My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

Total Pageviews


Thursday, June 16, 2011

Bad day, pity party.

I was at the dental clinic today. I had a root canal done, part 2. It was not bad. (I am always surprised. The whole process is not bad or painful, absent the shot of novacaine - talk about ironic, the thing that hurts the most is what is used to take away the pain.) Even though I no longer have the touch induced pain of the tn I do have anaesthesia dolorosa (painful numbness). My main fear is of being touched on the left side. The numb is unpleasant but, even after 12 years of no triggered pain, my mind still carries the fear.

Being there and talking about the costs of the procedure with the dental student (she is a dentist but a resident in endodontics - she and faculty keep telling me that when I insist that faculty come check her work: after all in a hospital, the surgical resident is an M.D. but he is also a student. He never does anything big wthout the attending double checking his work. This, to me, is no different. She did a good job btw, I thought so and so too did her faculty advisor dentist.)leaves me feeling despondent and angry - at myself and at my life.

I never expected to be poor. I travel an hour each way to get to the ckinic because it is the closest to me that costs the least, but the least is not little. The root canal was $250.00, less still than many other clinics much less a private doctor. The crown that I should get will cost an additional $350.00. Between the 2 that is almost one full month's disability income.

I hear the $350.00 number. Inside I start to cry. I do not have that kind of money. How in the world did I get here? I think, sobbing inwardly. My siblings are all doing well, to my knowledge. I know for sure 2 of them are. The third probably is. Had they ever acted like family I could go to at least one of them for help.

My mother tried to leave me extra money when she died. She told me "I know your sisters and brother will not help you so I am leaving you a stock market account." After all, they had not been there for even one of my surgeries.

My father would not lend me money for air fare to get to a surgeon in California, (a surgeon recommended by my neuroopthalmologist in Phila. I went to a couple of states for operations/procedures but they were all recommended through Dr. Schatz or other surgeons after they operated on me. It is funny, even writing about going to California my first inclination is to defend it, making sure you know I was not doctor shopping.) He told me to call my brother. For some reason he told my father he would lend me the fare.

David and I had not talked in years. I called him anyway, not having any other option. "Charlie (that is what I called my father) told me to call you and he said you were willing to lend me money to get to California." "Oh no." he said. "To do that I need to talk to the surgeon first and besides I meant money for a psychiatrist."

I was not going to let him talk to Dr. Wilson, the surgeon. After saying "money for a psychiatrist" I had no idea what he might say to him to try and convince him not to operate.

Another time, after I lost one of the implants to an infection, I needed to go home with an IV port so I could give myself intravenous antibiotics. The doctors told me I should not go home alone without anyone to help me. Thinking when push comes to shove, family will come through, although I should have learned something from history, I called one of my sisters.

"I have this IV and need to not be home alone. Is it possible I could stay at your house for a few day, maybe slightly longer." "Oh no." she said "Why don't you just go to a convalescent home?"

When they learned of the money my mother left me they got a lawyer to make sure the money did not come to me. There were other issues involved: I did what I was asked to do for my mother when none of the others had even visited her. I saw the severe psychiatric state she was in. I was asked by the trustee of my father's estate to find placement for her because they could not keep her in the rehab hospital for more than 3 days when he called. There was no time to call the others and try to work this out together. A place had to be found quickly.

I went with an RN friend to 10 residetial care communities. I found one that was nice. It even had a dog thast visited the patients everyday. My mother would love having a daily dog visit.

She arrived at the center and I stayed there for about 6 hours for the first 3 -4 days to make sure she really needed to be there. Her behavior and demeanor proved she needed to be somewhere with active nursing care.

The trustee told the family where she was (I think. At this point I truly do not remember how they knew.) When I came to visit the first day they were there my mother was in even a worse state. Each time they visited the nurses told me their visit was terribly upsetting to her and they had to give her extra medicationo to help calm her down. This went on for a number of days. Then, one day, I came to visit and my mother was gone. Without telling me they took her out of the facility, against the advice of the doctor's there and her private doctors.

While she was there I tried to get her declared financially incompetant, and only financially. I had found signed blank checks in her home. Some were made out, in different handwriting, to 2 homecare aides who had worked for her. The only problem was that the check was listed in the memo space as being for salary for work during the time she was in the hospital and they were not doing work for her. I did not want to see her lose, or possibly have stolen, all her money or she would have nowhere to go.

The response from my siblings was to have their attorney tell me they would sue me for the extra money my mother left me. The only way they would not do it was if I dropped the competancy claim. If, and only if I did that, they would make sure she had competant nursing care.

What could I do? I dropped the claim.She needed to hsve someone take good care of her. Which brings me back to today.

I could have continued fighting for the money. Had I done so there would still be money left so I would not be on the verge of poverty, (My income is way below poverty level. I own a home, which is a whole 'nother story that, because of lies and what appears to rise to the level of fraud, may take what little money I have left to fix; and lose me money if I have to sell it. The irony is I bought it for equity.)

When the pain started I had to be on assistance until I could get disability. I was lucky I had worked long enough to have paid sufficiently into the system to qualify. Being on public welfare was humiliating, embarrassing, devastating.

I never thought that at the end of the line I would be back there. I get food stamps and help with my heating costs. No one helps with dental unless you can find a clinic, or have a family that can help you.

I know my story is not unique. It is just as a girl growing up in upper middle class suburbia this is one scenario I never saw for myself. I went to college, worked during college and after, and expected to have a working life, financially capable and able.

Becoming disabled is not my fault. I know that, usually. But then the thoughts come. If I didn't have the tn, if I had a family who would act like one (they actually found another sister for themselves. We are half siblings who grew up together and the half part was never talked about - the father we grew up with was biologically mine, not theirs. One day, after all of this, they went out and found their other half sister with whom they had never had contact and made her, and her mother, no blood relation to any of us, their new sister and mother, if, if, if. And so I write this post today.

I am not going to reread it, I will post it and maybe decide another day when I am not so overwrought by it all, to delete it.


  1. Don't delete it. I think there are lots and lots of disabled people who are living with similar problems with family.

    I have had my own family issues, mostly with my brother, but my parents are making decisions I do not agree with and that will leave them financially worse off. They will have to continue to work, even though they retired some time ago because they have chosen to carry two mortgages so they can move. I think it's absolutely crazy and mourn for the time when they will need to stop working or need this money and not have it and wonder if I will be expected to take care of them when I am myself disabled and unable to work.

    I think your post is important and something you should save.


  2. Chelle, Thank you.
    That is a big load to carry for you, and them. I hope your concerns about it do not increase the stress, increasing the physical issues.
    I think I will (save it).