It is the true teacher who leaves the class knowing they have learned the most.
Tucson, AZ
Joined September 2006
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It passes by, a wink, a sty, a pain, digust, body wrongleess, ender erronus. And we appllaud.
Are we the top of the food chain? Greed pays.
Love annihiltaes.
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New day, new page (for my book, quite literally!) and more optimistic thanks to human kindness. I - we - all have to remember kindness exists and I for one will work hard to ensure it persists. 💙
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Thanks for the support and I empathize with you having been through similar. You are right, I do see a therapist and really like her, she's attached to my primary care group and is a great source of inspiration and encouragement. I'm glad you are doing well ☺
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I'm not sure there's anything personal about health care. Most check boxes. The helpful few like Dr. Rachel Swart told me exactly what was ahead. This includes surgery. She reminded me I had defied all odds, and to keep true to set protocols. And, my despair is not helpful. 😘
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Told I need to avoid taking prognoses too personally. I worst case stuff. I need self discipline and getting out of my victim thinking. I truly used to be strong,at least for a good portion of my adulthood. Something slipped along the way. I just hope I can find a way to better.
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Looking at my neighbors in the light of isolation and lack of social support at least 1/3 are widowed, living alone, no visitors, closed blinds. What society have we brought forth where online media passes for human social needs, I wonder?
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I appreciate everyone's kindness. Since Ray and Mom left this world, and I caregave for them and others, I have no one to stand for, by or with me in the immediate here and now. I need someone(s) here and now. That is the only help that can help now. Ideas welcome.
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Do you understand now? There are no second opinions. I am and have been expected to die since 2013. Please stop. It's hurting my soul because it seems so simple to others. I've battled 54 fucking years of opinions. Okay? Thanks.
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The expected outcome if they do succeed will be that if nothing else gets me, I will get Hepatocellular Carcinoma (liver cancer) which is unsurvivable (NO I can't survive a transplant so just don't say it k?) and extremely painful. That would be the point to give up.
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If they can treat them, surgery can buy me time, significantly reduce probablity of future bleeds and even help my moods and physical pain and symptoms. It's dangerous but hell, I'm going to do it anyway because otherwise I still die.
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With no white cells or platelets of my own, life cannot be sustained full stop at that point. I die. That is the result. They are looking for the internal triggers of the bleeds and any tumors in the GI tract.
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The gall bladder is in bad shape too. What will now be done is look at my entire GI system mouth to anus to see what is causing the bleeds. Gastric bleeds if not stopped are deadly and sepsis sets in.
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The liver became fibrotic then cirrhotic (non-alcoholic FYI) from the massive awful going on. Not long ago I began having gastric bleeds, vomiting blood every few months. In late March they used a Fibroscan to look at the liver. It is not staged yet but appears to be 3.
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My spleen is enlarged, not working properly and sequestering most blood the remaining marrow makes. not working properly and sequestering most blood the remaining marrow makes. This rolls no over to the liver, where coag factors (abd bone marrow is made in neonatal development).
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I was in chemotherapeutic hematology until April of this year, when the FDA stopped the treatments I was on - no one had to their knowledge survived that long, no data as to the danger. My liver is a disaster. My bone marrow barely making blood.
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- my bone marrow, liver, spleen, gall bladder, GI system were all failing. They treated me (different story for a difffent day) and I was expected to die in 2014. I did. For two minutes. I came back.
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I got out of bed at 28 or so and pushed through bleeding, pain, fatigue and many other symptoms until 2013 when I collapseed in LAX. I was in full bone marrow failure. Once treated enough to send me to UMC in Tucson, tests finally revealed my "hidden disability"
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