’m not my illness. I’m focusing on the life journey and coming to the acceptance that whatever God has in store for me, I’ll be ok. and blessed.
It was a pretty large group of about 30 something people there today. They were in various stages. Some were new like me; many were on oxygen, some had lung transplants, some were waiting for a transplant and others didn’t qualify for a transplant because of age. There was talk about deaths of others, and a card was being passed around.
I wondered if I was in the right place, being that this was a pulmonary fibrosis meeting and I had interstitial lung disease. I’m learning, according to this website “Interstitial lung disease (ILD) is not a lung disease itself but a group of several lung conditions…”
I looked around the room, and I did feel like I was one of the youngest people there. People introduced themselves and told about their story. I wondered if I would cry when they got to me. There were many wives of husbands and husbands of wives who had the illness or caregivers. This made me feel somewhat alone. But in all honesty, whatever we go through, we are in our bodies and alone. The caregivers talked about how hard it was to see their loved one go through it. I thought about my daughter.
I told my story and heard the reaction to some of my comments. One man said, “My story is your story, I don’t even need to say mine now.” He is on the transplant list. “Maybe I’m in denial,” I flippantly say to an immediate round of murmurs of agreement as if this is one of the obvious symptoms of lung disease. I tell them of my recent infuriation with my doctor and the talk of the oxygen. One man later states, “I have never seen someone sent home with oxygen and lung disease that has gotten off of it. ” I think, is this meant to comfort me? Though I’m so totally fine with the oxygen, in fact, I’m more than fine. Having it means I am not causing damage to my other organs, I have an option if I feel short of breath and I can do more. I feel ignorant to so many things, things that are so important to my body. I hear people talk about the number of drugs they are taking and I wonder, will that be me? I don’t want to take pills. I tell everyone about being a public figure and fearing that wind of my illness will keep me from getting work. I share my dilemma of wanting to stay, and I’m glad that the facilitator mentions anonymity at the beginning of the meeting. Later someone recognized me and told me that they have seen and spoken to me at one of the gatherings for my art.
There are two young women, well they are more my age. I later find out one is older than me. Both are not on oxygen. I do not wear my oxygen in the room, though a few times I felt I could have used it. It sits in the backpack next to me. I don’t put it on because I know I wear my oxygen backward. I put the cord behind my head instead of under my chin. I explain this in another post. I’m afraid they will think I’m crazy for doing this. Hey, maybe I’m a trendsetter. I talk to each of these women after the meeting and give them my business card so they can call me. I wish I would have gotten theirs. Maybe, I think, Maybe I am the one that needs a comrade.
I came home with the material, and am glad that the speaker who was going to speak on Medicare or Medicaid or something like, that she could not come. This type of meeting was best for me right now. Just another reason to be thankful.
I’m sure the group will be beneficial in the future. I’m glad I went. Like the club of people who have lost their parents to death, the pulmonology club is one I wish I didn’t have to belong to, but as I’m always looking for things to be grateful for, I’m thankful that these people are on my journey.
May God bring to you those who enlighten and lighten your journey.
Psuche