Happy New Year! a date which in September I did not think I would see. Life is changed (but not ended- as it says in the BCP) – oxygen is my friend. I use varying amounts depending on activities. 8 for showering – 3 for sitting around – and in between for other things. I now have small bench for the shower – so am using a lot less energy for that activity. I have a wheelchair for longer distances. It is great for “walks” or as a friend says “rolls.” When it is warmer there are lots of paved paths around the area. Accessibility is something I know notice (yeah- always takes experiencing for me to really “get” it). I have a handicap car hang tag for parking near places I need to visit.
Things I have had to learn:
I knew this was an “able” culture but know I really know what that means (no big surprise for many of my friends). Though my wheelchair drivers can plow the way through with me some days! Watch out feet.
To stop wondering if people seeing me on oxygen are thinking “oh she was a smoker – poor thing but she should have known.” I often want to jump up in public and yell– I never smoked! Anything! Partly it is pay back for my judgmental days and partly it is only in my mind – and partly they are thinking that.
To get rid of ego-issues around each sign of increasing inability to run my life and do things. I put off getting a wheel chair for ego reasons and now as people who use them told me I would say – “why did I wait?”
To just let people do everything and ask for things I need – instead of trying to be tough. Some friend said “oh you are like a plant– they feed you, water you, and put you out in the sun” — so I am embracing my plant self. My husband, Jim, makes me his full time project — I feel totally loved. I am glad he still has his shop and iron and wood work though.
The kids and grandkids were here over the days of Christmas. They are amazing and sweet. One comes and goes – each time with “I love you, Grandma.”
I have a great care team now. The nurse practitioner, my primary doctor and my lung doctor are all on top of my case — responsive and take time to listen to me. I think I feel better partly because of their tender care for me. I no longer (unlike with one previous doctor) feel like they will abandon me if they think I am not worth their time. And they communicate with each other!
So back into the fray of life each day. Most of my work is online — EfM mentoring, Communications for our local resistance group (Indivisible) and a Diocesan Committee: all things I can do without walking about or traveling. If you are feeling hopeless about the current trends in the US – I recommend finding a local Indivisible group – it is great not to feel alone in the struggle and to have a strategy.
The prognosis for IPF is not great –but for now– we keep on keeping on.