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Frustration hits all-time high!


littlemaya
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Hello --

I've been dealing with several stressful situations all at once, for several years now. None of them ever seem to be resolved. The story of the Octumom, of all things, has brought everything to a head for me. I can't stop thinking about this story as it relates to my life.

I just turned fifty-five and my husband and I have been married for 32 years. It is a good relationship. We were not able to have children, and IVF was not an option when we were looking for help. I honestly feel that we would have considered ourselves blessed if we had had one child. So, I am envious of what this woman has been able to accomplish. At the same time, I am angry with her for not being happy with six kids.

Secondly, I have been taking care of my husband for the past fifteen years. He has had four strokes. Because he is able to bathe and dress himself, he does not qualify for in-home care. Yet he is not always able to think for himself, so I have to be on my toes 24/7. On top of that, one of his strokes robbed him of 50% of his vision, and one of them robbed him of his ability to talk.

Eleven years ago, I was diagnosed with a condition called ankylosing spondylitis. For the past two years I have been in constant pain. I continue to function by taking several rest periods during the course of the day, and by pushing myself beyond exhaustion to take care of my many responsibilities.

I had to give up a job I loved because no doctor would take my symptoms seriously until it was too late. Since then, I have been denied social security disability twice. I have been denied state health insurance twice. I am not even interested in cash benefits. My goal is to return to a healthy, productive life. The way to achieve this goal is by having access to decent medical care.

Now, concerning the stories floating around with regards to the Octumom -- if even half of it is true, something is very wrong with the way the State of California prioritizes its resources. This woman is receiving cash benefits with regards to the health of three of her children. Now, I don't begrudge her access to medical care for these children, but what is the rationale for the cash benefits? These children won't be required to work for several years. As an adult, I am expected to earn a living. I can't do that because I can't get the medical care I need.

If I were given access to state health insurance --nothing more -- for a period of one year, there is an excellent chance that I could get my health issues under control. Post-surgery, physical therapy, pain management support, I would be able to support myself and my husband. But I have been deemed unworthy of this kind of aid.

How does the Octumom spend the $2500 a month she is receiving for having children with speech delays? Apparently, the money is going to plastic surgery. It is certainly not being spent on the well-being of her children.

This woman has lied to receive food stamps. She had enough money to undergo several IVF procedures, but not enough to feed her children? Why isn't she being made an example as to what happens to people who commit fraud? Women all over the state are having children they wouldn't otherwise have because of all the benefits parents are entitled to. And now, a whole new crop of people are getting the message -- being a parent is a way to get by when nothing else is working.

There has to be a way to care for these children born of irresponsible behavior in a way that doesn't throw deserving people without children under the bus.

How do I come to terms with the fact that things are just so blatantly unfair it makes me want to tear my hair out?

Thank you.

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Hi littlemaya & welcome to our Community!

I had to give up a job I loved because no doctor would take my symptoms seriously until it was too late. Since then, I have been denied social security disability twice. I have been denied state health insurance twice. I am not even interested in cash benefits. My goal is to return to a healthy, productive life. The way to achieve this goal is by having access to decent medical care.

Do you not claim any of these on your Husbands behalf, with him being Disabled? Do you not Claim Carers Allowance, Attendance Allowance or any benefits, to look after your husband?

You want to call their bluff & tell them that you can no longer afford to stay at home, looking after your husband on what bit of money they pay! Tell then that your Financial situation has forced you to go looking for work, & if you cannot claim any money to help you assist with your husband & his needs, then they are going to have to start thinking about arranging home-care to call & visit him to care for his needs, stateing that it will not be down to you to foot the bill, but them. Which in the long run, could work out a lot more expensive than just giving you the benefits which you are entitled to, with caring for your husband?

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I think I understand what you're saying.

Part of my problem revolves around the issue of leading a life of integrity. I want the government, as well as other factions of society, to do the right thing by me. I don't want to have to lie, throw tantrums, or do anything that goes against my belief system in order to get what is fair and just.

I know that this is an idealistic approach to life but I'm not prepared to give it up. I am probably too old to do so, anyway.

I would really like a professional to speak to the issue of dealing with the inequalities in life. What is the best way to come to terms with a society that, more often than not, rewards all the wrong people for all the wrong reasons.

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I would really like a professional to speak to the issue of dealing with the inequalities in life. What is the best way to come to terms with a society that, more often than not, rewards all the wrong people for all the wrong reasons.

Have you not got a rights advice service, over there in the States? Anywhere which can give you advice on any of the Laws & your rights?

Here we have CAB (Citizens Advice Bureau) Which gives you details on the Laws & your rights, which inc: everything!

Does your Goverment not have any Offices that you can attend, or any Departments that you can ring to ask for information on these issues?

Sorry but with the UK Laws being different to the American Laws, I cannot help you, sorry! But don't give up though!

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Maya,

You've done a very good job of explaining your situation in relationship to "Octomom" (great term by the way - I've not heard that before) and your reaction to your many challenges is palpable. Mostly I think you are expressing anger and outrage at the "injustice" of the situation, for instnace:

- she has children where you were not able to have them

- she is getting benefits she doesn't need and is not spending appropriately whereas you cannot get benefits you need

the other side of the coin is that you are a caregiver for your husband who is dependent on you and that is *very stressful* for you. You have no respite you've described. The weight of the responsibility is on your shoulders and you seem to be a person who takes such duties very seriously. People who do that (take duties seriously) often imagine that there is a social contract that justifies their behavior - I act in the right ways and in return I get treated in the right ways. Only in your case, you are acting in the right ways and you are not getting treated right in return. Not by Nadya/Octomom (who it is easy to get angry at) and not by your husband either (who it is much harder to get angry at because he cannot help his dependency on you). Finally, I suppose you could be angry at the universe for your medical condition, the infertility that continues to be a wound (which is very normal by the way - infertility is very difficult) and for the situation of your husband's dependency on you. Certainly you are angry at the crazy bureacracy of the state.

lots of anger and no where to put it! But its not anger that comes from nowhere - it's anger at perceived injustices.

I don't have a fix for any of this, but I can read what you've written and sympathize. It's a difficult situation.

I guess if I have a question for you it is "what do you do for respite - for taking care of yourself" becuase it is impossible to do all you are doing and not have some time for yourself and feel okay about yourself. A little selfish time is important, necessary even, in order to be able to give like you need to give. Are there any support structures in your life that help you carry these burdens you carry? Anyone you can talk to?

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I guess if I have a question for you it is "what do you do for respite - for taking care of yourself" becuase it is impossible to do all you are doing and not have some time for yourself and feel okay about yourself. A little selfish time is important, necessary even, in order to be able to give like you need to give. Are there any support structures in your life that help you carry these burdens you carry? Anyone you can talk to?

In the past three years every member of my family has moved out of state. When my sister left last June, I didn't take it very well. She had no idea how abandoned I felt, however.

And part of that is my fault. When people ask how I am, I tell them that everything is fine.

I appreciate your response. If you can sympathize with my situation, having never met me, then there must be someone else out there I can open up to. It's up to me to find that person.

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Guest ASchwartz

Hi littlemaya,

Welcome to our community. I second Mark in empathizing with your situation, hurts and frustrations.

I gather from your answer to Mark's question about respite, that you really get no respite. It is going to be important for you to work on this. I do not know about your illness and in what ways, other than pain, it detracts from your life. However, there are some respite types of things you might be able to do or think about doing.

1. Psychotherapy: You really need to speak to a professional, a clinical psychologist or clinical social worker who has experience in working with people struggling with physical problems.

2. Listen to soft music, particularly the type that includes natural sounds, like rainfall, ocean waves, forest sounds, etc. You can find these types of music under the "New Age" music category.

3. Meditation is enormously helpful, including in dealing with and even reducing the sensation of pain. There are many self help books on this topic and, even better, if you could sign up with a meditation group at your local community center or "Y" you could learn all about it and how to do it.

These are just a few ideas and I want to invite you to look at our self help section on this web site.

Suggestion: I have no idea how you went about applying for disability but I know from experience that a successful application often has more to do with How it was done than whether it is Deserving. So, you may or may not have done this already but:

1. Enlist your Medical Doctor in helping you apply for disability. He needs to submit factual information that medically justifies your disability.

2. Your husband should be on disability and he qualifies for home health aids so that pressure can be taken off of you.

3. Enlist the help of a Licensed Clinical Social Worker, perhaps from the local hospital social service department, in helping you apply for disability.

4. I would urge you to see a psychiatrist and not for the sake of a phony application but a real and honest disability application based on the very, very true fact that you are suffering from enormous stress and post traumatic stress disorder because all that has happened to you. You deserve disability but you need more help in applying.

I hope you remain with us because writing here is a kind of respite and you will get lots of support.

I am interested in your response to my suggestions.

Allan Schwartz, PhD

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Hello --

I would like to thank Allan, Mark and Paula for your responses. They mean a lot to me.

I will try to respond to all of your questions, suggestions, and concerns. You may have opened up the flood gates. If so, I apologize in advance.

I do not have a doctor. At one point, I was on a program that aided the medically indigent. I saw a number of county doctors, approximately once a month, over a period of three years. The expectation of decent, caring medical attention never materialized. At some point, that realization, coupled with the fact that I could no longer physically make the effort to comply with the many rules and regulations required to remain a patient, led to my decision to go it alone.

I use stretching, moist heat and music therapy to help alleviate pain. I can't afford anything else at this point.

Pain is the major symptom of my condition. Because it involves the entire back, the neck, and back of the head, it is quite overwhelming. In my lower back, I have one bulging disk and one that has been shattered. In my upper back, I have several compression fractures. I suspect that I have a herniated disk because, for about a year now, the pain has been radiating into my right arm. The arm is becoming weaker and weaker through lack of use. I suffer from tingling and numbness in all of my extremities. I have shooting pains in my feet. I have back spasms on a regular basis.

My husband is in fact on disability. He was awarded disability for a heart condition in 1997. Since then he has been diagnosed with COPD, diabetes, and sleep apnea. He had one stroke in 2005 and three more in 2006. He is on Medi-Care.

Since moving back to California in 2004, I feel as though I have requested help from every county agency possible. When I talked to In-Home Services regarding getting help taking care of my husband, I was told that as his wife, I was responsible for his care. I wrote them a follow-up letter explaining the entire situation once again, in case there had been some sort of a miscommunication, but I never received a reply.

I don't have any interest in filing for disability a third time. I had an attorney on the second go-around, and that didn't help. The judge's remarks in the denial letter told the story. Things I had said at my court appearance were purposely misunderstood, and sometimes twisted beyond all recognition. It was implied that I was exaggerating my symptoms, and even lying to get benefits that I did not deserve. It was even inferred that my doctors were not reputable. I have no intention of subjecting myself to that again.

I have not looked into therapy, but agree that it could be helpful. Since we are living on a fixed income, I have assumed that the county (if they will even agree to help me) will offer me the same level of care I received for my physical complaints. But I'm willing to look into it.

Thanks again for your concern.

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Guest ASchwartz

Hi littlemaya,

Give the county a try in terms of psychotherapy. You never know. They may have some good people working in mental health.

What do others have to say about littlemaya's situation?

Allan

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Hi Littlemaya-

I don't have children & never especially wanted them but what little I know about "Octomom," (I love this term, too) disgusts me. :mad:

Don't let her idiocy cause you more emotional pain in your life. I think it is a great idea for you to check out psychotherapy options for yourself. Whoever you get as a counselor doesn't have to be Sigmund Freud to be able to offer you some support and an outside viewpoint to help you keep your life in some kind of perspective.

Please remember that you are fortunate to have a good marriage. So few people have that these days. I, myself, am unmarried and am challenged with loneliness a lot. Don't take this to mean that I am saying you don't have it tough--you sure do, but don't let your challenges blind you to what good there is in your life.

Once you establish a relationship with a counselor, this is something he or she can help you with.

Good luck, Littlemaya & please keep us all posted as to how it's going. :(

Catmom

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Thanks, Catmom. How many cats do you have? I hope they bring you the kind of comfort that my dog brings me. I honestly think that animals are God's greatest creation.

I haven't forgotten what it was like to be single and I know that it really sucks sometimes. So I appreciate your comment about counting my blessings.

I've already made a call and discovered that I have to wait six weeks for an appointment. In the meantime, you may see me on this board responding to other issues.

I sincerely hope you find the right person to help you share your journey. It takes a little longer to find a delightful companion, but it is well worth the wait.

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Hi again littlemaya-

I have 2 cats, a tortoiseshell named Opal (because she is such a jewel) and Mike (brother to Pat who died rather young a couple of years ago :) ) They were "Pat and Mike," after the title of a Katherine Hepburn/Spencer Tracy movie by the same name.

However, the apple of my eye is my little dog, Emma, a two year old Papillon. She is very bright & is my constant companion when I am not at work. In fact, if I have to come into work on the weekends (I am an administrative RN at a nursing home), I bring Emma with me. The patients just adore her. :cool:

She has her "Canine Good Citizen" certificate from the American Kennel Club. She earned this designation after taking two obedience classes and showing that she has a good temperment around new people, situations, etc.

I would be a much more lonely person without the companionship of my furkids.

Catmom

P.S. Keep us up on how you're doing, littlemaya. I know it's a long wait for your appointment but it will be worth it to get the help you need. C.

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Hi there and welcome to the community. my heart goes out to you and you husband. Itmust be absoluetly draining on you , to care for your husband and yourself suffering from illness.

I do live in california and have experience with the State of Califorina, and Social Security. I have a disabled child who is developmentally disabled . He has been on SSI since the age of 3. I was able to apply ob his behalf and he recieved benifits the first time around. I also have SSDI due to my health conditions.

I read that you have tried twice for yourself. My SSDI was approved on the reconsideration level. What my experience has taught me is first, having plenty of medical docuementation from many different resources. ALL the doctor visits, hospitalizations, ER visits, 5150's.... And everything that did not seem important at the time was. This will prove your claim to be severe enough that DDS can not dispprove A claim. Also it is very important to have the medical doctors support your claim of diabilty. Go to both Physical and Psychological doctors. Social Security looks at ALL the evidence provided by medical professionals and how your illnessess effects your daily living. Be as specific as possible, and do not forget even the slightest difficulties your having. THey are not as concerned about the diagnoses given, but how it effects a persons daily living. AND the severity of the illness in a person's "daily functioning"

It is important not to start a claim over, but to fight a claim though all the steps. I believe that SS wants a person to finally give up on their claim and not go through the next level.

When the claim is first denied which most are, then the Reconsideration, most are denied too, next it is time to get a Lawyer. The process can take up to several years to win your case.

I hope your husband is on disability too. By what you have written he is eligible too.

THen your husband will be elegible for in home care support services, if he is on Med-cal. If not Medi-cal he may get it by having to pay a co-pay . In home support services is offered through your local Social services department. You can hire your own person, and the Stae pays them to houseclean, cook , clean, drive to medical appointments , ect. That is extremely helpful, and will take some of the "burden" off your hands"

If he can't walk or is blind there are also medical vans that transport the disabled to medical appointments, and pick bring them home.

My son and I have in home support services and the extra assistance is very helpful.

I'd definately fight for your social security benifits and continue to do so until you win!

THere is a fantastic group that can help you further more regarding Social Security. It has recently moved. Social security disabilty coalition /google groups. It will help you. Everyone on this site is fighting for benifits too, and there are important links and feedback.

I am pissed off about the woman who had 8 babies too, there are not a lot of people who support what she has done, and feel the same way as you do. It is not fair for these precious little babies , and to already have 6 children:( Something is very wrong with that woman!

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Guest ASchwartz

Hi All,

I want to respond directly to some of the comments about Octumom. She has stirred a lot of controversy and anger in the United States and in my opinion that is understandable. However, what I and many others have asked is how could her doctor have allowed this to happen. Remember, her doctor allowed her to take fertility drugs so that what they both did was deliberate and conscious. There is something wrong with that picture. If I understand correctly, the doctor is being investigated. Let us hope so.

Secon, I want to address the unfairness of life. There is no question that life can be terribly unfair. One person is not able to have children and another has twelve. One person is healthy and lives to 95 and another gets a dread illness and is dead at age 20. Why?

We don't know why and there is no answer. All we can do is try to get as much out of our own lives as we can and not allow ourselves to drown is self pity and resentment over our lot in life.

I personally do not believe that the Lord wants it this way or that there is a plan or purpose. In my opinion, life is just this way and what we need to do is learn to use what we have rather than moaning about what we do not have. Believe me, I have seen people with terrible disabilities who refuse to be held down and live life to the fulles they can. The idea is to aim for what these people do. I know its not easy and seems like a "pat comment" to make but I believe we need to do such things as "smell the coffee, smell the flowers, breathe the air deeply, enjoy the differences in people and laugh at life."

What do you think?

Allan ;)

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