I need your help, please!
The Disability judge will not believe that I am disabled because I do not have weekly cleaning help, but Social Services says that I cannot have cleaning help until I am awarded Disability benefits. Catch 22.
In pursuing this with Social Services, I'm informed that In-Home Support Services (IHSS) is a Federal program, the rules are made by the Federal government, and the only way to get help is to get the rules changed.
Because there is no blood test specifically for CFS/fibro, and because the tests which demonstrate real physical problems are only available in a few places in the US (often too far for seriously ill patients to travel), it can be as much as ten years from the time a CFS/FMS patient applies for Disability and the time they are finally approved. Meanwhile, if they don't have friends or family to help, they may find themselves in the same position as I -- being evicted for being too disabled to clean and too poor to hire a professional cleaner (who may be unwilling to do anything but dusting).
Although the government believes your friends, family and church should help you, I can tell you from numerous conversations with others that I am not the only disabled person who has been refused help from those sources. They believe that you should be able to get government help. Everyone points the finger elsewhere, but no one actually does anything useful.
So, I'm asking you to please do something useful. Please write to your Congressperson and Senators (and if you don't have one because you're outside the US, write to my Senators, Dianne Feinstein and Barbara Boxer) and urge them to revise the IHSS rules so that evaluation of the need for supportive services takes place immediately when SSDI is applied for, and not as much as ten years later when SSDI is finally approved. My situation proves that in that ten years that CFS/fibro patients are waiting for SSDI, they need support services -- they can't wait years to have their house cleaned or meals prepared or assistance with bathing.
CFS/fibro are real diseases with physical causes. One expert in both AIDS and CFIDS has observed that a CFS patient feels every day as badly as an AIDS patient in the last few months of life. Unfortunately, because CFS was ahead of the technological curve in the 1980s, many disability judges still have the perception that it's fakery, and believe that the person can work, and will return to work if their application is denied. (Trust me, over the past nearly-six years, I have made repeated attempts to work, and after 2-3 days was already too exhausted to get out of bed. If I could work, I would, but the doctors say that I cannot, and so does my experience.) I've run into a series of disability judges who refuse to accept the doctors' statements, because doing so would require them to change their minds about the veracity of CFS as a physical (not psychological) disability.
As Dr. Starlanyl says, if all blood tests are normal, it may simply mean the correct tests have not been done. In preliminary results of a poll being run by CFIDS.org, fully HALF of CFS patients have never had their fatigue professionally evaluated. A Functional Capacity Evaluation wasn't done, their doctors didn't even ask questions about the level of their fatigue. The problem isn't that the fatigue doesn't exist, it's that no one is putting test results in the medical records to support the patient's claims.
Although IHSS seems to believe that right up until the day you are ruled disabled by a judge, you are capable of taking care of yourself and your home, and magically, overnight, become incapable because you're now eligible for assistance, this is not the case.
Please don't let one more CFS patient be thrown out of a dirty house she can't clean herself -- write that letter to Congress today, urging that In Home Support Services be provided as soon as they become necessary, so that judges will not make the same erroneous determination, that I do not receive IHSS because I do not need help. Although he would like to believe that I have the ability to do all the cleaning myself, which would prove that I also have the ability to return to work, my current situation proves that I don't have the ability to clean -- what I have is the inability to get needed help ... not from friends, not from family, not from churches, and not from government.
10 comments:
Look, I've tried, really hard, to believe you. I wanted to believe you. I checked your story. I've bent over backwards to see your side of this.
Still, I've "known" your for at least a decade (online only). In that time, we've both had CFS. I do know what it's like to have so little energy, and so much pain, to get sick so easily, and to take so long to recover from what should be very minor injuries. I don't need any education. I've published quite a bit about it.
I simply cannot believe, however, that your string of bad luck has absolutely nothing to do with you. I cannot believe that there are no competent cleaners in your area, or that you simply cannot find them. I've dealt with everything from full service agencies to casual laborers picked up from a gathering place (for outdoor yard work, with whom I barely shared three words of a common language. I've had cleaning services that were just a couple of friends working while their kids were at school as well as services that were local franchises of major international corporations. When I worked outside my home, I arranged for the cleaning of all sizes of offices, warehouse spaces, call centers, and the like, and dealt with the same range of janitorial services.
(continued from above)
I know too much about the cleaning business, about hiring them, working with them, and firing them, to put any stock in your tales of being absolutely unable to find even one reasonable, reliable cleaner.
There are a few possibilities left - that you haven't really tried all those options, that you've treated people so unpleasantly or so inconsistently that they weren't willing to deal with you, that you didn't abide by the agreed-upon contract (I always put things in writing whenever possible, signed by all parties), you didn't pay as agreed or argued about it, or that your living space was simply past what they were willing to deal with.
This pattern repeats itself in your tales about doctors and friends and men and jobs and so on, though, all too often. It's never your fault, no matter what happens.
You're giving up your power. You're choosing helplessness, which means you're choosing to stay stuck, and to always lose.
At some point, I do hope that you'll find a mirror in your home that's clean enough for you to find the source of all these problems, and have a good, long chat with her.
Dear Karen, I will try to write to my NJ Representatives. Now they are thinking about the race for Governor next week. I Printed out ten pages and will try to show them to others. Lots of Love, Janet Swan Collins
Comment from enemyofentropy: "I know too much about the cleaning business, about hiring them, working with them, and firing them, to put any stock in your tales of being absolutely unable to find even one reasonable, reliable cleaner."
MY COMMENT: Well... let's see. If you cannot believe that someone is unable to do housework themselves, I bet you won't believe it when someone tells you that a young woman who gets CFS at the tender age of 13 (AND gets Type 1 diabetes as well) manages to raise thousands of dollars for charity YET a simple walk to a bus stop left her so broken to pieces that she had to stop going to school and be home schooled instead. AND YET she had managed to get into UK's top university to study architecture. Unfortunately she died almost a year ago so I have no idea what she would have achieved had she lived.
You ask "What has this to do with Karen and cleaning?" Well, for starters everything. If my sister had not had our mother to rely on, she would have been IN THE SAME position as Karen. And frankly, FYI, enemyofentropy, I have have spoken many times with Karen, and when someone is so ill that they don't even realise that they've fallen asleep on the phone and you have to shout down the phone to wake them up again then I know that they are seriously ill. So you want that sort of person to do ironing?? Do you??
Frankly speaking, enemyofentropy, you do NOT know what you are talking about if you must hide behind a mask and you don't even dare to tell your name. Oh and your rantings of dealing with cleaning people, right, instead of ranting on about Karen, use your contacts to find her a suitable cleaner, or is that all just a white lie to hide behind. Frankly if I were able to move to the US NOW, Karen will have already found herself a cleaner that's reliable... eventhough I am partly disabled myself.
And there are some words for you, enemyofentropy... "shut your gob up"
Comment from enemyofentropy: "You're giving up your power. You're choosing helplessness, which means you're choosing to stay stuck, and to always lose. At some point, I do hope that you'll find a mirror in your home that's clean enough for you to find the source of all these problems, and have a good, long chat with her."
MY COMMENT: If Karen is giving up, I wonder why she started a self-empowering yahoogroup and website!!!!!!!!!!! She is no loser and I learned from her long ago to never give up. If I did not have Karen as a FRIEND I would be overdosed on anti-depressants FIVE years ago and to be very frank I would have committed suicide a couple of years ago when the world fell apart around me. But Karen was there as a friend when I lost my business and she was there as well when I lost my sister of only 22 years old (the one with CFS). Karen listened to me for 5 hours and I probably made her ill for days afterwards but she didn't care about that. She only cared about me. For someone who has problems, she is a damn good listener... I just hope you are as well... whoever you may be.
But as they say... you get what you give to others... and Karen gets my support, my love... and she's like the older sister I never had. I would gladly keep her company and chat to the gals we see in that oversized mirror... we'd have a good laugh at those sods who think Karen is a quitter... she ain't and frankly if you try telling her she is, she'll probably tell you to go "F*** OFF" or similar... or I'll do it if she won't... LOL
Karen, loads of hugs from me because you know you got ONE TRUE FRIEND over here in the UK...
Nathalie
Dear Karen--(and others)
I am really sorry that there are some people who speak badly about someone before they know what they are talking about.
I have know Karen for longer that both of us care to admit--and she has helped me through bad times and celebrated my good times. She IS NOT LAZY- I really think that is funny. I feel sorry that we don't live closer together--otherwise she wouldn't have a cleaning problem because she would be living in my house. My girls are both lucky to have her as an adopted 'aunt'. I know good things will eventually come to Karen because she deserves them.
Mary
Karen as lazy? Pull the other one, it has bells on. I claim staus as the oldest friend of Karens- Since 1971 I believe it was, when I was in 6th and she in 7th grade. She can out dance, out think and >definately< out talk anyone she meets. Well...she used to be able to outdance them, before the CFS hit. And outthink- ever ask her what her rank was in High School? But now she can't think straight all the time, when the syndrome fries her circuits.
Out talk- or write- she can still do. :o)
And from what I have read here from her other friends, she can out listen when you have a problem too. So before you dare try to analyze her and start lobbing accusations, why not learn the facts of this damn disease and the struggles people with it have had. The most insulting being accusations of laziness and of being unwilling to work.
Frankly I think if she hadn't developed CFS 10 plus years ago she might be holding a congressional office in California by now. Which if you know me (and she does) is a REALLY scarey thought!
JoAnn Abbott in VA+
I don't think Karen is lazy, and I barely know her. I have Lyme Disease, although we (doc & I) thought it was CFS for a while, so I do know where she's coming from. I didn't feel like fighting with disability after my first attempt, but I was lucky that I can rely on my husband's income. Having people call you "lazy" is probably the worst part about this DD. I'm blessed that I'm getting better, but it's a slow crawl, and I just wish I could help Karen.
BTW, if you haven't already, Karen, try Catholic Charities. I have a friend that was homeless at one point (before I knew her) and she said they were the only ones who would help her...and she's not Catholic. Not sure what else to try at this point.
I consider Karen a close and dear friend and I know her about as well as anyone in this town. I therefore believe that I speak with authority regarding her character and the effects of her medical condition in her daily life.
I know Karen to be a kind, caring and giving person. She was/is a productive member of the community and has volunteered and served more than most people I have met. Even while holding down a full time job. This has changed over the years, not because she is lazy. It's not in her nature to be lazy. I have witnessed her physical decline over the years. As her energy level dropped, so did her ability to keep such an active schedule.
Gradually, she began to lose energy. What she could do all day became a chore to do once a week. Imagine having energy to work for 12 hours at a time without a break and slowly you found that working 8 hours with frequent breaks wore you out. Then, you wake up one day to discover that you feel fine and 2 hours later you collapse in exhaustion. This is what has happened to Karen in the last six years!
People have taken advantage of that situation, as with her latest houseguests. I can tell you that her house was left in far worse condition after they left than before they got there. They repaid her kindness by creating the condition that eventually got Karen evicted. Then, as if ingratitude and abuse weren't enough, the "friend" caused the events that led to the building inspector coming to her home and viewing the mess that her "friends" left her.
I can tell you that all of the things that Karen has said about her condition and her eviction are true.
And yes, I am biased.
MY NAME IS TE AND I AM FROM INDIAN ND HAVE BEN LUCKILY-DIAGNOSED-WIUTH CFS/FIBROMYALGIA/AND MS..I SAY "LUCKILY" BECAUSE IT VALIDATES ALL THE ACHE SAND PAINS I SUFFER DAILY-TRYING NOT TO DEPEND ON PAIN PILLS-AND BEING FROCED TO TAKE NAPS ALLMOST EVERY AFT FOR A FEW HOURS JUST TO REST UP AND AHVE ABIT MORE ENERGY. I AM BLESED MY 20 YEAR OLD SON LIVE STA HOME WITH ME AS HE IS BETWEN JOBS AS HE HELPS TAKE TRASH AND STUFF OUT.. I AMBLESED THAT I HAVE A ROOM MATE SINCE 1998 SHAWNEE WHO IS ALSO LIKE A DUAGHTER TO ME AND HELPS WITH HOSUYE HOLD CHORES-ON TOP OF WORKING 5-6 NIGHTS A WEEK!
NO SHE IS NOT LAZY!
NO SHE IS NOT A LIAR!
I SAY THIS BECAUS EI KNOW HER AND BECAUSE I GO THRU DAMNED DAYS OF ACHES AND PAINS...
I HAVE FOR QUITE A FEW YEARS AND I AM ONLY ABOUT 49 YEARS OLD.. KAREN IS PRECIOUS TO ME..
YEARS AGO SHE HAD ALOT OF ENERGY- WORKING FOR PROSECUTORS OFICES, HELPING PEOPLE WITH DIF PROJECTS, BEING IN CONTESTS FOR HER CORSS STITCHERY AND SUCVH..
I HAVE WATCHED THIS VIUBRANT FULL OF LIFE "SISTER" SLOWLY DETERIOATE!!!!!!!!!!!!!!!!!!!!!!!!!!11111 IT HURTS ME VERY MUCH.....................SHE SELDOM HAS ENERGY TO EVENM EMAIL ME ANYMORE..YET SHE MANGED TO SEND A BD CARD TO SHAWNEE LAST MONTH AND I KNOW SHE'LL MANGE TO SEND ONE TO ME..BECAUSE SHE IS A LOVING CARING PERSON WHO HAS AN UNGLY DIESEASE..
DONT EVER CALL HER A LIAR..
FOR WHEN YOU DO-
YOU ARE CLALING ALL THE REST OF CFS SUFFERES- DIAGNOSED AND INDIAGONBOSED SUFERES- LIARS TOO AND TRUST ME-
YOU DONBT WNAT TO DO THAT..
UNTILL YOU HAVE WALKED A MONTH IN OUR MOCCASINS-
DONT EVER PRESUME YOU THINK YOU KNOW WHAT YOURE TALKING ABOUT...
YOU WHO DARE JUDGES...
TEE
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