We left the house at 6 AM. The "waning gibbous moon" had not yet set. (I had to look up what you call a moon that was full two days ago, but now has a tiny nip taken out of it. ) The air was cool and pleasant. We saw only a few people out and about.
We were on our way to the lab for a test I have to get three times a year to see if the powerful medication I take for idiopathic pulmonary fibrosis (IPF) is leaving my liver alone. Liver damage is just one of the possible side effects of this miracle drug. Only one other patient was ahead of me. I was in and out in no time.
IPF makes you cough. I am glad I didn't cough in the waiting room or during the blood draw. People would have thought I had Covid for sure and I would have gotten dirty looks, even though I was wearing a mask.
Sunday was my 81st birthday. Our daughters came over and brought dinner, most of which I couldn't eat. My appetite is still a distant memory. "No appetite" is another side effect of my medication. I have become a skeleton. I don't know whether to get clothes that fit (size 4 as opposed to my normal size 8) or to keep on hoping and trying to regain some weight.
I confessed to my daughters that I am guilty of what I call "IPF Kabuki." I frequently act as if I am worse off than I really am, if only to make sure that everyone knows I need to be taken care of. I still have not accepted the fact that I have this disease and that limits have been imposed on my life, against my will. I realize that every person on earth is subject to limits, and that I am hardly alone in this. Still, there is something about chronic illness with a stated life-expectancy of "3-5 years after diagnosis" that dims your hopes.
That said, from what I read on line, I don't seem to be that bad off. I may be wrong, but I suspect I could be doing more. Instead, I have been lolling around, having my kind-hearted spouse bring me this and that and do more than his share around the house. Meanwhile, I have stopped doing all of the things that are supposed to be helpful in my situation. No exercise for over a month. Not pushing myself to eat more. Not doing any breathing exercises. I am pouting, I guess. I am just so angry and so unaccepting of what has happened to me. I need to grow up.
Personally I think you have a right to pout if you want to. We all do from time to time. I've never heard of this disease. I'm so sorry that you have to deal with it.
ReplyDeleteI know what you mean about coughing in public. You get the nasty stares from people.
Thank you, Ann. I know you understand.
DeleteCongratulations on your 81st. Don't be too hard on yourself. You can only do what you do, but it is good to try a bit at least.
ReplyDeleteThank you, Andrew. I know you are right.
DeleteI fell off the health wagon, but I'm getting back on. Enjoy your 81st birthday.
ReplyDeleteCoffee is on and stay safe
I'm getting back on, too. That makes two of us!
DeleteI hope you have an attitude adjustment soon. And buy some clothes that fit. You'll feel better. :)
ReplyDeleteI think that just ranting a bit helped me see things more clearly. It's up to me. Not sure I'm ready to buy "skinny" clothes at this point. I'm a skinny skinflint. We'll see.
DeleteOr, maybe, you need to cut yourself a little slack. I'm so sorry for your diagnosis. You're allowed to feel it.
ReplyDeleteHappy birthday.
So, um, I hear a certain drug that you smoke that's getting legalized in various states has a side effect of making you hungry. In case you were looking for something to stimulate your appetite...
Neither pulmonologist nor primary care provider approved of my trying a certain drug. Tried it anyway. Didn't work. Tried some other appetite stimulants they suggested. Those didn't work either. I'm thinking more exercise and less obsessing might work. Thank you for your kind words.
DeleteI agree with other commenters who recommend cutting yourself a little slack. Getting a serious diagnosis and having limits put on you is a heavy thing to adjust to. Please be kind to yourself. And, of course, there is the pandemic on top of it. I hear the "skinflint" part (I wear outfits for years, myself) but I think you might feel better with perhaps one or two outfits in your current size. See what it does for you, and go from there. Exercise, with exercises your lung doctor approves, may be another mood pick me up. Your blogging friends are pulling for you.
ReplyDeleteThank you, Alana. I know I need to cut myself some slack and I will do it. I think I'll buy an outfit or two in my new size, even though it might look as if I am accepting a new status quo.
DeleteGod bless you
ReplyDeleteYou don't have to feel any different. You can be or do what you want. We all love you to pieces. You are very courageous even if you don't feel like it, and always an inspiration. I am so blessed that you are my mother. What a mother, what a human being, what an advocate, what a talent. Brilliance.
ReplyDeleteThan you, Sweet One. I will try very hard to do the best I can with the cards I have been dealt.
DeletePersonally I think you have a right to pout if you want to.
ReplyDeleteThank you.
Delete