Lady Lee
You have a PM from me
Got a question about disabilities? I have answers
by Lady Lee 99 Replies latest jw friends
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Lady Lee
The PM isn't showing up for some reason so I sent one to you.
If you don't get it go to my website and email me from there. I never post my email address on the net (it is encoded on my website)
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Lady Lee
Metatron
The raised toilet also makes cleaned easier. Where you put the bars depends a lot on the way the bathroom is set up and the proximity to the closet wall. If the toilet is close to the tub perhaps a bath handle that fits over the side of the tub would help
The problem I see with what you are describing is getting in and out of these bars. I can see a problem with the horizontal bar. If it is too high your friend won't be able to reach down to grab the pants. And upper mobility is an issue. The degree of balance and strength in the lowe r extremities would also be an issue.
It's hard to tell what would work without knowing more about the person's specific strengths and weaknesses.
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Deceived
Lady Lee
I got a PM from you but when I click on it, it says something about an ERROR?? So Pm's aren't working here obviously. I will go to your website.
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Lady Lee
you have to open it twice, Try it again and it should work
I want the new forum --- soon
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Band on the Run
I was disabled with agonizing facial with a suicide rate of 95%. Now I do legal volunteer work for a disability civil rights firm. Frankly, I only go in once a week so I see no need for more than minimal expertise. When I was ill, I assumed all these programs existed for the disabled. There are a few but they don't come remotely close to fighting stigma. My goal is to find a legal job. I was at the pinnacle of my profession. People ooh and ahh over my credentials. i am the object of pity and not job offers. Granted, I most certainly do not have the skills I would have acquired w/o illness. I most certainly know more than law students who have never practiced.
I am so disheartened. Strangely, sometimes I believe in Carl Jung's theory of synchronicity. A woman I befriended in a Twelve Step program and I recently spent the day looking at Xmas stuff in NYC. She told me of a new group she was in. I dismissed it for myself. When she mentioned it the other night, I paused and said it fits me exactly. Underearners anonymous. Not earning is underearning big time. I don't know how the program will work but I feel lighter in step.
If I had not been so near the top, the fall would not hurt as much. No matter I can't seem to escape the consequences of disability. Also, I believe that my family life growing up and exposure to the Witness culture cultivated a sense of fear of success. I remember starting an Ivy League school with a full scholarship. Several parents of classmates hated my guts for doing better than their coddled kids. It was though I was supposed to dummy up so their kids would look better. Most people supported me in expansive ways. My JW relatives constantly made fun of college students. We were idiots. Many times I thought my psyche would split. I can't please my teachers, classmates and the WTBTS at the same time.
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Lady Lee
Band
In the end the only one you have to please is yourself.
I sometimes think what a waste of all that time in school and now I can't work. But then I know I am still using what I learned and still trying to help others.
Don't give up pursuing your dream.
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Band on the Run
I had utterly agonizing facial pain for thirty years with a suicide rate of 95% or more. Coping was very difficult. Words can't begin to convey how bad it was. My father was horrific with abuse. Perhaps, there was a balance b/c my mom totally supported me. She contiually gave up things to her detriment to help me. I was very independent but tied to her b/c of abuse from my father. She actually moved in with me to help. I was very dependent. I forced myself to endure thirty oral surgeries. I have a morphine pump but opiates don't address nerve pain.
One old-time antidepressant worked but its side effects were so incredibly toxic. The few meds that help with nerve pain did not help mine. One bad factor was that I was at the very top of the legal profession when I became ill. My ilness is poorly diagnosed. Dentists keep giving me weird, terrified looks. Nothing was explained. I later learned there was no cure. They were shocked I was not dead. I went from Wall St. and the Princeton Club and St. Bart's to cringeing in front of the Family Affair building, calling a friend from work b/c I feared I would walk in traffic or gain access to a window and jump of the iconic building. Normally, I would ask the police for help but I knew I would be taken to Bellevue.
I saw so many oral surgeons, acupunturists, massage therapists, osteopaths, chiropractors, dentists and physical therapists. Chinatown was no longer about food but trying Chinese herbs. Finally, I did my own research back in the days of magazines at a NY medical library. I diagnosed myself. When I spoke with teaching hospital doctors in NY and Harvard, I was told the diagnosis was a scam. Meanwhile, I am going down the tubes. I went from the toast of the town to the bottom. People attacked me on mental health units. The book described my symptoms to a T, something no other source could. My first surgery completely erased the first pain site. My entire jaw was affected. I lost almost all of it. Surgery would remove pain at one site but not another. Finally, over the course of many years, it was contained to under my nose.
The spot under my nose would not respond. I spent countless hours in psych ers to stay alive. Also, I called priests just to have someone to talk to for a while. My mom accompanied me for all outpatient visits. My life was so good and dear after the Witnesses and my father, I truly reveled in it. How could Jesus condemn me to this? He condemned people to the Holocaust. Why was I special. The medicine was the easy part. Dealing with the political issues with doctors and catering to their egos was the hard part. They want virgin patients, untouched by another doctor b/c of liability. Finally, a very prominent and innovative doctor saw a correlation between the rotted sockets in my jaw bone and the rotted hip bones of cancer patients from chemo. I flew all around the country for help. A sophisticated blood test revealed abnormalities in my blood. Every illness in my family could be seen in the blood. I was placed on blood thinners. The pain disappeared for the first time. A couple of year of here and gone followed. Gradually, the pain free moments increased.
Facing the damage to my life was terrifying. I ended up at Bellevue outpatient. My dependence on my mom was extreme and she was not immortal. She was in deep denial concering my level of dysfunction. I insisted we get pro'l help for making the transition when she died. She tried very hard once confronted. I could not wake up like Sleeping Beauty, put on a Prada suit and go practice law. So many times I've wanted to pinch myself b/c even for Ms. NY neurotic, my degradation was extreme. The opiates meant I had to be admitted to a psych unit to detox. The local hospital had the contract for heroin addiction in Manhattan. Other patients were a collection if criminal misfits fresh out of state prisons. Several times I faced death or serious bodily injury from patients losing control and becoming violent. It may be a very small population but when they act out, watch out for your very life! A woman who razored someone's mouth to death and spent time upstate was newly released. There was an argument over air-conditioning. They had no idea how it worked. No idea of air vents, etc. She came out me with full fury. Fortunately, I befriended a prostitute who was in the crack house where the homicide occurred. The prostitute tackled her. I screeched the details to the staff so if I died someone would know. The staff told me she was harmless. Since the unit was very bad and I had world ranked doctors, her assault paved my way out of there. I threatened to have the police enter the unit and arrest her.
I am recovering today. It is quite an effort but worthwhile. I volunteer for a civil rights law firm. Altho I tried hard, I did not pass my local bar but by a small margin. Recently, I've spent hours on the phone talking to friends. One of my goals is to grapple with writing about severe pain in a meaningful and eloquent way. i feel I must have something unique to say. Several people have suggested that I represent people with disabilities. There is such a need for political advocacy. The legal field is limited. Disabled people have to be vocal. A wheel-chair sit-in is a great visual. I get annoyed with other disabled lawyers who think faxing documents to overwhelm an agency at a coordinated time is a great protest. My idea is to have pain-athons the way we have cancer telethons. Pain plagues humankind. It is worse than death. We are too complicit in our oppression.
One of my favorite political statements was one I heard from Tom Daschle, the Senate minority and majority leader who received anthrax. Trent Lott made some comments favoring (I remember every Southern Dem who was pro-seg except the one I want). Sen. Daschle thought he would not exploit Lott's political misfortune so he gave a neutral statement. Lott's comments were not overtly racist. Once Sen. Daschle returned to his office, he field phone calls from the civil rights coalition. They demanded he back away and condemn Lott. Daschle rethought his earlier support b/c he had no choice within his constitency. He withdrew his support of Lott. He was not being nice to the civil rights coalition. They were so powerful within his party he could not decline. I want that earned power from the disability movement.
I spent time in pain clinics and programs. There was no answer for me. It frightens me. Basically, I just hung on b/c I was terrified of dying. A rational choice would have been suicide. Despite supporting Kevorkian, I just could not. I always felt that was my option. Now I must live with knowing I could be brave enough to do it.
This is over the top stuff. I'd rather people be impressed by my family, career and civic activities. Perhaps I could use a ghost writer. I wrote this as I went along so it may not be the best I can offer.
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Lady Lee
Band as a fellow sufferer of pain I know how debilitating it can be. When I think I have a good day I wonder if I could go back to work. Then I am awake most of a night due to pain and realize I could never commit to even volunteer work because the pain is so unpredictable. I could tell you right now my pain is 0 and by the time I finish writing this I could be at 8. The 9s and 10s come at night. Last night it took morphine to get the pain to ease up so I could sleep.
Meds don't always work for nerve pain and what works for one person won't work for another. Heck mine work sometimes and not others. I just have to do what I can. My pain is in my feet so there have been times when I am sitting on the side of the tub with my feet in a couple of inches of cool water just to stop the burning. The fan on my feet at night is a god-send. I would be awake most nights without it.
But for you they have finally found a cause - the correct one. And it looks like you can get back to work once everything is in order Congratulations. You didn't give up and I am glad you are still here. Your experience could be invaluable to people with for the most part invisible disabilities.
You said:
I spent time in pain clinics and programs. There was no answer for me. It frightens me.
I get scared too. There is no cure for me. There is only hope that one day they can diagnose and treat small nerrve fiber neuropathy. Right now they don't even have tests for it. My fear is that it will spread to the larger nerve fibers and work its way up my legs, I know people who have erythromelalgia all over the body. At least my is confined to my forefoot with slight tinglings up to my mid calf.
See my pain level has gone from 0 a few minutes ago and I would say I am about 5 right now. Not bad enough to do anything about yet but definitely there.
I'd rather people be impressed by my family, career and civic activities
I am impressed by YOU. As one who knows it takes a great deal of strength to live with constant pain. I was going to say courage but I don't feel courageous. I just do what I have to do to get through the tough times. Be proud you made it through all that. You did what you had to do and never gave up and it paid off.
Now for the rest of your life. Live well
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Deceived
@Band on the Run
OH my after reading your story I feel that there is HOPE if we are determined. I could never deal with those pain clinics and places with those dangerous people. I am just to soft for that. I am so self absorbed in my own problems.........My own severe pain that I need to hear that I am not the only one and my situation is not that bad compared to others.
I have severe pain everyday and if I try and do anything that involves standing then it is a 10. I feel like throwing up and sometimes do if I try to do anything, even folding clothes or making the bed. The doctor I have is terrified of losing his licence so refuses to give me pain killers. There is no other doctors in my area and I had to wait 1 year to get him. I am learning to live with out the pain killers as they don't really help anyway, just make me dopey. I have severe arthritis is my back (or so they say) though I had no idea it would cause so much pain. This with MS makes it so I am not mobile which is my dilemma right now........I need to get out and do stuff.
Thank you for your story and for sharing
Paula