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My scooter helps. I have more freedom and even people - strangers - treat me differently. There must be something about watching somebody walk awkwardly that brings out subconscious ableism. Stiff misaligned bodies and awkward movements, balance issues - made people assume I was in pain even when I wasn't. If I looked serious I was probably tired - it does make you work harder to get around - and/ or concentrating on not falling or had something completely unrelated on my mind.That's sad when you're an articulate, intelligent woman. No wonder you're such a fierce advocate.
Seriously, I hope you find people who are supports, or heck, even accept help from people who are willing. Clearly, that isn't your parents.
As far as I know, just in an acute way with the HAE.Chemgal. Did your tooth abscess cause more profound issues for your health. Dental problems can really affect our health for everyone
And yes, it would be nice if there was a way to measure pain. I find it hard to compare one pain to another as your memory changes over time. When I had my first child I was sure I would never forget the pain. BUt i did. And had another
In current technical usage, for one to state that a feature is deprecated is merely a recommendation against using it.
It goes a bit further than that. Saying that a feature is "deprecated" means they recommend against using it because they are planning to eliminate or replace it in a future version. It's a way to warn you that you may need to change your processes.
One of my closest family was a doctor, I've mentioned it before, my step dad was a school teacher, so was my mom then she owned her own small business, all are educated. My parents "could" afford it if they had wanted to give up anything for their kids. They didn't - that's the truth of it. My half brother had a trust fund from his grandma. I was out on my own at 18 making my way trying to work and pay my rent and manage student loans like everybody else. But I couldn't so I got jobs and got experience until I got into working for a well known polling firm at the ground level. I thought it was beneath my ability then but I am grateful I did it, now. All of this with visible challenges walking (and the prejudices that come with that are as disabling as that), and more fatigue and pain than the average person...increasing with time...and bouts of clinical depression and abusive men coming and going. I got funding to go back to school in my 30s, briefly. I finished a short program in social service work - I was really disappointed my marks weren't high enough to get a scholarship to go further. I did pretty well but going back as a mature student with challenges and no support was pretty rough. It was also an emotionally challenging program (but one of the most informative and life changing, too).It is tricky and hard to quantify decisions. Catastrophic changes in most ways are easier. It’s the slow slide that is tricky
I agree that family understands the issues the best. When I was thinking out loud about an objective person I suppose I was thinking of some one like an ethicist. I also think that income, education, culture....... all those come into play. Both in making decisions to end supportive care and In challenging a doctor. And while family understands the patient best, it does feel that the hospital needs to have a;ethicist type person in the end of life discussions, whose role is to advocate solely for the patient. Recognizing that the advocacy might be towards end of life, not prolonging life
As I glean from your posts, Matthew leads a life with love, laughter, smiles, movies, hockey........ a pretty full if not traditional life. He seems like a lucky young man to have so much supportive family and care givers
And I assume your entire family worries about the future for him when you are no longer able to care for him.
The patient who is unresponsive, Comatose...... they are a tricky spot for family, doctors, hospitals. Often hugely differing opinions of what the future might bring. I don’t remember her name, but a dozen years ago a young woman, comatose. Relatively new hubby said they had discussed no heroic care. Parents of woman disagreed and fought long and hard to keep her on tube feeds. And lost. Those sorts of dilemmas challenge us all
And has Kimmio has pointed out, family can be the exact reverse. Cruel. Selfish, unaware, unsupportive.........