Yesterday was one of the most tiring days I can remember having in a while - despite most of the day being spent laying down. I didn't really sleep until I was just too exhausted to stay awake anymore. Today my head has been pounding and I've been feeling flushed and tired. I probably should have stayed home, but was worried about being bored.
Even today I am still just so tired. My vision is fuzzy because my eyes are tired. I have such a comfortable set-up in the bedroom right now, so that's great.
Using my arm (on the side where the port is) is a little tricky - I can't lift more than 10 pounds for a week, and even doing things like reaching up and opening doors is a little painful. I have things I'd like to do, but I can't right now because of physical limitations. It's very frustrating to feel so useless. I know it's not my fault - I'm realistic about that but it's annoying.
I'm working on some pretty serious prospects for lung cancer awareness and advocacy here in Cleveland. I hope that what I'm able to accomplish will make waves through the community and touch a lot of lives. I have some meetings to attend (via phone) with both local and some national interests to see how we can work together. Though I know my personal involvement will be very tiny in the scheme of things, I feel very happy to know that I am trying to make a difference and I'm going to be educating people. I hope that the community rallies around the cause and gets a better understanding of the hard fight that is lung cancer.
I don't remember if I said this yesterday or not but the show Gold Rush is so, so bad. How the main guy hasn't disappeared - buried under feet of permafrost is beyond me. I cannot. Tear. Away. My sides hurt.
The company that provided my oxygen last year claims they've tried to reach me for weeks and has sent me a bill for 5500 dollars for products I have not needed to use in months. At one point they sent a man to intimidate me to keep the oxygen, saying that if I refused it that my oncologist would be unlikely to prescribe me oxygen again if I needed it - since I was basically going against their orders.
I didn't buy their bullshit, but I bet a lot of people do - and that scares me. The things that healthcare providers tell you are NOT absolute. You can and you should ask questions, and you do not have to agree with the things they ask you to do or suggest you do. When you're being asked to take a drug, have a procedure or a change in your treatment you really need to know what it is you're doing and WHY.
I didn't buy their bullshit, but I bet a lot of people do - and that scares me. The things that healthcare providers tell you are NOT absolute. You can and you should ask questions, and you do not have to agree with the things they ask you to do or suggest you do. When you're being asked to take a drug, have a procedure or a change in your treatment you really need to know what it is you're doing and WHY.
The good news is that they're coming to get their machinery and tanks. I will never use that company again. Hopefully I never need supplemental oxygen again but I know who I'm NOT using if I do.
I had an ER doctor tell me that my lung disease had spread extensively and that there was no shame in considering hospice at this point (in November). I've never really wished to hit someone in earnest before that day - I sort of hope I never see her again, because she will (at the very least) get an earful from me.
Another tangent? The new tattoo looks so good.
This post got a little random, my mental fatigue is showing. Tomorrow is another day!
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