What I am Looking For From You // Who I Am

Anonymous

Hello,

The moderators suggested that I open up more, so here it is. The semi-abridged, semi rough-cut story of my life and cancer.

I was never in denial, yet due to the lack of communication or action from my 'gene pool' and mom/their behaviours, I don't feel like I ever had cancer. It was just another illness, like a bad cold. My 7 year cancerversary was 6/7, and it may be back.

I do not like to talk about the past. My family was extremely dysfunctional. I was the parent to my parents and my sister was their child. It looked good on the outside. I was different, physically from birth. My mom wouldn't look at my club feet/legs when I was born. I had 15 years of casts, braces, PT and special shoes. I was a quiet, very underweight brain, and did not know how to fight back...I want to forget it and move on.

I am seeking to connect with others that are in the same boat as myself. I know I am not the only one on the planet in this predicament. I want to know what other single, broke, unemployed, alone women are doing, share resources, ideas and be supportive.

I could tell you stories about unprofessionalism from the doctors and psych support that would make your toes curl. My cancer was poorly handled from the get-go and my mother was extremely uncooperative in my trying to access care where I wanted it and would have support.  For the most part, she ignored the fact that I had cancer and my existence, to the point where I recently cut her out of my life for good.

In the year before I was diagnosed, I buried my MIL, aunt and father, after what my ex made a bad, expensive divorce. I moved 4 times in three states in a year and he stalked me. The police were useless from the beginning..The Prosecutor's Office was even worse. I have PTSD from that, and from cancer. Doctor's that were told how to handle me--they ingored it. I was a square peg and did not fit in the round hole that they kept trying to shove me into. That is when, for the first time in my life, that I began to put my foot down. I no longer trust them.

I was waiting to hear from the Court the night the surgeon called and dropped the bomb while I was driving. I was railroaded into the OR, given 24 hours notice and booked for 6 days away, before my MRI where they found more cancer, thus the procedure changed. I found out later that it was because he was going on vacation. I had to cancel a desperately needed trip 'home' to Greece, for the fourth time in two years. I changed my trip, but wouldn't start chemo or let them touch the other side until after my return--in mid October. That pissed off a few people.

As for help, I always fall into some crack. I know how to shake the trees, my first Master's was in Public Admin for NPO's.

The gene pool was another story. What was maddening was that I was always there for everyone else, my job from childhood. Two relatives that married into my dad's family died of cancer--their kids and spouses knew what it was like.

I took myself for treatment most of the time--drove myself, busses, trains, taxi's, and even an Angel Flight in iffy weather, a week post-op.The TRAM story and driving 180 miles home nine days post-op, including an emergency surgery, makes doctors' jaws drop.

Fighting for Disability for 2+ years and paying a law firm $5,300 to get it, but not before I had to give away my two beautiful cats, foster my dog out, put almost everything in storage, move in with mom and she did not want me there, my car went and I had to spend 2+ hours on several busses to get anywhere, in the winter, in the Adirondacks, while on Tamoxifen, paying for all of my expenses to her, except rent, and a couple months on welfare. Historically, mom was a bitch when I needed surgery, etc. She didn't know how to be a mother, especially to adult children, because hers died having her and she was kicked around in her youth. Neither of my parents had effective parents because they didn't.

The long and short is that I was forced not to work, in order to receive treatment, beginning in 2007. Three years later, in 2010, I am cleared to return to work, but there were no jobs. Plus, the progression of pre-existing conditions, aging and from cancer treatment. My onc said some people bounce back better than others. I didn't have emotional or financial support, had many, many major losses in the few years before diagnosis.

I'd had three breast surgeries in my 20's. I was a patient of someone's from the day I was born because I inherited the bad genes. My parents were in medicine, I had a lifetime of hearing about their day at the dinner table, they had chronic conditions, and I worked in post-grad medical ed.

So, who am I? I do not identify myself as a disease. I have a LinkedIn profile that tells a little--my education, positions held, interests. I need to be around sun and water, reminiscent of the best days of my life--summers at a nearby lake and not being picked on. 

My passions are pets, plants, photography (gone now), and people/cultures. I read non-fiction. I love bright color. I can get by in four other languages. I have lived all over the US, lived abroad once, have always wanted to return, and have traveled a lot. I am a life-long learner and loved college towns. After my second stint in grad school over the past four years, I am disillusioned about academia today and do not want to return. I would be happier going back to non profit organizations and doing something 'happy'.

I learned at 5 to count on my pets, especially my dogs for unconditional love and comfort. I am very bright and have many interests. I miss my global lifestyle. My Disability does not cover even my most basic needs. My car was totaled by a repeat DUI in Dec. 2012, and I will never see my restitution. The car-job-housing situation is a vicious cycle. Friends are either dead or we have gone our own ways in the past five years.

I never wanted to end up like my mother, living on SS. I worked my butt off going to school over and over. Everything I worked for and saved is gone. I don't want to spend another 46 years like this. I'm the living dead. Don't go out or do anything because I can't afford it. Always struggling to keep a roof over my head. Can't afford to go to doctors and take all meds. A lifetime of being bogged down with medical bills and student loans. Two ex husbands that made out well, at my expense, and destroyed me financially when I filed. The last one even dognapped my Sheltie, that was in training to be a therapy dog. I couldn't have kids due to medical issues. That was like taking one of my kids.

All I want is a little place of my own, with a yard for my pets and plants. To be able to do things again and have a few good friends. But, to get there, I need a car to find and go to a part-time job to earn the money I need to pay rent in a decent place--no roommates, no rat hole towns with no social or intellectual life where alcohol is the entertainment. Not interested in men or dating. 

I don't feel sorry for myself, and I do not want pity. I've seen people a lot worse off than me. What's done is done. I just want to move on. I am at the end of my rope in looking for work, being able to find decent housing, and having a car again. So, I am reaching out one last time.

Nancy

Lily55

Nancy I get you!  My dogs are by far the most loyal to me........I wish I could say more but I´ve had a really stressful day with low resources and am well on my through a bottle of organic red wine, despite rarely drinking normally as part of my anti cancer health kick so I fear I may ramble and not make sense. but I did not want to leave your post withoout responding..................................as for the dognapper, that is plain cruel and mean and karma will get him...........soon I hope.

I am glad you reached out and sorry i am not in better shape to respond to you.............xxx

exbrnxgrl

bluepalace ,

I am so sorry that you find yourself in this situation. You've definitely had a rough go of it. I know you have developed a lack of trust in many professionals, but are there some social services that can help? Is your cancer tx facility, or the American Cancer Society a possible source of help? Forgive me if I'm being naive, but there's got to be something out there for you. BTW, I grew up in the Bronx, not far from Westchester Co.

Anonymous

Hello,

Almost impossible to get help, even now...and when I said I know how to shake the trees, I mean it.

I have Medicaid and an MAP. Counseling co-pays are $40/session. Specialists are $50 this year. Meds doubled or quadrupled. PCP doubled. You just get poorer. I also really need someone at the Ph.D. level for counseling due to lifelong health problems, genetics, etc. Mental illness still gets the short end of the stick and is still stigmatized, like cancer. Look at how many 'living dead' are coming back from the Middle East. They're worse than the ones from Vietnam. And they come back to a country built on democracy after trying to defend human rights globally...only to be hung out to dry. They are our future. Very sad.

If I had a dollar for every time someone told me "you are not our typical client", I wouldn't be sweating next month's rent. And if I had another dollar for everyone that just helps young, single mothers, I'd have an old station car. Don't get it. Was responsible, good student, started working at 13 (farm work papers--picking apples after school), F2F grad school at night while working for SUNY and for a while traveling 40% of the time, and I put plenty into the system. Yet, it's the squeaky wheels that get the grease. I was raised to work and pay for what I wanted. So much today is help for those that never put a penny into the system and never will.

I loved my dad and was his little mother, office assistant, etc. but he could be a piece of work. He was from the Bronx--222nd St between Bronxwood & Barnes. Went to Evander Childs. We were only allowed from one end of the block to the other, on the same side of the street. Coming from 'the country', it was scary...the bars, the el...we didn't have street lights, sidewalks, walk to shopping...didn't lock the front or car doors. A totally different world. My grandparents left with my uncle's family in 1975.

sheila888

bluepalace...Sorry that you're going through all these unpleasant  & difficult staff to deal with

Why don't you call Legal Aid of Westchester in White Plains.....They might be able to help you with some of your issues

If you have Medicaid..I.don't understand why you have to pay Co Payments  

You can also get in touch with CHOICES in New Rochelle which they help  people with MH issues that varies from depression or anything related to MH

Are you still living with your mother ?

Did you ever thing to apply to some kind of housing where you can get some help/

I can't relate to all your problems but wish you well

If you're in need you should be getting some type of help and Legal Aid might be able to help you

Hugs

Sheila

Anonymous

Sheila,

I am way past tx. Ended 2010. Another two years trying to find out the real reason for pain, other problems, etc. after I moved to metro Philly and was able to get back into academic medicine.

I do not live in Westchester County. I grew up there.

I shake the trees wherever I go. Help is usually elusive.

I have Medicare now.

I lived with my mother for 15 months of hell from before my temporary alimony ran out until my Disability finally started and I was able to buy an old car then find an apt. complex that was pet friendly.

See the article in the NYT about the woman that left her job to care for her mother, and the comments. She's toast. The US is so ageist. The EU is not. Yeah, after you blow through your assets, sell your jewelry, etc. then can't get a job, you are condemned to a lifetime of poverty. Nobody will be there to help you. If I had kids, I wouldn't do that to them.

When is the US simply going to guard its borders and let countries that have had a different lifestyle for ages live their own way. Nobody listened to Eisenhower. Kids can't get decent educations, adults can't get jobs, access to healthcare, affordable housing, food and transportation. Yet, we're taking care of everyone else.

Or the celebrities are. It's their money to donate, but they made if off of us. Take care of your own first. Oh, that's right. Many live abroad where life is better. I did once, but can't go back due to health insurance issues.

Those with money swoop in, get an education, then leave. US citizens can't afford to pay exhorbitant tuition but foreigners can and HEI's are more than happy to take their money and keep making access unaffordable to Americans.

 

sheila888

bluepalace...I'm not sure what is it you want anyway I'm deleting my post because your header and your reply don't make any sense anymore

Good Luck with your life

Sheila

exbrnxgrl

blue palace,

I get it that you are, and have been, going through a rough time. Whether on this thread or some of the others you've started, many have made suggestions to you and I hope you pursue some of them despite your previous experiences. I do think your bitterness toward those who you believe have not contributed to society but "work the system" as well as your ethnocentric attitude toward immigrants or temporary residents, is not doing anything positive for you, and your energy would be better used to focus on yourself. Not being judgmental, and I understand things have been tough, but take your energy and direct it toward yourself, not resentment toward others. I hope someone else will be by with practical suggestions that work for you. I wish I could offer you more.

Anonymous

Thanks Lily

I wish I could drink sometimes. My body can't handle the sugar in alcohol.

Karma hit my ex for a while, but now it's better. Good, old 'Teflon Don'.

Anonymous

I have my moments and sometimes I do get bitter. I have not watched the TV news for years and am down to skimming the on-line headlines of The NYT.

I am not prejudiced. I know rejection from the inside out, starting within my dad's family toward my mom, me, and other non-purebreds in the gene pool. I've had four years of graduate global ed courses where we examined ethnicity, SES, etc. under a strong lens. I grew up with friends and neighbors from all cultures and countries. I do not blame 'the other'. I blame those that should be helping at home, whether it be govt or some overpaid athlete, movie star or singer.

I merely made a comment on the direction this country is going. The US is the only country bankrupting itself and the future generations will suffer. Mine already is. I have enough military in my gene pool that has served since the later 1800's. I was married into the military  back when women were expected to run the show at home and in the unit so DH's could focus on their career. I gave up my career and everything and had to start over after I filed. Another lengthy, expensive process because he was insecure.

The soldiers coming back cannot get the help they need for TBI's, PTSD, finding work, education, a place to live, etc. Some end up in jail because of how they have been conditioned to expect the worst. 85% of the female vets are homeless, and many have been assaulted by their comrades, including my sister.

My favorite Eisenhower quotations on the subject, that have played out--

~ “We merely want to live in peace with all the world, to trade with them, to commune
with them, to learn from their culture as they may learn from ours, so that the
products of our toil may be used for our schools and our roads and our churches
and not for guns and planes and tanks and ships of war.” 

~ “I like to think that people in the long run are going to do more to promote peace
than our governments.  Indeed, I think that people want peace so much that one of these days governments had better get out of the way and let them have it.”

~ In his Farewell Address, Eisenhower stated “As we peer into society’s future, we –
you and I, and our government – must avoid the impulse to live only for today,
plundering for our own ease and convenience the precious resources of tomorrow.  We cannot mortgage the material assets of our grandchildren without risking the loss also of their political and spiritual heritage.  We want democracy to survive for all generations to come, not to become the insolvent phantom of tomorrow.”

~ “No nation’s security and well-being can be lastingly achieved in isolation but only in effective cooperation with fellow-nations.”

~ “Every gun that is made, every warship that is launched, every rocket fired signifies,
in the final sense, a theft from those who hunger and are not fed and are not clothed.  This world in arms is not spending money alone.  It is spending the sweat of its laborers, the genius of its scientists, and the hopes of its children.  The cost of one heavy bomber is this: a modern brick school in more than 30 cities….  This is, I repeat, the best way of life to be found on the road the world has been taking. This is not a way of life at all, in any true sense….”

~  “A nation’s hope of lasting peace cannot be firmly based upon any race in armaments but rather upon just relations and honest understanding with all other nations.”

~  “… This would be a declared total war, not upon any human enemy but upon the brute forces of poverty and need.  The peace we seek, founded upon decent trust and cooperative effort among nations can be fortified, not by weapons of war but by wheat and cotton, by milk and wood, by meat and timer and rice.  These are words that translate into every language one earth.  These are needs that challenge this world in arms.”

~  “We are so proud of our guarantees of freedom in thought and speech and worship, that, unconsciously, we are guilt of one of the greatest errors that ignorance can make – we assume our standard of values is shared by all other humans in the world.”

~ “The problem with defense is how far can you go without destroying from within what
you are trying to defend from without.”

~ “Though force can protect in emergency, only justice, fairness, consideration and
cooperation can finally lead men to the dawn of eternal peace.”

~ “Together we must learn how to compose differences, not with arms, but with intellect and decent purpose.”

~ “We will bankrupt ourselves in the vain search for absolute security.”

Sorry if I offended you. There's nothing like sitting on a sweltering bus and listening to a group of teen girls telling another to have a baby and that 'he govt pays for everything'. No, the rest of us pay, and can't get help when they need it. The loss of my being a productive citizen able to use my brain and skills to contribute to society is quite high. I would not be wallowing like I am today if I had the same help that is offered to others.