Foggy's "Invisible Illness" Support
3,273 members • 430 posts

A Little Venting is Good

So much pain... no movement is pain-free so can I just sit here in my power wheelchair and never move?... Guess not! 😕 Thirty some years ago and 28 doses of radiation for cervical cancer and now I'm struggling with all this pain. And not just pain... I'm certain that each leg weighs 20# because to walk is like dragging my body around. I decided this year, on my 64th birthday, I'm done with trying. Sitting in the wheelchair for the rest of my life feels better than trying to walk. Polyneuropothy, Plexopathy.. Funny sounding names for a whole lotta pain and weak legs. The meds do little; Lyrica helps me feel happier about my condition. Percocet takes the edge off, barely. All and all, we must keep a positive attitude about our conditions.. after all, there are people much worse off. Sometimes I wonder where they are, but I'm sure they're out there. I miss dancing and gardening the most. And Venting is therapeutic. Thank you.

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You seem to be a little worse off than me, but I can think of someone worse off than either of us: My sister. She's going on 75. She has been disabled all her life. She was born two and a half months premature in 1941, and just shoved in a corner of the hospital nursery to wait for death. No incubators or anything in those days. Her amount of prematurity was assumed to be lethal. To everyone's surprise, she lived, but she has severe cerebral palsy. She has never walked, and her right arm is semi-paralyzed, and her vision has always been horrible, but she is intelligent and articulate. She went to college in a wheelchair and graduated with honors, and she holds a master's degree. She has lived independently up until last month, and hopes to return to that, but I fear she never will. Five years ago, she fell and injured her best leg, the one she had used to pivot on to transfer from wheelchair to bed or toilet. Since then, she has had to use a ceiling mounted lift next to her bed and in the bathroom. Also, her very poor eyesight has been failing further, and she is now very nearly blind. She can see just enough to peer at an enlarged virtual keyboard on her computer and tap out posts on Facebook, which is the main way we communicate with her. We can't phone her, because the jangling of the ringing phone aggravates a cerebral palsy related startle reflex and nearly sends her into a seizure. Instead, we message her and ask her to call us. That was her status as of Labor day, but the day after that, she went to the emergency room because of severe jaundice, and soon had a diagnosis of pancreatic cancer. She was discharged from the hospital to a nursing home, and may never be able to return to her apartment. The nursing home has proceeded to mess up the scheduling for her testing for the cancer staging, and in addition they won't let her have her computer, and of course, not her cat, either. She will only be allowed $50 a month for personal expenses, and her cell phone bill is $50 a month, so she may have to give that up as well. She is not a good candidate for surgery, so they are going to do chemotherapy and radiation. I've been through that myself, at the age of 62, and it was devastating. I don't know if she can handle it at age 75 and in poor condition to begin with. To make matters worse, ignorant people, including medical personnel, have always had a tendency to treat her as retarded (when she was younger) or senile (now that she is older), but she is neither. She is one of the most intelligent and insightful people I have ever known. She has always been my hero and my role model, but I fear that all this may finally overwhelm her. My own discomforts pale in comparison.

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Thank you for your reply. I can see that you love your sister very much and are very proud of her accomplishments. She sounds like an amazing woman! Some people seem to be born with a drive that enables them to achieve so much in spite of their limitations. I think I've just been through too much and at this point in my life, I'm tired of fighting back. Not that I'm ready to throw in the towel, but just not willing to do the work to get any better.. especially when the doctors have doubts that I can/will get better. My brother, who is 73, was just healed of pancreatic cancer but he was able to have surgery then chemo. I hope that your sister can make it through the disease and be able to return to independent living, which is what we all want.


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