Not the greatest day today (Saturday). Started off hearing we lost another woman with LAM who was waiting for a transplant.
I knew her, met her at my first LAMposium (I’ve been to two so far. It’s an annual conference where we we all get together & have different educational sessions about research but then other topics that are important us like dealing with chest pain for example). She was so sweet. I liked her immediately.
I was really hoping to see Flavia this past March in Chicago, but I know why she did not attend. She was waiting for a transplant.
She died waiting (in Brazil). She didn’t get one. It doesn’t happen as often as it used to (prior to our treatment). But when it does & to someone you’ve known both online and in life it’s a lot to take in. It’s reality though. Not everyone gets their second chance.
We had a remembrance room at LAMposium this year, to pay tribute to our fallen sisters. I saw all the names up there, including two of my good friends…but also the names of women I knew over time but maybe not as well as I knew others. Well, I stopped counting after 14; it was too painful to continue.
I was feeling ok today after putting the heart cath behind me. A little sore at the end of the day. Probably because I overdid it. About got my butt kicked for doing so, & understandably so. I was misbehaving.
It was hard though. I think I did this overhaul on my room today to try & cope. Because when asked the other day how my quality of life was on a scale from 1 to 10 I had to stop & think before I answered. Today was one of these days when I saw just how far the disease gets ahead of me some days. Things that need to be taken care of fallen by wayside for too long. Admitting to problems that I know other older women with end-stage lung disease have had is painful. Part of it is that last bit of stubborness to try & still do something.
I have that hoarding gene to a degree, I’ll admit. I cleared out a bunch of things that while they mean something, I can’t keep. I pared down to what I felt is a bare minimum of what I really need & can manage to take care of. Only because I know I will have more problems if I can’t keep things manageable if I should get sicker. Too much clutter is like too much heaviness at 3AM or too much anxiety – it weighs you down. Yet it’s hard to part with some stuff, there’s a lot of memories. But I still have those memories, even if I don’t have the stuff.
I pushed and still push stupidly some days because there are times I really don’t want to accept it’s come to this. When I had to rate my quality of life at the evaluation I said 6 only because I try & remain positive despite the circumstances. I was being generous because I always look for ways to adapt as things change.
But when I evaluated today it felt lower because I think everything I went through recently just hit harder with Flavia’s death.
Knowing she died waiting. I have to process that in spurts. I think that’s why I kept busy today, on purpose. I didn’t want to cry over something I can’t change the reality of.
There comes a time when the adapting is harder to come by. It takes so much energy to keep up even with small stuff at this level some days. Yet I continue to try because I refuse to accept defeat & I refuse to lose my independence if I can still help it.
It was stupid of me today though, because I should have been resting, I’ll give you that. But I was just too restless. Too mad at myself that there’s nothing else to fight back with. Nothing more that I have uncovered or can do for me for Flavia for anyone with all my past research reviews & everything I keep my eyes peeled for in both of my diseases. (It’s not any easier when it happens in the TSC community either & I’ve known a few who have passed from that too). This (transplant) is the last life preserver, at least in my case. The reality of that is something I acknowledge but try to avoid obsessing about.
I didn’t really mention what happened to her today to anyone outside of writing this & reminiscing with some other sisters. I’ve gotten sick & tired of talking about the ugly side of this disease to anyone, period. It’s not that I’m afraid to, it’s that I don’t want to right now. There’s a difference.
I’m not depressed. Just sad today. With anything in life, we all have our ups and downs with it while we try and adjust to a change. Some days, it just seems to get the better of us temporarily. That’s ok though.
The pollyanna rose-colored glasses don’t always fit & don’t always help. I’ve always kind of hated them. I like the run-of-the-mill ones. You always see clearly, even if they aren’t the “prettiest” set of frames. A clear vision is what matters in the end anyway when one has their eyes on something.
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